Travelling With a Spinal Cord Injury

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Authors: Sharon Jang, Dominik Zbogar | Reviewers: Duncan Campbell, Janice Eng | Published: 16 November 2022 | Updated: ~

Key Points

  • Many people living with a spinal cord injury (SCI) enjoy travelling, though with additional considerations.
  • Consider your sitting tolerance, accessibility of the location, and transportation when selecting your destination.
  • When packing, pay special attention to your medications and potentially wheelchair parts.
  • When flying, your plan will consider selecting a flight with/without layovers, how you will transfer in/out of your seat, and access to the washroom.

Having a SCI should not stop you from travelling! Many people living with an SCI enjoy travelling, but there are additional factors to be considered when trip planning. According to one study, people with SCI spend more time planning trips in comparison to able-bodied individuals as they require more time to verify information found online. Some of this information includes destination, hotel/accommodation, transportation, and SCI specific information. For example, hotel rooms listed online as accessible were found to not always be accessible (e.g., they may have a step to get in).

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When planning a vacation, the first step is to choose a destination. Your destination may be based on attractions you want to see, accessibility of a location, or how far away it is from you. The distance you need to travel is important to consider as the further you go, the more sitting you will have to do. When selecting a destination, think about how long you are able to realistically sit comfortably for. If you can only sit for a couple of hours, perhaps a driving trip may be more appropriate as it allows you to take breaks whenever you want. If you are able to handle long periods of time without requiring pressure relief or stretching, then a longer international flight may work for you.

This set of stairs was the only way in from a large tour boat to a Brazilian village. I could have stayed on the boat and just waited for the group to come back, but the ship crew were very willing to carry me, and with a little direction as to where and how to hold and lift we pulled it off – not without a few shaky moments, but overall very well done! I found in many settings which were used to tourists and travelers that the staff involved were very helpful and happy to help.

Duncan’s Experience

“As you travel more, you start to realize that a given region or country can have common characteristics which can affect your travel. Examples are that Brazil has very thin bathroom doors. In Kenya the hotel may have entrance stairs, but they also have guards at the door who are more than willing to lift you up the stairs. In Thailand most bathroom doors are simply the same size as all other doors and many of the bathrooms have a showerhead in the wall and the whole bathroom is tiled, i.e. the shower is not enclosed – instant wheel-in shower! In China the national airlines have very little knowledge, experience, or facilities for people with disabilities. This is only the tip of the iceberg as cities and countries can have their own unique travel characteristics, but one thing that came to light through all my travels was that people in general and especially people in the travel industry can be very helpful.”

Health concerns

Travelling with SCI can come with additional concerns around health. If you are worried about health concerns that may arise, talk to your SCI physician and ask if they know of any specialists or specialized medical centers in the area you plan to travel to. In addition, take a look at whether there are any hospitals/larger medical centers around your travel destination. Be sure to check if your health insurance is accepted at your location of travel, should a medical issue arise.

Wheelchair maintenance

It may be beneficial to look into medical equipment repair shops at the travel destination in case your wheelchair requires maintenance or repairs, or if spare parts are required. Where such a repair center may not exist, the best alternative is to find a bicycle shop. Many of the parts are interchangeable and they are usually very helpful.

Power assist

If you are using a manual chair, a power assist device may be worth considering as long distances and rough terrain can surprise you when travelling. Another device to consider is something called a FreeWheel which allows a manual chair to travel on much rougher terrain, such as cobblestone, grass, and gravel. It is also easily transported.

Refer to our article on Wheelchair Propulsion Assist Devices for more information!

After you have selected a destination, think about where you will stay when you arrive. Hotel accessibility is important to consider to make your stay comfortable. When picking accommodation, think about your needs and how they may be accommodated. Some things to consider when selecting a hotel include:

Whether a power chair or a manual chair (as pictured here) know how wide your wheelchair is at its widest point.

  • Shower needs: Does the hotel have a roll in shower? If not, are there rooms with a handheld shower?
  • Mobility needs: How wide are the doorways to the room and to the bathroom? Can the bathroom door be removed? Is there carpet? If so, how thick is the carpet? Will you be able to roll on it?
  • Transfer needs: What is the height of the bed? Can the bedframe be removed if it is too high? What is the space between the bed and the wall? What is the height of the toilet in the bathroom? Can you get on the toilet? Is there space to transfer onto a toilet?
  • Assistance needs: are attendants charged full price for an extra room? Are there adjoining rooms?
  • Transportation: Is there accessible parking? If taking public transit, is public transit located close and is the route to the stop accessible?

The standard width for interior doors can depend on the country and will usually range from 711-914 mm (28-36 inches) though older buildings may have doorways built before standards were established.

In the USA, standard toilets are 15-16 inches whereas ADA (Americans with Disabilities Act) compliant toilets are 17-19 inches from floor to seat.

If you are ever unsure about a room, ask the hotel staff to view the room prior to checking in to ensure that it meets all of your needs.

Once you arrive at your destination, you will need a way to get around. When you arrive at the airport, some airports have private shuttles that are accessible. However, it is important to note that the definition of “accessible” varies greatly, so it is best to call the company directly to ensure it is accessible to you. For travelling around town, some countries may have accessible public transit, which may work for you. Other individuals might consider renting an accessible vehicle. If renting a vehicle is the way to go for you, ensure you call the car rental agency well in advance to ask if they have an accessible vehicle (e.g., one that has a ramp, hand controls) and reserve it. Not all rental companies have wheelchair accessible vehicles ready!

Travel cushions

Another type of equipment to consider is a travel cushion. These are typically small, lightweight making them easy to travel with. You do need to try different cushions before travel to find the one that works best for you. Any cushion used for travel or time outside of the wheelchair should be assessed by a therapist to ensure appropriate pressure relief is being achieved.

The Varilite Zoid is another air cushion that is like a camping mattress.

The ROHO LTV Seat Cushion is light and easy to put into a bag.

The ROHO Low profile single compartment Cushion is also light, foldable, and washable but unlike the LTV requires a pump to manage the air.

The Purple Portable Seat Cushion may be a good option for those with incomplete injury as the pressure relief is not as good. They may be fine for car cushions or on other equipment such as lawnmowers.

The Vicair AllRounder 02 Activity Cushion is used by many for sports and outdoor activities with the attachment that clips onto the body. Others just use the cushion part for car seats or airplane seats.

 

Duncan’s Experience

Europe is much more developed, and easier to navigate, but we ran into a small glitch when we decided to take the train through northern France to Champagne.Some trains had access methods, but some did not. This was one of the trains that did not so we and the train staff decided the best option would be to load us into an empty baggage car. It was actually pretty comfortable as we could move around. C’est la Vie!

 

 


Be prepared for some unorthodox transfers if you want to do some unique things like fishing in New Zealand (Left image).

Always keep an eye on your equipment, you never know where it might end up! Typical taxi in Mombasa, Kenya (Right image).

Packing for a trip can be stressful! On top of your clothing, shoes, toiletries, and other typical travel items, you may need to pack other additional items such as medications and medical supplies.

Medications

When travelling, be sure to pack enough medications for the entire duration of your trip. If you are prone to certain illnesses, such as urinary tract infections, you might want to consider bringing a dose of antibiotics with you for a trip – consult your doctor on this. However, for all of your prescription medications that you pack, make sure that you have them in their original bottle with the dosage and medication name on it. Note, the liquid limit when flying does not apply to medications. Also, do your research and ensure that all of your medications are legal in your destination country and any other layover countries you may stop in. For example, cannabis is increasingly used to treat SCI-related pain or spasticity but is prohibited in many countries.

Packing a carry-on

If you are flying, your carry-on should contain everything you need for 2-3 days in case your luggage gets lost. This includes clothing, medical supplies (such as catheters), and medications. When packing your carry-on, think about what items you might need during your flight. Keep these items easy access in your carry on, in case you need someone to help you access them.

Spare wheelchair parts

If you are flying, it is a good idea to pack spare parts that could break or get lost in travel. For example, items such as a spare tube, cushion cover, or a compact tire pump should be considered. Some individuals prefer to fly with their own tools to make adjustments to their wheelchair after a flight. However, some tools may appear as weapons when you go through security, and may be confiscated. If you would like to pack your own tools, consider packing cheaper tools, and declare them at security.

Valuables

In tourist towns and port cities there are more thieves, and they will steal from you whether you have a disability or not. Keep your passport, credit cards, and money in a safe place like a travel pouch on your body.

Flying with an SCI requires special consideration at each step, from booking the flight, to getting on the plane, to getting off the plane. Below we review the process and considerations in each step of flying.

Contact the airline

The airline will always have the best, most up to date information.

Contact them well in advance to ask about their services and ensure they can arrange appropriate staff and equipment to assist you. Some questions to ask the airline include:

  • Policy on attendants – some airlines will offer free or discounted flights for attendants. Note, some airlines may require a doctor’s note or pre-registration with the airline medical desk.
  • Policy for baggage – with some airlines, luggage that consists of mostly medically necessary items will not be charged a baggage fee.
  • Whether or not they can accommodate your wheelchair – does your wheelchair have a battery? If so, is it allowed on the airline? Will your wheelchair fit through the cargo door?

Booking the flight

Connecting flights

When booking flights, consider the length of the flight and whether having connections would be a benefit or hinderance for you. If you are unable to sit for long periods of time, you may want to consider travelling to a destination with a shorter flight time, or one with more connections. Having connections in your travel may allow you to use the washroom and change positions to relieve soreness/pressure, which can improve your overall comfort when travelling. If you do select to travel with connections, keep in mind the time required to get from one gate to another in a wheelchair, while also requiring time for comfort after a flight. In general, the time required to make a connecting flight should be double the time suggested for able bodied individuals. For longer over-seas flights, consider breaking up your travel into multiple days – try finding a connection in a city you’d like to visit! Although connections have their benefits, they can also lead to some issues, such as getting your equipment/luggage lost or damaged.

Choosing a seat

Similar to connecting flights, the various seat selections on a plane each have their pros and cons, and is based on preference. Some individuals may prefer a window seat as other passengers will not have to climb over you as much. In addition, the window seat may provide some privacy for personal care tasks such as emptying a catheter bag. However, wheelchair users from one study reported that window seats may require a more difficult transfer that can lead to pain, and makes accessing the toilet more difficult should you choose to use one. This is why other individuals may prefer sitting in aisle seats, as they are easier to transfer into and access the washroom (no passenger to climb over), but you may have other passengers needing to get by you. If you are worried about the transfer, around 50% of armrests on a plane are designed to lift up to facilitate transfers. Ask your airline about this if you are interested in a window seat!

The amount of space a seat on a plane has is another consideration. Seats on some airlines can be small and cramped. This may lead to discomfort and decreased circulation. In combination with sitting for long periods of time, decreased blood circulation may increase the risk for swelling, especially in the legs. If you can afford it, some wheelchair users from an interview study preferred seats in business class, as there was more space for them to move around and seats were able to recline enough to help maintain posture and weight shift. The seats at the front of each section (bulkhead seats) may be ideal for some as they offer more legroom and space to transfer, but they are also harder to transfer into as the armrests do not lift up, and there is no accessible spot to store a carry-on bag.

Dressing for a flight

Avoid wearing denim as the pockets may dig into the skin after sitting for long periods of time.

On the day of your flight, try to wear comfortable clothing. Avoid clothing that have back pockets (such as jeans) as they may lead to pressure sores. In addition, avoid clothing that is restrictive. However, do consider wearing compression socks to help with swelling if this is something you experience.

Security screening

Security screenings for individuals using a wheelchair can be cumbersome. The process may be longer for wheelchair users as in some countries, the wheelchair and cushion will need to be swabbed, and you will receive a pat down. When going through security, some things to advise the security officer include:

  • Your level of ability (e.g., are you able to stand, take a few steps, lean forward in your chair?)
  • Things that may be attached to your body (e.g., an intrathecal baclofen pump, leg bags, drains)
  • Any parts of your body that may be painful, hypersensitive, or lacking sensation.

To facilitate this process, check for rapid-access programs such as Transportation Security Administration (TSA) prechecks (Nexus/Global Entry), disability notification cards, or TSA Cares.

When boarding the plane, you will usually be the first to board. This allows you extra time to transfer to your seat and to get comfortable without the pressure of other passengers waiting in the aisle behind you. Ask the airline about the boarding procedure, as it varies per airline. In general, you will remain in your wheelchair and travel to the door of the plane in it. You will then be transferred into an aisle chair. To facilitate the transfer, ensure you know how to guide the transfer through providing clear, verbal instructions to the airline staff. If you are unable to transfer from an aisle chair into your seat, some airlines have specialized slings that can be used to transfer you into your seat. Similar to the aisle chair, you will need to express your needs and guide your transfer from your wheelchair into the sling. The airline staff will then move you to your seat while you are in the sling. Once in your seat, take your wheelchair cushion and any removable parts off your wheelchair, and check that your wheelchair has a gate check tag on it. Make sure that any parts that stick out from your wheelchair are taped to the wheelchair or held in. Also, consider attaching a set of instructions on how to turn on and off a powered wheelchair circuit and how to operate it when the battery is not engaged. Remind the airline staff that your wheelchair will need to go under the plane for the flight. While you are getting settled in your seat, remember to:

  • Smooth out clothing to avoid pressure sores
  • Check any bladder equipment
  • Put anything you need access to during the flight under your seat

Remember to do pressure relief

During your flight, remember to adjust your sitting position (weight shift) to alleviate pressure from sitting for an extended period of time. To address pressure, some individuals may choose to sit on their wheelchair cushion, which is designed for your seating needs in comparison to generic plane seats. However, participants from an interview study noted that sitting on your wheelchair cushion may add height and boost you up, making it harder to reach in-flight entertainment controls or the call button. In addition, being higher up make make it harder to brace yourself on the arm-rests for balance if you need the support. If you are considering using an air-filled travel cushion, be aware that it can become firmer while you are flying due to air pressure changes and may need to be adjusted.

Deep vein thrombosis

(DVT) is caused by the formation of a blood clot in a deep vein, most often in the legs. Often, clots will dissolve on their own. However, it is possible that a clot can break off and travel to the lungs causing a blockage known as a pulmonary embolism, which can be fatal. The risk of DVT exists (with risk increasing the longer you are sitting still) for those who have underlying risk factors such as decreased mobility. Talk to your doctor about the risk for blood clots before taking your trip and whether you would benefit from preventative treatments such as medications and compression stockings.

Going to the washroom on the plane

Lavatories on airplanes are small, awkward, and it can be hard to transfer onto the toilet.

Using the washroom (lavatory) on an airplane can be a pain – from transfering out of your seat, to maneuvering in a small washroom space. Some individuals use strategies to prevent the need to use the washroom on the plane. These include:

  • Watching your liquid intake the day before, but not witholding fluid for longer flights
  • Avoiding caffeine and alcohol 48 hours before a flight and while in flight
  • Using the washroom in the airport before you get on the plane
  • Using pads to help with unexpected leakage
  • Using an overnight catheter bag (which is larger), and draining the bag into a water bottle. Some flight attendants are willing to empty it into the toilet for you.

If you do need to use the washroom on an airplane, be prepared to have to do a tight 180 degree transfer from an aisle chair to the toilet. You may require assistance from a flight attendant to help you get to the washroom, transfer to the toilet, and to return you to your seat.

Autonomic dysreflexia (AD)

The risk of AD is not increased by air travel per se but experiencing it during a flight can be more complicated due to difficulties with moving around the small flight cabin and lavatories. The most common trigger of AD is a full bladder. A full bowel is also a common cause of AD. If you have experienced AD, be familiar with your triggers and take steps to reduce risk before your flight by performing your bowel routine before going to the airport.

Refer to our article on Automatic Dysreflexia for more information!

Landing

As the plane begins to descend, remind the flight attendant that your wheelchair is underneath the plane, and needs to be brought to the door upon landing. During the decent, individuals with limited core function may have some difficulty bracing themselves in the seat. One participant from an interview study explained that it felt like their “body wanted to fling forward”. If you find yourself in this situation, some ways to stabilize yourself in the seat include bracing yourself against the seat in front of you, or hanging onto the arm rests. Some individuals also opt to use a chest strap/abdominal binder to help support their position in the seat during landing.

Deplaning

When getting off the plane, you will be the last to go. You will be transferred off the plane in an aisle chair or a sling, and your wheelchair should be waiting for you at the door of the plane. If your wheelchair is not there, it is suggested that you do not leave the plane. This is because while you are on the plane, it is seen as an immediate concern. This is opposed to leaving the plane without your wheelchair, as it becomes a baggage handling problem which is associated with delays and inconveniences. In the very rare case that your wheelchair gets lost, immediately talk to an airline staff and file a claim before you leave the gate you landed in. Most airlines will loan or rent you a wheelchair to use in the meantime while they locate your wheelchair. However, it is emphasized that lost wheelchairs do not occur often!

Baggage

You can ask other passengers or airline attendants for help getting your luggage off the baggage carousel. You can also request airport staff or porters for assistance in moving your bags to your next connection though in some countries you are expected to tip for this service.

An app is a program that is installed on your device. Mobile apps (i.e. apps you use on your mobile device) are a powerful tool for making travel easier.

Map apps

Perhaps the most useful overall, are apps that let you access maps and directions, specifically Google Maps (Android/iOS) and Apple Maps (iOS). These apps connect you with trip planning across modes of travel, include public transit schedules, and information about local businesses. Google Maps provides elevation data for many locations. There is also an “Accessible Places” feature in Google Maps which prominently displays wheelchair accessibility information.

Airline apps

Airline apps make it easy to book flights, check in, check for delays, and store your boarding passes. Some apps also let you to request disability assistance.

Public transit apps

Apps of public transit organizations will provide more detailed information, including specific accessibility information about that transit system, above and beyond the schedule information than you will find in Google Maps.

Accessibility apps

Accessibility apps provide information on accessibility of locations around the world. However, most are quite limited in the scope of what areas are covered. Two more popular options include Wheelmap (Android/iOS) and iAccess Life (Android/iOS). Remember too that Google Maps includes accessibility information.

Travelling is still possible after SCI! However, planning a trip may require more time and effort. This article attempts to provide you with as much information as possible about travel with SCI and it is likely not everything will apply for any single trip, so it may be simpler than you think! Travelling by car allows flexibility for rests and stops, while travelling by plane requires careful planning for boarding and disembarking, going through security, and using the washroom on a flight. Regardless, the world is still your oyster – get out there and travel!

It is best to discuss all treatment options with your health providers to find out which treatments are suitable for you.

For a review of what we mean by “strong”, “moderate”, and “weak” evidence, please see SCIRE Community Evidence Ratings.

Byard, R.W. (2019) Deep venous thrombosis, pulmonary embolism and long-distance flights. Forensic Sci Med Pathol 15, 122–124. https://doi.org/10.1007/s12024-018-9991-9

Centers for Disease Control and Prevention (2022, June 9). Blood clots and travel. What you need to know. https://www.cdc.gov/ncbddd/dvt/travel.html

Craig Hospital. (2019, November 22). Air travel tips after an SCI or BI. https://craighospital.org/blog/air-travel-tips-after-an-sci-or-bi

Davies, A., & Christie, N. (2017). An exploratory study of the experiences of wheelchair users as aircraft passengers–implications for policy and practice. International Association of Traffic and Safety Sciences Research41(2), 89-93.

Dhanjal, M. (n.d.). Top 5 tips for planning wheelchair-accessible vacations. 180 Medical. https://www.180medical.com/blog/tips-planning-accessible-vacation/

SCI Forum. (2011, March 8). Travel after spinal cord injury: Finding your comfort zone. Northwest Regional Spinal Cord Injury System. https://sci.washington.edu/info/forums/reports/travel_2011.asp#report

Souza, R. (2017, October 5). 10 tips on how to take a long-haul flight with SCI. Christopher and Dana Reeve Foundation. https://www.christopherreeve.org/blog/daily-dose/10-tips-on-how-to-take-a-long-haul-flight-with-sci-guest-blogger-rodrigo-souza

Spinal Cord Injury BC. (2018). Your Accessible Travel Guide. https://sci-bc.ca/wp-content/uploads/2018/08/accessibletravelguideweb.pdf

Spinal Cord Injury Ontario. (n.d.). On the road again. https://sciontario.org/support-services/info-insights/living-with-an-sci/travel/

Image credits
    1. World Map – Abstract Acrylic ©Nicolas Raymond, CC BY 3.0
    2. Duncan’s Experience. Brazil
    3. Hotel Macdonald Edmonton Alberta 1a ©WinterE229 (Winterforce Media), CC0 1.0
    4. Modified from Disabled people set Free Vector ©Macrovector, Freepik License
    5. Wheelchair accessible taxi lift platform new farm park new farm ©John Robert McPherson, CC BY 4.0
    6. Zoid seating system ©ZoidTM 2021
    7. ROHO® LTV Seat® Cushion © Permobil 2021
    8. ROHO® Low Profile® Single Compartment Cushion ©Permobil 2021
    9. Activity Cushion Vicair AllRounder 02 ©VICAIR 2022
    10. Portable Seat Cushion ©purple 2022
    11. Duncan’s Experience. France
    12. Duncan’s Experience. New Zealand
    13. Duncan’s Experience. Kenya
    14. Medication ©Made, CC BY 3.0
    15. Luggage ©Llisole, CC BY 3.0
    16. Modified from Hand pump ©Oleksandr Panasovskyi, CC BY 3.0
    17. Hex tools ©b farias, CC BY 3.0
    18. Belt by Eucalyp from Noun Project
    19. Booking a flight online ©cottonbro, Pexels License
    20. Modified from charter flight ©ProSymbols, CC BY 3.0
    21. Empty row of airplane seats ©Jonathan Cutrer, CC BY-NC 2.0
    22. Jeans (Jean-ius Class on Craftsy) ©Kelly, CC BY-SA 2.0
    23. Airport Security. SCIRE Community Team
    24. Boarding Aircraft. SCIRE Community Team
    25. Sling Transfer. SCIRE Community Team
    26. Sukhoi Superjet 100 lavatory ©SuperJet International, CC BY-SA 2.0
    27. Landing plane ©barurezeki, CC BY 3.0
    28. FedEx – Federal Express (Morningstar Air Express) Boeing 757-2B7(SF) C-FMEP 904 (9741592213) ©Lord of the Wings, CC BY-NC 2.0
    29. Google Maps icon by Icons8

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.

Adapted Driving

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Author: Sharon Jang | Reviewer: Lisa Kristalovich | Published: 6 July 2022 | Updated: ~

Key Points

  • After spinal cord injury (SCI), many people are still able to drive.
  • In order to return to driving, an in-depth driving assessment needs to be conducted by a driving rehabilitation specialist or occupational therapist.
  • There are many different types of modifications that can be made to a vehicle based on your needs and limitations.

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Wheelchair on beachBeing able to drive is an important skill that is helpful for day-to-day activities. Research has shown that being able to drive is related to many benefits, such as:

  • Improved happiness with life
  • Decreased depression
  • Increased access to health vehicle services in the community
  • Increased engagement in daily activities, such as running errands
  • A greater sense of independence

In addition, research has found that driving is associated with being able to work post-SCI. After SCI, one of the biggest barriers to working is a lack of transportation. Being able to drive on your own can address this issue, and promote working.

Many people can still drive after SCI. One study noted that many people with a C4 injury or below are able to independently drive. Although a formal driving assessment is often required before you are able to drive, some positive signs that you will be able to drive again include:

  • Stable SCI – there are no changes to your function
  • You don’t need narcotics to control your pain
  • Good vision/corrected vision
  • Controlled muscle spasms
  • Ability to transfer on and off a toilet

Research also shows that tetraplegics are able to drive as well as able-bodied individuals but have slower reaction times. Nonetheless, many people with SCI are able to drive.

Before getting on the road again, a formal driving assessment is often done by an occupational therapist or a driving rehabilitation specialist. During these assessments, the specialist will go over your medical history, driving history, and goals for driving. In addition, they will evaluate many aspects of your health and functioning, which include the following:

Vision

The specialist will assess if you are seeing things correctly with a vision test.

Physical abilities

Many aspects of your physical abilities will be assessed, including:

  • The strength and amount of movement in your limbs for controlling the vehicle
  • How much are you able to rotate your head and neck to check for vehicles
  • How quickly you are able to react to other vehicles, pedestrians, and other objects on the road (i.e., your reaction time)
  • Balance, which is used for getting in and out of the vehicle and being able to sit still while making turns
  • Hand-eye coordination
Cognition

Driving requires a lot of focus. Some tests will be done to evaluate how well and fast your brain is working. Some of these include:

  • Memory, which can influence remembering the rules of the road and navigating the road
  • Visual processing, or how fast you understand and interpret what you see happening on the road
  • Visual spatial abilities, or being able to identify where things are on the road and judging their distance
  • Visual perception, or your brain’s ability to make sense of what you see
  • Attention, which is required for paying attention to the road
  • Judgement and decision making, which are used in cases of knowing when to go/stop, when to switch lanes, etc.
Mood/behaviours

Mood and behaviours may also be evaluated during an assessment. Some traits may be red flags for driving, including being overly anxious on the road, being impulsive, and being highly irritable.

After you find out what kind of equipment you need to adapt your vehicle, you must learn to use it to drive in a safe manner. Driver rehab provides training and supervised practice using your newly modified vehicle. Some topics that may be covered in driver rehab include:

  • How to use your adaptive driving equipment or perform different driving techniques
  • Cognitive strategies to address issues with memory, attention, etc.
  • Visual strategies to address perception, sight, etc.
  • Anxiety management
  • A reintroduction to the driving environment

Often, you will need to participate in driver rehab sessions until you are able to demonstrate proficiency with using your vehicle modifications under typical driving conditions. In some areas of the world, a road test may be required to get your full license.

Many vehicles can be adapted for driving after SCI. However, the ideal vehicle for you is dependent on your wants and needs. For example, paraplegics tend to transfer into the driver seat of the vehicle, while among tetraplegics, half will transfer to the drivers seat and half will drive in their wheelchair. If you are driving in your wheelchair, you will need a larger vehicle to accommodate the wheelchair. However, if you are transferring into the vehicle seat, you might want a vehicle that is closer to the ground for an easier transfer and wheelchair loading. Larger vehicles like trucks and SUVs may require extra equipment to help with transfers and wheelchair loading.

One study has looked at the measurements of various vehicles. In regards to the height between the ground and the driver seat, they found that the average height is:

  • 22 inches for a sedan
  • 28 inches for a mid-height vehicle (vans, small-medium SUVs)
  • 36 inches for a high-profile vehicle (large truck or SUV)

This study also found that the average difference in height between the driver’s seat and wheelchair seat is 3.7 inches, and ranged from -3.5 inches to 16 inches. This means that for some vehicles, the wheelchair seat may be above the vehicle seat, while in others, they can be up to 16 inches below the vehicle seat. Your ability to transfer is a consideration in what kind of vehicle to buy. Other considerations include how much space you want in your vehicle, where you will be driving your vehicle, and how/where you will be storing your wheelchair if you plan on transferring into the driver seat of the vehicle.

Collision warning braking support is available for some vehicles and can aid in collision prevention.

A vehicle can be adapted in many ways with the use of adaptive driving equipment, or technology used to make your vehicle more accessible. In general, driving is broken into 4 parts:

  • transferring in and out of the vehicle
  • loading your wheelchair
  • using primary controls (steering, accelerating, braking)
  • using secondary controls (e.g., controlling the windshield, signals, radio)

In addition, there are various safety features that can be added to the vehicle to help you drive if you have any limitations. Some driver rehabilitation centers will also complete a vehicle modification assessment. During this assessment, a driving specialist will help you select the equipment to get you and your wheelchair into the vehicle safely.

Transferring in and out of the vehicle

A ramp can be installed to allow for ease of vehicle entry/exit.

When getting in and out of your vehicle, the first consideration is whether you are able to transfer into the driver seat, or if you will stay in your wheelchair. Although it is possible to drive from your wheelchair, some additional considerations include:

  • the original driver seat in the vehicle has been designed to withstand a vehicle crash, and is in an optimal position to be used with the air bag and seatbelt
  • the seatbelt may not fit ideally when in your wheelchair due to the design of a wheelchair

 

Transferring from a manual wheelchair into the driver seat and manually loading the wheelchair

There are many ways to get into your vehicle from a wheelchair. The following is a general overview of the steps.

  1. Transfer into the seat. This can be done using a transfer board, hanging onto a grab bar/ handle, or placing a hand on the seat. Some people choose to transfer by placing their right leg into the vehicle before transferring, or they keep both their legs outside of the vehicle.
  2. Decide where you will place your wheelchair: in the front passenger seat, or the back seats. Those with weaker shoulder muscles should consider loading their wheelchair into the front seats.
  3. Remove the wheels from the wheelchair. This is commonly done by pressing the center button in the middle of the wheel. Place the tires in the vehicle.
  4. Some people remove the cushion and the side guard from the wheelchair. Place these in the vehicle.
  5. Load the wheelchair frame into the vehicle. Reclining the front seat can help you get the frame over your body and into the vehicle.

Driving from the driver seat

Swivel-style car seats can come out of the car or turn inside of the car.

If you have difficulties with transfering or loading your wheelchair there are many adaptations that can be used. Swivel seats are seats that turn and come out of the vehicle, giving you more space to transfer in. Alternatively, a transfer seat can be used. A transfer seat can move up or down in height, can turn, and can be moved in the vehicle for more space. This is done by placing the original driver seat on top of a motorized plate. However, it is important to note that swivel seats are only compatible with some SUV’s, trucks, and minivans, and transfer seats are only compatible with minivans or full sized vans. If you only need a bit of assistance getting in and out of a vehicle, additional grab bars can be installed into a vehicle.

Driving from your wheelchair

If it is decided that it is best for you to drive from your wheelchair, you will need a wheelchair accessible vehicle. To have enough height for a wheelchair to enter, the vehicle is raised up and the floor is lowered. A ramp is then installed. It may come out from the floor or fold out.  Once in your vehicle, it is important to make sure that your wheelchair is stiff enough to provide a stable driving platform, and will not move when you are driving.

Wheelchair tie downs should be used to secure the wheelchair when driving.

Your wheelchair will also need to be secured in place while driving. This can be done with a manual locking system and the help of another person. There are also automated docking systems which anchors your wheelchair without the help of another person. These systems have an additional piece that connects to your wheelchair. The part on your wheelchair clicks into the docking system on the floor of your vehicle. Automated docking systems are controlled electronically. A button installed in your vehicle releases the docking system lock. The part that attaches to your wheelchair weighs 10-19 lbs, and is permanently attached to your wheelchair. Many people using a manual wheelchair have a hard time managing the extra weight on the wheelchair, so this system is usually used with power wheelchairs.

Primary Controls (steering, braking, acceleration)

To help with steering and driving, different handles can be added onto the steering wheel. A spinner knob can be added to make it easier to control the steering wheel. For people with no hand function, a tri-pin add on may be helpful. A tri-pin handle consists of one larger straight prong, and two smaller straight prongs. The larger prong sits in your hand, and your wrist sits between the two smaller prongs. This allows you to use your shoulder and elbow muscles to steer.

Rods can be connected to the accelerator and brakes to allow for hand control driving.

To accelerate and brake, rods are connected to the pedals, and the rod is connected to a handle beside the steering wheel. The handle is pushed forward to brake. Different motions, including depressing, rocking, pulling, or twisting can be used to control the gas. These hand controls are not removable, but the pedals remain in place so an able-bodied person can drive. The vehicle can be shared!

With the advancement of technology, there electronic-based steering adaptations. Some of these technologies include:

  • Power-controlled levers and rods for accelerating/braking: similar to mechanical rods and levers, but with a motor built in to make the movement easier
  • Reduced effort steering: modifications made to the vehicle to reduce the strength required to turn the steering wheel
  • Using joysticks or other electronic wheels to drive the vehicle: a modification can be made to the vehicle so that it is controlled by a computer. The vehicle is then driven with a wheel or joystick that is connected to the computer.

Secondary Controls (windshield wipers, turn signals, etc)

Secondary controls on a button system.

Secondary controls are used to interact with other drivers on the road (such as signaling and using the horn), and to manage the vehicle (e.g., use the windshield wipers, changing the transmission gear, starting the vehicle, managing the heating/air conditioning etc). A lot of these functions can be adapted so that they are controlled with the push of a button. For example, buttons can be placed on the head rest so that they can be pressed with the head, or on the door so that it can be pressed with the elbow. Buttons can activate a single function, or can be used to trigger several functions. The multiple buttons can be programmed to the function of your desire, and can be connected to the steering wheel or other location that is convenient to you. These adaptations come in a variety of set-ups, and will require customization to your needs.

Funding considerations

There are often costs associated with the various parts of getting back on the road. In general, fees are required for the initial driving assessment, rehabilitation both in a clinic setting and on the road, and for adaptive equipment. In Canada, there is often no funding for these costs; this is often paid out of pocket unless you have an injury claim or other funding source. As a result, funding can be a big barrier to returning to driving.
For more information on the related fees, contact your local driving rehabilitation center for.

Considerations when looking to buy a vehicle to adapt

When looking to buy a vehicle to adapt after your injury, some things to consider include:

Transfer abilities

What are your transfer abilities? Will you be staying in your wheelchair to drive or will you transfer to the driver seat? If you are able to transfer, how easy is it for your to transfer to a higher surface? Do you need a ramp to get in and out of the vehicle?

Wheelchair storage

If you are planning on transferring out of your wheelchair, where will you store it? In the front seat or back?

Adaptive equipment required

Does the equipment you need only fit in a certain type of vehicle, such as a van? Can the vehicle accommodate the hand controls you need?

Passengers

If you plan on driving others, will there be enough space for passengers in the vehicle once it has been adapted?

Parking

Will the vehicle fit in the parking space you have?

Some driver rehabilitation centers will also complete a vehicle modification assessment. This assessment will help you select the equipment you need to get you and your wheelchair into the vehicle safely. There is usually a fee for a vehicle modification assessment.

Considerations when driving an adapted vehicle

Two studies interviewed people with disabilities who drove adapted vehicles. Some challenges that were identified by the drivers included:

Pain

Pain was experienced in the wrists when driving long distances, especially with a twist accelerator. Shoulder pain was also reported after driving for a long time. You may want to consider what position your arms are in, what movements are used, and if you can do this over a long period of time.

Trunk strength

Having a weak core resulted in some drivers needing to slow down or brace themselves when driving at high speeds or on winding roads. People with a higher spinal cord injury level often need extra trunk support, as they are unable to use their arms for support when hand controls are being used.

Fatigue

Driving can be tiring in comparison to driving able-bodied, as more focus is required for driving an adapted vehicle.

Accessibility of the environment

Some drivers found that the location they drove to was inaccessible, and they were unable to et out of their vehicle. For example, some garages had a step to get out of them, had a steep hill to the entrance, or if there is not enough space to open a ramp.

After an SCI, many people continue to drive with the use of adaptive driving equipment. There are many modifications that can be made to a vehicle to suit your needs and enable you to drive again. However, prior to hitting the road, you will need to be evaluated by a driving rehabilitation specialist or occupational therapist. This evaluation will help the clinician understand your needs and limitations, and help them determine the best adaptations for you. Although getting back to driving may be a lengthy process, it can be beneficial for your sense of independence, and partaking in activities that you want to do again.

For a review of what we mean by “strong”, “moderate”, and “weak” evidence, refer to the SCIRE Community Evidence Ratings.

Evidence for “Why is driving after SCI important?” is based on:

Mtetwa, L., Classen, S., & van Niekerk, L. (2016). The lived experience of drivers with a spinal cord injury: A qualitative inquiry. South African Journal of Occupational Therapy, 46(3), 55–62.

Norweg, A., Jette, A. M., Houlihan, B., Ni, P., & Boninger, M. L. (2011). Patterns, predictors, and associated benefits of driving a modified vehicle after spinal cord injury: Findings from the national spinal cord injury model systems. Archives of Physical Medicine and Rehabilitation, 92(3), 477–483.

Evidence for “How do I know if I can drive?” is based on:

Anschutz, J. (2015). Driving After Spinal Cord Injury. Spinal Cord Injury Model System, (October). Retrieved from https://msktc.org/lib/docs/Factsheets/SCI_Driving.pdf

Kiyono, Y., Hashizume, C., Matsui, N., Ohtsuka, K., & Takaoka, K. (2001). Vehicle-driving abilities of people with tetraplegia. Archives of Physical Medicine and Rehabilitation, 82(10), 1389–1392.

Norweg, A., Jette, A. M., Houlihan, B., Ni, P., & Boninger, M. L. (2011). Patterns, predictors, and associated benefits of driving a modified vehicle after spinal cord injury: Findings from the national spinal cord injury model systems. Archives of Physical Medicine and Rehabilitation, 92(3), 477–483.

Peters, B. (2001). Driving performance and workload assessment of drivers with tetraplegia: An adaptation evaluation framework. Journal of Rehabilitation Research and Development, 38(2), 215–224.

Evidence for “What is a driving assessment based on?” is based on:

Anschutz, J. (2015). Driving After Spinal Cord Injury. Spinal Cord Injury Model System, (October). Retrieved from https://msktc.org/lib/docs/Factsheets/SCI_Driving.pdf

van Roosmalen, L., Paquin, G. J., & Steinfeld, A. M. (2010). Quality of Life Technology: The State of Personal Transportation. Physical Medicine and Rehabilitation Clinics of North America, 21(1), 111–125.

Evidence for “What kind of vehicle can I drive?” is based on:

Haubert, L. L., Mulroy, S. J., Hatchett, P. E., Eberly, V. J., Maneekobkunwong, S., Gronley, J. K., & Requejo, P. S. (2015). Vehicle transfer and wheelchair loading techniques in independent drivers with paraplegia. Frontiers in Bioengineering and Biotechnology, 3(139), 1-7.

van Roosmalen, L., Paquin, G. J., & Steinfeld, A. M. (2010). Quality of Life Technology: The State of Personal Transportation. Physical Medicine and Rehabilitation Clinics of North America, 21(1), 111–125.

Evidence for “What adaptations are available for my vehicle?” is based on:

Haubert, L. L., Mulroy, S. J., Hatchett, P. E., Eberly, V. J., Maneekobkunwong, S., Gronley, J. K., & Requejo, P. S. (2015). Vehicle transfer and wheelchair loading techniques in independent drivers with paraplegia. Frontiers in Bioengineering and Biotechnology, 3(139), 1-7.

van Roosmalen, L., Paquin, G. J., & Steinfeld, A. M. (2010). Quality of Life Technology: The State of Personal Transportation. Physical Medicine and Rehabilitation Clinics of North America, 21(1), 111–125.

Evidence for ” What are some considerations when using and buying an adapted vehicle?” is based on:

Christopher and Dana Reeve Foundation (2021). Vehicles and Driving. https://www.christopherreeve.org/living-with-paralysis/home-travel/driving

Hutchinson, C., Berndt, A., Gilbert-Hunt, S., George, S., & Ratcliffe, J. (2020). Modified motor vehicles: the experiences of drivers with disabilities. Disability and Rehabilitation, 42(21), 3043–3051. Retrieved from https://doi.org/10.1080/09638288.2019.1583778

Mtetwa, L., Classen, S., & van Niekerk, L. (2016). The lived experience of drivers with a spinal cord injury: A qualitative inquiry. South African Journal of Occupational Therapy, 46(3), 55–62.

Image credits
  1. Wheelchair holiday bea disabled summer ©LonelyTaws, Pixabay License
  2. Eye ©Veronika Krpciarova, CC BY 3.0 
  3. Stretch ©Andrejs Kirma, CC BY 3.0 
  4. Brain ©Amethyst Studio, CC BY 3.0 
  5. Mood ©shuai tawf, CC BY 3.0 
  6. Adapted wheel with spinner, ©SCIRE Community Team
  7. Honda Odyssey (2018-present) ©Kevauto, CC BY-SA 4.0
  8. Eighth-generation Civic sedan ©OSX, CC 0
  9. Ford F-150 crew cab – 05-28-2011 ©IFVEHICLE, CC 0
  10. Collision warning brake support ©Ford Motor Company, CC BY 2.0
  11. Adapted Van ©SCIRE Community Team
  12. Haubert, L. L., Mulroy, S. J., Hatchett, P. E., Eberly, V. J., Maneekobkunwong, S., Gronley, J. K., & Requejo, P. S. (2015). Vehicle transfer and wheelchair loading techniques in independent drivers with paraplegia. Frontiers in Bioengineering and Biotechnology, 3(139), 1-7.
  13. A disabled man in a wheelchair getting out of a vehicle ©CDC/Amanda Mills, CC 0
  14. BraunAbility Turny Evo Handicap Swivel Vehicle Seat Transfer Seat ©BraunAbility, 2020
  15. BraunAbility B&D Transfer Seat ©BraunAbility, 2020
  16. Special, vehicle, wheelchair ©CDC/Amanda Mills, CC 0
  17. QRT-360 ©Q’Straint, 2021
  18. Sure-Grip Tri-pin Spinner Knob ©Indemedical, 2021
  19. Adapted driving levers and rods. ©SCIRE Community Team
  20. Bever 8-touch Keypad ©Bever Mobility Products Inc
  21. Money ©Mahabbah, CC BY 3.0 
Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.

Housing After SCI

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Author: Sharon Jang | Reviewer: Rachel Abel | Published: 25 May 2022 | Updated: ~

Finding adequate housing after a spinal cord injury (SCI) can be difficult, but is important for quality of life. This article addresses housing concerns and adaptations after SCI.

Key Points

  • Having housing that is optimal for your needs can improve reintegration back into the community.
  • Many factors play a role in where you are discharged to after being in the hospital. These factors include how well you can do basic self-care tasks, age, degree of impairment, and whether you have insurance.
  • To make a house accessible, you can find/build a house that has been built for accessibility, or make your own adaptations for the home.
  • There are a variety of adaptations and modifications that can be made in all rooms of the home to make it more accessible.

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After a spinal cord injury (SCI), there is often an increased need for social support and accessibility in the environment. Due to these factors, careful planning and consideration is required for optimal housing. Housing is an important factor in transitioning back into the community, which is a strong predictor of quality of life. Some (weak) evidence has noted that housing can influence quality of life as it:

  • Creates opportunities for community participation through its physical location (e.g., being close to community centers, libraries, shops, etc.).
  • Creates a sense of safety.
  • Promotes independence, if the house is accessible.
  • Allows for socialization with family and friends.

If there is a mismatch between housing needs and the home a person is discharged to, weak evidence suggest that a variety of difficulties may arise, including:

  • A loss of friendships.
  • A lack of care or assistance.
  • Negative experiences with other people, related to being in a wheelchair.
  • A lack of control over daily activities.
  • A lack of flexibility and restriction of participating in work and leisure.

Moving back into the community after SCI is both a test of the supportiveness of the environment, and the resilience and resourcefulness of the individual. These factors can determine the success of the transition back into the community. This article will specifically focus on optimizing housing after SCI.

After SCI, there are many factors that influences whether or not one can go home. These include:

  • Not being psychologically ready.
  • Inaccessible transportation or home.
  • A lack of social support.

Where an individual will live after being discharged from a hospital or rehabilitation center is dependent on many factors, including:

How well you can perform basic self-care tasks independently

Self-care tasks include activities such as bathing, feeding, and dressing yourself. In research, this is often measured through a test called the Functional Independence Measure (FIM). Some weak evidence shows that lower levels of independence will increase the likelihood of moving into a nursing home, as one would require a higher level of care.

Degree of impairment

Those who are AIS D (i.e., those with movement and near-normal strength in at least half the muscles below the level of injury) have access to greater housing opportunities. This is related to the fact (weak evidence) that individuals with AIS D face less environmental barriers and require less housing adaptations.

Age

One weak evidence study has found that older individuals are 4% more likely to be discharged to an extensive care unit or nursing home.

Having pre-existing medical conditions

If one has pre-existing medical conditions prior to sustaining an SCI,weak evidence suggests that there is 10x greater chance of being discharged to a nursing home.

Insurance/private funding for equipment

One study indicated that being able to afford adaptive equipment may increase the chances of being discharged home. This is one of the most significant factors in returning home as funding is required for adaptive equipment, renovations, care, and other supplies. It is important that an individual is able to live independently in their homes.

When looking for a home after injury, one may choose to rent, buy, renovate, or build a home. If you decide to renovate or build a house, some ways you may design your home include creating a livable house or an adaptable house.

Livable housing

A house built with universal design includes no steps/stairs from the start. 7

Livable housing are houses that are developed to be fully accessible despite changing needs throughout one’s life. That is to say, they are built with accessibility in mind. This type of housing embraces the concept of universal design. Universal design is a concept in which buildings and products are created so that they are usable by all people without the need of adaptation or specialized design. Applied to a home, universal design could include designing a home without steps rather than having to add a ramp later, or having doorways wide enough to accommodate wheelchairs if needed. Universal design is most often implemented in the building phase, and is not implemented once the house is already built.

Adaptable housing

Adaptive housing are places of residence that have additional accessibility modifications for people with disabilities. This includes changes such as lowered cabinets, changing the kitchen to have leg room under the countertop, or changing the layout of the laundry room to make it more accessible.

Considerations prior to modifying your home

Talking with a peer prior to making modifications to your home can be greatly beneficial. 8

Modifying your home can be an exciting but costly process. Before you start making changes to your house, some things to consider include the following:

  • What are you able and unable to do? Keep your abilities in mind and remind yourself of the key changes need to be done to help you to avoid over-designing your home.
  • Who can you turn to for advice? While there are specialized companies that exist that can provide recommendations for your modifications, also be sure to chat with another peer with SCI for advice. They may have additional insight, or referrals to reputable specialized contractors. Additionally, occupational therapists are equipped with specialized knowledge to make a home more accessible.
  • What equipment works best for you? Make sure you try out equipment to ensure that they will work for you before you buy!

There are many features that can be included or added to a home to make it more accessible. Below, we list some ways homes may be adapted. This list is not exhaustive. It is important that you discuss things with peers, and experts in home design/building to see what works best for you and your home. For more photos, please refer to SCI Saskatchewan’s Accessible Housing page.

In the kitchen above, note the stove dials on the front of the stove, the lowered sink, and the space to wheel under it.9

Kitchen

Kitchens can be inaccessible after SCI due to inaccessibility stoves, a lack of leg space under counters, and counters and sinks being too high. Some modifications that can be made in the kitchen include:

  • Putting in lowered counter tops.
  • Ensuring there is space to wheel under the counter and stove.
  • Using a wall-mounted oven so that it is at an appropriate height.
  • Having drawers and cupboards with lever-style knobs (versus rounded knobs).
  • Placing the stove next to the sink to facilitate easy transfer of a pot to a sink for draining.
  • Having stoves with knobs at the front, which are easier to reach and use.

This bedroom has light switches at head height on both sides of the bed, and ample space around the bed for moving.10

Bedroom

Some modifications that can be made in the bedroom include:

  • Ensuring there is enough space on both sides of the bed to wheel.
  • Having a shorter bedframe or box spring to facilitate transfers from manual wheelchairs.
  • Having hardwood or laminate flooring to maximize wheeling in the room, although a low pile carpet may be okay as well.

Placing a second, lower bar in the closet for easier reach.

 

An adapted roll in shower with grab bars and a handheld shower head (left), and a sink with space to wheel under (right).11-12

Bathroom

Bathrooms are often the number one barrier in a home, specifically the shower. Some things to consider include the toilet height, the sink height, and the shower/tub. Some newer buildings use toilets with higher seats as they are easier for older adults to stand up, but this can make transferring an issue. Some modifications that can be made in the bathroom include:

  • Using non-slip tiles.
  • Installing a grab-bar for toilet or shower transfers.
  • Having adjustable angles on mirrors.
  • Installing roll in showers, with sides of the shower on a slight angle towards the drain.
  • Using a handheld shower head, with connection to a rail for adjustable height.
  • Placing wheel-in sink – sinks with space under them for a wheelchair to fit.
  • Adding a raised toilet seat or a taller toilet for easier transfer.

Living room

Living rooms can be busy spaces filled wit#q2nh furniture and electronics such as televisions. Some modifications that can be made to make the living room more accessible include:

  • Using arm chairs with a straight back and arm may provide support for rising and sitting.
  • Obtaining an electric reclining chair, which can help for repositioning and is easy to operate.
  • Ensuring there is enough space between furniture to maneuver.
  • Using hardwood flooring throughout the main common rooms.
  • Having low windows so you can see out them.
  • Having an open concept living room/dining room for easy moving.
  • Using gas fireplaces for easy lighting.

A lever-style door knob (left) and a lock key-pad (right) are some adaptations that can be used.13-14

Exterior

  • Replace round doorknobs with lever door handles.
  • Use a keyless entry/ use of a code pad lock in place of a traditional key.
  • Use a folding ramp to go up a few stairs.

Other

  • If building a ramp, ensure that the ramp is at least a 1:12 grade (i.e., for every one meter in elevation, the ramp should be 12 meters long).
  • Create slip resistant surfaces with products such as non-slip strips, carpeting, or sand paint.

While renovations can make a home more accessible, it may not be in the budget for everyone. Instead, there are alternative lower cost strategies that can be used to improve accessibility in a home. These include the use of technology, addition of loops and straps, and modifications to existing home set-ups.

Smart devices. 15

Using technology for accessibility

With the advancement of technology, smart home features allow an individual to control various parts of the home through voice. With the use of devices such as the Google Home and Amazon Alexa, parts of the home such as lights, televisions, and the thermostat can be controlled with verbal commands. Alternatively, there are some models of powered wheelchairs that now come equipped with Bluetooth technology. This allows you to connect and control Bluetooth devices, such as lightbulbs, stereos, phones, and computers, with controls on a powered wheelchair.

A person opening a fridge door with their wrist. A loop has been added to the fridge door handle to facilitate this.16

Addition of loops and straps

A low-cost method of increasing accessibility of doors and drawers is through the addition of loops and straps. Loops and straps can be added to existing handles, such as on drawers, a fridge door, or on cabinets, to allow individuals to open these structures with their wrist or elbow. If possible, handles can also be swapped out for more accessible ones, such as bar-style handles.

Modifications to existing structures

While one can modify their homes with extensive renovations, there are also minor things an individual can do to improve accessibility around the home. In the kitchen, consider removing cabinet doors lower down. This can allow for more leg room under sinks and countertops. Moreover, those with limited strength may want to consider rearranging the kitchen so that heavier objects (such as dishware), are lower down, or removing heavy objects altogether (e.g., by replacing ceramic dishware with plastic).

If doors are an issue in the home, typical door hinges may be replaced with Z-shaped or swing-away door hinges. These alternative hinges allow doors to open wider, which creates more space for a wheelchair to get through. As noted in the previous section, lever-style doorknobs can also be used to replace rounded doorknob to facilitate the opening of doors.

Examples of adaptive equipment that can be used to control stove knobs.17-18

Adaptive equipment

In addition to renovations and modifications to the home, there are a variety of adaptive equipment that may make a home more accessible. For example, for those who are unable to reach or turn stove knobs, there are adaptive knob tuners available. Occupational therapists specialize in adapting spaces and equipment to meet each individual’s unique needs. For more information, refer to an occupational therapist.

Having housing that suits your unique needs after an SCI is important for community re-integration and your quality of life after injury. While there is the option of building a new house from scratch, it may be more feasible to adapt an existing home to increase accessibility and independence at home.

It is best to discuss all options with an occupational therapist or construction specialist to find out which modifications and equipment are suitable for you.

It is best to discuss all treatment options with your health providers to find out which treatments are suitable for you.

For a review of what we mean by “strong”, “moderate”, and “weak” evidence, please see SCIRE Community Evidence Ratings.

Parts of this page has been adapted from SCIRE Project (Professional) Housing and Attendant Services: Cornerstones of Community Reintegration after SCI” Chapter:

Boucher N, Smith EM, Vachon J, Légaré I, Miller WC (2019). Housing and Attendant Services: Cornerstone of Community Reintegration after Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Noonan VK, Loh E, McIntyre A, Querée M, Benton B, editors. Spinal Cord Injury Rehabilitation Evidence. Version 6.0. Vancouver: p 1- 35.

Available from: SCIRE Professional Site

Evidence for “Why is housing important?” is based on:

Bergmark, B. A., Winograd, C. H., & Koopman, C. (2008). Residence and quality of life determinants for adults with tetraplegia of traumatic spinal cord injury etiology. Spinal Cord, 46(10), 684–689. https://doi.org/10.1038/sc.2008.15

Dickson, A., Ward, R., O’Brien, G., Allan, D., & O’Carroll, R. (2011). Difficulties adjusting to post-discharge life following a spinal cord injury: An interpretative phenomenological analysis. Psychology, Health and Medicine, 16(4), 463–474. https://doi.org/10.1080/13548506.2011.555769

Smith, B., & Caddick, N. (2015). The impact of living in a care home on the health and wellbeing of spinal cord injured people. International Journal of Environmental Research and Public Health, 12(4), 4185–4202. https://doi.org/10.3390/ijerph120404185

Evidence for “What factors influence where I will live after the hospital?” is based on:

Azai, K., Young, J., McCallum, J., Miller, B., & Jongbloed, L. (2006). Factors influencing discharge location following high lesion spinal cord injury rehabilitation in British Columbia, Canada. Spinal Cord, 44(1), 11–18. https://doi.org/10.1038/sj.sc.3101778

Gulati, A., Yeo, C. J., Cooney, A. D., McLean, A. N., Fraser, M. H., & Allan, D. B. (2011). Functional outcome and discharge destination in elderly patients with spinal cord injuries. Spinal Cord, 49(2), 215–218. https://doi.org/10.1038/sc.2010.82

Norin, L., Slaug, B., Haak, M., Jörgensen, S., Lexell, J., & Iwarsson, S. (2017). Housing accessibility and its associations with participation among older adults living with long-standing spinal cord injury. Journal of Spinal Cord Medicine, 40(2), 230–240. https://doi.org/10.1080/10790268.2016.1224541

Evidence for “How do I make my house accessible?” is based on:

Palmer, J., & Ward, S. (2013). The livable and adaptable house. Retrieved from: https://www.yourhome.gov.au/housing/livable-and-adaptable-house

Muir, K. (2020.) Adapting a home for wheelchair accessibility. Retrieved from: https://www.sralab.org/lifecenter/resources/adapting-home-wheelchair-accessibility

Evidence for “What does accessible housing look like?” is based on:

SCI Saskatchewan. Accessible housing. Retrieved from: https://scisask.ca/accessible-housing/

Muir, K. (2020.) Adapting a home for wheelchair accessibility. Retrieved from: https://www.sralab.org/lifecenter/resources/adapting-home-wheelchair-accessibility

Pettersson, C., Brandt, Å., Lexell, E. M., & Iwarsson, S. (2015). Autonomy and housing accessibility among powered mobility device users. American Journal of Occupational Therapy, 69(5), 1–9. https://doi.org/10.5014/ajot.2015.015347

Image credits
  1. Woman in red and white long sleve shirt sitting on wheelchair ©Marcus Aurelius. Pexels License
  2. bathing ©ProSymbols, US. CC BY 3.0
  3. Modified from Outlines. ©Servier Medical Art. CC BY 3.0
  4. Birthday Candles. ©SCIRE Community Team
  5. Health. ©StringLabs, ID. CC BY 3.0
  6. ©SCIRE Community Team
  7. Architecture clouds daylight driveway. ©Pixabay. CC0
  8. Hamburg St Pauli Wheelchair Users. ©fsHH. Pixabay License.
  9. Wheelchair Accessible Kitchen ©bflosab. CC BY-NC-ND 2.0
  10. Inside our casita. ©Night Owl City. CC BY-NC-SA 2.0
  11. After. ©Amanda Westmont. CC BY-NC-SA 2.0
  12. Accessible Sink © Fairfax County CC BY-ND 2.0
  13. Door Handle. ©www.trek.today. CC BY 2.0
  14. Finished installation of a Schlage Key Pad Door lock system on a full light front door. ©Larry Spalding CC BY-SA 4.0
  15. Google home with home hub and home mini on table. ©Y2kcrazyjoker4 CC BY-SA 4.0
  16. Loop on fridge. ©Rachel Abel
  17. Stove knob reacher. ©Rachel Abel
  18. Adaptive stove knob turner. ©Rachel Abel

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.

Physical Activity After Spinal Cord Injury

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Author: Sharon Jang | Reviewer: Sonja de Groot | Published: 20 April 2022 | Updated: ~

Physical activity after spinal cord injury (SCI) can provide many health benefits, as in the able-bodied population. This page covers the benefits of exercising with an SCI, precautions, and adaptations to exercising with an SCI.

Key Points

  • Exercising after an SCI can improve muscle strength, type, and size, your abilities to do things on a day-to-day basis, your well-being, and decrease risks for secondary complications.
  • There are many ways to get physically active, including sports, being active in the community, and going to the gym.
  • Many exercises and sports can be adapted for those with SCI using adaptive equipment.
  • Although rare, some secondary complications such as autonomic dysreflexia (AD), orthostatic hypotension (OH), skin breakdown, and temperature regulation, may arise.

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After SCI, there is deconditioning of muscles, bones, joints, and changes in the heart and blood vessels due to inactivity. This can lead to various secondary complications, such as heart disease, breathing complications, weakening of the bones (osteoporosis), pain, spasticity, and diabetes. Exercise has many positive changes for those with an SCI including muscle type and size, improved muscle strength, independence, well-being, and helping to prevent secondary health complications.

Muscle type, size, and strength

In the body, there are 2 main types of muscle fibers: slow twitch (type I) and fast twitch (type II). Slow twitch muscles are known as the endurance muscles, as they are able to hold a contraction for a long period of time before getting tired. For example, the muscles that are used to keep your head up right are mostly made up of slow twitch muscle fibers. Type II fibers are known for their short burst of speed or strength. They can generate more strength, but get tired really quickly. Over time with an SCI, the muscles with the endurance type (type I) tends to turn into the more fatigable type (type II). There is some moderate-weak evidence that shows that among those with limited movement in their legs, the use of functional electrical stimulation (FES) can help shift muscle fibers from being more fatigable to more endurance based.

After injury, muscles in the body slowly begin to become smaller (atrophy). However, there is moderate to weak evidence that indicates that moving your arms and legs, either passively or actively, can help build muscle up again. Two (weak evidence) studies found that amongst those with limited to no leg function, electrical stimulation (Neuromuscular electrical stimulation (NMES) or FES) can increase the size of the thigh muscles. In addition, there is weak evidence that the use of a body-weight support treadmill can also increase the size of the lower leg muscle, resulting in a partial reversal of muscle shrinking.

There is strong-moderate evidence that exercising can help individuals of any injury level improve their strength. Among those with paraplegia, there is strong evidence that strength training (i.e., doing weight training) can improve muscle strength in the arms. There is also strong evidence showing that body weight support training can improve overall muscle strength, and moderate evidence that arm cycling can help strengthen the arms and the front of the shoulder. Among those with tetraplegia, there is strong evidence that the use of FES on the arm and shoulder can improve muscle strengthening. Moreover, strong evidence suggests that neuromuscular stimulation (NMES) can improve strength among those with cervical level injuries. If you are unable to access specialized equipment, strength training with free weights or using an arm cycle can show similar benefits as well.

Activities of Daily Living

There is some moderate evidence that shows that exercising can enhance the ability to perform daily tasks by yourself. Exercising improves your fitness level (such as your strength and endurance), which can help you perform daily tasks. More specifically, tasks may become easier by reducing physical strain and a decrease in the amount of time required to do an activity.  One moderate evidence study found that doing physical therapy exercises in addition with neuromuscular stimulation enhanced participant’s ability to perform self-care (e.g., dressing, feeding, toileting) and mobility (e.g., transferring, wheelchair pushing). Other weak evidence supports these findings, as they found that exercise can help improve transferring and the ability to put on/take off clothing, wheeling and cleaning. Furthermore, increased fitness levels have also been associated with return to work.

Well-being

Some evidence suggests that exercise can help individuals improve perceptions of well-being. Well-being has been defined as how well an individual feels in their mind, their satisfaction with their health and functioning, and their overall satisfaction in life. Two aspects of well-being relatively well-researched is the impact of physical activity on depression and quality of life. There is weak evidence that found that all types of physical activity can help improve depressive symptoms and can improve quality of life. This relationship between physical activity and depressive symptoms and quality of life can be explained by a strong evidence study, which indicates that exercise can lead to decreased stress and pain. For example, strong evidence has shown that exercise can reduce shoulder pain, which can allow individuals to perform a more variety of movements without consequences. The reduction in stress and pain, in turn, is thought to improve quality of life and depressive symptoms. However, many of these studies lack a control group. As a result, we are unable to determine if physical activity alone has an influence on subjective well-being.

Secondary complications

After sustaining an SCI, multiple secondary complications can occur. However, research suggests that exercise can help prevent or reduce the severity of secondary complications, including:

  • Conditions impacting the heart and blood vessels, by improving the strength of the heart and balancing out the sympathetic (fight or flight; stimulation) and parasympathetic  (relax and slowing) nervous systems,
  • Breathing complications, through strengthening the muscles required for breathing and through increasing the amounts of oxygen taken up by the body,
  • Weakened bones, by increasing bone mass density,
  • Type II diabetes, through improving the balance of blood sugar (glucose),
  • Pain, through strengthening, and
  • Spasticity, which can be reduced short term with exercising.

There are many ways for you to remain physically active, even after SCI! Strength training can be done at a local community center or private gym, most often with the equipment already there. Strength training can also be done at home with free weights and exercise bands. Some equipment that can be used for strength training include free weights, exercise bands, and pulleys. For aerobic exercise, some alternatives include using an arm ergometer (arm cycle), a rowing machine (if possible), and adaptive rowers, such as the Ski-Erg.

If going to the gym is not for you, adaptive sports is another way to get active. There are a variety of adaptive sports, including court sports (e.g., basketball, rugby, tennis), water sports (e.g., sailing, kayaking), race sports (e.g., cycling, track and field), and winter sports (e.g., Nordic and alpine skiing).

 

Alternatively, specialty equipment is available to help facilitate exercise after SCI. However, this equipment is more commonly used in rehabilitation settings, as they are very expensive and additional assistance is often required. A Functional Electrical Stimulation (FES) bike can be used to simulate the legs while cycling, and has been shown improve strength and endurance. Body-weight Support Treadmills are specialized treadmills with a sling attached to it. This type of treadmill allows an individual to move their legs on the treadmill, while having their bodyweight supported by a sling. Some models are available to allow users to control how much of their bodyweight they feel while in the treadmill, which can alter the challenge of walking.

If going to the gym or playing sports is not your thing, there are still other ways to get active! Performing daily tasks can be hard work as well. For example, activities such as heavy gardening, going grocery shopping and carrying home groceries, doing a lot of housework such as vacuuming and cleaning the house, going for a push with family/friends are all ways of being active. However, if these are your activity of choice, you want to make sure you are pushing yourself enough to get your heart rate up and keep it up for a while.

In 2020, exercise guidelines for the SCI population were released. Currently, the starting level guidelines for fitness benefits are:

  • at least 20 minutes of moderate to vigorous intensity endurance (aerobic) exercise, 2 times per week
  • 3 sets of strength exercises for each major muscle group at a moderate to vigorous intensity, 2 times a week.

The advance level provides guidelines for additional fitness and health benefits, such as reducing your risk for diabetes. It is recommended to get at least 30 minutes of moderate to vigorous intensity aerobic exercise at least 3 times a week, in addition to the 3 sets of strength exercises twice a week.

Refer to our article on Exercise Guidelines after SCI for more information!

Another way to gauge your effort is through a Rating of Perceived Exertion (RPE). The RPE is a subjective rating scale where the individual rates how hard they feel they are working, where 0 is not working at all, and 10 is working at your absolute maximum. If someone is just starting off with exercising, starting between a 5-7 on the RPE scale is a good idea.

 

Watch SCIRE’s YouTube Video explaining how to use RPE when exercising!

Another way to evaluate how hard you are working is through using the talk test. The talk test uses your ability to carry out a conversation while performing exercise to gauge exercise intensity. According to the talk test, a moderate intensity workout is achieved when one is able to talk to someone while working out, but not being able to sing. During a vigorous intensity workout, you would only be able to say a couple of words to someone, and speaking is difficult.

Watch SCIRE’s YouTube video explaining how to adapt exercises.

Going back into a gym after an SCI may be daunting given that much of the equipment may no longer be accessible. However, there are a number of ways to adapt gym equipment, including grip assistance,  transfer boards, chest straps, and using free weights and wedges. When exercising at a gym, you may require some additional assistance getting set up on pieces of equipment. If this is the case, consider going with a family member or a friend, and don’t be afraid to ask the gym attendant for help.

Adaptive grip aids include commercial gloves (left), tensor bandages (upper right) and weight lifting cuffs (bottom right).

After a high-level SCI, hand functioning may be impaired, resulting in a lack of ability to grip. To address this in a gym setting, some available options include using tensor bands, commercially available gloves, or weight-lifting cuffs. Tensor bandages can be used to wrap your hands around a handlebar. Benefits of using a tensor bandage include wide availability and low cost. Commercially available gloves, such as the Active Hands, are also available to assist with grip function on handles. These gloves provide a bit more support to the wrist and have a Velcro strap around the wrist. They also have a second Velcro that goes over the hand, which secures the hand to the handle. However, commercial gloves may not be as readily available and are usually expensive. Lastly, some individuals use weight-lifting cuffs, which are available at most gyms for use, to assist with grip function. These cuffs have a Velcro strap that goes around the wrist and a hook that can be connected to handlebars. Although commonly found in gyms, weightlifting cuffs only work for specific movements, such as pushing and pulling. In addition, they might not fit around handles of all sizes.

An abdominal binder (circled in red) being used to help keep an upright posture during rowing.

Abdominal (core) function is often impacted with an SCI, which may limit the types of activities you are able to do. One way to address this issue is through the use of a chest strap. A chest strap is a neoprene strap that comes in differing widths but is often wide enough to cover your abdominal area. The idea is to wrap the chest strap around the backrest of your wheelchair and around your torso, preventing you from falling forward if you are doing a pulling exercise. Chest straps are commonly used in various wheelchair sports as well, to provide additional support.

Refer to our article on Abdominal Binders for more information! 

When exercising in a wheelchair, you may find that the wheel lock still allows for some movement in the wheels, which may hinder an exercise. One way to address this situation is through adding additional support at the base of the wheel using wedges or free weights. Free weights can be placed behind the rear tire on both sides, or in front of the rear tire on both sides. In place, small wooden wedges (or door stoppers) can be placed under the tires on all four sides (in front and at the back) to help prevent rocking.

Watch SCIRE’s YouTube video explaining potential complications during exercise.

Exercise is relatively safe for individuals with SCI. However, there are some complications that, while rare, can arise.

Low blood pressure

When you first start exercising, it is common to possibly feel some nausea, or like you might pass out. This is a result of exercise-induced (exertional) hypotension, or a sudden drop in blood pressure due to exercise. One way to overcome this is to build up your exercise routine. When doing aerobic exercises, try a discontinuous approach: exercise for 2-3 minutes, then take a break. The idea is to slowly increase the length of exercising before you require a break, working your way up to 20-30 minutes of exercise. Once you are able to continuously exercise for 20-30 minutes, then you may consider increasing the resistance.

Autonomic Dysreflexia

Autonomic dysreflexia is a condition where blood pressure suddenly increases to dangerous levels. If this occurs, stop exercising. Sit up and try to lower your legs if possible, loosen any tight clothing, and move off of any high-pressure areas (e.g., sit bones, hands/wrists if you are using assistive grip). If symptoms do not go away, seek medical attention.

Refer to our article on Autonomic Dysreflexia for more information!

Temperature regulation

With a high level injury, temperature dysregulation, the body’s inability to control temperature, may be influenced. The ability to produce sweat can be compromised with higher levels of injury, resulting in an inability to cool down the body. In colder environments, it may be harder to warm up.

When exercising in hot or warmer environments, make sure you are drinking water consistently throughout your workout. Consider wearing looser clothing, and try to work out in an environment with ventilation, fans, or air conditioning. If you notice that you tend to overheat during exercise and are unable to sweat, you can also try carrying a spray bottle with you and spray your face down to cool off. When exercising in cooler environments, be mindful of your hands, arms, legs, and feet and make sure they aren’t getting too cold. Try dressing in layers so you can wear more if necessary, but also take layers off if you get warm.

Skin concerns

When exercising, it is important to be cautious of skin integrity, especially if you have no sensation. One area to be mindful of is the back when performing rocking or twisting motions. Rocking and twisting movements may cause the back to rub on the backrest of the wheelchair, creating a potential for skin breakdown. Another area to be mindful of is areas used with straps, such as the hands and sometimes the feet. For example, if using a grip aid for a longer duration of time to perform an activity, you may want to check for red spots that may have been caused by the straps. Ensure to check your skin after exercising for redness.

Refer to our article on Pressure Injuries for more information!

Overuse injuries

Overuse injuries occur when you exercise muscles that are already often used on a daily/frequent basis. An example of this is the shoulders, as it is used for pushing a wheelchair. To prevent overuse injury, make sure you have the correct posture when performing exercises. When working on the shoulder, try to consider alternatives to pushing your wheelchair as exercise, if possible. For example, the use of an arm bike could be an alternative to get around as they require less demand on your shoulders and arms. In addition, try to balance aerobic exercise and strength training in muscle groups prone to overuse injuries.

Participating in physical activity after SCI can be intimidating, but it is beneficial for your body. Being physically active can help improve your well-being and help reduce the impact of secondary complications after SCI. There are many ways to stay active after an injury, and many ways to adapt existing sports and equipment to help you get a good exercise. Although getting exercise is healthy, there are precautions to keep at the back of your mind when exercising. Overall, it is recommended that individuals with SCI stay active to promote a healthy lifestyle.

It is best to discuss all treatment options with your health providers to find out which treatments are suitable for you.

For a review of what we mean by “strong”, “moderate”, and “weak” evidence, please see SCIRE Community Evidence Ratings.

Parts of this page has been adapted from SCIRE Project (Professional) “Physical Activity” Chapter:

Wolfe DL, McIntyre A, Ravenek K, Martin Ginis KA, Latimer AE, Eng JJ, Hicks AL, Hsieh JTC (2013). Physical Activity and SCI. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Mehta S, Sakakibara BM, editors. Spinal Cord Injury Rehabilitation Evidence. Version 4.0.

Available from: https://scireproject.com/evidence/rehabilitation-evidence/physical-activity/

Evidence for “What are the benefits of exercise after SCI” is based on:

Alexeeva, N., Sames, C., Jacobs, P. L., Hobday, L., DiStasio M. M., Mitchell S.A., & Calancie B. (2011). Comparsion of training methods to improve walking in persons with chronic spinal cord injury: a randomized clinical trial. The Journal of Spinal Cord Medicine, 34, 362—379.Ref 2

Andersen, J. L., Mohr, T., Biering-Sorensen, F., Galbo, H., & Kjaer, M. (1996). Myosin heavy chain isoform transformation in single fibres from m. vastus lateralis in spinal cord injured individuals: effects of long-term functional electrical stimulation (FES). Pflugers Archiv – European Journal of Physiology, 431, 513-518.

Cameron T, Broton JG, Needham-Shropshire B, Klose KJ. An upper body exercise system incorporating resistive exercise and neuromuscular electrical stimulation (NMS). J Spinal Cord Med 1998;21(1):1-6.

Chen Y, Henson S, Jackson AB, Richards JS. Obesity intervention in persons with spnal cord injury. Spinal Cord 2006;44:82-91

Chilibeck PD, Jeon J, Weiss C, Bell G, Burnham R. Histochemical changes in muscle of individuals with spinal cord injury following functional electrical stimulated exercise training. Spinal Cord 1999;37(4):264-268.

Crameri RM, Weston A, Climstein M, Davis GM, Sutton JR. Effects of electrical stimulation- induced leg training on skeletal muscle adaptability in spinal cord injury. Scand J Med Sci Sports 2002;12(5):316-322.

Crameri RM, Cooper P, Sinclair PJ, Bryant G, Weston A. Effect of load during electrical stimulation training in spinal cord injury. Muscle Nerve 2004;29(1):104-111.

de Carvalho DC, Cliquet A, Jr. Energy expenditure during rest and treadmill gait training in quadriplegic subjects. Spinal Cord 2005;43(11):658-663.

De Groot PC, Hjeltnes N, Heijboer AC, Stal W, Birkeland K. Effect of training intensity on physical capacity, lipid profile and insulin sensitivity in early rehabilitation of spinal cord injured individuals. Spinal Cord 2003;41(12):673-679.

Ditor DS, Macdonald MJ, Kamath MV, Bugaresti J, Adams M, McCartney N et al. The effects of body-weight supported treadmill training on cardiovascular regulation in individuals with motor-complete SCI. Spinal Cord 2005;43(11):664-673.

Fukuoka Y, Nakanishi R, Ueoka H, Kitano A, Takeshita K, Itoh M. Effects of wheelchair training on VO2 kinetics in the participants with spinal-cord injury. Disability & Rehabilitation Assistive Technology 2006;1:167-74.

Glinsky, J., Harvey, L., Korten, M., Drury, C., Chee, S., & Gandevia, S. C. (2008). Short-term progressive resistance exercise may not be effective at increasing wrist strength in people with tetraplegia: a randomised controlled trial. Australian Journal of Physiotherapy, 54, 103- 108.

Grimby G, Broberg C, Krotkiewska I, Krotkiewski M. Muscle fibre composition in patients with traumatic cord lesion. Scand J Rehabil Med 1976;8(1):37-42.

Hetz SP, Latimer AE, Martin Ginis KA. Activities of daily living performed by individuals with SCI: Relationships with physical fitness and leisure time physical activity. Spinal Cord 2008;47(7):550-554.

Hicks AL, Adams MM, Martin GK, Giangregorio L, Latimer A, Phillips SM et al. Long-term body- weight-supported treadmill training and subsequent follow-up in persons with chronic SCI: effects on functional walking ability and measures of subjective well-being. Spinal Cord 2005;43(5):291-298.

Jacobs, P. L. (2009). Effects of resistance and endurance training in persons with paraplegia. Medicine & Science in Sports & Exercise, 41, 992-997.

Jeon JY, Weiss CB, Steadward RD, Ryan E, Burnham RS, Bell G et al. Improved glucose tolerance and insulin sensitivity after electrical stimulation-assisted cycling in people with spinal cord injury. Spinal Cord 2002;40(3):110-117.

Klose KJ, Schmidt DL, Needham BM, Brucker BS, Green BA, Ayyar DR. Rehabilitation therapy for patients with long-term spinal cord injuries. Archives of Physical Medicine & Rehabilitation 1990;71:659-62.

Le Foll-de Moro D, Tordi N, Lonsdorfer E, Lonsdorfer J. Ventilation efficiency and pulmonary function after a wheelchair interval-training program in subjects with recent spinal cord injury. Arch Phys Med Rehabil 2005;86(8):1582-1586.

Martin Ginis KA, Latimer AE, McKechnie K, Ditor DS, Hicks AL, Bugaresti J. Using exercise to enhance subjective well-being among people with spinal cord injury: The mediating influences of stress and pain. REHABIL PSYCHOL 2003;48(3):157-164.

Millar PJ, Rakobowchuk M, Adams MM, Hicks AL, McCartney N, MacDonald MJ. Effects of short-term training on heart rate dynamics in individuals with spinal cord injury. Auton Neurosci 2009; 150: 116-21.

Mohr T, Dela F, Handberg A, Biering-Sorensen F, Galbo H, Kjaer M. Insulin action and long- term electrically induced training in individuals with spinal cord injuries. Med Sci Sports Exerc 2001;33(8):1247-1252.

Mulroy, S. J., Thompson, L., Kemp, B., Hatchett, P. P., Newsam, C. J., Lupold, D. G., et al. (2011). Strengthening and Optimal Movements for Painful Shoulders (STOMPS) in chronic spinal cord injury: a randomized controlled trial. Physical Therapy, 91, 305—324.

Needham-Shropshire BM, Broton JG, Cameron TL, Klose KJ. Improved motor function in tetraplegics following neuromuscular stimulation-assisted arm ergometry. J Spinal Cord Med 1997;20(1):49-55.

Round JM, Barr FM, Moffat B, Jones DA. Fibre areas and histochemical fibre types in the quadriceps muscle of paraplegic subjects. J Neurol Sci 1993;116(2):207-211.

Sabatier, M. J., Stoner, L., Mahoney, E. T., Black, C., Elder, C., Dudley, G. A. et al. (2006). Electrically stimulated resistance training in SCI individuals increases muscle fatigue resistance but not femoral artery size or blood flow. Spinal Cord, 44, 227-233.

Silva AC, Neder JA, Chiurciu MV, Pasqualin DC, da Silva RC, Fernandez AC et al. Effect of aerobic training on ventilatory muscle endurance of spinal cord injured men. Spinal Cord 1998;36(4):240-245.

Sutbeyaz ST, Koseoglu BF, Gokkaya NK. The combined effects of controlled breathing techniques and ventilatory and upper extremity muscle exercise on cardiopulmonary responses in patients with spinal cord injury. Int J Rehabil Res 2005;28(3):273-276.

Stewart BG, Tarnopolsky MA, Hicks AL, McCartney N, Mahoney DJ, Staron RS et al. Treadmill training-induced adaptations in muscle phenotype in persons with incomplete spinal cord injury. Muscle Nerve 2004;30(1):61-68.

Evidence for “What are the exercise guidelines” is based on:

Martin Ginis, K. A., van der Scheer, J. W., Latimer-Cheung, A. E., Barrow, A., Bourne, C., Carruthers, P., … Goosey-Tolfrey, V. L. (2018). Evidence-based scientific exercise guidelines for adults with spinal cord injury: an update and a new guideline. Spinal Cord, 56(4), 308–321.

SCIRE. (2020, March 6). Exercise after Spinal Cord Injury: How to Begin [Video file]. Retrieved from https://www.youtube.com/watch?v=P0EWCQawRbI&list=PLi2Dc1h0G7-vn6X1ROpMEMXJK6nmzinWu&index=2

Evidence for “How can I adapt exercises” is based on:

SCIRE. (2020, March 6). Exercise after Spinal Cord Injury: How to Adapt Equipment [Video file]. Retrieved from https://www.youtube.com/watch?v=k7vTlHzYoug&list=PLi2Dc1h0G7-vn6X1ROpMEMXJK6nmzinWu&index=4

Evidence for “What should I be cautious of when exercising” is based on:

SCIRE. (2020, March 6). Exercise after Spinal Cord Injury: Complications to Avoid [Video file]. Retrieved from: https://www.youtube.com/watch?v=HXVaLdhsBuk&list=PLi2Dc1h0G7-vn6X1ROpMEMXJK6nmzinWu&index=3

Image credits

  1. Muscle ©Servier Medical Art, CC BY 3.0
  2. Woman on FES ©SCIRE Community Team
  3. Transferring ©SCIRE Team
  4. Wheelchair woman disability ©codipunnett, Pixabay License
  5. Modified from: Femur, Lungs, Heart ©Servier Medical Art, CC BY 3.0, and Lightning ©FLPLF, CC BY 3.0
  6. Arm cycling ©SCIRE Community Team
  7. Sledge Hockey: Italy/Sweden ©Mariska Richters, CC BY-NC-SA 2.0
  8. Bodyweight Support Treadmill ©SCIRE Team
  9. RPE Scale ©SCIRE Team
  10. RPE thumbnail ©SCIRE Team
  11. Adapted Exercise Thumbnail ©SCIRE Team
  12. Adaptive grip aids ©SCIRE Community Team
  13. Abdominal Binder ©SCIRE Community Team
  14. Potential exercise complications Thumbnail ©SCIRE Team
  15. Dizzy ©Berkah Icorn, CC BY 3.0
  16. High blood ©Eucalyp, CC BY 3.0
  17. Hot thermometer ©Abby, DE, CC BY 3.0
  18. Man Resting on Long Chair ©Gan Khoon Lay, CC BY 3.0
  19. Shoulder injury ©ProSymbols, US, CC BY 3.0

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.

Epidural Stimulation

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Authors: Dominik Zbogar and Sharon Jang | Reviewer: Susan Harkema | Published: 14 February 2022 | Updated: ~

Key Points

  • Epidural stimulation is a treatment that sends electrical signals to the spinal cord.
  • Epidural stimulation requires a surgical procedure to implant electrodes close to the spinal cord.
  • One of the ways epidural stimulation works is by replacing the signals that would normally be sent from the brain to the spinal cord before spinal cord injury (SCI).
  • Epidural stimulation affects numerous systems. Stimulation aimed at activating leg muscles may potentially also affect bowel, bladder, sexual, and cardiovascular function.
  • Studies of epidural stimulation in spinal cord injury (SCI) generally do not include a comparison group without stimulation. The benefits of epidural stimulation that have been reported have been in small numbers of participants. So, while reports thus far are encouraging, more research is necessary.
  • Because it is in the research and development phase, epidural stimulation for spinal cord injury is not part of standard care nor is it a readily available treatment.

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Neuromodulation is a general term for any treatment that changes or improves nerve pathways. Different types of neuromodulation can work at different sites along the nervous system (e.g., brain, nerves, spinal cord) and may or may not be invasive (i.e., involve surgery). Epidural stimulation (also known as epidural spinal cord stimulation or direct spinal cord stimulation) is a type of invasive neuromodulation that stimulates the spinal cord using electrical currents. This is done by placing an electrode on the dura (the protective covering around the spinal cord).

To read more about other types of neuromodulation used in SCI, access these SCIRE Community articles: Functional Electrical Stimulation (FES), Transcutaneous Electrical Nerve Stimulation (TENS), sacral nerve stimulation, and intrathecal Baclofen.

Watch our neuromodulation series videos! Our experts explain experimental to more commonplace applications, and individuals with SCI describe how neuromodulation has affected their lives.

 

 

 

What is “an Epidural”?

Epi- is a prefix and means “upon”, and the dura (full name: dura mater) is a protective covering of the spinal cord. So epidural means “upon the dura”, and in the context of epidural stimulation, this is where the electrodes that stimulate the spinal cord are placed. Yes, it is also possible to have sub-dural (under the dura) or endo-dural (within the dura) electrode placement. And, there are more layers between the dura and the spinal cord, not to mention the spinal cord itself where electrodes could be placed in what is called intraspinal microstimulation. The benefit of being beneath the dura and closer to the spinal cord is that there is a more direct stimulation. Having the electrode closer to the spinal cord allows more precision with the signal going more directly to the neurons.

The drawback is that more complications can arise with closer placement because the electrodes are in the spinal cord tissue. Such placement is currently rare, experimental, or non-existent but that will change as the technology advances. Intraspinal microstimulation has been tested in animal models and is in the process of being translated to humans.

You are probably familiar with the term “epidural” already, as it is often mentioned in relation to childbirth. If a new mother says she had an epidural, what she usually means is that she had pain medication injected into the epidural space for the purpose of managing pain during birth.

We specifically discuss epidural spinal cord stimulation in this article. Spinal cord stimulation can also be applied transcutaneously. This type of spinal cord stimulation is non-invasive as the stimulating electrodes are placed on the skin. With transcutaneous stimulation, the signal has to travel a greater distance through muscle, fat, and other tissues, which means the ability to be precise with stimulation is hampered. However, it does allow for more flexibility in electrode placement and does not require surgery. There is research published or underway investigating the impact of transcutaneous stimulation in some of the areas discussed above, including hand, leg, and cardiovascular function.

Normally, input from your senses travels in the form of electrical signals through the nerves, up the spinal cord, and reaches the brain. The brain then tells the muscles or organs what to do by sending electrical signals back down the spinal cord. After a spinal cord injury, this pathway is disrupted, preventing electrical signals from traveling below the level of injury to reach where they need to go. However, the nerves, muscles, and organs can still respond below the injury to electrical signals.

Epidural stimulation works by helping the network of nerves in the spinal cord below the injury function better and take advantage of any leftover signals from the spinal cord. To do so, the stimulation must be fine-tuned to make sure the amount of stimulation is optimal for each person and a specific function, such as moving the legs.

Recent studies of the role of epidural stimulation on standing and walking have noted unexpected beneficial changes in some participants’ bowel, bladder, sexual, and temperature regulation function This highlights both the potential for epidural stimulation to improve quality of life in multiple ways and that much research remains to be done to understand how epidural stimulation affects the body.


There may still be spared connections in the spinal cord with a complete injury.

How can someone with a complete injury regain movement control with epidural stimulation?

Being assessed with a complete injury implies that there is no spared function below the injury. However, scientists are finding that this may not be the case. Studies have found that even with a complete loss of sensory and motor function, there may be some inactive connections that are still intact across the injury site. These remaining pathways may be important for regaining movement or other functions. Another hypothesis is that epidural stimulation in combination with training may encourage stronger connections across the level of injury. Although these pathways may provide some substitution for the injured ones, they are not as effective as non-injured pathways across the injury level.

When it is decided that an individual will receive epidural stimulation, a health professional, such as a neurosurgeon, will perform an assessment of the spinal cord using magnetic resonance imaging (MRI) to determine the best place to implant the electrodes.

In most of the studies mentioned in this article, the electrodes were placed between the T9-L1 levels, though researchers are investigating the impact of epidural stimulation on hand function.


Xray image of wires connecting power and signal to electrodes (red circle) placed on a spinal cord.

There are two possible procedures. One approach is to have two surgeries. During the initial surgery, a hollow needle is inserted through the skin into the epidural space, guided using fluoroscopy, a type of X-ray that allows the surgeon to see where the needle is in real time. Potential spots on the spinal cord are tested using a stimulator. A clinician will look to see if stimulation over those areas of the spinal cord leads to a desired response. Once found, the electrode array is properly positioned over the dura and the surgery is completed. This begins a trial period where the response to epidural stimulation is monitored. During this time the electrode array is attached to an electrical generator and power supply, which is worn on a belt outside of the body. When it is shown that things are working as desired, the generator is implanted underneath the skin in the abdomen or buttocks. The generator can be rechargeable or non-rechargeable. A remote control allows one to turn the generator on or off and control the frequency and intensity of stimulation.

The second method is to only have one surgery and no trial period. This is possible due to increased knowledge in how to stimulate the spinal cord. Soon after surgery, the individual will be taught how and when to use the epidural stimulation system at home. If needed, the frequency (how often) and intensity (how strong) of the stimulation will be adjusted at follow-up appointments with the physician. In other cases, many practice sessions of learning the right way to stimulate may be needed before a person can stimulate at home.

If the epidural stimulation is used for leg control, movement training, standing, and stepping will be required to learn how to coordinate and control movement during stimulation. This is required for the recovery of voluntary movements, standing and/or walking.

Epidural stimulation can be used in all people with SCI, regardless of the level or completeness of injury. However, certain situations can make it an unsafe treatment in some. It is important to speak to a health professional about your health history before beginning any new treatment.

Epidural stimulation should not be used in the following situations:

  • By people with implanted medical devices like cardiac pacemakers
  • By people who are unable to follow instructions or provide accurate feedback
  • By people with an active infection
  • By people with psychological or psychiatric conditions (e.g., depression, schizophrenia, substance abuse)
  • By people who are unable to form clots (anticoagulopathy)
  • Near areas of spinal stenosis (narrowing of the spinal canal)

Epidural stimulation should be used with caution in the following situations:

  • By children or pregnant women
  • By people who require frequent imaging tests like ultrasound or MRI (some epidural stimulation systems are compatible)
  • By people using anticoagulant medications (blood thinners)

Epidural stimulation is generally well-tolerated, but there is a risk of experiencing negative effects.

The most common risks and side effects of epidural stimulation include:

  • Technical difficulties with equipment, such as malfunction or shifting of the electrodes that may require surgery to fix
  • Unpleasant sensations of jolting, tingling, burning, stinging, etc. (from improper remote settings)

Other less common risks and side effects of epidural stimulation include:

  • Damage to the nervous system
  • Leakage of cerebrospinal fluid
  • Increased pain or discomfort
  • Broken bones
  • Masses/lumps growing around the site of the implanted electrode

Risks specific to the surgery which involves the removal of part of the vertebral bone (laminectomy) include:

  • bleeding and/or infection at the surgical site
  • spinal deformity and instability

Proper training on how to use the equipment and using the stimulation according to the directions of your health provider can help decrease the risks of experiencing these side effects.

Neuromodulation methods to manage bladder function have usually involved stimulation of the sacral nerves (which are outside of the spinal cord), not with epidural spinal cord stimulation. This is reflected in the fact that almost no research exists regarding the effects of epidural stimulation on bowel and bladder function in the previous century.

New information on epidural stimulation relating to bladder function is coming. In the last several years, several studies (weak evidence) from a very small group of participants of participants (who were AIS A or B) have found consistent improvements in bladder function. Participants in these reports were fitted with epidural stimulators for reactivation of paralyzed leg muscles for walking and reported additional benefits of improvements in bladder and/or bowel function. However, other studies have shown small changes to bladder function and no changes to bowel function. Negative changes, such as decreased control over the bladder, have even been noticed by some participants in another study. These findings suggest that epidural stimulation may improve quality of life by safely increasing the required time between catheterizations. Fewer catheterizations and reduced pressure in the bladder would preserve lower and upper urinary tract health. More research is required, especially with respect to bowel function. It must be noted that walk training alone has been shown to improve bladder and bowel function. Epidural stimulation may provide additional improvement to bladder function in comparison to walk training alone. Neuromodulation methods to manage bladder function have usually involved stimulation of the sacral nerves (which are outside of the spinal cord), not with epidural spinal cord stimulation. This is reflected in the fact that almost no research exists regarding the effects of epidural stimulation on bowel and bladder function in the previous century.

Why does walk/stand training alone have a beneficial effect on bladder, bowel, and sexual function?

Relationships between the leg movement and nerves in the low back regions have been identified.

Some evidence suggests that walk/step training alone can create improvements on bladder/bowel function. Researchers hypothesize that the sensory information created through walking or standing provides stimulation to the nerves in the low back region, which contains the nerves to stimulate bowel, bladder, and sexual function. Research has shown that bending and straightening the legs can been enhanced by how full the bladder is and the voiding of urine.

One of the consequences of SCI is the loss of muscle mass below the injury and a tendency to accumulate fat inside the abdomen (abdominal fat or visceral fat) and under the skin (subcutaneous fat). These changes and lower physical activity after SCI increase the risk for several diseases.

A single (weak-evidence) study measured body composition in four young males with complete injuries. Participants underwent 80 sessions of stand and step training without epidural stimulation, followed by another 160 sessions of stand/step training with epidural stimulation. This involved one hour of standing and one hour of stepping five days a week. After all training was complete, all four participants had a small reduction in their body fat, and all participants but one experienced an increase in their fat free body mass (i.e., the weight of their bones, muscles, organs, and water in the body) in comparison to their initial values prior to stimulation. While all participants experienced a reduction of fat, the amount of fat loss was minimal, ranging from 0.8 to 2.4 kg over a period of a year.

The first use of epidural stimulation was as a treatment for chronic pain in the 1960s. Since then, it has been widely used for chronic pain management in persons without SCI. However, it is important to recognize that the chronic pain experienced by those without SCI is different from the chronic neuropathic pain experienced after SCI. This may explain, to some extent, why epidural stimulation has not been as successful in pain treatment for SCI. The mechanism by which electrical stimulation of the spinal cord can help with pain relief is unclear. Some research suggests that special nerve cells that block pain signals to the brain may be activated by epidural stimulation.

There are a few studies focused on the role of epidural stimulation in managing pain after SCI. A number of other studies included a mix of different people with and without SCI. Because chronic neuropathic pain after SCI may not be the same as the chronic pain others experience, studies that do not separate mixed groups raise questions about the validity of findings. The number of individuals with SCI in these studies is often small, most were published in the 1980s and 1990s and so are quite dated, and the research is classified as weak evidence.

The results of this body of research show that some people may receive some pain reduction. Those who saw the most reduction in pain were individuals with an incomplete SCI. Also, satisfaction with pain reduction drops off over time. One study showed only 18% were satisfied 3 years after implantation. A different study looking at the long-term use of epidural stimulation for pain reduction found seven of nine individuals stopped using this method.

In the only recent study in this area, one woman with complete paraplegia (weak evidence) experienced a reduction in neuropathic pain frequency and intensity, and a reduction in average pain from 7 to 4 out of 10, with 0 being no pain and 10 being the worst imaginable pain. This improvement remained up to three months later after implantation of the epidural stimulation device.

It should be noted that the studies for pain place electrodes in different parts of the spinal cord compared to the more recent studies for voluntary movement, standing and stepping.

Using epidural stimulation to improve respiratory function is useful because it contracts the diaphragm and other muscles that help with breathing. Also, these muscles are stimulated in a way that imitates a natural pattern of breathing, reducing muscle fatigue. More common methods of improving respiratory function do not use epidural stimulation, but rather, directly stimulate the nerves that innervate the respiratory muscles. While such methods significantly improve quality of life and function in numerous ways, they are not without issues, including muscle fatigue from directly stimulating the nerves.

To date, most research into using epidural stimulation to improve respiratory function has been in animals. Recently, research has been done in humans and weak evidence suggests that epidural stimulation may:

  • help produce a cough strong enough to clear secretions independently.
  • reduce frequency of respiratory tract infections.
  • reduce the time required caregiver support.
  • help individuals project their voice better and communicate more effectively.

Long term use of epidural stimulation shows that improvements remain over years and that minimal supervision is needed, making it suitable for use in the community.

The impact of epidural stimulation on sexual function has been a secondary focus in research studies looking at standing and walking. Currently, there are reports from one male and two females.

After a training program of walk training with epidural stimulation, one young adult male reported stronger, more frequent erections and the ability to reach full orgasm occasionally, which was not possible before epidural stimulation. However, this study looked at effects of walk training and epidural stimulation together, which took place after several months of walk training without stimulation. Because the researchers did not describe what the individual’s sexual function was like after walk training, it is difficult to say how much benefit is attributed to epidural stimulation versus walk training.

In another study with two middle-aged females 5-10 years post-injury, one reported no change in sexual function and the other reported the ability to experience orgasms with epidural stimulation, which was not possible since her injury.

Botulinum toxin (Botox) injections and surgically implanted intrathecal Baclofen pumps are the most common ways to manage spasticity. Baclofen pumps are not without issues, however. Many individuals do not qualify for this treatment if they have seizures or blood pressure instability, and pumps require regular refilling.

Research in the 80s and 90s on the use of epidural stimulation for spasticity did not report very positive findings. It was noted that greater benefits were found in those with incomplete injury compared to those who were complete. Another paper concluded that (weak evidence) the beneficial effects of epidural stimulation on spasticity may subside for most users over a short period of time. This, combined with the potential for equipment failure and adverse events, suggested that epidural stimulation was not a feasible approach for ongoing management of spasticity.

More recently, positive results with epidural stimulation have been observed (weak evidence). This is likely due to improvements in technology, electrode placement, and stimulation parameters. Positive findings show that participants:

  • reported fewer spasms over 2 years
  • reported a reduction in severe spasms over 2 years
  • reported a reduction in spasticity
  • reported an improvement in spasticity over 1 year
  • were able to stop or reduce the dose of antispastic medication

For more information, visit our page on Botulinum Toxin and Spasticity!

In a study with a single participant (weak evidence) investigating walking, an individual implanted with an epidural stimulator also reported improvement in body temperature control, however details were not provided. More research is required to understand the role of epidural stimulation for temperature regulation.

In severe SCI, individuals may suffer from chronic low blood pressure and orthostatic hypotension (fall in blood pressure when moving to more upright postures). These conditions can have significant effects on health and quality of life. Some recent studies have looked at how epidural stimulation affects cardiovascular  function to improve orthostatic hypotension. Overall, they show (weak evidence) that epidural stimulation immediately increases blood pressure in individuals with low blood pressure while not affecting those who have normal blood pressure. They also showed that there is a training effect with repeated stimulation. This means that after consistently using stimulation for a while, normal blood pressure can occur even without stimulation when moving from lying to sitting.

Moreover, researchers are starting to believe that changes in orthostatic hypotension and blood pressure can promote changes in the immune system (Bloom et al., 2020). In the body, the blood helps to circulate immune cells so they are able to fight infections in various areas. One case study found that after 97 sessions of epidural stimulation, the participant had less precursors for inflammation and more precursors for immune responses. Although these changes are exciting, researchers are still unsure why this happens, and whether these effects occur with all people who are implanted with an epidural stimulator.

For individuals with tetraplegia, even some recovery of hand function can mean a big improvement in quality of life. Research into using epidural stimulation to improve hand function consists of one case study (weak evidence) involving two young adult males who sustained motor complete cervical spinal cord injury over 18 months prior.

The researchers reported improvements in voluntary movement and hand function with training while using epidural stimulation implanted in the neck. Training involved grasping and moving a handgrip while receiving stimulation. For 2 months, one man engaged in weekly sessions while the other trained daily for seven days. One participant was tested for a longer time as a permanent electrode was implanted, while the other participant only received a temporary implant. Both participants increased hand strength over the course of one session. Additional sessions brought additional gradual improvements in hand strength as well as hand control (i.e., the ability to move the hand precisely). These improvements carried over to everyday activities, such as feeding, bathing, dressing, grooming, transferring in and out of bed and moving in bed. Notably, these improvements were maintained when participants were not using epidural stimulation.

Being able to control your trunk (or torso) is important for performing everyday activities such as picking things up or reaching for items. One study found that using epidural stimulation can increase the amount of distance you are able to lean forward. The improvement in forward reach occurred immediately when the stimulation was turned on. The two participants in this study were also able to reach more side to side as well, but the improvement was minor.

Learning to make voluntary movements

Voluntary movements (i.e., being able to move your body when you want to) of affected limbs can occur with the use of epidural stimulation. Researchers are still unsure of the right training regimen to optimize results. For example, one study found that many sessions of step training with epidural stimulation are required for participants to slowly regain voluntary movement of the leg and foot with epidural stimulation when lying down. However, another study found that participants were able to voluntarily move their legs with stimulation and no stand training.

Voluntary movements (i.e., being able to move your body when you want to) of affected limbs can occur with the use of epidural stimulation. Researchers are still unsure of the right training regimen to optimize results. For example, one study found that many sessions of step and stand training with epidural stimulation are required for participants to slowly regain voluntary movement of the leg and foot with epidural stimulation when lying down. However, another study found that participants were able to voluntarily move their legs with stimulation and no stand training though the amount each participant was able to move their legs with epidural stimulation varied greatly. For example, one participant was able to voluntarily move their leg without any stimulation after over 500 hours of stand training with epidural stimulation while another participant from the same study was not able to voluntarily move their leg without stimulation after training. Overall, more than 25 people can move some or all of their leg joints voluntarily from the first time they receive epidural stimulation.

More recently, research shows that some with epidural stimulators can produce voluntary movements without stimulation on and without any intensive training program. In one study, participants did not do a consistent intensive training program, although many of them attended out-patient therapy or did therapy at home. Over the period of a year, 3 of 7 participants were able to voluntarily bend their knee, and bend and straighten their hips. Additionally, of those 3 participants, 2 were able to point their toes up and down. While the number of people able to make voluntary movements without stimulation is small, many more studies are underway.

Recent research indicates that epidural stimulation can influence walking function in individuals with limited or no motor function. While these findings are exciting, researchers are still learning how to use stimulation effectively to produce walking motions. Before being able to walk again, people must be able to make voluntary movements and be able to stand.

Learning to stand

Some studies have also found that with extensive practice (e.g., 80 sessions), independent standing (i.e., standing without the help of another person, but holding onto a bar) may be achieved without epidural stimulation. Gaining the ability to stand may also occur with stand training combined with epidural stimulation. However, the findings in regards to the effect of stand training with epidural stimulation have been mixed. For example, one study showed that stand training for 5 days a week over a 4 month period with epidural stimulation resulted in independent standing for up to 10 minutes in an individual with a complete C7 injury, while another study has suggested that independent standing for 1.5 minute can be achieved with epidural stimulation and 2 weeks of non-step specific training in an individual with complete T6 injury.

Learning to walk

Earlier research has found that epidural stimulation can help with the development of walking-like movements, but these movements do not resemble “normal” walking. Instead, they resemble slight up and down movements of the leg. Recent studies have shown that with 10 months of practicing activities while lying down on the back and on the side, in addition to standing and stepping training, people are able to take a step without assistance from another person or body weight support. While some individuals in these studies have been able to regain some walking function, they are walking at a very slow pace, ranging from 0.19 meters per second to 0.22 meters per second. This is much slower than the 0.66 meters per second required for community walking. For example, of the 4 participants in one study, two were able to walk on the ground with a walker, one was only able to walk on a treadmill, and one was able to walk on the ground while holding the hands of another person. These differences in walking abilities gained by participants were not expected.

In late 2018, one researcher demonstrated that constant epidural stimulation was interfering with proprioception, or the body’s ability to know where your limbs are in space, which ultimately hinders the walking relearning process. The solution to this problem involves activating the stimulation in a specific sequence, rather than having it continuously on. With this method and a years’ worth of training, participants were able to begin walking with an assistive device (such as a walker or poles) without stimulation. However, these individuals had to intensively practice standing and walking with stimulation for many months to produce these results. In these studies, one case of injury was reported where a participant sustained a hip fracture during walking with a body weight support. Further studies on how to individualize therapy will be necessary as the response to treatment in these studies varied greatly from person to person depending on the frequency and intensity of the stimulation.

Is it the training or the epidural stimulation?

Most of the stand/walk training conducted in the studies is with the use of a body weight support treadmill.


Arm and leg movement and blood pressure have been seen to improve with epidural stimulation, but the role of rehabilitation in these recoveries is unclear. Rehabilitation techniques can have an effect on regaining motor function. For example, step/walk training alone can help improve the ability to make voluntary movements, walking and blood pressure among individuals with incomplete injuries.  In much of the current research, epidural stimulation is paired with extensive training (typically around 80 sessions) before and after the epidural stimulator is implanted. Furthermore, these studies do not compare the effects of epidural stimulation to a control group who receives a fake stimulation (a placebo) which would help to see if stimulation truly has an effect. Without this comparison, we are unable to clearly understand the extent of recovery that is attributable to epidural stimulation versus the effects of training. However, evidence now shows that voluntary movement and cardiovascular function can be improve from the first time epidural stimulation is used, if the stimulation parameters are specific for the function and person, which supports the role of epidural stimulation in improving function.

Access to new medical treatment for those requiring it cannot come soon enough. Experimental therapies are typically expensive and not covered by health care. Rigorous and sufficient testing is required before treatments become standard practice and receive health care coverage. Epidural stimulation for improving function in SCI is a unique example because epidural stimulation technology has been used widely to treat intractable back pain in individuals without SCI. The benefit of this is that, if/when epidural stimulation for individuals with SCI is shown to be safe and effective, the move from experimental clinical practice could happen relatively quickly as a number of hurdles from regulatory bodies have already been overcome. That said, current barriers to accessing epidural stimulation noted in a survey study of doctors include a lack of strong evidence research showing benefits, a lack of guidelines for the right stimulation settings, and an inability to determine who will benefit from it.

In Canada, the cost for an institution to install an epidural stimulation system for back pain in those without spinal cord injury, which is a common procedure, was $21,595 CAD. The cost incurred by a Canadian citizen undergoing implantation in Canada is $0 as it is covered by publicly funded health care.

 

In the United States, the cost for an institution to install an epidural stimulation system for back pain in those without spinal cord injury ranged between $32,882 USD (Medicare) and $57,896 USD (Blue Cross Blue Shield). The cost incurred for American citizens in the US will vary widely depending on their insurance coverage.

In contrast, for individuals with SCI, an epidural stimulation system is reported to cost over $100,000 USD in Thailand, and higher in other countries. Prospective clients should be aware that the epidural stimulation offered by these clinics may not be the same as that in the research reported in this article.

The recommended course for those wishing to try epidural stimulation is to register in a clinical trial. Regardless, persons interested in pursuing surgery at a private clinic or registering for clinical trials will find it useful to refer to the clinical trial guidelines published by ICORD (https://icord.org/research/iccp-clinical-trials-information/) for information on what they should be aware of when considering having an epidural stimulator implanted. Research studies that involve epidural stimulation can be found by searching the clinicaltrials.gov database.

Overall, there is evidence that epidural stimulation can improve function and health after SCI in numerous ways. However, because of the invasive nature of epidural stimulator implantation, research in this area involves few participants, no control groups, and no randomization, so it is classified as weak evidence. It is therefore important to keep in mind that while these recent reports are encouraging, more rigorous studies with more participants are needed to confirm the benefits and risks of this treatment to determine its place in SCI symptom management.

Epidural stimulation is not “plug and play” technology. Each implanted device needs to be tailored to the spine of the recipient. Some individuals respond to certain stimulation settings while others may respond better to other settings. Furthermore, over time, the need to change stimulation settings or even reposition the implant to maintain effectiveness may be required. Extensive physical training appears to be required for epidural stimulation to be most effective in improving standing or walking. The additional benefit of epidural stimulation to walk training is not always clear from the literature.

 

For a list of included studies, please see the Reference List. For a review of what we mean by “strong”, “moderate”, and “weak” evidence, refer to the SCIRE Community Evidence Ratings.


Parts of this page have been adapted from the SCIRE Project (Professional) “Spasticity”, “Bladder Management”, and “Pain Management” chapters:

Hsieh JTC, Connolly SJ, McIntyre A, Townson AF, Short C, Mills P, Vu V, Benton B, Wolfe DL (2016). Spasticity Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Curt A, Mehta S, Sakakibara BM, editors. Spinal Cord Injury Rehabilitation Evidence. Version 6.0.

Available from: scireproject.com/evidence/rehabilitation-evidence/spasticity/

Hsieh J, McIntyre A, Iruthayarajah J, Loh E, Ethans K, Mehta S, Wolfe D, Teasell R. (2014). Bladder Management Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Noonan VK, Loh E, McIntyre A, editors. Spinal Cord Injury Rehabilitation Evidence. Version 5.0: p 1-196.

Available from: scireproject.com/evidence/rehabilitation-evidence/bladder-management/

Mehta S, Teasell RW, Loh E, Short C, Wolfe DL, Benton B, Hsieh JTC (2016). Pain Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Loh E, McIntyre A, Querée M, editors. Spinal Cord Injury Rehabilitation Evidence. Version 6.0: p 1-92.

Available from: scireproject.com/evidence/rehabilitation-evidence/pain-management/


Evidence for “What is epidural stimulation” is based on the following studies:

International Neuromodulation Society. (2010). Neuromodulation: An Emerging Field.

Toossi, A., Everaert, D. G., Azar, A., Dennison, C. R., & Mushahwar, V. K. (2017). Mechanically Stable Intraspinal Microstimulation Implants for Human Translation. Annals of Biomedical Engineering, 45(3), 681–694. Retrieved from http://link.springer.com/10.1007/s10439-016-1709-0

Evidence for “How does epidural stimulation work?” is based on the following studies:

Evidence for “How are epidural stimulation electrodes implanted?” is based on the following studies:

Lu, D. C., Edgerton, V. R., Modaber, M., AuYong, N., Morikawa, E., Zdunowski, S., … Gerasimenko, Y. (2016a). Engaging Cervical Spinal Cord Networks to Reenable Volitional Control of Hand Function in Tetraplegic Patients. Neurorehabilitation & Neural Repair, 30(10), 951–962. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/27198185

Lu, D. C., Edgerton, V. R., Modaber, M., AuYong, N., Morikawa, E., Zdunowski, S., … Gerasimenko, Y. (2016b). Engaging Cervical Spinal Cord Networks to Reenable Volitional Control of Hand Function in Tetraplegic Patients. Neurorehabilitation & Neural Repair, 30(10), 951–962.

Evidence for “Are there restrictions or precautions for using epidural stimulation?” is based on the following studies:

Moore, D. M., & McCrory, C. (2016). Spinal cord stimulation. BJA Education, 16(8), 258–263. Retrieved from https://linkinghub.elsevier.com/retrieve/pii/S2058534917300975

Wolter, T. (2014). Spinal cord stimulation for neuropathic pain: current perspectives. Journal of Pain Research, 7, 651–663.

Evidence for “Are there risks and side effects of epidural stimulation?” is based on the following studies:

Eldabe, S., Buchser, E., & Duarte, R. V. (2015). Complications of Spinal Cord Stimulation and Peripheral Nerve Stimulation Techniques: A Review of the Literature. Pain Medicine, 17(2), pnv025. Retrieved from https://academic.oup.com/painmedicine/article-lookup/doi/10.1093/pm/pnv025

Taccola, G., Barber, S., Horner, P. J., Bazo, H. A. C., & Sayenko, D. (2020). Complications of epidural spinal stimulation: lessons from the past and alternatives for the future. Spinal Cord, 58(10), 1049–1059. Retrieved from http://dx.doi.org/10.1038/s41393-020-0505-8

Evidence for “Epidural stimulation and bladder and bowel function” is based on the following studies:

Herrity, A. N., Williams, C. S., Angeli, C. A., Harkema, S. J., & Hubscher, C. H. (2018). Lumbosacral spinal cord epidural stimulation improves voiding function after human spinal cord injury. Scientific Reports, 8(1), 1–11. Retrieved from http://dx.doi.org/10.1038/s41598-018-26602-2

Herrity, April N., Aslan, S. C., Ugiliweneza, B., Mohamed, A. Z., Hubscher, C. H., & Harkema, S. J. (2021). Improvements in Bladder Function Following Activity-Based Recovery Training With Epidural Stimulation After Chronic Spinal Cord Injury. Frontiers in Systems Neuroscience, 14(January), 1–14.

Hubscher, C. H., Herrity, A. N., Williams, C. S., Montgomery, L. R., Willhite, A. M., Angeli, C. A., & Harkema, S. J. (2018). Improvements in bladder, bowel and sexual outcomes following task-specific locomotor training in human spinal cord injury. Plos One, 1–26.

Darrow, D., Balser, D., Netoff, T. I., Krassioukov, A., Phillips, A., Parr, A., & Samadani, U. (2019). Epidural Spinal Cord Stimulation Facilitates Immediate Restoration of Dormant Motor and Autonomic Supraspinal Pathways after Chronic Neurologically Complete Spinal Cord Injury. Journal of Neurotrauma, 2336, neu.2018.6006. Retrieved from https://www.liebertpub.com/doi/10.1089/neu.2018.6006

Beck, L., Veith, D., Linde, M., Gill, M., Calvert, J., Grahn, P., … Zhao, K. (2020). Impact of long-term epidural electrical stimulation enabled task-specific training on secondary conditions of chronic paraplegia in two humans. Journal of Spinal Cord Medicine, 0(0), 1–6. Retrieved from https://doi.org/10.1080/10790268.2020.1739894

Evidence for “Epidural stimulation and body composition” is based on the following studies:

Terson de Paleville, D. G. L., Harkema, S. J., & Angeli, C. A. (2019). Epidural stimulation with locomotor training improves body composition in individuals with cervical or upper thoracic motor complete spinal cord injury: A series of case studies. The Journal of Spinal Cord Medicine, 42(1), 32–38.

Evidence for “Epidural stimulation and pain” is based on the following studies:

Guan, Y. (2012). Spinal cord stimulation: neurophysiological and neurochemical mechanisms of action. Current Pain and Headache Reports, 16(3), 217–225.

Marchand, S. (2015). Spinal cord stimulation analgesia. PAIN, 156(3), 364–365.

Tasker, R. R., DeCarvalho, G. T., & Dolan, E. J. (1992). Intractable pain of spinal cord origin: clinical features and implications for surgery. Journal of Neurosurgery.

Cioni, B., Meglio, M., Pentimalli, L., & Visocchi, M. (1995). Spinal cord stimulation in the treatment of paraplegic pain. Journal of Neurosurgery, 82(1), 35–39.

Warms, C. A., Turner, J. A., Marshall, H. M., & Cardenas, D. D. (2002). Treatments for chronic pain associated with spinal cord injuries: many are tried, few are helpful. Clinical Journal of Pain, 18(3), 154–163.

Reck, T. A., & Landmann, G. (2017). Successful spinal cord stimulation for neuropathic below-level spinal cord injury pain following complete paraplegia: a case report. Spinal Cord Series and Cases, 3, 17049.

Evidence for “Epidural stimulation and respiratory function” is based on the following studies:

Hachmann, J. T., Grahn, P. J., Calvert, J. S., Drubach, D. I., Lee, K. H., & Lavrov, I. A. (2017). Electrical Neuromodulation of the Respiratory System After Spinal Cord Injury. Mayo Clinic Proceedings, 92(9), 1401–1414. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/28781176

DiMarco, A. F., Kowalski, K. E., Geertman, R. T., & Hromyak, D. R. (2006). Spinal cord stimulation: a new method to produce an effective cough in patients with spinal cord injury. American Journal of Respiratory and Critical Care Medicine, 173(12), 1386–1389.

DiMarco, A. F., Kowalski, K. E., Geertman, R. T., & Hromyak, D. R. (2009). Lower thoracic spinal cord stimulation to restore cough in patients with spinal cord injury: results of a National Institutes of Health-sponsored clinical trial. Part I: methodology and effectiveness of expiratory muscle activation. Archives of Physical Medicine & Rehabilitation, 90(5), 717–725.

Harkema, S. J., Wang, S., Angeli, C. A., Chen, Y., Boakye, M., Ugiliweneza, B., & Hirsch, G. A. (2018). Normalization of Blood Pressure With Spinal Cord Epidural Stimulation After Severe Spinal Cord Injury. Frontiers in Human Neuroscience, 12, 83.

DiMarco, A. F., Kowalski, K. E., Hromyak, D. R., & Geertman, R. T. (2014). Long-term follow-up of spinal cord stimulation to restore cough in subjects with spinal cord injury. The Journal of Spinal Cord Medicine, 37(4), 380–388.

Evidence for “Epidural stimulation and sexual function” is based on the following studies:

Harkema, S., Gerasimenko, Y., Hodes, J., Burdick, J., Angeli, C., Chen, Y., … Edgerton, V. R. (2011). Effect of epidural stimulation of the lumbosacral spinal cord on voluntary movement, standing, and assisted stepping after motor complete paraplegia: A case study. The Lancet, 377(9781), 1938–1947.

Darrow, D., Balser, D., Netoff, T. I., Krassioukov, A., Phillips, A., Parr, A., & Samadani, U. (2019). Epidural Spinal Cord Stimulation Facilitates Immediate Restoration of Dormant Motor and Autonomic Supraspinal Pathways after Chronic Neurologically Complete Spinal Cord Injury. Journal of Neurotrauma, 2336, neu.2018.6006. Retrieved from https://www.liebertpub.com/doi/10.1089/neu.2018.600

Evidence for “Epidural stimulation and spasticity” is based on the following studies:

Nagel, S. J., Wilson, S., Johnson, M. D., Machado, A., Frizon, L., Chardon, M. K., … Howard, M. A. 3rd. (2017). Spinal Cord Stimulation for Spasticity: Historical Approaches, Current Status, and Future Directions. Neuromodulation: Journal of the International Neuromodulation Society, 20(4), 307–321.

Dekopov, A. V., Shabalov, V. A., Tomsky, A. A., Hit, M. V., & Salova, E. M. (2015). Chronic spinal cord stimulation in the treatment of cerebral and spinal spasticity. Stereotactic and Functional Neurosurgery.

Dimitrijevic, M. R., Illis, L. S., Nakajima, K., Sharkey, P. C., & Sherwood, A. M. (1986). Spinal cord stimulation for the control of spasticity in patients with chronic spinal cord injury: II. Neurophysiologic observations. Central Nervous System Trauma, 3(2), 145–152. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=med2&AN=3490313

Midha, M., & Schmitt, J. K. (1998). Epidural spinal cord stimulation for the control of spasticity in spinal cord injury patients lacks long-term efficacy and is not cost-effective. Spinal Cord, 36(3), 190–192. Retrieved from https://www.nature.com/articles/3100532

Barolat, G., Singh-Sahni, K., Staas, W. E. J., Shatin, D., Ketcik, B., & Allen, K. (1995). Epidural spinal cord stimulation in the management of spasms in spinal cord injury: a prospective study. Stereotactic & Functional Neurosurgery, 64(3), 153–164.

Dekopov, A. V., Shabalov, V. A., Tomsky, A. A., Hit, M. V., & Salova, E. M. (2015). Chronic spinal cord stimulation in the treatment of cerebral and spinal spasticity. Stereotactic and Functional Neurosurgery.

Pinter, M. M., Gerstenbrand, F., & Dimitrijevic, M. R. (2000). Epidural electrical stimulation of posterior structures of the human lumbosacral cord: 3. Control Of spasticity. Spinal Cord, 38(9), 524–531. Retrieved from https://www.nature.com/articles/3101040

Evidence for “Epidural stimulation and temperature regulation” is based on the following studies:

Edgerton, V. R., & Harkema, S. (2011). Epidural stimulation of the spinal cord in spinal cord injury: current status and future challenges. Expert Review of Neurotherapeutics, 11(10), 1351–1353. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=med7&AN=21955190

Harkema, S. J., Gerasimenko, Y., Hodes, J., Burdick, J., Angeli, C., Chen, Y., … Edgerton, V. R. (2011). Supplementary index: Effect of epidural stimulation of the lumbosacral spinal cord on voluntary movement, standing, and assisted stepping after motor complete paraplegia: A case study. The Lancet, 377(9781), 1938–1947. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/21601270

Evidence for “Epidural stimulation and cardiovascular function” is based on the following studies:

Bloom, O., Wecht, J. M., Legg Ditterline, B. E., Wang, S., Ovechkin, A. V., Angeli, C. A., … Harkema, S. J. (2020). Prolonged Targeted Cardiovascular Epidural Stimulation Improves Immunological Molecular Profile: A Case Report in Chronic Severe Spinal Cord Injury. Frontiers in Systems Neuroscience, 14(October), 1–11.

Evidence for “Epidural stimulation and hand function” is based on the following study:

Lu, D. C., Edgerton, V. R., Modaber, M., AuYong, N., Morikawa, E., Zdunowski, S., … Gerasimenko, Y. (2016a). Engaging Cervical Spinal Cord Networks to Reenable Volitional Control of Hand Function in Tetraplegic Patients. Neurorehabilitation & Neural Repair, 30(10), 951–962. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/27198185

Evidence for “Epidural stimulation and movement: trunk control” is based on the following studies:

Evidence for “Epidural stimulation and movement: voluntary movements” is based on the following studies:

Rejc, E., Angeli, C. A., Bryant, N., & Harkema, S. J. (2017). Effects of Stand and Step Training with Epidural Stimulation on Motor Function for Standing in Chronic Complete Paraplegics. Journal of Neurotrauma, 34, 1787–18023. Retrieved from www.liebertpub.com

Angeli, C. A., Edgerton, V. R., Gerasimenko, Y. P., & Harkema, S. J. (2014). Altering spinal cord excitability enables voluntary movements after chronic complete paralysis in humans. Brain, 137(Pt 5), 1394–1409. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3999714/

Peña Pino, I., Hoover, C., Venkatesh, S., Ahmadi, A., Sturtevant, D., Patrick, N., Freeman, D., Parr, A., Samadani, U., Balser, D., Krassioukov, A., Phillips, A., Netoff, T. I., & Darrow, D. (2020). Long-Term Spinal Cord Stimulation After Chronic Complete Spinal Cord Injury Enables Volitional Movement in the Absence of Stimulation. Frontiers in systems neuroscience14, 35. https://doi.org/10.3389/fnsys.2020.00035

Evidence for “Epidural stimulation and movement: walking and standing” is based on the following studies:

Grahn, P. J., Lavrov, I. A., Sayenko, D. G., Straaten, M. G. Van, Gill, M. L., Strommen, J. A., … Lee, K. H. (2017). Enabling Task-Specific Volitional Motor Functions via Spinal Cord Neuromodulation in a Human with Paraplegia. Mayo Clinic Proceedings, 92(4), 544–554. Retrieved from http://dx.doi.org/10.1016/j.mayocp.2017.02.014

Harkema, S. J., Gerasimenko, Y., Hodes, J., Burdick, J., Angeli, C., Chen, Y., … Edgerton, V. R. (2011). Supplementary index: Effect of epidural stimulation of the lumbosacral spinal cord on voluntary movement, standing, and assisted stepping after motor complete paraplegia: A case study. The Lancet, 377(9781), 1938–1947. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/21601270

Rejc, E., Angeli, C. A., Atkinson, D., & Harkema, S. J. (2017). Motor recovery after activity-based training with spinal cord epidural stimulation in a chronic motor complete paraplegic. Scientific Reports, 7(1), 13476. Retrieved from www.nature.com/scientificreports

Rejc, E., Angeli, C., & Harkema, S. (2015). Effects of Lumbosacral Spinal Cord Epidural Stimulation for Standing after Chronic Complete Paralysis in Humans. PLoS ONE [Electronic Resource], 10(7), e0133998. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=med8&AN=26207623

Grahn, P. J., Lavrov, I. A., Sayenko, D. G., Straaten, M. G. Van, Gill, M. L., Strommen, J. A., … Lee, K. H. (2017). Enabling Task-Specific Volitional Motor Functions via Spinal Cord Neuromodulation in a Human with Paraplegia. Mayo Clinic Proceedings, 92(4), 544–554. Retrieved from http://dx.doi.org/10.1016/j.mayocp.2017.02.014

Gill, M. L., Grahn, P. J., Calvert, J. S., Linde, M. B., Lavrov, I. A., Strommen, J. A., … Zhao, K. D. (2018). Neuromodulation of lumbosacral spinal networks enables independent stepping after complete paraplegia. Nature Medicine, 24(11), 1677–1682. Retrieved from https://doi.org/10.1038/s41591-018-0175-7

Angeli, C. A., Boakye, M., Morton, R. A., Vogt, J., Benton, K., Chen, Y., … Harkema, S. J. (2018). Recovery of Over-Ground Walking after Chronic Motor Complete Spinal Cord Injury. New England Journal of Medicine, 379(13), 1244–1250. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=30247091

van de Port, I. G., Kwakkel, G., & Lindeman, E. (2008). Community ambulation in patients with chronic stroke: How is it related to gait speed? Journal of Rehabilitation Medicine, 40(1), 23–27.

Wagner, F. B., Mignardot, J.-B., Le Goff-Mignardot, C. G., Demesmaeker, R., Komi, S., Capogrosso, M., … Courtine, G. (2018). Targeted neurotechnology restores walking in humans with spinal cord injury. Nature, 563(7729), 65–71. Retrieved from http://www.nature.com/articles/s41586-018-0649-2

Angeli, C. A., Edgerton, V. R., Gerasimenko, Y. P., & Harkema, S. J. (2014). Altering spinal cord excitability enables voluntary movements after chronic complete paralysis in humans. Brain, 137(Pt 5), 1394–1409. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3999714/

Carhart, M. R., He, J., Herman, R., D’Luzansky, S., & Willis, W. T. (2004). Epidural spinal-cord stimulation facilitates recovery of functional walking following incomplete spinal-cord injury. IEEE Transactions on Neural Systems & Rehabilitation Engineering, 12(1), 32–42. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=med5&AN=15068185

Harkema, S. J., Wang, S., Angeli, C. A., Chen, Y., Boakye, M., Ugiliweneza, B., & Hirsch, G. A. (2018). Normalization of Blood Pressure With Spinal Cord Epidural Stimulation After Severe Spinal Cord Injury. Frontiers in Human Neuroscience, 12, 83.

Legg Ditterline, B. E., Aslan, S. C., Wang, S., Ugiliweneza, B., Hirsch, G. A., Wecht, J. M., & Harkema, S. (2020). Restoration of autonomic cardiovascular regulation in spinal cord injury with epidural stimulation: a case series. Clinical Autonomic Research, (0123456789), 2–5. Retrieved from https://doi.org/10.1007/s10286-020-00693-2

Evidence for “Costs and availability of epidural stimulation” is based on the following studies:

Solinsky, R., Specker-Sullivan, L., & Wexler, A. (2020). Current barriers and ethical considerations for clinical implementation of epidural stimulation for functional improvement after spinal cord injury. Journal of Spinal Cord Medicine, 43(5), 653–656.

Kumar, K., & Bishop, S. (2009). Financial impact of spinal cord stimulation on the healthcare budget: a comparative analysis of costs in Canada and the United States. Journal of Neurosurgery: Spine.

Image credits
  1. Image by SCIRE Community Team
  2. Image by SCIRE Community Team
  3. Image by SCIRE Community Team
  4. Image by SCIRE Community Team
  5. Adapted from image made by Mysid Inkscape, based on plate 770 from Gray’s Anatomy (1918, public domain).
  6. Pregnant woman holding tummy. [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)] via Google Images.
  7. Edited from Nervous system, Musculature. ©Servier Medical Art. CC BY 3.0.
  8. Neurons ©NIH Image Gallery. CC BY-NC 2.0.
  9. Image by SCIRE Community
  10. bladder by fauzan akbar from the Noun Project
  11. Large Intestine by BomSymbols from the Noun Project
  12. Feet by Matt Brooks from the Noun Project
  13. hip by priyanka from the Noun Project
  14. visceral fat by Olena Panasovska from the Noun Project
  15. Lightning by FLPLF from the Noun Project
  16. Lungs by dDara from the Noun Project
  17. Love by Jake Dunham from the Noun Project
  18. Male by Centis MENANT from the Noun Project
  19. Female by Centis MENANT from the Noun Project
  20. Image by SCIRE Community
  21. Temperature by Adrien Coquet from the Noun Project
  22. Heart by Nick Bluth from the Noun Project
  23. Image by SCIRE Community
  24. Hand by Sergey Demushkin from the Noun Project
  25. Torso by Ronald Vermeijs from the Noun Project
  26. Yoga posture by Gan Khoon Lay from the Noun Project
  27. Standing by Rafo Barbosa from the Noun Project
  28. Walking by Samy Menai from the Noun Project
  29. Image by SCIRE Community
  30. Canada by Yohann Berger from the Noun Project
  31. United States of America by Yohann Berger from the Noun Project

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.

Our People: John Cobb on Occupational Therapy

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Authors: Sarah Yada Seto, Dominik Zbogar | Published: 30 November 2021

 

 

Insights and Experiences of an Occupational Therapist

We spoke to John Cobb, Occupational Therapist (OT) in the Acute Spine Unit at Vancouver General Hospital. John has been an OT for 28 years and provides his advice and insights on his role, and how work in this field has evolved over the years. 

Can you describe your role as a healthcare provider? 

I work in acute care, so I primarily look after people with new injuries – they tend to be traumatic injuries from car accidents, falls, and sports. We also admit patients with spinal cord injury (SCI) from cancer as well as infections. The length of stay for patients varies from about 3 weeks and, in rare cases, up to a year. It’s about taking care of people and doing much more than just applying your knowledge and skills. People with SCI are in a tough spot, and don’t know what to do next. You need to connect with the person, help them be empowered and regain control of their life. 

What changes have you seen in rehab, treatment and outcomes for people with SCI over time? How has your rehab practice changed over time? 

There has been a big shift to evidence-based practice and standardization. Nowadays, the work is based on both clinical experience and knowledge, but also by integrating research outcomes and taking things from ‘bench to bedside’. In terms of those first hours and days, and how people are diagnosed … all of that has improved. The surgical management they receive has also improved. With continued revisions to the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) – the diagnosis tool we use – more and more patients are being diagnosed as incomplete. It’s interesting. It may be that more incomplete injuries occur these days, but the increase could be the result of being more accurately diagnosed. The diagnosis sets the trajectory of care. We can now say to people – an incomplete injury is more ‘open’ in terms of the possibility for improvements. There are now different expectations and different hopes.

What are some of the greatest challenges you have seen in your field?

One of the biggest challenges relates to the complexity of the injury. On a medical and physical level it’s managed pretty well in the acute and rehabilitation phases of care. With some long-term issues like spasticity and pain, a lot of work has been done but I still think that the spinal cord injury community would say its not good enough yet. They would say, “If I have to live with a SCI, could I at least be pain free?” There’s a certain kind of complexity, acuity, and dependency that are thrust upon these individuals in the beginning, and then there is the ‘push and pull’ of the system that is trying to meet those needs. Challenges related to having the time, equipment, space, technology that you need to do your best job arise. It’s not all bad… but I do feel that people are discharged out of the formal health care system quickly. 

What inspires you most about your role? 

First, it’s the staff who are willing to go the extra mile and do whatever they need to do. They give their patients every chance to succeed. Second, it’s the people who are newly living with SCI and have every reason to give up, and complain, and be mad… but they just find a new and unique way to dig deep, face the challenge, and have a good life! 

How has technology in rehab advanced over time?

Innovative technology is constantly being created and developed. Matching the right tech with the right person is key. I hope the next big step will be to make all these innovations universally available – quickly, easily, and affordably. If a piece of technology is awesome but a person cannot have it, it does them no good. Apple products tend to be disability friendly and starting with that can simply mean, “Hey, let’s turn on your voice control so you can control your iPhone or iPad.” SCI is so complex though – you can have tech like voice control to access your iPhone, but it doesn’t mean you are completely physically independent. In acute care – if you don’t have somebody to set you up but you need it, then it doesn’t even matter if the tech is in the room… Sometimes it feels like the system does not want to deal with that level of detail, but living with SCI is in the details. 

What are some of the best resources you recommend for people with SCI? 

For those who are in acute care and rehab, I think one of the best resources is the knowledgeable staff; there are many professionals who are deeply dedicated to this unique population. Also, there are lots of community-based organizations that are there to provide ongoing support including SCI-BC and SCIRE Community. Once the patient returns to the community – it’s invaluable to connect with other people with SCI who have lived it and know it. It’s really big. My hope that is that everybody that goes into the community will connect with someone.

What keeps you sane?

Sometimes I like being by myself and getting in some quiet time, but usually I’m pretty active. Vancouver is great for staying active – and I have a close network of family and friends. I enjoy hiking, cross-country skiing, going out on the seawall, and going to restaurants when I can! 

What advice do you have for those who will be entering your field?

This work is not easy but it’s important – and people will truly rely on you to be excellent and for that reason, it’s completely worth it.

Wheelchair Maintenance

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Author: Sharon Jang | Reviewer: Ian Denison | Published: 28 November 2022 | Updated: ~

Maintaining your wheelchair is important to expanding its lifespan and injury prevention. This page provides an overview on how you can keep your wheelchair in good shape.

Key Points

  • Maintaining your wheelchair on a regular basis can help save money on repairs, extend the life of your wheelchair, and prevent injuries.
  • Maintenance involves two aspects: checking to make sure your wheelchair is in good shape (inspections) and minor tune ups.
  • Maintaining your wheelchair is beneficial, but does not replace an annual wheelchair inspection by your wheelchair provider.

Regularly maintaining your wheelchair can help you save money from repairs, extend the life of your wheelchair, and prevent injuries. Some weak evidence research has found that individuals who did not regularly maintain their wheelchairs are over 10 times more likely to have a wheelchair-related accident. Knowing what to do when your wheelchair malfunctions may provide you with more independence and reassurance when travelling. Although more complicated and technical maintenance should be left to a wheelchair maintenance expert, there are many things you can do at home yourself.

For a review of what we mean by “strong”, “moderate”, and “weak” evidence, refer to the SCIRE Community Evidence Ratings.

Maintenance scheduling

The numerous maintenance tasks listed in this article may seem overwhelming. This article goes over many aspects of your wheelchair to inspect and covers multiple maintenance tasks to be completed. Completing all of these tasks in one go may require a lot of time and energy. If this is not feasible for you, try breaking up the monthly maintenance items into different weeks. For example:

  • Week 1: Check tires– inspect tires/casters, check wheel lock.
  • Week 2: Frame maintenance – inspect frame, check nuts and bolts, wipe down frame.
  • Week 3: Wheel Maintenance – clean axles, lubricate if needed, inspect wheel bearing, check spokes.
  • Week 4: Supports – check back rest, foot support, clean upholstery.
Tool Image Purpose
Wrench To turn nuts and bolts or to prevent them from turning when loosening or tightening.
Lubricant (e.g., graphite, PTFE/Teflon) Lubricates moving parts and prevents them from corroding.
Screwdrivers (with various heads)
Slotted
Philips
Torx
Robertson
Pozidrive
Used to undo or tighten screws on a wheelchair.
Hex keys (Allen keys) Used to turn sockets with a hexagonal head. You will either need metric or imperial hex keys, depending on your wheelchair.
Tire pumps Standing tire pumps are recommended as they are needed to pump tires up to over 50 psi.
Tire levers Used to lift the tire off and to access the inner tube of a tire.

Several parts of a manual wheelchair may require maintenance. We discuss these maintenance checks below. If you find anything wrong with your wheelchair, contact your wheelchair service provider.

Weekly maintenance

Tire inflation

To maximize pushing efficiency, it is important that your tires are always properly inflated. Weak research evidence suggests that tires deflated by more than 50% result in using more energy when pushing. However, it must also be noted that softer tires perform better on soft surfaces, such as grass or gravel. For general daily use, tires should always be inflated to the recommended values indicated on the side of the tire.

There are two ways to check tire pressure:

  1. For a more accurate reading, use a standing bicycle tire pump with a gauge.
  2. If you do not have a pump with a gauge, press down firmly on your tire with your thumb. If it presses in at all, it requires inflation.

Types of valves: Presta (left), Schraeder (right)

The amount of air required for your specific tire is indicated on the side of your tire. To inflate your tire, a standing pump, a gas station pump, or a hand pump may be used. Note that most hand pumps are not able to inflate tires over 50 psi; a high-pressure hand pump is required for tires. In addition, gas station pumps are only able to pump up Schraeder valves as Presta valves require an adaptor.

Refer to our article on Manual Wheelchairs for more information!

Cushion

Your cushion is essential to maintaining a good seated posture and for skin health. To ensure that your cushion is in its best shape, inspect the cushion and cover on a weekly basis. When inspecting the cushion cover, look for any holes, signs of wear, or flaking on the underside of the cushion, and make sure the zipper is working properly.

Maintaining your cushion depends on what kind of cushion you have:

  • For gel cushions: knead the gel from outside to inside. Ensure that the gel is redistributed, and that gel is present under areas of high pressure (e.g., in the area of your sit bones). In addition, ensure that there are no leaks in your cushion.
  • For foam cushions: check that the foam is not breaking down or crumbling anywhere.
  • For air cushions: ensure that your cushion is properly inflated. Check for leaks. If you think your cushion may have a leak, submerge it underwater and check for bubbles.

Monthly maintenance

Cushion and cushion cover

Keeping your cushion clean is important, as dirt on the cushion may lead to skin breakdown, and may leave a smell on your cushion. Once a month, wipe down the cushion with a clean damp cloth and soap. Wash the cushion cover in a washing machine, and follow the instructions in the cushion guide. Make sure to hang dry the cover, as placing the cushion cover in the dryer may result in shrinkage which may result in the cover being too small for your cushion.

Intact (green) and worn out (red) tread on a wheelchair tire.15

Tires

The tires are a key component of the wheelchair subjected to daily wear. Inspect your tires once a month to make sure they are in good shape. Look for any signs of wear, cracks, bulges, looseness, damage, or flat spots.

Wheel bearing

The wheel bearings are located within the hub of the rear tire, and help to allow the wheel to turn freely and smoothly. Bearings normally wear out over time with use. You will know it is time to replace a bearing if you start hearing a knocking, or more infrequently, a squeaking sound as you wheel. If you suspect that you need your wheel bearing replaced, contact your local wheelchair service provider.

The wheel bearing should be tightened to a happy medium: a wheel bearing that is too loose may result in side to side movement of a wheel, while a wheel bearing that is too tight may result in additional resistance, resulting in an increased amount of energy spent while using your wheelchair. To check that the wheel bearings are not too tight or too loose, lift one side of the wheelchair up and spin the wheel. The tire should spin easily and should not slow and stop quickly after being spun. After the wheel stops spinning, it should spin backwards a little and should not wiggle side to side too much.

Large wheel axle

Rear wheels may be fixed (i.e., not removable) or quick release (i.e., removable). To ensure that the wheels are in place and are not loose, wiggle the wheel in all directions. If you have a fixed axle, there should be no play in the wheel. If you have a quick-release axle, some play is acceptable.

If you have a quick-release axle, test the release mechanism and ensure that the wheel securely locks back in place. A wheel that does not latch back in securely may result in an accident, and should be addressed as soon as possible.

Wheel alignment – wheelchair tracking

When looking at your wheelchair from above, the two rear wheels should be parallel to each other. Having wheels that are misaligned may result in greater energy expenditure and veering of the wheelchair when pushing. Needing to constantly correct for a veer when pushing may result in reduced control over the direction that a wheelchair is moving in, a strain in one arm and/or an increase use in energy.

To check whether your tires are aligned, roll through a puddle of water and allow the wheelchair to coast. The wheelchair should maintain its direction, and the tracks of the chair should be straight.

Spokes

Spokes are attached from the wheel rim (outer part of the wheel) to the hub (center part of the wheel), and help to distribute the forces of wheeling, such as the weight of the user, wheeling over surfaces, and braking. The spokes on a wheel act to prevent the tire from collapsing and adds stiffness to a wheel by acting as an anchor for the hub of the wheel.

When inspecting your spokes, you want to check that none of the spokes are bent and that there is enough tension in the spokes. Having enough tension in each of the spokes is particularly important, as having one loose spoke will lead to others becoming loose. Signs of loose spokes include a faint metallic snapping sound as you move. To check tension in the spokes, you have two options:

  1. Squeeze the spokes in pairs around the entire wheel. If a spoke gives when being squeezed gently, it may be loose.
  2. The ping test: spin the wheel and hold a pencil against each spoke. You should hear a normal pinging sound. Any spoke that sounds off indicates a loose spoke.
Wheel locks
Casters

Caster stem that is not aligned with the caster wheel.19

Casters are the small wheels found on the front of the wheelchair that help to stabilize the wheelchair. Begin by inspecting your casters for wear, cracks, looseness, tears, and bulges.

An example of a floating caster. Note the space between the bottom of the wheel and the ground.18

Secondly, to ensure that the casters are effectively stabilizing the wheelchair, check that both caster wheels are in contact with the floor and that the caster stem is aligned vertically. As the casters are required for maneuvering, it is important to ensure that they are able to turn freely around the axle. Check the casters for fluttering, or a shimmy/rapid vibration of the casters when moving.

Clean the caster wheel. Remove any dirt, lint, or hair that may have been collected in the caster axle using scissors, pliers, or tweezers. Further clean the caster using a clean damp cloth or with a toothbrush.

Caster bearing

1. Inspect for wear. 2. An example of a handrim with scratches. 3.Inspect the tightness by pulling out on the hand rim. 4. Tighten as necessary.21

Like the rear wheel, casters consist of wheel bearings to ensure smooth rolling. To check that the bearings are at a happy medium in tension, spin the caster wheels and the caster assembly, and push the caster side to side. Grinding and excessive play in the caster bearings are indicative of a problem.

Handrim

The handrims are rings connected to the rear wheel by bolts, and are used to propel the wheelchair. Most handrims are made out of plastic or metal (e.g., aluminum, steel), and may be coated in vinyl for extra grip. It is recommended to inspect your handrims monthly for wear, dents, cracks, or bends – they should be smooth all around. In addition, make sure that the hand rims are not loose. If loose, try tightening the bolts that connect the handrims to the wheel.

Frame

1. Common weld points.
2. Inspect the weld points.
3. Example of a cracked weld.22

Wheelchair frames consist of a series of metal tubes that have been welded together. Each month, check the welds to make sure that the tubes are held together. Inspect the frame for cracks or fractures. In addition, wipe down the frame each month with a clean damp rag. A toothbrush may be used to remove more difficult dirt. Avoid using a hose, power washer, or washing your wheelchair in the shower as it may cause the bearings to rust.

Nuts and Bolts

Common sites of nuts and bolts on manual wheelchairs.23

There are many nuts and bolts used on a wheelchair to hold various parts together. Loose nuts and bolts on your wheelchair may not only lead to rattling noises, but may not hold the part correctly and may fall out. Check the nuts and bolts on your wheelchair, and tighten them if loose. Make sure not to over tighten the nut or bolt, as it could damage the part or increase wheeling resistance.

Backrest

As the backrest is used to support your sitting posture and can impact your skin health, it is important to check that it is in good shape. To do so, check the upholstery for tears, wears, stretching, or metal parts that have poked through. If you have a rigid back, check that the backrest does not wiggle and is tightly secured. In addition, make sure that the backrest height is level. It is possible for a backrest bracket to become loose, resulting in one side of the backrest being higher than the other.

If you have an adjustable sling back, observe the tension of the backrest as it may stretch over time. Adjust the back as needed.

Foot support

The foot support is often the first part of the wheelchair that comes into contact with obstacles. For example, it may be used to help open doors, act as bumpers, and may be scraped along the ground. As the foot support is used to help maintain posture, it is important to keep it intact. Inspect the footrest to ensure that it is not loose. If you have swiveling foot rests, ensure that they swing away with ease, and can latch back properly. Also be sure to check the footrests for wears on the pins, bolts, and bushing, and tighten these parts if necessary.

Maintaining a power wheelchair may seem intimidating given the integration of electronics, but most activities are fairly simple. Below we discuss the tasks you should complete with your wheelchair.

Refer to our article on Power Wheelchairs for more information!

Daily

Battery

Properly charging your battery is important in maintaining its health. Do not charge the battery too frequently with little use, or let your battery completely die. If you are using your wheelchair every day, charge your batteries every night. Batteries should be charged for 8-12 hours, even though the charging lamp has gone off.

Plastic shrouds

Shrouds are the plastic coverings that protect the electronics and the battery of the wheelchair from dirt and moisture. To check them, make sure that they are present and intact. Try to jiggle the shrouds around to ensure they are not loose.

Brakes

The brakes are essential to safe use of your wheelchair. On a power wheelchair, the brakes are connected to the motor. When you drive, they automatically disengage, and when you stop, they automatically re-engage with an audible clicking sound. If you suspect something wrong with your brakes, try the following:

    1. Turn down the speed of your wheelchair
    2. Push the joystick forward and then stop. Upon stopping, you should hear a clicking sound. This indicates that your brakes are working.

Weekly

Tire inflation, Cushion inspection

Similar to manual wheelchairs, pneumatic tires and cushions should be inspected on a weekly basis to optimize their performance. Refer to the tire inflation and cushion inspection instructions in the manual wheelchair maintenance section above.

Motor

The motor is an integral part of the wheelchair, as its job is to convert power from the battery into energy to move the chair. It is normal for the motor to make some noise when it is being used. Try to become accustomed to what your motor sounds like so you are able to detect any changes. Overtime, it is normal for the motor to become a bit louder; however, excessive noise may be indicative of an issue. If you notice any sounds that you are unable to recognize, contact your wheelchair provider.

Controller and joystick

The controller of a wheelchair often consists of a power button, a screen, and a joystick. It is the interface used to control the driving, speed, and positioning of your wheelchair. Before inspecting your controller, make sure that it is switched to off. There are two main aspects of inspecting the controller:

    1. Check the joystick and the rubber connection between the joystick and the control for any cracks or wear. This protective covering acts to keep dust, dirt, and moisture out of the electronics. And so damage to the covering may eventually lead to failure of the control.
    2. Check the wiring of the joystick. Ensure that none of the connecting cables are frayed or showing through the insulation.

Monthly

Cushion, cushion cover, and foot plates.

Cushions, cushion covers, and footplates should be maintained and inspected at least once a month. The maintenance and checking process for these items are similar to manual wheelchairs. For more information, refer to the section “What maintenance and checks should I do for my manual wheelchair?” above.

Tire

The treads on your tire play a key role in maintaining traction and maintaining the stability and maneuverability of the wheelchair. Some tires may have less tread than others; note how much tread your tire starts off with. Check the tire treads monthly to ensure that they are not worn.

Caster

The axles of the front caster wheels of the wheelchair are the lowest to the ground, and thus are susceptible to picking up hair, dust, lint, and dirt. Buildup on your axles can lead to premature wearing and increased rolling resistance. For example, hair wrapped around the caster wheel can lead to breakage. Using a pair of scissors, tweezers, a toothbrush, or pliers, remove debris from the caster.

Frame

Inspect the frame and weld points on the wheelchair and ensure there are no cracks. Make sure all fasteners are appropriately tight.

Backrest

The backrest of your wheelchair is important for support and your posture. Maintaining the backrest of a power wheelchair is similar to a manual wheelchair. Refer to the manual wheelchair section for further detail.

Wiring and electronics

There are many wires throughout a powered wheelchair that are essential to making the wheelchair move. To safeguard the use of your wheelchair, make sure that all of the wires are in place and free from dirt and corrosion. If you notice any exposed wires or corrosion on the wires, take it to a dealer. If wires are hanging out or are in the way of your day to day use, it may be beneficial to connect the wires to a support (e.g., arm rest, frame, etc) as shown below.

Diagram of the wheel locks and the bolts that can be adjusted.31

Wheel lock not locking wheels

If your wheelchair is still moving despite your wheel locks being on, first check to see if your wheels may be underinflated. Try inflating your tires to the recommended pressure. If the wheel locks are still ineffective, try adjusting the position of the wheel lock by loosening the bolts securing the clamp on the frame of the wheelchair. Slide the adjustment bar as required, and tighten up the bolts. If your brakes look like they are worn, contact your local wheelchair service provider for a replacement.

Wheelchair Keeps veering to one side

One way to check tracking is by rolling through a puddle of water. Take note of the water trail made from the wheels. Are they parallel and straight?32

As you push your wheelchair, it should travel straight forward. However, your wheelchair may sometimes veer, or pull to one side, when you intend to go forward in a straight line. Before trying to resolve this issue, ensure that your chair is actually pulling one way, and that it isn’t related to an uneven surface or unequal strength. To do this, propel your wheelchair forward as far as you can with one push. Note any deviations to a side. Turn around, and perform the same action in the opposite direction. This is to cancel out the effect of an uneven surface. If you have identified a pulling of your wheelchair in one direction, something is causing poor tracking. There are multiple reasons why your wheelchair may veer to one side when you are pushing.

  • Caster:
    • Vertical alignment of the caster may be off.
    • Caster fork may be misaligned.
    • Hair may be wrapped around one of the casters.
  • Tire:
    • Check to ensure that the tire pressure on both sides are equal.
    • Make sure that axles are mounted symmetrically on the frame.
  • Frame:
    • Make sure the frame is sitting evenly. Check that the footplates are sitting at an equal height.

Patching a flat inner tube

If you are using a wheelchair with air-filled tires, chances are you may encounter a flat tire. If you only have a patch kit on you, follow the instructions below on how to fix a tire with a patch kit. Depending on the extent of the damage done on your inner tube, a patch may suffice. Patch kits, tires, and inner tubes may be purchased from bicycle shops or wheelchair vendors.

  1. Deflate the tire as much as possible.
  2. Remove the inner tube from the tire. To do this, insert a tire lever under the edge of the tire above a spoke. Secure the hooked end of the tire lever around a spoke. Insert a second lever a few inches away from the first, and push down on it until that area of the tire flips over the rim. Slide this lever around the tire in a clockwise direction until the tire is removed.
  3. Remove the inner tube under the tire.
  4. Determine where the leak is by over inflating the tire and listening/feeling for the air escaping. If you are unable to successfully locate the leak, submerge the air-filled tire under water and watch for bubbles.
  5. Once you have identified the hole, mark it with a pen or marker.
  6. Use the sandpaper in the patch kit to sand the area around the hole. This will help the patch adhere to the tube better.
  7. Let the air out and apply a thin layer of rubber cement over the hole. Make sure you spread the cement over an area large enough to encompass the patch. Wait for the cement to dry.
  8. When the cement is dry, apply the patch firmly to the inner tube. Now we are ready to put the tire back together.
  9. Inflate the tube until it holds its shape.
  10. Find the valve and align it with the valve hole on the rim. Use your hands to knead the tire back onto the rim. You may need to use your tire levers to help put the last bit of the tire back onto the rim, but be careful not to pinch the inner tube.
  11. Re-inflate the tube to the recommended value on the tire wall.

To replace an inner tube instead of patching it, skip steps 4-8.

Fixing a leaky air cushion

If you notice a leak in your air cushion, it can be easily repaired with a patch. While ROHO cushions come with a patch, other brands may require you to order some from the manufacturer.

  1. Determine where the leak is. To do so, inflate your cushion and submerge it underwater. Where you see bubbles is indicative of the leak spot.
  2. Mark the hole by placing a toothpick into the hole.
  3. Allow the cushion to completely dry by laying it out on a towel.
  4. Clean the area around the hole using the alcohol wipe provided. Let it dry.
  5. Peel the backing off of the patch and place it over the hole. Firmly press on the patch until there is a good seal.
  6. Reinflate the cushion

Maintaining your wheelchair is important to its longevity and its performance. Completing various inspections and simple maintenance tasks on a regular basis is fairly simple, and can be done by yourself or a family, friend, or caregiver.

It is best to discuss all wheelchair modifications and big maintenance with your wheelchair provider should you find any major issues. This article is not intended to replace yearly professional wheelchair maintenance/tune ups.

For a review of what we mean by “strong”, “moderate”, and “weak” evidence, please see SCIRE Community Evidence Ratings.

Evidence for “Why is wheelchair maintenance important” is based on:

Chen WY, Jang Y, Wang JD, Huang WN, Chang CC, Mao HF, Wang YH. Wheelchair-related accidents: relationship with wheelchair-using behavior in active community wheelchair users. Archives of physical medicine and rehabilitation 2011;92(6):892-898.

Evidence for “What maintenance should be done for a manual wheelchair?” is based on:

Boninger, M., Kirby, R.L., Oyster, M., Pearlman, J. Cooper, R.A.,…Toro, M. (2017). Wheelchair maintenance training program: Clinician’s reference manual. Retrieved from: http://www.upmc-sci.pitt.edu/node/924

Golden, J., Colescott, D. (2017). Manual wheelchair maintenance checklist [PDF]. Retreived from: http://sci.washington.edu/summit2017/MANUAL_WHEELCHAIR_MAINTENANCE_CHECKLIST-SCI_Summit2017.pdf

Manual Wheelchair Maintenance Checklist.(n.d.). Retreived from: http://sci.washington.edu/summit2017/MANUAL_WHEELCHAIR_MAINTENANCE_CHECKLIST-SCI_Summit2017.pdf

Model systems knowledge translation center (2018). Maintenance guide for users of manual and power wheelchairs [PDF]. Retrieved from: https://msktc.org/sci/factsheets/maintenance-guide-users-manual-and-power-wheelchairs

Sawatzky BJ, Miller WC, Denison I. Measuring energy expenditure using heart rate to assess the effects of wheelchair tire pressure. Clinical Rehabilitation 2005;19(2):182-7.

Evidence for “What maintenance should be done for a power wheelchair?” is based on:

Model systems knowledge translation center (2018). Maintenance guide for users of manual and power wheelchairs [PDF]. Retrieved from: https://msktc.org/sci/factsheets/maintenance-guide-users-manual-and-power-wheelchairs

Boninger, M., Kirby, R.L., Oyster, M., Pearlman, J. Cooper, R.A.,…Toro, M. (2017). Wheelchair maintenance training program: Clinician’s reference manual. Retrieved from: http://www.upmc-sci.pitt.edu/node/924

Evidence for “What are some simple repairs I can do?” is based on:

Denison, I. (2006). Wheelchair maintenance series [PDF]. Retrieved from: http://www.vch.ca/_layouts/15/DocIdRedir.aspx?ID=VCHCA-1797567310-1552

Image credits

  1. Crescent brand 8-inch adjustable wrench. ©Rico402. CC0 1.0
  2. WD-40 Specialist Dirt & Dust resistant dry lube PTFE spray. ©WD-40 2020
  3. Screw head – slotted. ©Inductive load. Public domain.
  4. Diagram of a screw head – Phillips. ©Inductive load. Public domain
  5. Diagram of a screw head – Pozidrive. ©Inductive load. Public domain
  6. Diagram of a screw head – Robertson square drive. ©Inductive load. Public domain
  7. Diagram of a screw head – Torx. ©Inductive load. Public domain
  8. Construction tool hardware construct allen key. ©Max Pixel. CC0 1.0
  9. Lezyne and Topeak Road Morph bike pumps. © CC-BY-2.0
  10. Different kinds of handicapped equipment. © Modified by the SCIRE Community Team
  11. Tyre Levers ©Ian Harvey. CC0
  12. Checking tire pressure. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  13. Types of tire valves. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  14. Checking cushion cover. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  15. Tire treads. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  16. Checking the wheel bearing. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  17. Inspecting spokes. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  18. Floating caster. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  19. Misaligned caster stem. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  20. Cleaning caster. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  21. Inspecting handrim. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  22. Inspecting wheelchair frame. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  23. Nuts and bolts locations. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  24. Checking backrest. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  25. Modified from: Wheel isolated ©MBGX2, Pixabay License
  26. Inspecting shrouds. ©Power Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  27. Checking the braking mechanism. ©Power Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  28. Tire treads. ©Power Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  29. Caster wheels. ©Power Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  30. Tying up wires. ©Power Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.
  31. Wheel lock. ©Ian Denison. Used with permission
  32. Wheelchair tracking. ©Manual Wheelchair Maintenance Program. CC-BY-NC-ND-3.0.

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.

Robotic Exoskeletons

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Author: Sharon Jang | Reviewer: Riley Louie | Published: 7 April 2021 | Updated: ~

New technology has led to the creation of wearable robotic devices to improve leg movement for activities such as standing and walking. This page discusses the use of robotic exoskeletons in people after spinal cord injury (SCI).

Key Points

  • Robotic exoskeletons are electromechanical devices that are worn around the limbs to support activities such as standing and walking in SCI people.
  • In addition to improved mobility, robotic exoskeletons allow increased levels of activity for general health benefits related to regular exercise.
  • Limitations of using exoskeletons include their high costs, limited availability, and restricted use in real-world settings.
  • Moderate evidence shows that exoskeletons increase safety and decrease energy requirements during walking for people with thoracic SCI.

Robotic exoskeletons (also known as powered gait orthoses) are wearable electromechanical devices that enhance movement of weak or paralyzed legs. They are electrically powered at the joints, allowing the hips, knees, and ankles to move. The greatest advantage exoskeletons have over passive orthotics or braces is that they are programmed to enable coordinated movement without much effort from the user. This is especially so since exoskeletons carry their own weight as well as that of the user. Movements that most exoskeletons assist include sit-to-stand and walking.

As of 2019, many different models of exoskeletons exist, and this number continues to grow as research and technology progresses. However, it is important to note that only three have been approved by the FDA for sale in North America and only two have been approved for home use, while the other is only approved for research and rehabilitation purposes. The two that are approved for home use are the ReWalk and the Indego, while the Ekso has been approved for research and rehabilitation purposes. The current models of exoskeletons have the ability to move from 0.2-2.6 km/hr, and weigh between 12-38 kg.

Exoskeletons are slowly moving into the community. Currently, most models can only move over flat, smooth surfaces. However, some can go up inclines. Moreover, newer models have the added function of enabling the user to sit in or wheel a wheelchair without having to take off the device. These features can increase the independence of people with SCI and enable/enhance the performance of activities such as standing, walking, and climbing stairs. However, these devices are still expensive, ranging from $70,000-120,000 USD.

In deciding if robotic exoskeletons are an appropriate option for you, a health care provider will perform an assessment where they account for factors such as your level of injury, risk for falls and fractures, and range of movement. Once exoskeletons are deemed appropriate, training will be required to learn how to properly use the device. A physiotherapist or caregiver may help you put on and take off the device. Generally, the feet are placed on footplates and the torso, hips, and legs are strapped into the exoskeleton. Some models extend upwards to include a backpack-like structure, which offers more trunk support and contains the computer and battery. Other models are secured only at the waist and below. In addition, some models can be programmed externally using a tablet. A pair of forearm crutches or a walker is often used to maintain balance. As someone with SCI walks, the built-in sensors and motorized joints (hip, knee, and/or ankle) constantly accommodate to encourage a rhythmic walking pattern. When the individual improves their own walking function and requires less assistance, the exoskeleton can be adjusted to provide less support.

 

A conceptual diagram of the Hardiman.

The term “exoskeleton” was originally borrowed from animal biology. An exoskeleton (such as a shell) is an outer cover that protects and supports the animal. In a similar way, robotic exoskeletons have been designed to help externally support and enhance human movement.

The earliest exoskeletons were developed with a military focus, aimed to help soldiers carry heavier loads, run faster, and jump higher. In 1968, the first exoskeleton, dubbed “the Hardiman” was developed in partnership with the US military. This exoskeleton was originally designed to help amplify soldiers’ strength by 25 times (i.e., lifting a 1500 item would feel like you are lifting a 60 lb item). Although the Hardiman was created and worked, it was not without limitations. First of all, the exoskeleton itself weighed 1500 lb. It was hydraulically-powered and required pumps and bladders that could fill a room. Despite its abilities, it was not very functional.

In 1972, a team from Yugoslavia developed the first functional exoskeleton: the kinematic walker. This device was the first of its kind; a powered robot consisting of a single hydraulic actuator (motor), which reduced its size. The kinematic walker was designed as a walking orthotic, and allowed for smooth movements to be made. Some movements the exoskeleton was able to perform included flexion and extension of the hip, knee, and ankle, in addition to abduction and adduction of the legs. Although this exoskeleton only weighed 12 kg, it required a separate power source and a computer, which were externally located from the exoskeleton.

For more information on treadmill-based robotics, refer to our articles on Body Weight Supported Treadmill Training and Functional Electrical Stimulation for more information on treadmill based robotics.

In 2001, the first exoskeleton products started being sold. The Lokomat, a robotic exoskeleton that was suspended over a treadmill, was one of the first exoskeletons used for rehabilitation. Meanwhile, the US Defense Advanced Research Projects Agency (DARPA) had announced their Human Performance Augmentation program which offered funding to develop exoskeletons for military use. From this funding, two separate groups developed exoskeletons – the Berkeley Lower Extremity Exoskeleton (BLEEX) and the Raytheon XOS suit. Both suits were created to help soldiers carry extra weight (up to 200 lb!) without feeling it.

Starting in 2010, more rehabilitation-based exoskeletons started entering the market. These include gait-assistive devices commonly seen in the media today, such as the Ekso, the ReWalk, and the Indego exoskeletons. These models are described in the section below

 

There are many types of exoskeletons that are currently available for use for individuals with SCI. While some exoskeletons have only been cleared for rehabilitation purposes, others have separate models for personal or home use. Below we discuss the general differences between rehabilitation and personal exoskeletons.

Rehabilitation Exoskeletons

The Ekso (left), the ReWalk (middle), and the REX (right) exoskeletons.4-6

Exoskeletons used for rehabilitation are generally heavier than personal exoskeletons and are often controlled by a computer and battery located in a backpack worn by the user. However, rehabilitation exoskeletons often come with more customizable abilities. For example, the Ekso and the ReWalk allow the clinician to modify the amount of power (i.e., support from the robot) for each leg, depending on the ability of the user. Similarly, the therapy version of the Indego allows the clinician to control how much weight is supported by the exoskeleton and how much movement assistance is provided by the exoskeleton. Moreover, how steps are triggered can be programmed in different ways: e.g., by the press of a button, by shifting your body weight, or by initiating a step using your own muscles. These bulkier clinical models are usually one-size-fits-all, allowing clinicians to adjust the dimensions of the device (i.e., leg length, hip width, etc.) to treat their clients of varying body size.

The REX differs from all of the aforementioned exoskeletons in that it is controlled with a joystick and is able to self-balance, making it essentially “hands-free”. This feature allows individuals to perform exercises while standing, including squats, lunges, and upper body exercises using both hands.

The Indego (left) and the ReWalk (right).

Personal Exoskeletons

Exoskeletons that have been designed for home use are generally lighter and provide limited support to the torso. Personal exoskeletons have a battery pack that is connected to the waist, but otherwise operates similarly to the rehabilitation models in that a weight shift initiates a step. Furthermore, some exoskeleton companies have developed apps that accompany the exoskeleton, allowing the user to independently access performance data. These personal exoskeletons are usually custom-developed to fit the user’s unique body dimensions.

While there are many purported benefits of using robotic exoskeletons among individuals with SCI, strong research evidence is lacking. Exoskeletons are largely used to enhance mobility in SCI, where they can be used for walk (gait) training during rehabilitation or in the community (at home) to perform simple daily activities. Although further research is required, some research has suggested that walking with an exoskeleton may have additional health benefits:

Spasticity

There are mixed findings regarding the effects of exoskeletal walking on spasticity. Many (weak evidence) studies have found that using exoskeletons can result in decreased spasticity. Despite these noted benefits, one weak evidence study reported mixed findings on spasticity as 26.7% of their study sample saw a decrease in spasticity, while 62.2% of participants saw no change and 11.1% saw an increase in spasticity. The impact of exoskeletal walking on spasticity may be related to the user’s baseline level of spasticity. In a weak evidence study, users who had low levels of spasticity prior to using an exoskeleton experienced an increase in spasticity; however, this increase in spasticity ultimately decreased over 12 weeks back to near zero. Individuals who already had high levels of spasticity prior to walking in an exoskeleton saw no changes in spasticity.

Bowel function

There is some weak research evidence that suggests walking with an exoskeleton can help with various bowel functions, including improved regularity of bowel movements, less time required for bowel management, and decreased enema dose. However, two (weak evidence) studies have found no effects on bowel function.

 

Bone Health

After SCI, bone mineral density in the legs declines at rapid rates due to inactivity and weight bearing activities have the potential to help restore bone mineral density. One study (weak evidence) found that walking in an exoskeleton may increase bone mineral density up to 14% with 6 weeks of training.

Fitness

Some research (weak evidence) suggests that walking in an exoskeleton can provide good exercise for the heart and upper and lower limb strength in those with incomplete SCI. More details about the effect of exoskeletons on fitness are discussed below in the section: “Can I get exercise benefits from walking in an exoskeleton?”

Pain

A few studies (weak evidence) report a decrease in pain with exoskeleton use, with one noting a reduction in pain, but not enough to significantly impact everyday life (i.e., clinical significance). On the other hand, some weak evidence studies have found no effect of exoskeleton walking on pain.

Pressure Sores

There is some weak research evidence that walking in an exoskeleton may help avoid the negative effects of prolonged standing or sitting  (e.g., pressure ulcers).

 

Refer to our articles on Pressure Sores, Pain and Spasticity for more information!

While a number of benefits are associated with exoskeleton use, there are also factors to consider prior to using the device in therapy or for the long term.

Risks of using an exoskeleton

Robotic exoskeletons are generally safe when used with discretion. However, there are some risks associated with its use. Mild adverse effects that have been reported in research include: skin redness, small abrasions (i.e., scrapes), mild joint swelling, and mild bruising. Additionally, like other simple orthotics and braces, falls and fractures have been identified as a risk. It is suggested (weak evidence) that family and friends of exoskeleton users should be trained to deal with emergency situations, such as falls or the exoskeleton shutting off unexpectedly.

Considerations of using an exoskeleton in the community

While exoskeleton home use may seem promising, there are some limitations. These include:

  • Slow walking speeds, which may not be ideal for everyday activities.
  • High costs to purchase the device.
  • Lack of availability of community-based exoskeletons.
  • Limited capacity or poor efficiency in moving on uneven surfaces (e.g., hills, steps) or complex movements (turning, side-stepping, backwards walking).
  • Being prone to water damage (they are not waterproof).

There are certain situations where extra attention is needed to determine whether robotic exoskeletons are appropriate and safe. Consult a qualified health provider for further safety information. Robotic exoskeletons are not recommended for individuals:

Extreme contractures are a contraindication for using exoskeletons.

  • Who are unable to tolerate standing, even with an assistive device (walking frame, bracing), due to pain or other complications (autonomic dysreflexia, orthostatic hypotension).
  • With severe neurological injuries (apart from SCI).
  • With severe or uncontrolled spasticity.
  • With osteoporosis.
  • With fractures.
  • With severe contractures (deformities that cause joint and muscle stiffness and limit normal or functional movement of the limbs).

Using Functional Electrical Stimulation (FES) to counter spasticity

Researchers built a novel device that integrates FES into an exoskeleton to address the issue of severe spasticity affecting exoskeleton use. In this FES-exoskeleton hybrid, FES complemented the exoskeleton by stimulating tight extensor muscles to facilitate walking. The authors found that spasticity was temporarily reduced when FES was used when walking with an exoskeleton. Furthermore, it was found that the knee was more easily extended when moving from a sit-to-stand position, and the forces applied on the knee during sit-to-stand were reduced. While this (weak evidence) study provides some promise for individuals with severe spasticity to also use exoskeletons, further research is required.

Using an exoskeleton requires practice. Although walking in an exoskeleton may seem daunting at first, research suggests that walking proficiency improves over time. In both newly injured (i.e., less than 6 months since injury) and chronically injured individuals with SCI, weak evidence shows that walking in the exoskeleton improves over time.

You get faster

Among newly injured individuals, weak evidence from one study suggests that walking speed in an exoskeleton becomes 3.2x faster after 25 1-hour training sessions. Moreover, these individuals were able to walk further in an exoskeleton after their training sessions. Among chronically injured individuals, similar trends are seen with increases in exoskeleton walking speed in two weak evidence studies. In another weak evidence study, it was found that 21 sessions were required to achieve the near-maximal walking speed at the end of a 12-week period, while 62 sessions were required to achieve near-maximal walking distance.

Less effort is Required

There is both weak and moderate evidence suggesting that the amount of effort it takes to walk using an exoskeleton decreases over time. This has been evaluated both subjectively (i.e., people feel like walking in an exoskeleton is not as hard over time) and physiologically (i.e., less demand on your body). This suggests that individuals are able to walk longer distances with lower effort after training to use an exoskeleton.

Is using an exoskeleton different for those with acute injuries versus chronic injuries?

Researchers have noted differences in exoskeleton use among newly injured (e.g., in patients) and chronically injured individuals with respect to adverse effects and benefits received. Among people who have recently sustained an SCI, weak evidence indicates that the most common adverse effect was orthostatic hypotension (a sudden drop in blood pressure). One study found that orthostatic hypotension commonly occurred after the first stand or after pauses (e.g., to take vitals, or to turn). However, the frequency of orthostatic hypotension episodes tapered off after a couple of sessions. Furthermore, another study (weak evidence) suggests that newly injured individuals may see improvements in their independence and quality of life, whereas those with chronic injuries do not. More research is required to determine the significance of differences between acutely injured and chronically injured individuals who use exoskeletons.

What factors influence walking speed?

Among individuals with SCI who use current exoskeleton devices, the average walking speed is 0.26 meters per second. This speed is fairly slow, and is lower than the average speed required to walk proficiently in the community (0.8 meters per second) and to cross the street safely (1.06 meters per second). However, walking speed in an exoskeleton is subject to improvement, depending on various factors.

Some factors that influence walking speed include age, level and type of injury, and the amount of training one receives. There is some (weak) evidence suggesting that those with incomplete, lower level SCI are more likely to exhibit faster walking speeds. In particular, one (weak evidence) study found that those with lower level paraplegia (i.e., T9-L1) were able to walk at significantly higher speeds. Moreover, there was a weak correlation between older age and faster walking speeds (i.e., older adults walk slightly faster than younger adults), though this could be related to the age-related difference in injury severity (that is, older individuals had lower levels of injury). No correlation was found with a greater time since injury.

What factors influences skill acquisition?

The time it takes to acquire proficient skills to walk in an exoskeleton varies greatly, ranging from 6-23 sessions. A variety of factors influence skill acquisition, including lifestyle, age, age at injury, and body mass index (BMI). Weak evidence suggests that an active lifestyle is the most important predictor of skill performance, although being younger and having a lower BMI are also associated with higher skill level. Additionally, the authors note that while having a lower level of injury was a positive predictor of skill between 2-4 weeks of using an exoskeleton, it did not predict final skill levels.

The type of exoskeleton being used may also influence skill acquisition. For example, weak evidence notes that a device with more support to the torso may facilitate skill acquisition as it provides more stability. Although we have summarized the research on factors influencing skill acquisition, the type of exoskeleton used in each study was not accounted for. As a result, we are unable to tease apart the effects of the aforementioned factors (e.g., lifestyle, age, BMI) and of the exoskeleton type on acquiring skills.The time it takes to acquire proficient skills to walk in an exoskeleton varies greatly, ranging from 6-23 sessions. A variety of factors influence skill acquisition, including lifestyle, age, age at injury, and body mass index (BMI). Weak evidence suggests that an active lifestyle is the most important predictor of skill performance, although being younger and having a lower BMI are also associated with higher skill level. Additionally, the authors note that while having a lower level of injury was a positive predictor of skill between 2-4 weeks of using an exoskeleton, it did not predict final skill levels.

Although walking in an exoskeleton is used primarily for rehabilitation purposes, the effort required to use the device is strenuous enough to be considered exercise. For example, one (weak evidence) study found that walking in an exoskeleton requires 3.34 times more effort than pushing a wheelchair, and 1.9 times more effort compared to walking without impairment, despite walking 7.4 times slower. Not surprisingly, participants also perceive themselves to be working harder. Participants from three (weak evidence) studies exercised at a moderate intensity, which is enough to get cardiovascular benefits, while walking in a robotic exoskeleton. Although some participants from a (weak evidence) study reported working at a low intensity, the authors noted that based on their heart rate and oxygen consumption, they were actually working at a moderate intensity. This suggests that some people may actually be working their bodies harder than they feel they are!

So why is walking in an exoskeleton so much work? Research suggests that using an exoskeleton requires a lot of work from the arms and torso to support an upright posture and to shift weight to initiate stepping. However, relative to other walking orthotics (e.g., robotic gait orthoses, hip-knee-ankle-foot orthoses), FES, and bracing, walking in an exoskeleton is considerably less effort. So then why would you use an exoskeleton for exercise if using other walking orthotics is harder work? The important consideration is stamina. You might work harder walking with rigid braces, but you may tire out quickly. With an exoskeleton, the understanding is that the assisted walking could allow you to exercise at moderate intensity for much longer.

Currently, there are only two exoskeleton models that have been approved for community use in North America. As such, there is limited evidence for using an exoskeleton in the community. In order to use an exoskeleton independently, individuals should be able to put on and take off the exoskeleton without professional help. Weak evidence has shown that individuals with paraplegia are able to independently put on and take off these devices, although those with tetraplegia are not. Additionally, weak evidence has shown that the time it takes to put on and take off an exoskeleton can be reduced with practice. Regarding walking speed in indoor versus outdoor environments, one weak evidence study has found that there are no significant differences in speed.

Some studies have looked at home- and community-based skills that can be completed using an exoskeleton. One weak evidence study found that the majority of participants could walk independently without a trainer in an exoskeleton, and perform tasks such as reaching high cupboards, using a stove, and using a sink, but were not able to walk on carpet and ramps. However, the authors note that some tasks were more difficult to complete in an exoskeleton, including reaching low cupboards and opening a fridge and getting items. Other (weak evidence) studies have found that a small proportion of people were able to do more advanced community-based tasks, such as entering/exiting elevators, operating automatic doors, navigating revolving doors, and ordering at a café. More research is required to determine how quickly individuals can pick up these skills.

There are currently many models of robotic exoskeletons continuing to be developed and refined. Exoskeletons are primarily used for rehabilitation purposes, although some models are available for community use. Using an exoskeleton has been shown to be relatively safe and easy to learn. Many benefits have been reported, including being able to ambulate, improvements in bone health, heart health, spasticity, bowel functioning, fitness, and pressure sores. While there are a lot of positive findings for robotic exoskeletons, this is an emerging field and stronger research is required to support these beneficial claims. A strong consideration is to weigh these benefits against cost, and also compare how these benefits compare to other to achieve similar gains.

For a review of what we mean by “strong”, “moderate”, and “weak” evidence, please see SCIRE Community Evidence Ratings.

Parts of this page have been adapted from the SCIRE Project (Professional) “Lower Limb” Chapter:

Lam T, Wolfe DL, Domingo A, Eng JJ, Sproule S (2014). Lower Limb Rehabilitation Following Spinal Cord Injury. In: Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Noonan VK, Loh E, McIntyre A, editors. Spinal Cord Injury Rehabilitation Evidence. Version 5.0. Vancouver: p 1-74.

Available from: scireproject.com/evidence/rehabilitation-evidence/lower-limb/ 

Evidence for “What are robotic exoskeletons?” is based on the following studies:

Khan, A. S., Livingstone, D. C., Hurd, C. L., Duchcherer, J., Misiaszek, J. E., Gorassini, M. A., … Yang, J. F. (2019). Retraining walking over ground in a powered exoskeleton after spinal cord injury: a prospective cohort study to examine functional gains and neuroplasticity, 1–17. Retrieved from https://doi.org/10.1186/s12984-019-0585-x

Ali, H. (2014). Bionic Exoskeleton: History, Development and the Future. IOSR Journal of Mechanical and Civil Engineering (IOSR-JMCE), 2014, 58–62. Retrieved from http://iosrjournals.org/iosr-jmce/papers/ICAET-2014/me/volume-5/12.pdf?id=7622

Gardner, A. D., Potgieter, J., & Noble, F. K. (2017). A review of commercially available exoskeletons’ capabilities. 2017 24th International Conference on Mechatronics and Machine Vision in Practice, M2VIP 2017, 2017Decem, 1–5.

He, Y., Eguren, D., Luu, T. P., & Contreras-Vidal, J. L. (2017). Risk management and regulations for lower limb medical exoskeletons: A review. Medical Devices: Evidence and Research, 10, 89–107.

Evidence for “What is the history behind robotic exoskeletons?” is based on the following studies:

Yang, C. J., Zhang, J. F., Chen, Y., Dong, Y. M., & Zhang, Y. (2008). A review of exoskeleton-type systems and their key technologies. Proceedings of the Institution of Mechanical Engineers, Part C: Journal of Mechanical Engineering Science, 222(8), 1599–1612.

Ali, H. (2014). Bionic Exoskeleton: History, Development and the Future. IOSR Journal of Mechanical and Civil Engineering (IOSR-JMCE), 2014, 58–62. Retrieved from http://iosrjournals.org/iosr-jmce/papers/ICAET-2014/me/volume-5/12.pdf?id=7622

Evidence for “What are exoskeletons used for?” is based on the following studies:

Esquenazi, A., Talaty, M., Packel, A., & Saulino, M. (2012). The Rewalk powered exoskeleton to restore ambulatory function to individuals with thoracic-level motor-complete spinal cord injury. American Journal of Physical Medicine and Rehabilitation, 91(11), 911–921.

Kolakowsky-Hayner, S. A. (2013). Safety and Feasibility of using the EksoTM Bionic Exoskeleton to Aid Ambulation after Spinal Cord Injury. Journal of Spine.

Kozlowski, A. J., Bryce, T. N., & Dijkers, M. P. (2015). Time and effort required by persons with spinal cord injury to learn to use a powered exoskeleton for assisted walking. Topics in Spinal Cord Injury Rehabilitation, 21(2), 110–121.

Kressler, J., Thomas, C. K., Field-Fote, E. C., Sanchez, J., Widerström-Noga, E., Cilien, D. C., … Nash, M. S. (2014). Understanding therapeutic benefits of overground bionic ambulation: Exploratory case series in persons with chronic, complete spinal cord injury. Archives of Physical Medicine and Rehabilitation, 95(10), 1878-1887.e4.

Zeilig, G., Weingarden, H., Zwecker, M., Dudkiewicz, I., Bloch, A., & Esquenazi, A. (2012). Safety and tolerance of the ReWalkTM exoskeleton suit for ambulation by people with complete spinal cord injury: A pilot study. Journal of Spinal Cord Medicine, 35(2), 96–101.

Juszczak, M., Gallo, E., & Bushnik, T. (2018). Examining the effects of a powered exoskeleton on quality of life and secondary impairments in people living with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 24(4), 336–342.

Khan, A. S., Livingstone, D. C., Hurd, C. L., Duchcherer, J., Misiaszek, J. E., Gorassini, M. A., … Yang, J. F. (2019). Retraining walking over ground in a powered exoskeleton after spinal cord injury: a prospective cohort study to examine functional gains and neuroplasticity, 1–17. Retrieved from https://doi.org/10.1186/s12984-019-0585-x

Karelis, A. D., Carvalho, L. P., Castillo, M. J. E., Gagnon, D. H., & Aubertin-Leheudre, M. (2017). Effect on body composition and bone mineral density of walking with a robotic exoskeleton in adults with chronic spinal cord injury. Journal of Rehabilitation Medicine, 49(1), 84–87.

Escalona, M. J., Brosseau, R., Vermette, M., Comtois, A. S., Duclos, C., Aubertin-Leheudre, M., & Gagnon, D. H. (2018). Cardiorespiratory demand and rate of perceived exertion during overground walking with a robotic exoskeleton in long-term manual wheelchair users with chronic spinal cord injury: A cross-sectional study. Annals of Physical and Rehabilitation Medicine, 61(4), 215–223.

Mcintosh, K., Charbonneau, R., Bensaada, Y., Bhatiya, U., & Ho, C. (2019). The Safety and Feasibility of Exoskeletal-Assisted Walking in Acute Rehabilitation After Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation. Retrieved from https://doi.org/10.1016/j.apmr.2019.09.005

Stampacchia, G., Rustici, A., Bigazzi, S., Gerini, A., Tombini, T., & Mazzoleni, S. (2016). Walking with a powered robotic exoskeleton: Subjective experience, spasticity and pain in spinal cord injured persons. NeuroRehabilitation, 39(2), 277–283.

Baunsgaard, C. B., Nissen, U. V., Brust, A. K., Frotzler, A., Ribeill, C., Kalke, Y. B., … Benito Penalva, J. (2018). Exoskeleton gait training after spinal cord injury: An exploratory study on secondary health conditions. Journal of Rehabilitation Medicine, 50(9), 806–813.

Evidence for “What are the risks and considerations for using an exoskeleton?” is based on the following studies:

Tefertiller, C., Hays, K., Jones, J., Jayaraman, A., Hartigan, C., Bushnik, T., & Forrest, G. F. (2018). Initial outcomes from a multicenter study utilizing the indego powered exoskeleton in spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 24(1), 78–85.

Mcintosh, K., Charbonneau, R., Bensaada, Y., Bhatiya, U., & Ho, C. (2019). The Safety and Feasibility of Exoskeletal-Assisted Walking in Acute Rehabilitation After Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation. Retrieved from https://doi.org/10.1016/j.apmr.2019.09.005

Mekki, M., Delgado, A. D., Fry, A., Putrino, D., & Huang, V. (2018). Robotic Rehabilitation and Spinal Cord Injury: a Narrative Review. Neurotherapeutics, 15(3), 604–617.

Miller, L. E., Zimmermann, A. K., & Herbert, W. G. (2016). [Miller, 2016] Clinical effectiveness and safety of powered exoskeleton-assisted walking on SCI patients, 455–466.

Van Herpen, F. H. M., Van Dijsseldonk, • R B, Rijken, • H, Keijsers, • N L W, Louwerens, J. W. K., & Van Nes, • I J W. (2019). Spinal Cord Series and Cases Case Report: Description of two fractures during the use of a powered exoskeleton. Retrieved from https://doi.org/10.1038/s41394-019-0244-2

Kandilakis, C., & Sasso-Lance, E. (n.d.). Exoskeletons for Personal Use After Spinal Cord Injury. Retrieved from https://doi.org/10.1016/j.apmr.2019.05.028

Evidence for “Are there restrictions or precautions for using robotic exoskeletons?” is based on the following studies:

Miller, L. E., Zimmermann, A. K., & Herbert, W. G. (2016). [Miller, 2016] Clinical effectiveness and safety of powered exoskeleton-assisted walking on SCI patients, 455–466.

Murray, S. A., Farris, R. J., Golfarb, M., Hartigan, C., Kandilakis, C., & Truex, D. (2018). FES Coupled with A Powered Exoskeleton for Cooperative Muscle Contribution in Persons with Paraplegia. Proceedings of the Annual International Conference of the IEEE Engineering in Medicine and Biology Society, EMBS, 2018July, 2788–2792.

Ekelem, A., & Goldfarb, M. (2018). Supplemental stimulation improves swing phase kinematics during exoskeleton assisted gait of SCI subjects with severe muscle spasticity. Frontiers in Neuroscience, 12(JUN).

Evidence for “How does walking change over time?” is based on the following studies:

Mcintosh, K., Charbonneau, R., Bensaada, Y., Bhatiya, U., & Ho, C. (2019). The Safety and Feasibility of Exoskeletal-Assisted Walking in Acute Rehabilitation After Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation. Retrieved from https://doi.org/10.1016/j.apmr.2019.09.005

Ramanujam, A., Momeni, K., Husain, S. R., Augustine, J., Garbarini, E., Barrance, P., … Forrest, G. F. (2018). Mechanisms for improving walking speed after longitudinal powered robotic exoskeleton training for individuals with spinal cord injury. Proceedings of the Annual International Conference of the IEEE Engineering in Medicine and Biology Society, EMBS, 2018July, 2805–2808.

Tefertiller, C., Hays, K., Jones, J., Jayaraman, A., Hartigan, C., Bushnik, T., & Forrest, G. F. (2018). Initial outcomes from a multicenter study utilizing the indego powered exoskeleton in spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 24(1), 78–85.

Khan, A. S., Livingstone, D. C., Hurd, C. L., Duchcherer, J., Misiaszek, J. E., Gorassini, M. A., … Yang, J. F. (2019). Retraining walking over ground in a powered exoskeleton after spinal cord injury: a prospective cohort study to examine functional gains and neuroplasticity, 1–17. Retrieved from https://doi.org/10.1186/s12984-019-0585-x

Escalona, M. J., Brosseau, R., Vermette, M., Comtois, A. S., Duclos, C., Aubertin-Leheudre, M., & Gagnon, D. H. (2018). Cardiorespiratory demand and rate of perceived exertion during overground walking with a robotic exoskeleton in long-term manual wheelchair users with chronic spinal cord injury: A cross-sectional study. Annals of Physical and Rehabilitation Medicine, 61(4), 215–223.

Delgado, A. D., Escalon, M. X., Bryce, T. N., Weinrauch, W., Suarez, S. J., & Kozlowski, A. J. (2019). Safety and feasibility of exoskeleton-assisted walking during acute/sub-acute SCI in an inpatient rehabilitation facility: A single-group preliminary study. Journal of Spinal Cord Medicine. Retrieved from https://www.tandfonline.com/action/journalInformation?journalCode=yscm20

Baunsgaard, C. B., Nissen, U. V., Brust, A. K., Frotzler, A., Ribeill, C., Kalke, Y. B., … Benito Penalva, J. (2018). Exoskeleton gait training after spinal cord injury: An exploratory study on secondary health conditions. Journal of Rehabilitation Medicine, 50(9), 806–813.

Evidence for “What influences walking speed and skill acquisition when using an exoskeleton?” is based on the following studies:

Louie, D. R., Eng, J. J., & Lam, T. (2015). Gait speed using powered robotic exoskeletons after spinal cord injury: A systematic review and correlational study. Journal of NeuroEngineering and Rehabilitation, 12(1), 1–10. Retrieved from http://dx.doi.org/10.1186/s12984-015-0074-9

Hartigan, C., Kandilakis, C., Dalley, S., Clausen, M., Wilson, E., Morrison, S., … Farris, R. (2015). Mobility outcomes following five training sessions with a powered exoskeleton. Topics in Spinal Cord Injury Rehabilitation, 21(2), 93–99.

van Dijsseldonk, R. B., Rijken, H., W van Nes, I. J., van de Meent, H., W Keijsers, N. L., & W Keijsers,  el L. (2019). Predictors of exoskeleton motor learning in spinal cord injured patients. Disability and Rehabilitation, 1-7.

Khan, A. S., Livingstone, D. C., Hurd, C. L., Duchcherer, J., Misiaszek, J. E., Gorassini, M. A., … Yang, J. F. (2019). Retraining walking over ground in a powered exoskeleton after spinal cord injury: a prospective cohort study to examine functional gains and neuroplasticity, 1–17. Retrieved from https://doi.org/10.1186/s12984-019-0585-x

Evidence for “Can I get exercise benefits from walking in an exoskeleton?” is based on the following studies:

Khan, A. S., Livingstone, D. C., Hurd, C. L., Duchcherer, J., Misiaszek, J. E., Gorassini, M. A., … Yang, J. F. (2019). Retraining walking over ground in a powered exoskeleton after spinal cord injury: a prospective cohort study to examine functional gains and neuroplasticity, 1–17. Retrieved from https://doi.org/10.1186/s12984-019-0585-x

Escalona, M. J., Brosseau, R., Vermette, M., Comtois, A. S., Duclos, C., Aubertin-Leheudre, M., & Gagnon, D. H. (2018). Cardiorespiratory demand and rate of perceived exertion during overground walking with a robotic exoskeleton in long-term manual wheelchair users with chronic spinal cord injury: A cross-sectional study. Annals of Physical and Rehabilitation Medicine, 61(4), 215–223.

Kozlowski, A. J., Bryce, T. N., & Dijkers, M. P. (2015). Time and effort required by persons with spinal cord injury to learn to use a powered exoskeleton for assisted walking. Topics in Spinal Cord Injury Rehabilitation, 21(2), 110–121.

Mcintosh, K., Charbonneau, R., Bensaada, Y., Bhatiya, U., & Ho, C. (2019). The Safety and Feasibility of Exoskeletal-Assisted Walking in Acute Rehabilitation After Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation. Retrieved from https://doi.org/10.1016/j.apmr.2019.09.005

Evidence for “What evidence is there for using an exoskeleton in the community?” is based on the following studies:

Tefertiller, C., Hays, K., Jones, J., Jayaraman, A., Hartigan, C., Bushnik, T., & Forrest, G. F. (2018). Initial outcomes from a multicenter study utilizing the indego powered exoskeleton in spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 24(1), 78–85.

Hartigan, C., Kandilakis, C., Dalley, S., Clausen, M., Wilson, E., Morrison, S., … Farris, R. (2015). Mobility outcomes following five training sessions with a powered exoskeleton. Topics in Spinal Cord Injury Rehabilitation, 21(2), 93–99.

Khan, A. S., Livingstone, D. C., Hurd, C. L., Duchcherer, J., Misiaszek, J. E., Gorassini, M. A., … Yang, J. F. (2019). Retraining walking over ground in a powered exoskeleton after spinal cord injury: a prospective cohort study to examine functional gains and neuroplasticity, 1–17. Retrieved from https://doi.org/10.1186/s12984-019-0585-x

Spungen, A. M., Asselin, P. K., Fineberg, D. B., Kornfeld, S. D., & Harel, N. Y. (2012). Exoskeletal-Assisted Walking for Persons with Motor-Complete Paraplegia. VA Rehabilitation Research and Development National Center of Excellence for the Medical Consequences of Spinal Cord Injury. Retreived from: http://www.ryzur.com.cn/uploadfile/2016/0830/20160830115519272.pdf

Miller, L. E., Zimmermann, A. K., & Herbert, W. G. (2016). Clinical effectiveness and safety of powered exoskeleton-assisted walking on SCI patients. Medical Devices: Evidence and Research, 9:455–466.

Image credits

  1. Walking with a Clinician ©The SCIRE Community Team
  2. Hardiman I ©Bruce R. Fick and John B. Makinson, General Elerctric Co., Public Domain
  3. Active Suit ©Robotics Laboratory, Mihailo Pupin Institute
  4. Ekso Exoskeleton ©Ekso Bionics 2020
  5. ReWalk Exoskeleton ©ReWalk Robotics 2020
  6. REX Exoskeleton ©REX Bionics Ltd 2020
  7. Indego Exoskeleton ©Parker Hannifin Corp 2020
  8. ReWalk Exoskeleton ©ReWalk Robotics 2020
  9. Spasticity ©The SCIRE Community Team
  10. Colon ©Servier Medical Art, CC BY 3.0
  11. Femur ©Servier Medical Art, CC BY 3.0
  12. Modified from: Beating heart ©Lillit Kalachyan, CC BY 3.0
  13. Lightning ©FLPLF, CC BY 3.0
  14. ModifiedfromSpasticity ©The SCIRE Community Team
  15. Ankle sprain ©Servier Medical Art, CC BY 3.0
  16. Exoskeleton Icon ©The SCIRE Community Team
  17. Downtown New York City streets ©Free-photos, Pixabay License
  18. Candles ©The SCIRE Community Team
  19. Modified from: Weight Scale ©Sandra, CC BY 3.0
  20. Wheelchair Tennis ©Gan Khoon Lay, CC BY 3.0
  21. Personal user photo courtesy of Parker Hannifin Corporation, USA

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.