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Community Stories: Experiences of Nerve Transfer Surgery

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Authors: Kelsey Zhao, Dominik Zbogar | Published: 14 May 2024

Nerve transfer surgery can restore movement to the paralyzed arm or hand of someone with a high-level spinal cord injury (SCI), by connecting a healthy nerve to the nerve of the paralyzed muscle.

There is much about nerve transfers that we don’t know but we can construct a nuanced view from the diverse experiences of people who have done the procedure. Ainsley, Dan, and Caleb graciously recount their experiences with nerve transfer surgeries, the obstacles they encountered, and the insights they have gleaned, for our readers.

Refer to our article on Nerve Transfer Surgery for more information!

Introducing…

Ainsley is 17 and plans on doing a Bachelor of Arts at the University of British Columbia after graduating high school this year!

SCI level: C5-C6 complete

Dan is 37 and a full-time student at Douglas College in Recreation Therapy! He enjoys cooking and has a dog.

SCI level: C5-C6 complete

Caleb is 35 and likes to spend his time outdoors and doing sports like scuba diving, whitewater kayaking and sitskiing!

SCI level: C5 complete

Nerve transfer options

Choosing to have surgery can be a tough decision. There are pros and cons to every procedure and a million factors to consider. 

Ainsley opted to have three nerve transfers on each arm: supinator nerve to posterior interosseous nerve (PIN) for hand opening, brachialis nerve to anterior interosseous nerve (AIN)/flexor digitorum superficialis (FDS) for hand closing, and teres minor nerve (with some deltoid) to triceps for elbow extension. Ainsley’s surgical team was able to do her surgeries 6 months after her SCI, during a holiday break from school. Keeping in mind that nerve transfers are not always successful, the nerves were carefully selected to make sure tendon transfers could be done as backups. This precaution paid off when the right-side hand closing nerve transfer didn’t work out.

Dan had two nerve transfers on each arm for finger extension and finger flexion. Unlike Caleb and Ainsley who had nerve transfers done only a few months after injury, Dan had been living with SCI for 5 years when he did the surgeries. Nerve transfer is not always possible for a chronic injury because the muscle might be too deteriorated to recover. However, it can still be an option if electrodiagnostic tests show that there is still activity in the muscle and nerve. Dan said, “they did a test to see whether my nerves were still viable, and they were.”

Caleb had three nerve transfers on both arms 5 months after his cervical SCI: supinator nerve to PIN for finger extension, brachialis nerve to AIN for finger flexion, and deltoid to triceps for elbow extension. In the first few months after his SCI, but before the nerve transfer surgeries, he had recovered good wrist function, but his fingers and triceps were not improving. At that point, he was told what the probability of getting hand function back was and decided that doing the nerve transfers was the best option. Caleb said, “Even if it works out slightly, it will still be better than not doing it”.

Recovery: the good and the bad

Although the evidence so far shows that nerve transfer surgery rarely causes any lasting harms, the general risks that accompany any surgical procedure do exist, and the recovery period can be challenging. Negative experiences do exist alongside the overall success of the procedure.

Ainsley had her nerve transfer surgeries while recovering from SCI at a rehabilitation centre. She stayed at the centre for a few days after the surgery but went home for the holiday season, then returned to continue rehabilitation. After the surgery, there was no cast, splint, or movement restrictions, but the incisions were quite large and painful for the first few days. Over time, the pain became more manageable with pain medication and the stitches dissolved, but it took two or three months before the incision scars stopped bothering her completely. For the first couple of weeks, Ainsley needed a lot of assistance with everyday tasks and had to be careful with big movements like getting dressed.

Because Ainsley used a power wheelchair, she was able to move around after the surgery like before, but she imagines it would be challenging for someone in a manual chair. Pain and loss of strength after surgery could make pushing a manual wheelchair difficult.

This was very true for Dan. After his nerve transfer surgery, he lost some muscle strength in his left hand and arm. He was still strong enough to push his chair but not to stop. As a result, he went from strictly using a manual chair to using a power wheelchair for about 10 months. The rest of Dan’s recovery did not go so smoothly either. He explains, “in my left arm, when I moved my arm in a certain way, I would get a twang. It felt like I hit my funny bone but times 100. It was really bad and that lasted about two weeks. I also had some numbness in my left thumb all the way down to my palm. I still have numbness but it’s mostly the tip of my thumb so it’s better.” On top of everything, Dan was living at home and not at a rehabilitation centre when he had his surgeries. He came to realize post-surgery that he did not have all the necessary supports in place to accommodate the temporary losses in function. Reflecting on these struggles, he suspects that since people with chronic SCI don’t get nerve transfers often, there is less awareness of how much the surgery can affect their functional abilities.

Like Ainsley, Caleb was living and recovering at a rehabilitation facility up until when his nerve transfer surgeries were done, and was able to extend his stay a bit to include the first few days of his surgical recovery. He had pain for one day after the nerve transfers were done, followed by the normal aches of surgery. Caleb was still pretty weak from his SCI accident, but he did not feel any difference in strength from before to after the surgery. All in all, nothing unexpected.

What stuck out the most to Caleb about recovery was the amount of time he spent imagining movements (visualization exercises) while no movement was actually happening! Coming from a big sports background, he understood what it meant to visualize actions and the benefits of the exercise. Even so, before the first signs of movement showed up, Caleb had moments where he thought, “Oh man, this is just not doing anything. Will it ever happen?”.

Good to have a back up plan

Around a year and a half after Ainsley’s nerve transfer surgeries, her hand closing was improved and strong in the left, but her right hand produced only a flicker of movement. With her surgeons, it was determined that her right hand was not improving further so Ainsley went ahead with Plan B – a tendon transfer for the thumb to index finger pinch grip. Ainsley describes the tendon transfer recovery as “hard” compared to nerve transfer because “I was in a cast and not allowed to move for 6 weeks”. In contrast, she was able to move around immediately after nerve transfer surgery with pain medications. That said, the tendon transfer was a success!

Where they are at today

Ainsley is now 2 years after the nerve transfers and has gained the ability to fully open both hands. On the left, her restored hand closing from nerve transfer is very strong and she can pick things up. The right-hand pinch gained from the tendon transfer is functional and continues to build strength. All these improvements in her fingers and hands mean that Ainsley can use her cell phone with finger gestures, scratch an itch, adjust her hair, and hold and use things like cutlery, a toothbrush, makeup, and bank cards. The triceps nerve transfer has recovered to the point where she can now extend both arms against gravity. These days, Ainsley is getting ready to hit the road in a custom hand control vehicle, something that would not have been possible if not for the triceps surgeries that improved her strength enough to turn a steering wheel. Hopeful for the future, Ainsley says that she is “still improving everyday”.

Dan is coming up on 3 years after the nerve transfers. Although his grip is not strong, it is strong enough that he can use and squeeze the brakes on the new e-bike attachment for his wheelchair, which he would not have been able to do without the nerve transfer. Being able to extend his fingers has made it much easier to open his hand to grasp things and move them around. He has more function in his hands then before, but he still has not recovered some of the strength he lost after the surgeries. Dan described how “Before the surgery I could lift a full backpack of groceries off of the back of my chair now I have difficulty if there’s any weight in my bag.” That said, he is still waiting to see how much he improves, explaining, “…it’s coming, it’s just not there yet. I think they say the plateau is four years for this surgery…”, referencing experts who say that improvements for nerve transfers typically reach their peak at around 4 years.

Even though Caleb is only 1 year and 3 months after the nerve transfer and still has a long way to go, he is already happy with the improvements. “Going from zero movement in my fingers to now, it’s kind of huge”. The first big impact the nerve transfers had in Caleb’s day-to-day life was probably around four months in, when he was able to open his hand to grab his toothbrush without any kind of assistance. He can now grab a toothbrush or pop can and hold on to it without a problem. His triceps progress has been harder to pin down. There is some movement in his left arm and a small amount in his right arm but he wonders if that would have come back naturally after SCI regardless of the nerve transfers. Whether or not the improvements came from the nerve transfers or from natural recovery, it has been a big help for Caleb’s mobility and being able to shift and transfer.

It is clear that the functions gained and the rate of recovery for nerve transfer surgeries can vary widely. However, what determines the success and speed of recovery after surgery is still an area of active research.

Advice and recommendations

There is a sense of excitement about nerve transfer surgeries and their potential for helping patients with SCI. The procedure has had many successes but so much research remains to be done to improve outcomes. Reflecting on their own journeys, Ainsley, Dan, and Caleb offered some words of advice on nerve transfers for both the clinicians who make them happen and the people who will need them in the future.

Ainsley encourages others to advocate for their treatment options. She and her family found a specific nerve transfer that they believed would be a good option for her, and worked closely with the surgical team. The results were good and Ainsley tells us that since then, that surgical team has had many successes with that same procedure on other people. Overall Ainsley believes that the surgery was “very much worth it. The benefits outweigh the cons, and I was very lucky that I had great surgeons”. Ainsley and her dad also strongly recommend considering tendon transfers as a backup for nerve transfers.

Dan offered some words of caution as a nerve transfer recipient with chronic SCI. He felt like he went into the surgery with rose-coloured glasses on, only to discover that the recovery was not seamless and there were many unforeseen obstacles. Having lived with an SCI for many years, Dan says, “…there were so many things that I had learned how to do in those five years that all of a sudden, I wasn’t able to do.” and he thinks the doctors did not realize these adaptations would be impacted by the surgery. He had the impression that he would “be able to do everything you could do before”, but in reality, he lost some abilities for a while, including being able to transfer and use a manual wheelchair.

Considering his rehabilitation, Dan wonders if more could be done at home. For example, he heard of other people who did a lot of functional electrical stimulation (FES) for their nerve transfer rehabilitation and proposed, “You can set up somebody to do FES by themselves on their arms, right?… The client can be shown how to do it… and do it at home.” On the other hand, Ainsley had the chance to try FES but found that even when working with an occupational therapist, it was too difficult to correctly place the electrodes. That said, rehabilitation is specific to the individual and what doesn’t work for one person might work for another!

Dan also suggested that rehabilitation after surgery could be more structured, “like a program that you do after the surgery, then for the next three months after”.

Having spoken with Dan about this before, Caleb agrees that following a program would be useful. He thinks his occupational and physical therapy team did a great job but a clear step-by-step handbook or video outlining the exercises and the braces used would be nice. While Caleb did exercises in rehabilitation, some videos of him were recorded for him to refer back to but he thinks it would also be beneficial to see someone demonstrate the exercises, like a guide.

When asked what he would say to someone considering nerve transfer, Caleb admits, “Because mine went so well, when I talk to people, I’m like yeah it went really good. It’s gonna be all benefit…”. Still, he recognizes that it does not go that well for everyone, adding that “it would be awesome to have this larger compilation of all the things that went well and didn’t go well (for different people), so that way, people could really see the options…”

All in all, we can see that every experience with nerve transfer surgery will be different; every person will encounter unique obstacles, surprises, and benefits. Even with all the research papers and educational resources, nothing can portray an experience in full colour quite like a conversation with a person who has been through it.

 

Videos of Ainsley, Dan, and Caleb demonstrating some of the movements and functions they have gained in rehabilitation after nerve transfer surgery.

Ainsley demonstrating functional recovery of hand opening and closing by using a fork to eat.
Ainsley demonstrating functional recovery of triceps shoulder extensions by reaching up to adjust a wall thermostat.
Dan demonstrating functional recovery of hand opening and closing by driving and squeezing the brakes on an e-bike wheelchair attachment.
Dan demonstrating functional recovery of hand opening and closing by opening and closing the lid on a jar.
Caleb demonstrating an elbow extension exercise for triceps nerve transfer rehabiliation.
Caleb demonstrating a hand opening exercise for supinator to PIN nerve transfer rehabilitation.

Adapted Sports and Equipment

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Author: Sharon Jang | Reviewer: Courtney Pollock | Published: 18 October 2023 | Updated: ~

Key Points

  • Staying active after SCI has many benefits, but structured workouts may not be for everyone. Sports may be a good alternative to stay physically active.
  • Adapted sports (sometimes called “adaptive sports”) are sports that use modified equipment to allow individuals of all abilities to participate.
  • Participating in adapted sports is a great way to build social connections with others and to become a part of a community.
  • There are a variety of sports that can be played including cycling, court sports, winter sports, and water sports. This article introduces various adapted sports and the required equipment to partake in them.

Staying physically active after SCI is important for your health. There is moderate to strong evidence that physical activity has many benefits after SCI including:

  • Allowing you to perform everyday activities (e.g., shopping, cooking, transferring) with more ease,
  • Improving depression and quality of life,
  • Increasing muscle strength and endurance,
  • Management of blood sugar levels,
  • Helping you to breathe with more ease,
  • Reducing pain and spasticity.

Although going to a gym is one common way to get moving, there are a variety of adapted sports that can also be played. While this article discusses a selection of adapted sports (including handcycling, court sports, winter sports, and water sports), it should be noted that almost any sport can be adapted for participation after SCI.

Refer to our article on Physical Activity for more information!

Adapted sports are sports that can be played with equipment and approaches that are adapted to a person’s physical abilities. Many adapted sports have been altered in one of many ways to promote accessibility. Some of these adaptations include changes to the rules of a game, modifications in the equipment, or specialized equipment to allow you to partake in a sport.

Athlete Classification

There are different levels of adapted sports, ranging from recreational (or just for fun and fitness) to competition. Should you want to become competitive, classifications are used to ensure that competition is equal and fair. Classifications are used to determine which athletes should be grouped together. In adapted sports, classification is based on function (e.g., strength, how many limbs are affected by injury, range of movement, tone/spasticity). This is similar to categorizing by age, gender, or weight in able-bodied sports.

Precautions when trying new sports

While trying out new sports can be fun and exciting, skin health is an important consideration. Trialing new sports is often associated with trying new equipment. When trying new equipment, it is important to check for red marks or pressure spots on your skin including your seat and any area of the body positioned against equipment (e.g., footrest or frame). People will commonly use the cushion from their everyday chair in their sport chair when they first try a sport. However, it is important to remember that although it is the same cushion, you may be sitting in a different position (e.g., seat angle) which will change pressure and potential forces from rubbing. The best approach is like that of trialing a new wheelchair or cushion: frequently check your skin in the early days of your new sport. This means that it is best to start with shorter sessions and work your way up in time once you know that your skin can tolerate the new equipment and positions. In water sports such as kayaking, or in rainy conditions for outdoor sports, make sure to check your skin when you are done since being wet can make the skin more prone to injury.

Additionally, you may want to consider the influence of temperature (extreme hot or cold weather), as temperature regulation may be impaired with an SCI.

Refer to our article on Pressure Injuries for more information!

Handcycles are a type of bicycle that is propelled by the arms instead of the legs. There are different types of handcycles available for all levels of ability. In general, most arm-cycles have alternative handle options for those with limited hand function.

Types of arm cycles

Recumbent cycles

Recumbent arm-cycles are three wheeled bikes that are controlled with the arms while seated in a reclined position. This type of bicycle has support straps to rest the feet in while cycling.

Upright cycles

Upright cycles are similar to recumbent bikes in that the feet are on either side of the front wheel. However, the user is seated in a more upright position when using this bike.

Tandem bikes

A variety of tandem arm bikes are available. Bike models are available to allow riders to either ride beside each other, or one in front of the other. Power-assist versions are also available for those who may have some function in their legs.

Arm cycle add-ons

Instead of buying a separate wheelchair, arm-cycle add-ons are available for manual wheelchair users. These add-ons connect to the front of a manual wheelchair, lifting up the casters. This then allows an individual to propel their wheelchair via an arm cycle. Additionally, power-assist versions are available for those with less upper body strength.

Off-road wheelchairs

If you are looking to go on some trails, an off-road wheelchair may appeal to you. These wheelchairs are used for recreational riding, such as going for a hike, or going fishing. Off-road wheelchairs often have larger, knobbier tires that are meant to withstand the trail, roots, and rocks. Like the arm-cycles, off-road wheelchairs come in a variety of set ups. Some setups may look like a typical manual wheelchair, but with larger wheels. There are also ones that are controlled with push-levers (such as the mountain trike), and powered wheelchairs with more power, suspension, and agility (such as the x5 frontier, and the x8-extreme all-terrain wheelchair).

Wheelchair racing

For those who are interested in competition, wheelchair racing may be an option. Wheelchair race events range from the 100m, 200m, 400m, 800m, 1500m, and 5k distance races in track and field, to marathons. Racing wheelchairs differ from the wheelchairs and cycles listed above in that they typically have two wheels with a third one extended out in front. Ideally, race chairs should be light-weight to enhance performance. When seated, the wheelchair should fit “like a glove”, and there should be little movement in the seat. Unlike arm-cycles, the feet are bent down and kept closer to the body. In addition, specialized rubber gloves are worn to push the rims during races.

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

Tennis

Wheelchair tennis is played on the same court as able-bodied tennis, and with similar rules. One rule difference is that in wheelchair tennis, players are allowed two bounces instead of one, and the second bounce can be anywhere – even out of bounds. Although one can play wheelchair tennis in their day chair, tennis wheelchairs are often preferred during play. These wheelchairs are faster, lighter, more agile, and more stable. The wheels on the wheelchair are also angled (i.e., there is more camber ) to allow for more swift turning. For those with limited hand function, taping the racquet to your hand is common practice, though it can take some time to find the optimal tension for you. Therefore, people with all levels of ability can play wheelchair tennis.

Basketball

Wheelchair basketball is played on a standard basketball court. The wheelchair used for basketball is one with wheels angled to 15-20 degrees and a single rollerblade used for a caster at the back. In addition, there are many strapping options to promote stability and safety, or to hold the body in a certain position. Commonly strapped body parts include the hips, knees, feet and/or ankles. It is common for wheelchair basketball leagues to include able bodied participants at the local level of competition. This allows for more players and teams for great league play.

Rugby

Wheelchair rugby was developed specifically for people with tetraplegia and has grown to include people without SCI but with similar functional abilities (e.g., some impaired arm and hand function in addition to impaired leg function). Wheelchair rugby is played with a volleyball. The goal of the game is to carry the ball over the other team’s goal line. Unlike able-bodied rugby, wheelchair rugby is played indoors on a court. Specialized wheelchairs are used to play wheelchair rugby and can be separated into chairs for offensive players and chairs for defensive players. Offensive wheelchairs are set up for speed and mobility and are distinguished with a front bumper to prevent other chairs from hooking them. Often, offensive chairs are used by players with more function. On the other hand, defensive wheelchairs are set up with a bumper to hook and hold onto other players. Defensive chairs are often used by players with less function. Additional equipment used in rugby include straps and gloves. Straps are used on the waist (to compensate for a lack of core muscles), the thighs (to prevent them from falling to the side or from shifting side to side), and the feet (for comfort). Meanwhile, gloves work to protect the skin, add extra grip when pushing the chair, and to making throwing and catching the ball easier.

Community Voices: Byron

Byron has been playing wheelchair rugby for 17 years. He describes it as “a fast-paced sport. You get to hit things with your wheelchair, and at the same time there is a lot of strategy going on.” He enjoys the sport as he explains, “the physical benefits are a big part of why I enjoy playing wheelchair rugby. The community is amazing – it’s great because every practice is an opportunity to see a bunch of my friends.”

Alpine Skiing

Alpine skiing, also known as downhill skiing, is a sport that individuals with tetraplegia and paraplegia can partake in with the use of sit-skis. In general, sit skis have a bucket-type of seat with an adjustable seat and footrest. To create a smoother ride, sit-skis have additional features such as suspensions and a shock compression system under the seat. The seat and suspension/shock systems are all connected to either a single ski (mono-ski) or a pair of skis (bi-skis). In general, mono-skis require the user to have good upper body strength, and the ability to ski independently. Bi-skis are often used by individuals who may require some assistance. Often, bi-skis are used with an able-bodied individual who skis behind them. Skiers who use a sit-ski can use the typical chairlifts at the mountains and with experience, can access all terrains of ski areas.

Cross Country Skiing

Cross country skiing (which is a type of Nordic skiing) allows individuals with paraplegia and tetraplegia to explore snowy trails. Like the alpine skis, cross country skis consist of a bucket seat that connects to a metal frame, which clips into the skis. Cross country skiers also often use poles while skiing to propel themselves along flatter terrain. If assistance is required, an able-bodied person can help push the ski forward with their ski-pole using an adaptive add-on.

Sledge (Ice) Hockey

Sledge hockey, or para ice hockey is identical to ice hockey but is played while sitting in sledges as opposed to standing on skates.

A sledge consists of a plastic bucket-shaped seat that is connected to a metal frame. This frame is set on two adjustable skate blades, with the blades aligned on the bottom of the seat. The skate blades may be adjusted so that they are further apart for stability (good for new players) or can be moved closer together to allow for more maneuverability and speed. Straps are available to help keep the feet, knees, and hips in place. Players propel themselves in the sledge using two sticks. These sticks are dual ended: one end has a blade for handling the puck, while the other end has a metal pick in it to help players propel themselves across the ice. Typical hockey pads are used for safety during play.

Sailing

Adapted sailing is a sport that people of all abilities can participate in. Common features of adapted sailboats include handguards along the side of the boats, greater deck space due to removed masts, and customized molded seats with back support and belts that pivot. For individuals with reduced function, other available adaptations include electronic controls (such as the use of a joystick), and sip ‘n’ puff technology to steer the boat with breath. Many sailing clubs have power/mechanical lifts dockside to assist with transfers into boats.

Community Voices: Terry

Terry has been involved in adapted sailing since 1994. Terry sails a Matin 16 using sip ‘n puff technology. Sailing is special to Terry as he says he can “finally get out of my chair and be as free as the wind!” As he is unable to play court sports, sailing has provided Terry a competitive outlet.

Kayaking

Kayaks are available for people with all levels of SCI. While individuals with a lower level of injury may use non-adapted kayaks, adaptations are available for comfort and to accommodate those with limited function. Some kayaks may have custom seating with side and abdominal support. These supports are cushioned to protect the skin while kayaking. Stabilizing outriggers are available to increase stability of the boat and to reduce the chances of tipping. For those with limited arm/hand function, there are various adaptations for the paddle including:

  • A back of the hand grip, which places more paddling pressure on the arms instead of the hands.
  • Wrist cuff adaptation, which allows individuals to connect the paddle to their wrists via a cuff.

There are many benefits to staying physically active after SCI and there is a large variety of sports to participate in. Whether you prefer staying on land, floating on water, or being in the snow, most sports have been adapted in some way or another so that all who want to can participate! Prior to trying a sport, talk with your health providers to ensure that you are in a condition to play.

Evidence for “Why be physically active after SCI” is based on:

Martin KA, Latimer AE, Francoeur C, Hanley H. Sustaining exercise motivation and participation among people with spinal cord injuries – Lessons learned from a 9 month intervention. Palaestra 2002;18(1):38-51.

Hicks AL, Martin KA, Ditor DS, Latimer AE, Craven C, Bugaresti J et al. Long-term exercise training in persons with spinal cord injury: effects on strength, arm ergometry performance and psychological well-being. Spinal Cord 2003;41(1):34-43.

Latimer AE, Ginis KA, Hicks AL, McCartney N. An examination of the mechanisms of exercise- induced change in psychological well-being among people with spinal cord injury. J Rehabil Res Dev 2004;41(5):643-652.

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.

Latimer AE, Martin Ginis KA, Hicks AL. Buffering the effects of stress on well-being among individuals with spinal cord injury: A potential role for exercise. Therapeutic Recreation Journal 2005;39(2):131-138.

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.

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

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.

de Carvalho DC, Martins CL, Cardoso SD, Cliquet A. Improvement of metabolic and cardiorespiratory responses through treadmill gait training with neuromuscular electrical stimulation in quadriplegic subjects. Artif Organs 2006;30(1):56-63.

Information for “What are adapted sports” is based on:

World Para Athletes. (n.d.). What is classification? https://www.paralympic.org/athletics/classification

Information for “What types of cycling and pushing sports are there?” is based on:

World Para Athletes. (n.d.). Para-athletics explained: Wheelchair racing. https://www.paralympic.org/news/para-athletics-explained-wheelchair-racing

Chair Institute. (2019). Best off road all terrain wheelchairs for outdoors review 2020. https://chairinstitute.com/best-wheelchairs-for-outdoors/

Information for “What adapted court sports are available?” is based on:

BC Wheelchair Sports. (n.d.). Wheelchair Tennis.https://www.bcwheelchairsports.com/sites/default/files/images/BCWSA%20Wheelchair%20Tennis%20First%20Introduction%20Manual%20-%20PRINT%20%281%29.pdf

Wheelchair Basketball Canada. (2021). About the sport. https://www.wheelchairbasketball.ca/the-sport/about-the-sport/

Wheelchair Basketball Canada. (2021). Equipment. https://www.wheelchairbasketball.ca/the-sport/equipment/

Wheelchair Rugby Canada. (2018). Rules and equipment. https://wheelchairrugby.ca/rules-equipment/

Information for “What adapted winter sports are available?” is based on:

Canadian Ski Council. (2018). Skiing is for everyone! https://www.skicanada.org/ready/accessible-skiing-information/

XCSkiResorts. (2016). Nordic adaptive sit-skis bring freedom to mobility impaired persons. https://www.xcskiresorts.com/resort-features/2016/9/12/nordic-adaptive-sit-skis-bring-freedom-to-mobility-impaired-persons

BC Hockey Saanichton, BC. (2016). Para Hockey Brochure Guide.https://www.bchockey.net/Files/Sledge%20Hockey%20Brochure.pdf

Information for “What water sports are available?” is based on:

Disabled Sailing Association of British Columbia. (2021). Sip ‘n’ Puff Technology. https://asabc.org/sip-n-puff/

Creating Ability. (2021). Seating systems. https://www.creatingability.com/seating-systems/

Creating Ability. (2021). Paddle adaptations. https://www.creatingability.com/paddle-adaptations/

Image credits

  1. Man on Arm Erg by SCIRE Community
  2. BC Wheelchair Rugby Day 1 293©Melissa Nemeth, CC BY-SA 2.0
  3. Noun Project
  4. Noun Project
  5. Noun Project
  6. Shark ©Sunrise Medical 2021
  7. Replacement parts for Invacare Top End Handcycles ©RehabMart.com, LLC 1998-2021
  8. Van Ram Fun2Go Tandem ©Bike-On.com 2020
  9. Batec Hybrid ©Batec Mobility
  10. Invacare top end crossfire all terrain wheelchair ©Invacare Corporation 2021
  11. Top end preliminator youth racing wheelchair – custom version. ©How I Roll Sports, LLC 2018
  12. Harness Glove ©Harness Designs Wheelchair Gloves
  13. Wheelchair Tennis ©BC Wheelchair Sports
  14. Wigan Warthogs Wheelchair Basketball-2 ©Andrew Spillane, CC BY-ND 2.0
  15. Equipment ©International Wheelchair Rugby Federation 2013-2021
  16. London 2012 Paralympics Wheelchair Rugby (Murderball) ©Sum_of_Marc, CC BY-NC-ND 2.0
  17. Monique-1 Mono Ski ©Enabling Technologies 2021
  18. Dynamique Bi Ski ©Enabling Technologies 2021
  19. Woman using sit ski – photo by northeast passage ©U.S. Forest Service – Pacific Northwest Region, Public Domain Mark 1.0
  20. Sledge Hockey: Italy/Sweden ©Mariska Richters, CC BY-NC-SA 2.0
  21. Terry in Matin 16
  22. Outfitted Kayak ©Creating Ability 2021
  23. Stabilizing Outriggers ©Creating Ability 2021

 

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.

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).

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 how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

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.

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 how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

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.

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 are 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 suggests 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 influence 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 the inaccessibility of 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 countertops.
  • 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 of 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 a code padlock 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 home 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 doorknobs 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 how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

Parts of this page has been adapted from the SCIRE Professional “Housing and Attendant Services: Cornerstones of Community Reintegration after SCI” Module:

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 ©SCIRE
  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.

Community Stories: 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.

Community Stories: Sherry Caves on Motherhood

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Authors: Sarah Yada Seto, Dominik Zbogar | Published: 4 March 2021

 

Resilience Has No Bounds –
Sherry’s Journey as a Mother Living With SCI

When you first meet Sherry Caves, you can immediately sense she has a strong will, and is full of determination. Hit by a drunk driver when she was just seven years old, Sherry is paraplegic and has undergone 13 or 14 spinal surgeries over the years. Despite this accident, Sherry continues to live an active life, full of adventure – she’s gone sailing, hiking, zip lining and even bungee jumping. She and her husband, Darryl, also have a son, Aidan, now 26-years old.

“I never grew up feeling like I had much of a disability,” Sherry mused. “As a teenager, when I travelled from my hometown to compete in sports, I had met one or two girls my age with an SCI. As an adult, though, I really didn’t know many girls or women with an SCI. “When I became pregnant with my son, Aidan, I tried to seek out peers that had experienced pregnancy and parenting but with no luck. So, I went through it with a bit of ignorant bliss; with the same angst as any other mom-to-be but not knowing how my body was going to respond as I grew. I soon realized that doing this while living with an SCI … that your disability could be magnified and at times be at the forefront.” When Aidan was born, Sherry and Darryl’s lives changed like any new parents’ lives would. Sherry quickly found ways to adapt to her new life as a mom. Back then it was less about technological help, and more about the mental strength and fortitude to persevere during the ups and downs of raising a child.

What years were the most challenging for Sherry as a mother? “I’d have to say when your child is under 2 years old, and is not mobile. For me, when he was a baby to toddler, it was more of a physical challenge; it was a little harder for me, with balance and with being fused. I learned that when I dressed him in overalls, it made it easier to grab hold of this crawling baby from the floor. Over time, a certain dynamic develops – children discover quickly that you aren’t able to pick them up the same way as others perhaps and they figure out how to crawl up using your chair to get on your lap. They’re always motivated to be with you. After that, it’s normal parenting.”

“I lived in the West End and would have Aidan walk beside me from when he was about 2 or 3. My rule was that he would have to have his hand on my lap for safety if just he and I were out for a walk. If he took his hand off my lap, he knew he’d be back on my lap or we’d go home. He learned it was all about safety.”

The family’s passion for the outdoors continued through the years raising Aidan. She needed to find adaptable ways to cope with wheeling across grass, parks, and beaches. During those times she would often use a scooter for a day outing to English Bay or Second Beach pool back when Aidan was 4 or 5 years old. In recent years, using a Freewheel attachment has been helpful.

“You want to keep up with them. You don’t want to limit them. There has been an explosion in wheelchair technology recently which I didn’t have access to when my son was younger. Nowadays there are power assist wheels or e-front wheel drive attachments that are quite affordable that enable a level of independence depending on your level of SCI. I’ve also had the same handcycle since my son was about 9 years old – I wished I had a Bionx (e-bike motor add-on) back then! They came out with them years later and it allowed me to cycle easier and more enjoyably while keeping up with the family.” Fostering a love for cycling would propel Aidan to eventually become a member of the Canadian Men’s National Track Cycling Team, medaling at several international World Cups, Commonwealth Games and multi-Pan-American games, retiring just this year.

Sherry Caves, pictured here with husband, Darryl and son, Aidan, on the Access Challenge overnight hike in Manning Park over 20 years ago.

Does Sherry have any final words of advice for people living with SCI – looking to become new parents in the future – particularly when the world is facing a global pandemic? “It’s wonderful, rewarding, and challenging. Focus on your health. If you’re not healthy, it complicates everything. COVID-19 has added that extra layer of risk. But I feel people with SCI have already been down for the count with issues like AD, wounds or UTI’s. You just have to stop, recalculate and wait until you’re healthy, and start again. I guarantee this isn’t the first time we’ve all had to stop and restart.”

“Join a support network. SCI-BC and BCMOS (BC Mobility Opportunities Society) are great resources and have awesome support networks. A friend and I started a ‘Women with SCI’ support group years ago and to this day, there are about 10 of us that still go out for lunch and dinner (pre-COVID-19 times).” Sherry stops for a moment and adds one more word of advice. “Take things in stride – life is ever changing. No one phase will ever stay the same.”

These are words that all of us are sure to agree with and can take to heart.

Understanding Rehabilitation

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Author: SCIRE Community Team | Reviewer: Shannon Sproule | Published: 25 September 2017 | Updated: ~

Rehabilitation is an important part of recovery after spinal cord injury (SCI). This page explains what rehabilitation is and what to expect in rehabilitation after an SCI.

Key Points

  • Rehabilitation is the process of recovering function and independence after a spinal cord injury.
  • Rehabilitation is an active process where a person works together with their family and healthcare team to achieve their rehabilitation goals.
  • Rehabilitation programs involve many different activities, such as managing medical problems, developing mobility and independent living skills, adjusting to the injury, and planning for return to the community.
  • How long a person stays in rehabilitation depends on many factors, such as the characteristics of the injury, where they live, and how much support they have. In Canada, the average stay in rehab after a traumatic SCI is around 70 to 80 days.

Rehabilitation is the process of recovering function and independence after a spinal cord injury (SCI).

Part of rehabilitation may focus on developing mobility skills, like walking or using a wheelchair.1

“Rehabilitation” (or simply “rehab”) describes both this process and the health services (like the programs, hospitals, and centers) that support it.

After leaving an acute care hospital after SCI, most people move to a “rehabilitation center” or ‘rehabilitation hospital’, where they focus on recovering and developing the skills for living with an SCI long-term.

Rehabilitation is tailored to each person’s unique needs and goals. It may involve medical and nursing care, rehabilitation therapies (like physiotherapy, occupational therapy, or respiratory therapy), and a number of other health services to help ease the transition from the hospital to the community.

 

Susana describe her experience with regaining hand function through rehabilitation.

 

Listen to Lidia describe what going through rehabilitation was like for her.

Rehabilitation may be provided in several forms based on the needs of the person and their environment.

A woman lying in a hospital bed

Inpatient rehabilitation involves overnight stays and coordinated support in daily activities.2

Staying overnight in rehabilitation (Inpatient rehabilitation)

Inpatient rehabilitation is when a person stays overnight at a rehabilitation centre. They receive full-day programming including medical, nursing, and therapy services and assistance with meals, bathing, and dressing. Inpatient rehabilitation is the most intensive type of rehabilitation.

Visiting rehabilitation for select services (Outpatient rehabilitation)

Outpatient rehabilitation is when a person who is living in the community visits a rehab centre or clinic for regular services. Outpatient rehabilitation may be used by people who have already completed inpatient rehabilitation or do not need to stay overnight in rehab.

SCI rehabilitation programs

Specialized SCI rehabilitation programs may be available in larger communities in addition to more standard services. These programs offer SCI-specific services like special clinics for wheelchair seating, sexual health, and employment counselling.

 

Community-based rehabilitation

Community-based rehabilitation involves receiving services from a community-run rehabilitation centre. These centres offer support for rehabilitation within a community-oriented local setting and may provide a wide variation of different services based on the centre, local environment, and healthcare system. Community-based rehabilitation is an important component of rehabilitation, especially in places where formal healthcare services are unavailable or inaccessible.

The SCI and most other early medical problems are typically diagnosed and treated in the acute care hospital before rehabilitation. However, medical testing and imaging may also be done during rehabilitation to monitor healing and to diagnose any new health problems. Testing done in rehabilitation may include:

  • The International Standards for Neurological Classification of Spinal Cord Injury exam (or ASIA Exam) is often done at several points during rehabilitation to monitor recovery.
  • Physical testing includes testing for important specific physical levels related to function and independence. For example, assessing strength (more than AIS exam does), bladder control (such as residual volumes), and pain (visual analog scale). Many specific outcome measures are used.
  • Outcome measures are special tests that measure progress or change in a particular area. These tests may involve verbal or written questionnaires and tests of physical function (like walking for a set length of time or wheelchair skills) or Psychological adjustments (like quality of life measures). Common tests include the Functional Independence Measure and the Spinal Cord Independence Measure. These tests are often repeated multiple times, which is an important way of measuring progress over time.

Medical testing and imaging

An emergency room with one bed, two computer monitors, and other equipment

After being treated for acute medical conditions in the emergency room, various assessments and medical tests may be performed.3

Most medical testing and imaging is done in the acute care hospital before rehabilitation. However, some of these tests may be done to monitor changes or if new health problems arise. These may include:

A cartoon pen and clipboard with check marks and x marksThe goals of rehabilitation are different for everyone. Every person has a unique spinal cord injury and different priorities about what is important to them. Goal setting can help focus efforts on what each person really wants to achieve during rehabilitation.

Goal setting in rehabilitation involves developing specific and measurable goals together with the input of the healthcare team and family. A specific plan is then agreed upon to work towards achieving those goals.

The main focus of rehabilitation is to develop the skills needed to live with an SCI. This focuses on living with or without assistance either in an independent residence or a facility. Rehabilitation involves a wide range of activities and therapies, including those that focus on:

  • Managing medical problemsSilhouette of a person lying on a bed and a healthcare provider talking at the end of the bed
  • Supporting adjustment to the injury
  • Developing mobility and independent living skills
  • Planning for return to the community

The activities that make up a person’s rehabilitation depend on the person, their SCI, their discharge environment, support and funding, as well as personal priorities.

A number of medical problems may be present during rehabilitation. Medical problems are addressed through the care of your healthcare team and by developing the knowledge and skills to manage these problems long-term.

Man sitting on power wheelchair with assistive control devices

Some people with SCI need help with breathing and coughing.6

  • Skin care involves caring for the condition of the skin and treating and preventing wounds and pressure ulcers. This may involve pressure relief techniques, specialized seating, and nutritional changes along with skin care education. Treatment for active wounds may involve wound dressings or treatments, medications, equipment or mobility recommendations to address possible causes.
  • Bowel care involves a variety of physical, dietary, and medication treatments for managing bowel problems. It will also involve learning about how to manage bowel care once you leave rehab.
  • Bladder care involves regularly emptying the bladder using catheters or other techniques, treating problems like urinary tract infections, and staying hydrated. It also involves learning how to manage bladder care once you leave rehab for long term bladder health.
  • Pain management involves trying different medications, physical strategies, and other techniques to manage pain effectively.
  • Spasticity care involves learning about spasticity and using treatments like medications, exercise, and positioning to reduce spasticity.
  • Respiratory (breathing and coughing) care may involve breathing and coughing exercises, care for lung infections, and learning to use equipment and manage breathing once you leave rehab.
  • Autonomic dysreflexia management involves recognizing autonomic dysreflexia and understanding how to prevent and treat it.
  • Clinician sitting with a patient at ICORD in discussion

    Working with a sexual health clinician may be a part of rehabilitation.7

    Blood pressure care may involve learning to manage and care for orthostatic hypotension and other blood pressure problems using medications, exercise, compression garments, or change to salt and fluid intake.

  • Sexual and reproductive health is an important part of health. Consultation with sexual health clinicians can be an important part of rehab after SCI.
  • Brain injuries and concussions can often happen at the same time as an SCI. Care for these injuries involves consulting with brain injury specialists and receiving treatments for these injuries.
  • Other injuries and issues may arise during rehabilitation that need to be managed such as muscle or bone issues, nerve entrapment, carpal tunnel and upper extremity dysfunction.

SCI is a life-changing event that can lead to a variety of different emotional and psychological responses that are unique to each person. It is common for people to experience sadness, disbelief, anger, grief, confusion, helplessness, anxiety, loss of self-image, or difficulties coping. Other individuals may develop mental disorders like depression, substance abuse, or post-traumatic stress disorder. There is no predictable response that everyone will have after experiencing an SCI; it is different for everyone.

Support for adjustment and coping during rehab may include:

Four smiling healthcare providers lined up behind each other

In addition to providing direct medical care, your healthcare team can provide education on transitioning into rehab.8

  • Assessment and treatment from mental health professionals like social workers, counsellors, or psychologists.
  • The rest of the health team, like your doctors and nurses, are also an important resource for bringing up mental health questions or concerns. They can provide you with resources and referrals for support services, counselling, and medications.
  • Support from loved ones like family and friends can also be an important part of managing after an SCI.
  • Many SCI organizations provide peer-support programs or groups, where you can meet with other people who have experienced an SCI.
  • Other things like taking an active role in your treatment and recovery, being honest about your feelings and what you need to manage your health and wellness, seeking out positive and active ways of coping, seeking out treatment for problems you identify, and staying socially engaged can all be helpful ways of managing after the injury.

Refer to our article on Depression After Spinal Cord Injury for more information. 

 

Hear Ivan’s advice on being honest with oneself after an SCI.

 

Listen to Louise speak about the impact of seeking social support after an SCI.

There are a number of mobility and independent living skills that play an important role in everyday life. These skills may be practiced during physiotherapy, occupational therapy, and other daily activities in rehabilitation.

Transferring from a bed to a wheelchair.9

  • Bed mobility is the ability to move between different positions while lying in bed. This includes skills like turning while in bed or moving into a sitting position at the edge of the bed.
  • Sitting balance is an important part of many other skills like transfers, getting up to standing, and wheelchair skills. It may be worked on specifically or incorporated into other exercises.
  • Transfers are techniques for safely moving between different positions and surfaces. For example, moving from a bed to a wheelchair is a type of transfer. Transfers may also involve the use of mechanical lifts, transfer boards, and the direction of caregivers.
  • Selecting a wheelchair and other equipment is an important part of rehabilitation. Therapists work with each person to select a wheelchair based on their needs. It should be properly fitted to avoid pressure sores, ensure comfort, maintain posture, function, and prevent complications. Other equipment like beds, mattresses, and devices for toileting and bathing are also important for independent living.
    A robotic exoskeleton

    A robotic exoskeleton used for walking.10

  • Wheelchair skills may include a variety of different techniques such as going up sidewalk curbs safely and opening doors. Wheelchair skills are usually taught one-on-one or in class.
  • Walking skills may be practiced in rehabilitation. This may involve a variety of different strategies, which usually progress from standing to stepping to walking. It may also involve strengthening exercises, assistive devices like canes, walkers and parallel bars, and braces and orthotics. Some facilities use special equipment such as body weight supported treadmill training and robotic exoskeletons.
  • Resistance (strength) training may involve the use of pulleys, free weights, body weight, and exercise bands. People who have greater weakness may also use slings, springs or pool exercises (hydrotherapy) to help build strength during therapy, group classes, or on their own.
  • Aerobic exercise is exercise that trains the heart, lungs, circulatory system through repetitive and movements for a long time. Aerobic exercise is a very important part of maintaining cardiovascular fitness. Aerobic exercise in rehabilitation may involve activities like arm cycling, functional electrical stimulation cycling and supported walking using parallel bars or body-weight support.
    A woman on a wheelchair arm cycling at the gym

    A person with SCI arm cycling.11

  • Electrical stimulation, including functional electrical stimulation, can be used to activate muscles for exercise and strengthening. Stepping, cycling, reaching, hand to mouth, or grasping exercises are common functional activities done together with electrical stimulation.
  • Activities of daily living are self-care tasks like bathing, toileting, dressing, feeding, and grooming. For many people with SCI, new or modified techniques for doing daily tasks may be needed. This may involve learning how to use new techniques, special equipment, or learning how to direct caregivers on how to do these tasks.

Returning to community living after an SCI involves planning for suitable living arrangements after rehab and for return to their previous activities. This is done with support from the whole health team and may be led by a social worker or discharge planner. During rehabilitation, activities that help with return to the community may include:

  • Planning for leaving the hospital involves arranging for home modifications, alternative housing, or referral to a long-term care facility or outpatient services.
  • Community resources help individuals locate and utilize services. Access to community groups, peer mentors, transit, home support, personal care assistants, nurses and therapists can assist those returning to community living.Cartoon bills and stacks of coins
  • Managing finances may be another important component of planning for return to the community. It is important to be aware of any disability or tax changes. Social workers can assist individuals to identify these things and plan for any changes.
  • Returning to work depends on the person and their occupation. During rehabilitation, patients often consult a vocational counsellor who can help plan for return to work.
  • Returning to recreation and leisure activities may involve working with a recreational therapist on skills and strategies to return to important recreation activities.
  • Driver rehabilitation involves learning how to drive with different levels of physical function, including how to make modifications to vehicles and to get re-tested with a modified license if that is needed.

A team of health care professionals and specialists works in collaboration with an individual and their family members to meet the goals and objectives of Rehabilitation.

Physical therapists helping a person regain walking function with an ekoskeleton and walker

Physical therapists helping a person regain walking function with an exoskeleton.13

  • Physiatrists (Physical Medicine and Rehabilitation Physicians) are medical doctors who specialize in rehabilitation and provide care to individuals with SCI. They help determine if an individual should participate in rehabilitation and treat many of their physical issues.
  • Specialist Physicians offer consultation and specialized treatment related to SCI. These include General Surgeons, Neurologists (nervous system), Urologists (urinary system), Plastic Surgeons (restoration or reconstruction), Orthopedic Surgeons (bone, muscle, and joint), and Neurosurgeons (nerve and brain).
  • Nurses provide consultation services and various forms of direct care such as pain management, bowel and bladder routine management, wound management, and skin care.
  • Pharmacists specialize in the management of medications. They prepare and dispense medications, and provide consultation services to patients and other professionals.
  • Physical therapists (Physiotherapists, PTs) specialize in helping people to maximize their movement and functional independence. Physiotherapists work with individuals on mobility skills like transfers, walking, wheelchair skills, arm movements, the treatment of wounds and pain, and may also prescribe mobility devices.
  • Occupational therapists (OTs) specialize in helping people to meet their goals for daily living and functional activities. Occupational therapists work with individuals on developing techniques for daily tasks like bathing, dressing, and eating. They also assess the safety and accessibility of living spaces and prescribe equipment like wheelchairs and braces.
  • Speech-language pathologists (SLPs) specialize in improving speech and swallowing ability, dealing with problems associated with breathing assistance during mechanical ventilation and tracheostomies, and developing communication skills.
  • Therapy assistants (Physical Therapy Assistants, Occupational Therapy Assistants, Speech-Language Assistants, Rehabilitation Assistants) work under the supervision of physical therapists, occupational therapists, and speech-language pathologists. During rehabilitation, they may assist with sitting, self-care, and other therapy tasks.
  • Respiratory therapists (RTs) specialize in cardiopulmonary (heart and lungs) treatments related to oxygen delivery, suctioning, and mechanical ventilation.
  • Recreation therapists specialize in developing the abilities needed to participate in leisure activities.
    A group of people on wheelchairs socializing with each other

    Peer mentors can offer emotional support and practical advice on living with a SCI.14

  • Social workers specialize in the provision of community resources, support, and counseling related to recovery from mental disorders, and may assist in planning care after hospitalization.
  • Psychologists specialize in the provision of mental health assessments, counselling and psychotherapy for mental disorders, and additional support in coping with psychological or emotional problems.
  • Dieticians specialize in managing the nutritional needs of individuals and groups. They are also involved in meal planning, nutritional assessment and dietary education.
  • Sexual health clinicians specialize in assisting individuals with a meaningful sexual life after illness or injury.
  • Spiritual care professionals (Chaplains) provide counselling related to spiritual, emotional or religious needs.
  • Vocational rehabilitation counsellors assist individuals in returning to work.
  • A peer mentor is a person with SCI who provides support during rehabilitation by describing their own experiences in adjusting to life after SCI.

How long you stay in rehabilitation depends on many factors, such as the characteristics of your injury (whether it is complete or incomplete and the level of injury), where you live, and whether you develop new medical problems (such as a pressure ulcer) during rehabilitation.A cartoon calendar

In Canada, the Rick Hansen Spinal Cord Injury Registry collects and analyzes information from participating hospitals and rehabilitation centers for people with traumatic SCI. The most recent statistics from 2016 show that in Canada:

  • People with paraplegia stay in inpatient rehabilitation for an average of 72 days
  • People with tetraplegia stay in inpatient rehabilitation for an average of 83 days

However, these statistics are averages of the whole population and every person and situation is different. Speak to your health provider for more information.

There are several places that a person may go after leaving rehabilitation. Leaving the hospital is called discharge. Sometimes, people may also move between different hospitals during rehabilitation. Before leaving the rehabilitation facility, some individuals stay overnight to adjust to their new arrangements and make sure everything is safe and easy to use.

Home

Some people will return home to the community after rehabilitation. Often, home modifications are needed to make the home accessible and safe for someone who uses a wheelchair or has different accessibility needs than they did before. People who return home from inpatient rehabilitation often may also receive outpatient rehabilitation services for continued care.

Another healthcare or assisted living centre

Other individuals may go to a long-term or transitional care facility, or an independent living facility within the community.

The process of rehabilitation is complex and can vary in length for many reasons, including characteristics of the injury, where the individual lives, and how much support the individual has. With the aid of specialists from your rehabilitation team, programs can be tailored to help you achieve goals such as developing functional independence, mobility, and adjusting to life with an SCI.

To learn more about rehabilitation and how you can reach your personal goals, speak to your main healthcare provider.

For a review of how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

Parts of this page have been adapted from the SCIRE Professional “Rehab: From Bedside To Community” page:

Eng JJ. (2014). SCIRE Systematic Review Process: Evidence. 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 1-79.

 

World Health Organization: World Report on Disability 2011. Geneva, Switzerland, World Health Organization, 2011.

Rick Hansen Institute. Rick Hansen Spinal Cord Injury Registry: A look at traumatic spinal cord injury in Canada in 2016. Published May 2017. Accessed September 2017.

Kirshblum SC, Burns SP, Biering-Sorensen F, Donovan W, Graves DE, Jha A, Johansen M, Jones L, Krassioukov A, Mulcahey MJ, Schmidt-Read M, Waring W. International standards for neurological classification of spinal cord injury (revised 2011). J Spinal Cord Med. 2011 Nov;34(6):535-46. doi: 10.1179/204577211X13207446293695.

Wade DT. Goal setting in rehabilitation: an overview of what, why and how. Clin Rehabil. 2009 Apr;23(4):291-5.

Image credits:

Image by SCIRE Community Team

  1. Image by SCIRE Community Team
  2. Aimee in bed ©Rob Cameron, CC BY-NC 2.0
  3. New UPMC East: Emergency patient room ©daveynin, CC BY 2.0
  4. Checklist ©lastspark, CC BY 3.0 US
  5. Therapy ©Vectors Market, CC BY 3.0 US
  6. Image by SCIRE Community Team
  7. Image by SCIRE Community Team
  8. Best Shoes for Nurses ©Esther Max, CC BY 2.0
  9. Image by SCIRE Community Team
  10. Ekso Bionics Ekso ©Ekso Bionics, CC BY-ND 2.0
  11. Revved Up Lab ©Queen’s University, CC BY-NC-ND 2.0
  12. Budget ©Vectors Market, CC BY 3.0 US
  13. Trevor Green ©Simon Fraser University – Communications & Marketing, CC BY 2.0
  14. KPE wheelchair basketball 08 ©University of the Fraser Valley, CC BY 2.0
  15. Calendar ©tezar tantular, CC BY 3.0 US

 

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.