Pregnancy After Spinal Cord Injury

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Author: Hannah Goodings | Reviewer: Frédérique Courtois | Published: 11 September 2023 | Updated: ~

Key Points

  • Women with spinal cord injuries (SCI) can have successful, safe, pregnancies.
  • Along with the many changes that able-bodied pregnant women experience, there are unique risks for women with SCI during pregnancy, delivery and postpartum periods.
  • Having regular communications with a team of medical professionals before, during and after pregnancy can help ensure a safe pregnancy for the mother and the child.

Yes. Female fertility is often unaffected after SCI meaning that women with SCI are able to have successful pregnancies. During the initial phase of recovery, the majority of women experience a menstruation pause lasting 5-12 months. Once menstruation resumes, the women’s ability to undergo pregnancy returns to normal.

Refer to SCIRE Professional’s module on Sexual and Reproductive Health for more information!

It is recommended that women with SCI attend a consultation prior to pregnancy to discuss the unique risks involved when pregnant with SCI. This conversation and continued appointments with health care professionals during pregnancy can help ensure a safe pregnancy, delivery and postpartum period. Common preconception medical team members may include:


A skilled medical professional who specializes in pregnancy and births. Finding an obstetrician with SCI expertise can be greatly beneficial as they may have adapted medical equipment and experience detecting specific SCI pregnancy risks and warning signs.


A health professional who often works with women pre-conception, during pregnancy, during delivery and after birth, often in collaboration with other hospital medical staff. It should be noted that the role of midwives varies around the globe.

Obstetric anesthesiologist

A trained anesthesiologist who specializes in epidurals during delivery. An epidural is frequently used for pain reduction but in SCI populations can also reduce the risk of autonomic dysreflexia occurring during birth. For this reason, an obstetric anesthesiologist with SCI expertise is beneficial.

Spinal nurse

A nurse that specializes in SCI care, both acutely and long-term.

Physical/Occupational Therapist

Therapists who create mobility programs and adjusted techniques of completing activities of daily living and exercises in a safe manner.

Meeting with multiple practitioners can be time consuming. Finding a team with strong communication between health care providers can ease some of this.

Women with SCI are able to have healthy pregnancies and births. However, these pregnancies are often considered high risk due to the added SCI related risks during pregnancy. These include:

Bladder and Bowel

Urinary Tract Infections (UTI)

UTIs are a common issue after SCI and may require antibiotic treatment. Pregnancy can reduce your mobility and put more pressure on your bladder, increasing the risk of incontinence and put you at higher risk of developing a UTI. Some women may choose to use an for all or the later portion of pregnancy to help with incontinence issues. Catheters can be useful for greater bladder control, but they also pose a risk for infection. Proper catheter hygiene and monitoring of symptoms is important to catch UTIs early.

Kidney Stones

Individuals with SCI are at higher risk of developing kidney stones due to incomplete bladder emptying, use of catheters, or neurogenic bladder conditions. During pregnancy, this risk increases due to decreased mobility and the potential for increased incontinence. If you experience fever, frequent UTI symptoms, or pain (though not all individuals with SCI will experience pain) consult your health care provider to determine the best course of action.

Autonomic Dysreflexia

Autonomic dysreflexia (AD) can be triggered by a full bladder or constipation. During pregnancy, the risk for bladder incontinence and constipation increases. This risk can be reduced with a schedule and tracking system for urinary and bowel movements. Speaking to a registered dietitian to adjust fiber intake or begin laxatives may also be helpful to decrease constipation risk.

Refer to our articles on Bladder Changes, UTIs, and Autonomic Dysreflexia for more information!


For some individuals, spasticity worsens during pregnancy. Medication use during pregnancy, particularly spasticity-reducing medication, should be discussed with a physician to keep both the mother and child safe.

Some common medications, taken by individuals with SCI (for pain, spasticity etc.) may negatively affect the baby if taken during pregnancy. Consulting your family doctor to discuss medication options is crucial.

Pressure Injuries

Reduced mobility and increased weight gain during pregnancy both play a role in the increased likelihood of pressure injuries developing. Regular pressure adjustments, skin assessments and chair fittings, completed by a seating specialist, should be done to avoid pressure injury complications during the pregnancy.

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

Mobility and Fatigue

Weight gain, increased abdominal pressure and increased spasticity during pregnancy can lead to decreased mobility and fatigue. Sleep quality is also commonly impacted by pregnancy and can worsen existing fatigue. This may result in needing help completing tasks that you have been independent in before pregnancy. It is important to pay attention to tasks you may need help with during pregnancy to ensure you have the correct supports in place.


In women with higher SCIs, breathing issues may be present or worsen during pregnancy. Raising the upper body on pillows when lying down can help with breathing but regular checks should be done to prevent pressure sores or skin shearing in this position. Those with tetraplegia may be at increased risk of pneumonia. For those with a weak cough, there is an increased risk of aspiration if experiencing vomiting from morning sickness that may be reduced by side lying. Speaking to a physiotherapist about breathing exercises or modifications to assisted coughing may also be helpful to improve breathing.

Fetus Position

Fetal malpresentation, a condition where the fetus is not properly positioned, is more common in women with SCI due to decreased muscle tone within the abdominal wall. Routine ultrasounds should be conducted during pregnancy to check the fetus’ positioning to create a safe birth plan.

Pregnancy alters and stresses many systems in the body for both able-bodied women and women with SCI. Women with SCI have higher risks with the complications listed above and may need additional support to ensure healthy pregnancies. However, with the proper medical support, a successful and safe pregnancy can be achieved.

Having regular appointments and good communication within your medical team are both key to developing a safe and successful birth plan. During delivery, some SCI specific complications to be aware of include:

Being unaware that labour has begun

Depending on the level of injury, contractions or fetal movements may not be felt by the mother. This has the potential to lead to an unexpected birth, which can be dangerous to both the newborn and the mother. To avoid this, regular cervical dilation checks should be completed from week 28 onward. For women with injury levels above T10, early hospitalization after week 36 may be recommended.

Autonomic dysreflexia

Autonomic dysreflexia (AD) is a risk throughout all the stages of pregnancy, but the risk is even more elevated during the time of labour and delivery. Some stimuli that may lead to AD include contractions and manipulation of the uterus, bladder or vagina, all involved in childbirth. AD leads to a sharp rise in blood pressure with symptoms such as a throbbing headache, red skin, nausea, and can be life threatening. The treatment for AD occurring during birth is to stop all manipulation and position the mother in an upright position. If AD cannot be controlled during birth, a caesarean section may be required to safely deliver the baby.

An epidural can reduce pain during delivery for some and it is also a valuable tool used to decrease the risk of AD. Because of its utility in decreasing the risk of AD, epidural injection may be recommended regardless of the mother’s ability to feel birthing pains. In particular, it is recommended that women with SCI above T6 should have an epidural catheter placed at T10. In some cases, an epidural may be difficult if the mother has had lumbar or thoracic spinal surgery in the past. If an epidural cannot be completed, a local anesthetic may be used before any birthing surgeries such as an episiotomy.

With every pregnancy being unique, the decision of where to give birth requires a discussion with your medical team. If the mother’s injury level is below T6, safe delivery at a local hospital rather than traveling to a large centre may be possible if all those involved are properly trained on the specific risks associated with SCI during childbirth. This decision should be made with the medical team and mother to ensure a safe delivery.

In the past, women with SCI have often been advised that a caesarean section (C-section) is the safest option for childbirth. In some cases, where fetal positioning is incorrect or due to other complications, a C-section may be needed. However, in other cases, vaginal births can be safely completed in women with SCI. The discussion of vaginal or caesarean birth should be a conversation involving the mother and her medical team in order to best achieve a safe and successful birth.

After giving birth, most women with SCI have longer stays in hospitals compared to able-bodied women. This allows for continued care of bladder emptying, birthing wounds and monitoring. After discharge from the hospital, some complications that you may face as a mother with SCI include:

Wound Healing

Due to decreased or complete lack of sensation, birthing wounds for SCI patients must be carefully inspected often to ensure they are healing properly. Women may stay in the hospital to get the care needed or they may head home if wound care can be safely continued there. Daily wound cleaning should be completed until healing is complete. If possible, visits from a midwife or nurse may be beneficial during this time.


Watch SCIRE’s YouTube video series on Breastfeeding for more information.

Mothers with SCI often have the ability to breastfeed normally. However, you may face some complications depending on your level of injury. Women with:

  • injuries above T6 tend to have reduced milk production,
  • injuries above T4 can experience trouble releasing milk due to reduced sensation of the baby latching onto the breast,
  • any level of injury may have trouble positioning the baby or holding the baby for the entirety of feeding times. In these cases, breastfeeding pillows or laying down while feeding may be a good option.

If it is determined that the baby is not getting enough to eat through breastfeeding alone, supplemental formula may be advised.

Refer to our article on Breastfeeding for more information!

Mental Health

Following delivery, many women, both able-bodied and disabled, deal with mental health changes and some develop postpartum depression or anxiety. Individuals living with SCIs are at a higher risk of depression, leading to a higher rate of postpartum depression and anxiety.

Postpartum Depression

Postpartum depression can be described by a major episode of depression occurring within 12 months of giving birth. Following delivery, many women experience postpartum blues, associated with mood swings during the first 4-10 days. An important difference is that postpartum depression greatly affects activities of daily living and postpartum blues does not.

Postpartum Anxiety

Postpartum anxiety is a major episode of anxiety during the months following giving birth and is also thought to be a more common risk in SCI populations.

Both postpartum depression and postpartum anxiety can have negative effects on the mother, child and supporting family if not treated. If you know someone suffering from either of these conditions, encouraging them to seek help from a medical professional as soon as possible is crucial.

Refer to our article on Depression for more information!

There are increased or unique pregnancy-related considerations for women with SCI such as pressure sores, mobility and fatigue issues, autonomic dysreflexia during childbirth, and issues around wound healing. However, women with SCI can have healthy pregnancies, deliveries and motherhoods, helped along with their medical team.

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

SCIRE Community. Sexual Health After SCI. Available from:

SCIRE Community. Urinary Tract Infections. Available from:

SCIRE Community. Breastfeeding. Available from:

SCIRE Professional. Sexual Reproductive Health:

SCIRE Community. Autonomic Dysreflexia. Available from:

SCI BC. Breastfeeding After SCI. Available from:

SCI BC. Female Fertility and Pregnancy. Available from:

References presented in order they appear in text.

Robertson, K., & Ashworth, F. (2022). Spinal cord injury and pregnancy. In Obstetric Medicine (Vol. 15, Issue 2, pp. 99–103). SAGE Publications Inc.

Welk, B., Fuller, A., Razvi, H., & Denstedt, J. (2012). Renal stone disease in spinal-cord–injured patients. Journal of endourology, 26(8), 954-959.

Wendel, M., Whittington, J., Pagan, M., Whitcombe, D., Pates., McCarthy, R., Magann, E. (2021). Preconception, Antepartum, and Peripartum Care for the Woman with a Spinal Cord Injury: A Review of the Literature. Obstertrical and Gynecological Survery.

Bertschy, S., Schmidt, M., Fiebag, K., Lange, U., Kues, S., & Kurze, I. (2020). Guideline for the management of pre-, intra-, and postpartum care of women with a spinal cord injury. Spinal Cord, 58(4), 449–458.

Stoffel, J. T., van der Aa, F., Wittmann, D., Yande, S., & Elliott, S. (2018). Fertility and sexuality in the spinal cord injury patient. World Journal of Urology, 36(10), 1577–1585.

Spinal Outreach Team (2017). The impact of a spinal cord injury on pregnancy, labour and delivery: What you need to know, Brisbane, Queensland: Queensland Health.

Robertson, K., Dawood, R., & Ashworth, F. (2020). Vaginal delivery is safely achieved in pregnancies complicated by spinal cord injury: A retrospective 25-year observational study of pregnancy outcomes in a national spinal injuries centre. BMC Pregnancy and Childbirth, 20(1).

Crane, D. A., Doody, D. R., Schiff, M. A., & Mueller, B. A. (2019). Pregnancy Outcomes in Women with Spinal Cord Injuries: A Population-Based Study. PM and R, 11(8), 795–806.

Bertschy, S., Bostan, C., Meyer, T., & Pannek, J. (2016). Medical complications during pregnancy and childbirth in women with SCI in Switzerland. Spinal Cord, 54(3), 183–187.

Lee, A. H. X., Wen, B., Walter, M., Hocaloski, S., Hodge, K., Sandholdt, N., Hultling, C., Elliott, S., & Krassioukov, A. v. (2021). Prevalence of postpartum depression and anxiety among women with spinal cord injury. Journal of Spinal Cord Medicine, 44(2), 247–252.

Kroska, E. B., & Stowe, Z. N. (2020). Postpartum Depression: Identification and Treatment in the Clinic Setting. In Obstetrics and Gynecology Clinics of North America (Vol. 47, Issue 3, pp. 409–419). W.B. Saunders.

Image credits

  1. Medical team Cromaconceptovisual CC0
  2. Excretory system ©Olena Panasovska, CC BY 3.0 US
  3. Digestive System ©Design Science, CC0 1.0
  4. Medication CC BY 3.0 US
  5. Pressure Injuries CC BY 3.0 US
  6. Help CC BY 3.0 US
  7. Breathing CC BY 3.0 US
  8. Fetus position CC BY 3.0 US
  9. Pregnant ©Luis Prado CC BY 3.0 US
  10. Voltage ©Clker-Free-Vector-Images, CC0 1.0
  11. Hospital Public Domain © Public Domain Certification
  12. Breastfeeding © SCIRE Community Team
  13. Mental Health ©Loritas Medina 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.

Shoulder Injury and Pain After SCI

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Authors: Jaashing He, Hannah Goodings | Reviewer: Darryl Caves | Published: 7 June 2023 | Updated: ~

Key Points

    • Shoulder injuries and pain are a common experience for many, with individuals with SCI having a slightly higher rate of occurrence.
    • Many factors contribute to the risk of shoulder injury or shoulder pain such as age and female sex. Some factors such as strength can be improved.
    • The best way to prevent shoulder injuries is to actively work to avoid them in the first place. Preventative strength training, practicing good ergonomics and improving your wheelchair handling skills can all help reduce your risk.

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Shoulder pain and injury is something that many people experience, SCI or not. In the general population, 26% of people live with shoulder pain compared to 36% for SCI populations. Interestingly, when looking at the wide variation within SCI populations, there is a similar incidence of shoulder pain whether you use a powerchair, manual chair, gait-aid or no gait-aid. It is helpful to have a good understanding of what is involved in shoulder movement to understand what makes the shoulder vulnerable to injury and how best to prepare and maintain your shoulder to avoid injury.

Posterior view of man's torso with arm raised. Muscles of the rotator cuff (supraspinatus, subscapularis, teres minor, and infraspinatus) are superimposed and labeled.The shoulder is designed for movement and a large range of motion. Bone shape, muscle coordination and connective tissue all work together to form our most flexible joint. With this large range of movement, we sacrifice some stability. Unlike the hip joint with its “ball in cup” design giving great bony stability, the shoulder has a “ball on small plate” design. The surrounding muscles and connective tissue help keep the upper arm bone (the “ball”) in place on the shoulder blade (the “dish”). There are four muscles responsible for keeping the ball in place during movement. This group of muscles is referred to as the rotator cuff muscle group and includes the supraspinatus (above the spine of the scapula), subscapularis (on the front of the scapula), and infraspinatus (below the spine of the scapula) and teres minor (on the back of the scapula). These four small muscles are responsible for “balancing the ball” but they are not the only muscles found in the shoulder. There are larger muscles that surround the joint that are used to perform movements that involve strength such as lifting, pushing or carrying.

Cartoon of front shoulder skeleton with joints (sternoclavicular, acromioclavicular, glenohumeral, scapulothoracic) labeled.

Though we often think of the shoulder as a singular joint, there are actually four joints and articulations within the shoulder system.

The joints/articulations are:

  • Sternoclavicular joint (sternum and collar bone)
  • Acromioclavicular (shoulder blade and collar bone)
  • Glenohumeral joint (shoulder blade and upper arm)
  • Scapulothoracic (ribcage and shoulder blade)

Shoulders do not work in isolation. The bones, muscles and connective tissue all interact with surrounding regions of the body resulting in the potential for disruptions in movement patterns in the shoulder. For example, the shape of the ribcage can also impact shoulder movement. It is what the shoulder blade slides on to allow for movement of the arm above shoulder height. If the shoulder blade cannot move smoothly over the ribs, reaching above shoulder height may become difficult and painful.

Shoulder pain can be grouped into two categories: neuropathic (nerve) pain and mechanical (muscle, joint and bone) pain and their treatments are different.

Neuropathic pain results from disease or damage to the nervous system (brain, spinal cord and/or nerves). This pain is often described as pins and needles, shooting electrical sensations, stabbing, coldness, burning and increased sensitivity.

Coronal section of the shoulder with bone, joint, and muscle tissue displayed.

Mechanical pain is related to pain from damaged joints (blue), bones (grey) or muscles (pink).4

Mechanical pain is pain that occurs when tissues (bone, joint, ligament, tendon, muscle) are pushed beyond the load they can handle, also known as exceeding their tissue capacity. This can be from a sudden event or misuse (overuse, repetitive) of the shoulder and can lead to damage of these tissues resulting in pain or injury. Tissue capacities can become more resilient with increased strength and movement training. They can also become less resilient with disuse, aging, or metabolic conditions such as poorly managed diabetes. A large decrease in activity for the shoulder can lead to decreased tissue capacity and can result in a higher likelihood for injuries and pain.

Mechanical pain can help guide us to understand when a tissue may be near its capacity and our activities should be adjusted to allow for rest and recovery. Sometimes pain will continue despite rest and become an unhelpful signal.

Refer to our article on Pain for more information!

Identifying the type (neuropathic vs. mechanical) and cause of shoulder pain can be complicated. As shoulders can be affected and affect many regions of the body, a thorough examination of the medical history and a physical examination, conducted by a health professional, is needed to best uncover the cause of pain. This thorough examination may involve:

A detailed history, including:

  • Diagnosis (if this pain is a result of an injury or previous diagnosis)
  • Pain history
  • Occupation
  • Recreational activities
  • Equipment history and usage

A physical examination of the:

  • Neck
  • Spine
  • Ribcage
  • Shoulder joints
  • Arm
  • Posture
  • Position of the shoulder blade on the ribcage
  • Range of movement and strength

There are certain risk factors that increase your likelihood of developing shoulder injury or pain. Many of these risk factors also exist for the general population but there are some risk factors specific to the SCI population. Some of these factors can be changed and some cannot.

Non-modifiable risk factors for all populations

Non-modifiable factors are things that can increase risk of shoulder injuries but cannot inherently be changed. These include:

  • Higher age
  • Being female
  • Prior shoulder injury
  • Metabolic diseases leading to poor connective tissue capacity (e.g. diabetes, vascular diseases)

Non-modifiable risk factors specific to SCI

  • Higher level and complete injury
  • Longer duration of injury
  • Muscle imbalances due to paralysis of specific muscles
  • Reduced functional strength around the joint due to SCI-related muscle weakness/paralysis
  • Relying heavily on upper body movement for everyday life tasks
  • Postural issues due to SCI-related muscle weakness/paralysis

Risk Factors: Tetraplegia vs Paraplegia

While shoulder pain is more common in persons with tetraplegia and in those with complete injuries (Dyson-Hudson 2004), the cause of that shoulder pain can differ:

  • In paraplegia, overuse-related shoulder pain is more common and is seen in later years after injury (Mulroy et al., 2020), a result of using the shoulders for mobility over a long period.
  • In someone with tetraplegia where shoulder muscles are affected by paralysis, an imbalance in the shoulder muscles can result and there may be spasticity that pulls the shoulder capsule. Then, just moving the shoulder can result in pain due to subluxation and impingement.

Modifiable risk factors for all populations

Modifiable factors are things that may be able to be changed with lifestyle adjustment. Risk for shoulder injury can be reduced by:

  • Improving shoulder flexibility or range of movement deficit.
  • Increasing shoulder muscle strength and/or balance.
  • Improving posture, especially of shoulders hunched forward which can increase impingement.
  • Reducing occupational exposure: percentage of time spent working at or above shoulder height, high loads or force demands, repetitive tasks, exposure to vibration, sustained or awkward postures.

Modifiable risk factors specific to SCI

  • Reduce spasticity
  • Reduce body weight if obese
  • Improve balance or stability of the body for upper extremity tasks
  • Improve home or workplace set-up to reduce shoulder height movements and weight transfers without equipment support

It is important to note that some of the factors within the modifiable lists may actually be non-modifiable for some individuals.

Refer to our article on Spasticity for more information!

Having had a shoulder injury is one of the main predictors of shoulder pain or subsequent shoulder injury. With this in mind, preventing an initial shoulder injury should be a priority.

If a shoulder injury does occur, the treatment should focus on decreasing pain and beginning initial rehabilitation followed by continued rehabilitation and prevention of future shoulder injuries.

Rehabilitation from an incident of shoulder pain or shoulder injury can seem to follow the same pathway as when one initially undergoes rehabilitation for an SCI. This is because of the need to restore and maintain mobility and strength to enable tissue capacity for function, to do the things you want and need to do. At the same time, we need to continually evaluate and re-evaluate our lifestyle, environment, and equipment choices as we age and change to ensure that these variables remain optimized and if not to change them. The following represent the key variables that need to be addressed in all situations:

Manual wheelchair with a propulsion assist device attached.

Using a propulsion assist device can eliminate the use of the arms for propulsion on a manual wheelchair.6

Managing pain

Rest and Activity Modification

Following a shoulder injury or the onset of pain, rest is often recommended as the first step in recovery. However, it can be difficult for manual wheelchair users or mobility aid users to fully rest their shoulders. In this case, you may be advised to pick and choose when to use your arms and when to use assistive technology. For example, for a manual wheelchair user, the use of a power-assisted-add-on or adding a powered front-mounted system may reduce the use of the shoulders significantly.

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

Rehabilitation techniques

Physical and occupational therapists can be great resources for injury assessments as well as pain reduction treatments and therapies. The focus of shoulder recovery should revolve around building tissue capacity through strength and flexibility training and increasing variability in movements.


Medications can be used to relieve pain and allow for more movement. These pharmacological interventions include nonsteroidal anti-inflammatory drugs (NSAIDs), acetaminophen, muscle relaxants, local anesthetic and corticosteroid injections.

Prevention and Rehabilitation

To best prevent subsequent shoulder injuries and to reduce shoulder pain, continued rehabilitation as well as strategies to reduce shoulder strain should be used.

Exercise and Stretching

Exercise programs and stretches, prescribed by a medical professional, to strengthen the shoulders, neck, chest and back muscles are helpful in preventing shoulder injuries.

The following exercises are recommended for shoulder pain after SCI, beginning with shoulder stretches and rotator cuff muscle strengthening and then other shoulder stabilizers as the pain decreases:

  1. Stretching exercises for the front of the shoulder are recommended to counter tightness associated with shoulder pain in SCI.
Man supine in bilateral stretch of anterior shoulder structures with “open book” stretch.

Bilateral stretch of anterior shoulder structures with “open book” stretch.7

Man seated in wheelchair stretching front of one shoulder using a doorway.

Seated stretch of anterior shoulder using a doorway.8

  1. Shoulder strengthening exercises are effective in reducing pain in most overuse-related shoulder pain. Start with exercises for the rotator cuff muscles.
Man using resistive band to externally rotate the shoulder with elbow tucked against body.

External rotators can be strengthened using resistive bands with the elbow pressed against the body.9

Man seated in wheelchair lifting a dumbbell to shoulder height in the scapular plane with thumb up.

The safest and most effective exercise to strengthen the supraspinatus muscle involves lifting the hand to shoulder height (90 degrees) diagonally (between directly in front and to the side- the scapular plane) with the thumb up (glenohumeral external rotation).10

  1. Exercises for scapular retractors (rhomboids/middle trapezius), scapular protractors (serratus anterior), and thoracohumeral depressors (pectoralis major/latissimus) can be added as pain decreases.
Man in wheelchair performing a one-arm row using a resistive band.

Scapular retractors strengthening using a rowing exercise with the elbow down.11

Man in wheelchair using resistive band to execute a pushing movement.

Strengthening of the scapular protractors with the opposite motion, pushing forward.12

Man in wheelchair performing resisted adduction exercise (pull-down and across the body with the elbow starting no higher than the shoulder).

Thoracohumeral depressors strengthening with resisted adduction exercises (pull-down with the elbow no higher than the shoulder).13

Ergonomically Sound Environments

Wheelchair users and mobility-aid users are exposed frequently to environments with above-shoulder-height movements because typical environments are not adapted for their mobility needs. This is a common and often distressing issue that many people living with SCI experience. An important component of a preventative injury strategy is to arrange your work, home, and other frequented spaces in an ergonomically sound set-up style to suit your needs. A physical therapist, occupational therapist or care team can evaluate your environment to create a space that reduces effort and pain for you. Modifications may include lowering shelves to avoid raising arms above the head or arranging the storage of items so that the most frequently used objects are easier to access. Having an ergonomically sound set-up that allows you to move and function efficiently and safely is a valuable tool in preventing shoulder pain.

Refer to our article on Housing for more information!

Posture and wheelchair setup

Posture has a major impact on how the body moves and should be considered when addressing a shoulder injury or the onset of shoulder pain.


When sitting upright, your head and back should be aligned. Hunched shoulders with a forward head can increase impingement of shoulder structures. Be aware of your sitting posture in your wheelchair by regularly looking at your posture with a camera or in the mirror. People with SCI are at risk for postural issues especially if they have some paralysis of trunk and/or upper limb muscles. This shift in posture can cause issues with the shoulder blade sliding as the arm is raised above shoulder height. If posture problems develop, request a seating review from health professionals.


When sleeping, ensure your shoulders are well supported. If you sleep on your side, do not lay directly on the shoulder. Pull it forward and lie on the shoulder blade. If a comfortable position cannot be found, consult your OT or PT to find an alternate technique.

Wheelchair setup

Two images of a man in a wheelchair with differing axle position. One with the wheels forward and the other with wheels rearward.Changes can be made to your wheelchair to help improve shoulder pain. It is important to make sure your wheelchair is set up in the most efficient way for your propulsion. Adjustment of your position in the chair as well as how the wheel is positioned will alter how you are pushing the chair, and how much energy is required to propel. Some possible adjustments include moving the rear wheel forward to reduce the reaching distance to the wheel, adjusting the wheel axle height to optimize your elbow angle (between 100-120 degrees), and general wheelchair maintenance (e.g, tire pressure, caster functions) to ensure your wheelchair remains easy to propel.

Refer to our articles on Wheelchair Seating and Manual Wheelchairs for more information!

Wheelchair Skills

Increasing wheelchair skills by learning correct propelling and maneuvering techniques will aid in protecting against shoulder injuries. This includes skills such as wheelies, propulsion techniques such as using long, smooth strokes and recognizing signs that your wheelchair may need maintenance.

Refer to our article on Wheelchair Provision for more information!

Shoulder injuries are a common experience for many people. Prevention is the best approach and there are many factors that can be modified to reduce your risk of shoulder pain. These include stretching and strengthening your shoulder muscles, ensuring good posture, ergonomic assessments and bettering your wheelchair handling skills.

If you are experiencing shoulder pain or have injured your shoulder, please seek advice from your health care team. It is best to discuss all treatment options with your health providers to find out which treatments are suitable for you.

Parts of this page have been adapted from the SCIRE Professional “Pain Management”, “Upper Limb”, and “Wheeled Mobility and Seating Equipment” Modules:

Mehta S, Teasell RW, Loh E, Short C, Wolfe DL, Hsieh JTC (2014). Pain Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Noonan VK, Loh E, McIntyre A, editors. Spinal Cord Injury Rehabilitation Evidence. Version 5.0: p 1-79.
Available from:

Harnett A, Rice D, McIntyre A, Mehta S, Iruthayarajah I, Benton B, Teasell RW, Loh E. (2019). Upper Limb Rehabilitation Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Noonan VK, Loh E, Sproule S, McIntyre A, Querée M, editors. Spinal Cord Injury Rehabilitation Evidence. Version 7.0: p 1-137.
Available from:

Titus L, Moir S, Casalino A, McIntyre A, Connolly S, Mortenson B, Guilbalt L, Miles S, Trenholm K, Benton B, Regan M. (2016). Wheeled Mobility and Seating Equipment Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Loh E, McIntyre A, editors. Spinal Cord Injury Rehabilitation Evidence. Version 6.0: p 1-178.
Available from:


Bossuyt, F. M., Arnet, U., Brinkhof, M. W. G., Eriks-Hoogland, I., Lay, V., Müller, R., Sunnåker, M., & Hinrichs, T. (2018). Shoulder pain in the Swiss spinal cord injury community: prevalence and associated factors. Disability and Rehabilitation, 40(7), 798–805.

Hodgetts, C. J., Leboeuf-Yde, C., Beynon, A., & Walker, B. F. (2021). Shoulder pain prevalence by age and within occupational groups: a systematic review. In Archives of Physiotherapy (Vol. 11, Issue 1). BioMed Central Ltd.

Jain, N. B., Higgins, L. D., Katz, J. N., & Garshick, E. (2010). Association of shoulder pain with the use of mobility devices in persons with chronic spinal cord injury. PM and R, 2(10), 896–900.

Dyson-Hudson, T. A., & Kirshblum, S. C. (2016). Shoulder Pain In Chronic Spinal Cord Injury, Part 1: Epidemiology, Etiology, And Pathomechanics. Http://Dx.Doi.Org/10.1080/10790268.2004.11753724, 27(1), 4–17.

Pannek, J., Pannek-Rademacher, S., & Wöllner, J. (2015). Use of complementary and alternative medicine in persons with spinal cord injury in Switzerland: a survey study. Spinal Cord 2015 53:7, 53(7), 569–572.

Kim, E., & Kim, K. (2015). Effect of purposeful action observation on upper extremity function in stroke patients. Journal of Physical Therapy Science, 27(9), 2867–2869.

Carlson, M. J., & Krahn, G. (2009). Use of complementary and alternative medicine practitioners by people with physical disabilities: Estimates from a National US Survey. Https://Doi.Org/10.1080/09638280500212062, 28(8), 505–513.

Image credits

  1. Sore shoulder ©Gan Khoon Lay, CC BY 3.0
  2. Modified from: Man view from back. Blades, shoulder and trapezoid illustration. Shutterstock
  3. Humerus Fracture ©Servier Medical Art, CC BY 3.0
  4. Coronal section of the shoulder joint ©Database center for life science, CC BY 4.0
  5. Pulley Row by SCIRE Community
  6.  Firefly Electric Attachable Handcycle for Wheelchair © Rio Mobility 2020
  7. – 13. Reprinted with permission from Topics in Spinal Cord Injury Rehabilitation, American Spinal Injury Association. Sara J. Mulroy et al. (2020). A Primary Care Provider’s Guide to Shoulder Pain After Spinal Cord Injury. 26(3): 186–196.
  1. Wheelchair disability injured disabled handicapped ©stevepb, Pixabay License
  2. Axle Position by SCIRE Community


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).

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

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

Duncan’s Experience

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

Health concerns

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

Wheelchair maintenance

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

Power assist

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

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

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

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

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

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

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

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

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

Travel cushions

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

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

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

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

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

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


Duncan’s Experience

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



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

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

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


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.


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!


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.


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!


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

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

Map apps

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

Airline apps

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

Public transit apps

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

Accessibility apps

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

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

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

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

Byard, R.W. (2019) Deep venous thrombosis, pulmonary embolism and long-distance flights. Forensic Sci Med Pathol 15, 122–124.

Centers for Disease Control and Prevention (2022, June 9). Blood clots and travel. What you need to know.

Craig Hospital. (2019, November 22). 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.

SCI Forum. (2011, March 8). Travel after spinal cord injury: Finding your comfort zone. Northwest Regional Spinal Cord Injury System.

Souza, R. (2017, October 5). 10 tips on how to take a long-haul flight with SCI. Christopher and Dana Reeve Foundation.

Spinal Cord Injury BC. (2018). Your Accessible Travel Guide.

Spinal Cord Injury Ontario. (n.d.). On the road again.

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:


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

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 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?


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


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 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.


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

Accessibility of the environment

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

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

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

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

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

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

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

Anschutz, J. (2015). Driving After Spinal Cord Injury. Spinal Cord Injury Model System, (October). Retrieved from

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

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.

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

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 is required for optimal housing. Housing is an important factor in transitioning back into the community, which is a strong predictor of quality of life. Some (weak) evidence has noted that housing can influence quality of life as it:

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

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

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

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

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

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

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

How well you can perform basic self-care tasks independently

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

Degree of impairment

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


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


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

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

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


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


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

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

Living room

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

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

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


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


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

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

Smart devices. 15

Using technology for accessibility

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

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

Addition of loops and straps

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

Modifications to existing structures

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

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

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

Adaptive equipment

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

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

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

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

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

Parts of this page has been adapted from 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.

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.

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.

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.

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.

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.

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

Palmer, J., & Ward, S. (2013). The livable and adaptable house. Retrieved from:

Muir, K. (2020.) Adapting a home for wheelchair accessibility. Retrieved from:

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

SCI Saskatchewan. Accessible housing. Retrieved from:

Muir, K. (2020.) Adapting a home for wheelchair accessibility. Retrieved from:

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.

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


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

Physical Activity After Spinal Cord Injury

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

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

Key Points

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

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

Muscle type, size, and strength

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

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

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

Activities of Daily Living

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


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

Secondary complications

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

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

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

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


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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

Refer to our article on Abdominal Binders for more information! 

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

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

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

Low blood pressure

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

Autonomic Dysreflexia

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

Refer to our article on Autonomic Dysreflexia for more information!

Temperature regulation

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

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

Skin concerns

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

Refer to our article on Pressure Injuries for more information!

Overuse injuries

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

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

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

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

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

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

Available from:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

SCIRE. (2020, March 6). Exercise after Spinal Cord Injury: How to Begin [Video file]. Retrieved from

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

SCIRE. (2020, March 6). Exercise after Spinal Cord Injury: How to Adapt Equipment [Video file]. Retrieved from

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

SCIRE. (2020, March 6). Exercise after Spinal Cord Injury: Complications to Avoid [Video file]. Retrieved from:

Image credits

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


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

Epidural Stimulation

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

Key Points

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

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

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

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




What is “an Epidural”?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Epidural stimulation should not be used in the following situations:

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

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

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

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

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

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

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

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

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

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

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

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

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

For more information, visit our pages on Bowel and Bladder Changes After SCI!

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

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

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

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

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

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

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

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

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

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

Refer to our article on Pain After SCI for more information!

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

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

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

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

Refer to our article on Respiratory Changes After SCI for more information!

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

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

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

Refer to our article on Sexual Health After SCI for more information!

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

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

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

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

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

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

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

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

Refer to our article on Orthostatic Hypotension for more information!

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

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

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

Learning to make voluntary movements

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

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

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

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

Learning to stand

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

Learning to walk

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

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

Is it the training or the epidural stimulation?

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

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

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

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


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

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

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

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

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


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

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

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

Available from:

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

Available from:

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

Available from:

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

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

Toossi, A., Everaert, D. G., Azar, A., Dennison, C. R., & Mushahwar, V. K. (2017). Mechanically Stable Intraspinal Microstimulation Implants for Human Translation. Annals of Biomedical Engineering, 45(3), 681–694. Retrieved from

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

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

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

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

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

Moore, D. M., & McCrory, C. (2016). Spinal cord stimulation. BJA Education, 16(8), 258–263. Retrieved from

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

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

Eldabe, S., Buchser, E., & Duarte, R. V. (2015). Complications of Spinal Cord Stimulation and Peripheral Nerve Stimulation Techniques: A Review of the Literature. Pain Medicine, 17(2), pnv025. Retrieved from

Taccola, G., Barber, S., Horner, P. J., Bazo, H. A. C., & Sayenko, D. (2020). Complications of epidural spinal stimulation: lessons from the past and alternatives for the future. Spinal Cord, 58(10), 1049–1059. Retrieved from

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

Herrity, A. N., Williams, C. S., Angeli, C. A., Harkema, S. J., & Hubscher, C. H. (2018). Lumbosacral spinal cord epidural stimulation improves voiding function after human spinal cord injury. Scientific Reports, 8(1), 1–11. Retrieved from

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dimitrijevic, M. R., Illis, L. S., Nakajima, K., Sharkey, P. C., & Sherwood, A. M. (1986). Spinal cord stimulation for the control of spasticity in patients with chronic spinal cord injury: II. Neurophysiologic observations. Central Nervous System Trauma, 3(2), 145–152. Retrieved from

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

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

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

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

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

Edgerton, V. R., & Harkema, S. (2011). Epidural stimulation of the spinal cord in spinal cord injury: current status and future challenges. Expert Review of Neurotherapeutics, 11(10), 1351–1353. Retrieved from

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

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

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

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

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

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

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

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

Angeli, C. A., Edgerton, V. R., Gerasimenko, Y. P., & Harkema, S. J. (2014). Altering spinal cord excitability enables voluntary movements after chronic complete paralysis in humans. Brain, 137(Pt 5), 1394–1409. Retrieved from

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

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

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

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

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

Rejc, E., Angeli, C., & Harkema, S. (2015). Effects of Lumbosacral Spinal Cord Epidural Stimulation for Standing after Chronic Complete Paralysis in Humans. PLoS ONE [Electronic Resource], 10(7), e0133998. Retrieved from

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

Gill, M. L., Grahn, P. J., Calvert, J. S., Linde, M. B., Lavrov, I. A., Strommen, J. A., … Zhao, K. D. (2018). Neuromodulation of lumbosacral spinal networks enables independent stepping after complete paraplegia. Nature Medicine, 24(11), 1677–1682. Retrieved from

Angeli, C. A., Boakye, M., Morton, R. A., Vogt, J., Benton, K., Chen, Y., … Harkema, S. J. (2018). Recovery of Over-Ground Walking after Chronic Motor Complete Spinal Cord Injury. New England Journal of Medicine, 379(13), 1244–1250. Retrieved from

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

Wagner, F. B., Mignardot, J.-B., Le Goff-Mignardot, C. G., Demesmaeker, R., Komi, S., Capogrosso, M., … Courtine, G. (2018). Targeted neurotechnology restores walking in humans with spinal cord injury. Nature, 563(7729), 65–71. Retrieved from

Angeli, C. A., Edgerton, V. R., Gerasimenko, Y. P., & Harkema, S. J. (2014). Altering spinal cord excitability enables voluntary movements after chronic complete paralysis in humans. Brain, 137(Pt 5), 1394–1409. Retrieved from

Carhart, M. R., He, J., Herman, R., D’Luzansky, S., & Willis, W. T. (2004). Epidural spinal-cord stimulation facilitates recovery of functional walking following incomplete spinal-cord injury. IEEE Transactions on Neural Systems & Rehabilitation Engineering, 12(1), 32–42. Retrieved from

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

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

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

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

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

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


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

Breastfeeding Following Spinal Cord Injury: Consumer Guide for Mothers

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Contributors: Breastfeeding Consumer Guide for Mothers Panel | Published: 11 January 2022 | Updated: ~

Few resources exist that talk about the effects a spinal cord injury (SCI) can have on breastfeeding. It is difficult to find information about the unique questions, challenges, or concerns women with SCI experience when planning or trying to breastfeed.

Our team, which includes women with SCI, health care providers, and SCI researchers, came together to create a guide to help address this information gap.

The purpose of this guide is to share with you the most common issues women with SCI experience during breastfeeding. This guide also provides information, practical suggestions, recommendations, and key resources.

General information about breastfeeding is available on the internet, in books, or from your friends and health care providers. We did not plan to repeat or replace general breastfeeding information or medical advice. Rather, we hope this guide adds to this information by sharing facts, tips, and resources specifically related to breastfeeding after SCI.

Breastfeeding in women with SCI is complex and requires a team of health care providers with complementary expertise. Such a team can include: your family physician, obstetrician, physiatrist, neurologist, occupational therapist, physical therapist, lactation consultant, midwife, psychologist, peer counsellor etc. Your team will vary depending on where you live.

We hope that you find this guide helpful.

Key Points

  • Breastfeeding has many benefits for babies’ physical, developmental, and emotional health regardless of whether the breastfeeding mother has SCI or not.
  • Some women with SCI may experience unique challenges and barriers that can impact how they breastfeed or if they can continue to breastfeed. This can sometimes result in women with SCI feeling alone, lost, or as if they have failed.
  • It is important for every woman to feel supported as she explores how best to balance her own unique needs and abilities with the known benefits and risks of the various ways to feed her child (breastfeeding, supplementing, and/or formula feeding).

It is accepted that breast milk (colostrum, transitional milk and mature milk) is the first choice to help your baby grow and develop. The benefits for your baby include:

  • Providing the ideal nutrition (breast milk has the perfect amount of protein, carbohydrates, fat, vitamins, and minerals, and is easy to digest),
  • Providing antibodies to protect against illness while baby’s immune system develops,
  • Lowering the likelihood of obesity, diabetes, and other diseases developing in childhood,
  • Lowering infant mortality.

The benefits for mothers include:

  • Increasing bonding and relaxation,
  • Reducing costs,
  • Having the convenience of breastmilk available,
  • Lowering the risk of future breast and ovarian cancers.

If breastfeeding is not possible or not enough breast milk is produced by mothers with SCI, then feeding with formula or donated breast milk from a milk bank is both necessary and encouraged.

Refer to the Public Health Agency of Canada’s 10 Great Reasons to Breastfeed Your Baby and the World Health Organization Infant and Young Child Feeding chapter for more information.

Women with SCI, just like women without SCI, are encouraged to give breastfeeding a try. By trying, you can then see how it works for both you and for your baby. If breastfeeding does not work well, there are several safe and healthy options available to you to ensure both your needs and your baby’s needs are met.

Many of the main questions and concerns women with SCI have shared with us are outlined in this guide. The information, recommendations, and resources below are intended to help you to gather information, to help guide your breastfeeding planning, to help you to problem solve common challenges or to help you to explore new ways of doing things as you work to find a feeding plan that is the right fit for you and your baby.


  • You are encouraged to try to breastfeed and see how it goes for you and your baby.
  • If you have challenges or questions about breastfeeding talk to your health care providers. You may wish to share with them a copy of this resource guide to discuss together.

Everyone is different and it is not possible to predict your ability to produce breast milk and breastfeed your baby. Some challenges during breastfeeding are similar between women with and without SCI. However, it is important to recognize that mothers with SCI face additional concerns during breastfeeding related to SCI.

Depending on their level of injury, women with SCI could have limited milk production, difficulties with positioning and latching their baby, and they may experience episodes of autonomic dysreflexia (AD), an abrupt and often dangerous spike in blood pressure.

Research shows that the higher and more complete the injury, the more likely difficulties will occur. Yet, with the right supports in place, you can define what successful breastfeeding means to you.

Watch SCIRE’s YouTube Video explaining common complications of breastfeeding with a spinal cord injury!


  • Talk to your health care providers, including a lactation consultant and a physiatrist for more information on how your SCI may be impeding breastfeeding.
  • Review this guide and references for additional information.

Figure 1. The innervation (control) of the breast by somatic (voluntary) and autonomic (involuntary) nervous systems. The black lines show the autonomic nerves (T1-T5 spinal cord levels) innervating breast tissues and blood vessels. The blue lines show the cervical (C) and thoracic (T) segments of the spinal cord that affect sensory control of the breast and nipple area. Milk production is a result of the coordinated functioning of the somatic and autonomic nervous systems.

The ability to breastfeed could be affected by the level and completeness of your SCI.

First, if your injury is above the first thoracic (T1) spinal cord level the motor functions in your arms/hands could be affected and you could have trouble with positioning and holding your child during breastfeeding. Typically, women with tetraplegia (cervical spinal cord injuries) experience these difficulties (see section on positioning and aids below).

Second, if your injury is above the fifth thoracic (T5 spinal) cord level, this could result in decreased or loss of sensory control of area of the nipple/breast area and affect milk production. These levels of injuries could result also in decrease or loss of body responses that occur during breastfeeding that are important for milk production (physiological reflexes known as “let down reflex”) (See Figure 1)




Discuss your level of SCI and potential for breastfeeding with medical professionals (such as a physiatrist) and support team before planning a pregnancy or before delivery.

Like all mothers, women with SCI may experience common breastfeeding challenges such as:

  • babies who have difficulty latching/feeding due to issues like prematurity, tongue tie, or jaundice
  • mothers with inverted nipples, infection (clogged ducts, mastitis) or an overabundance of milk

There are also additional considerations specific to SCI that can cause some challenges in latching such as sensory changes, motor effects, and fatigue.

Be aware that sensory changes in your body caused by SCI could affect your ability to breastfeed. If you have decreased nipple sensation, it may lead to altered let-down reflex and impaired milk production as well as limit the ability to recognize poor latch. Visual signs during latching, feeding, and immediately after the feeding can help mothers identify a good latch. Use a mirror or have someone check the latch during the feeding and the breast for abrasions after feeding. During feeding, you should notice that your baby is changing the rate of sucking and appears to be swallowing.  After feeding, you should check the condition of your nipples and if your baby appears to be satisfied.

Be aware that strength and ability to move your upper extremities could impact your ability to breastfeed.   Lack of mobility in your arms/hands, spasms, and impaired trunk strength or balance can affect how well the baby is positioned to access the breast, to get and keep a good latch that does not injure your nipples, and to reposition when needed. If you have poor hand function it may be difficult to express your milk for drainage to prevent infection (clogged ducts and mastitis).  Ineffective or infrequent feeding can also be a cause of inadequate milk production. See positioning and aids section below for ideas during breastfeeding.

Be aware that fatigue is common in people with SCI and could impact your ability to breastfeed successfully.  Having a new baby is intense and requires around the clock attention and care for everyone. For some mothers with SCI, your own requirements for care may conflict with or delay the feeding times of your baby. You may want to create a feeding plan with support from your spouse, partner, family, or aide to assist in the feeding schedule. Make sure you continue to assess the latching, feeding, and breast health for as long as you decide to breastfeed. Remember that there is education and support out there for you if you need it. See section below on community supports.


  • Pay attention to your baby’s quality of latching and swallowing during breastfeeding, particularly if you have decreased sensation in your nipples and breast area.
  • Examine your nipples (either on your own or ask a care provider to assist you) before and after breastfeeding to look for nipple distortion.
  • Consult with your health care team if you are having a hard time positioning your baby to breastfeed. They may be able to assist or can refer you to a knowledgeable health care provider such as an occupational therapist or physiotherapist to help you explore assistive aids.
  • If you are experiencing fatigue that interferes with your activities and breastfeeding, ask for the support of health care provider (e.g., occupational therapist) for suggestions and energy saving recommendations.

Refer to the Toronto Public Health Division and the Toronto East Health Network, Baby Friendly Initiative Strategy for Ontario: Breastfeeding Protocol: Positioning and Latching for more information.

There are many things to consider in choosing a position for breastfeeding and skin-to-skin contact with baby. Your level of injury, fatigue, spasticity, hand function, trunk stability, and time of day can influence if you choose to be in bed, in your wheelchair, or in a different chair to breastfeed. It may also be necessary to have someone else pick up your baby and position them for feeding. The figure below shows the most used positions during breastfeeding by women with SCI.

Figure 2. Alternative breastfeeding positions that may be adapted for women with SCI.


  • If you are having difficulties with positioning your baby during breastfeeding ask for the support from your health care providers (e.g., occupational therapists, physical therapists).
  • Wheelchair modifications may be required to provide additional trunk support to increase stability while lifting and holding your baby. Adjusting the seat slope or backrest angle can change centre of gravity and improve stability. A backrest with deeper lateral trunk support or the use of a chest strap may also add stability. Changing the position of sideguards or widening the chair can allow for more room for baby’s body and legs when held in football or cross cradle positions.
  • Wedges can provide support for sitting upright in a bed (providing support for the back, belly or the infant after birth), or be used as leg support to reduce spasms and improve blood pressure.
  • Carriers (harnesses, wraps, ring slings) can be used during breastfeeding and thereafter. They may be useful in positioning your baby when bottle-feeding or using a supplementary nursing system and can help to keep them upright after a feed to reduce spit-up/reflux.
  • Breastfeeding pillows are available in a variety of shapes, weights and stiffness (firm versus lighter and more flexible). Some mothers find that their own regular pillows work well if the breastfeeding pillows do not provide enough support.

Adding a long waist strap to a breastfeeding pillow or infant carrier that also wraps around the wheelchair backrest, can give added security, and reduce the tendency for the pillow to slide forward or for you to lean forward while holding the weight of the infant in front.

Watch SCIRE’s video highlighting Nicole’s breastfeeding experience.

Many mothers worry about low breastmilk supply and that their baby will not get enough milk.  If you have low milk supply, there are a few different options you could consider. You may wish to supplement your baby with breast milk (your own or donated), or formula by bottle or by using supplementary nursing system (SNS). This system works by placing one end of a very thin flexible tube into a formula bottle, taping the tube to your breast, and slipping the other end of the tube into the baby’s mouth once they have latched.

Refer to the Sikana Health video covering “How to use a Supplemental Nursing System” for more information.


  • Talk to your health care providers, including lactation consultant and paediatrician about the most safe and effective options for feeding your baby, as well as medications for you and your baby.
  • If you have enough hand function, you can express milk directly into your baby’s mouth. Additionally, a breast pump can be used to express the milk into a bottle and then to feed your baby.
  • If you have low milk supply, you can start by feeding your baby from your breast then switching to a bottle after a specific amount of time or once the milk is gone from the breast.
  • You can feed your baby at the breast with additional formula by using a supplementary nursing system.

Many women experience clogged milk ducts or even lactation mastitis (an inflammation of breast tissue that may or may not involve an infection, but causes breast pain, swelling, warmth, fever, or chills) during their breastfeeding experience. Breast lumps are not uncommon.

Depending on the level of injury and hand function women with SCI could be more likely to experience clogged ducts during breastfeeding. This happens when the breast is not fully emptied of milk at each feeding due to incomplete latching and suckling.

Breast health may also be compromised if the baby is not held well to the breast due to limited hand and arm function or muscle fatigue. Limited hand function may also lead to poor milk expression and limit the ability to perform self-lymphatic drainage and massage, which can contribute to the development of clogged ducts and mastitis.


  • Wear a supportive bra (even at night) but avoid restrictive clothing.
  • Change damp or soiled breast pads often.
  • Shower daily and wash nipples with clear water only (no soap).
  • Eat a healthy diet and stay well hydrated.
  • Use gentle breast massage (If hand function is limited, a massaging device could be used, or assistance requested from partner or caregiver).
  • Alternate use of hot and cold compresses may be helpful if your breasts are engorged.
  • If you have mastitis, check with your health care provider how you can safely continue to breastfeed your baby.
  • Be aware that pain from breastfeeding and mastitis could cause AD.

Refer to the Penn Medicine article on General Breast Health as well as the Cleveland Clinic article on Care for Mastitis for more information!

The common medications used in women with SCI could go through the blood milk barrier into the milk, and many effects of medication on breastfeeding babies are not known. Speak with your health care team as each drug will need to be assessed of its risks compared to its benefits for you and for your baby.

The American Pediatric Association has suggested some medication tips around breastfeeding for all women, which we have quoted below:

Breastfeeding and Medication Tips

  • Many effects of medications on breastfeeding babies simply are not known. Due to this, only take a medication when absolutely needed, at the lowest dose, and for the shortest time possible.
  • When possible, take medications that are given only once a day right after a feeding when your baby will have the longest period without nursing; for many women this is the last feeding of the night before the baby’s bedtime.
  • Watch your baby for side effects such as sleepiness, irritability, other potential or known reactions of the medication.
  • Avoid long-acting, extended-release, and combination forms of medications when possible. Shorter-acting medications are removed from your body more quickly, and single medications give you greater flexibility in dosing.
  • Only water-soluble cream or gel products should be applied to the breast because ointments may expose the baby to high levels of mineral paraffins via licking.
  • Special precautions may be needed in preterm (premature) babies, due to their size and organ systems that are even less developed than a regular term baby.
  • Ask your doctor about the risks and benefits of any medication prescribed while you are breastfeeding, or any medication you choose from over-the-counter options that do not require a prescription.
  • When more than one medication or a combination medication is used, follow the breastfeeding recommendations for the most problematic medication.


Consult your health care team for advice about what medications to use, adjust, or discontinue while breastfeeding.

Refer to LactMed, a database containing information on drugs and other chemicals which breastfeeding mothers may be exposed to, as well as for information on safe medications during breastfeeding.

AD is identified by uncontrolled and potentially life-threatening spikes in arterial blood pressure, which may reach as high as 300 mmHg systolic blood pressure. It is common for people with SCI at or above the T6 spinal cord segment to experience episodes of AD that can be caused by painful or non-painful stimuli below the injury level. Episodes of AD have been documented in several studies of breastfeeding by women with higher level injuries. In women with SCI at or above the fourth thoracic segment (T4, level of sensory innervation of nipples),
episodes of AD could be specifically triggered by stimuli from the nipples/breast area during breastfeeding. You should be aware that an episode of AD could be accompanied by severe headaches, sweating, and heart palpitations or you could experience AD without any symptoms at all.

Breastfeeding-related AD may be caused by breastfeeding itself as well as mastitis, nipple fissures or other painful processes originating from the breast. Episodes of AD caused by breastfeeding may be much more common than we know. Recent research shows that one quarter of women with SCI experience AD while breastfeeding, and this number is higher in women with high level SCI (almost 40%).
Frequent and uncontrolled episodes of AD could result not only in discomfort, but also significant negative health consequences, including damage to blood vessels and heart, stroke, seizures, and even death. It is vital to prevent and manage AD in a timely manner. Unfortunately, this topic is not commonly discussed in postpartum care, but it is vital to recognize and address.


  • Be sure to discuss with your medical practitioner (physiatrist/ family physician/nurse) your blood pressure management and potential for development of AD.
  • Be aware that women with SCI at or above T6 are at higher risk for the development of AD triggered by breastfeeding, clogged ducts/mastitis.
  • If you experience symptoms of AD, you should stop breastfeeding and measure your blood pressure if you can. Be sure that you are in seated position with your legs lowered. Wait until symptoms subside and your blood pressure goes down close to normal before you resume breastfeeding.
  • Be aware that prolong seating while breastfeeding may cause a decrease in your blood pressure (orthostatic hypotension), that could result in light-headedness and dizziness. If this will occur, elevate your legs, or change your position to horizontal.

  • Have a wallet information card on AD in case of admission to an emergency room.
  • Refer to the ABC’s of Autonomic Dysreflexia and the Fact Sheet on AD by Spinal Cord Model System for more information.

    To download a Automatic Dysreflexia wallet card, click here.

Bonding, or what is often called ‘attachment’ or the ‘caring connection’ between a child and parent, is an important part of a child’s physical and emotional development. Some parents report immediately feeling a strong connection with their child during pregnancy or soon after the birth. Other parents report they did not feel an instant connection. Both feelings are okay and normal.
Bonding and attachment can sometimes happen right away and can sometimes take weeks or months of getting to know and understand your baby to find what works best for you and your child and each of your unique needs.
Breastfeeding is not the only way to nurture or bond with your child. There are many other important ways to build connection and attachment between you and your baby.


  • Find times to hold your baby against your bare skin. There are many positive benefits including body temperature regulation, breathing and heart rate regulation, hormone release for both you and the child, calming, and improved sleep.
  • Cuddle with your child. Ensure you have the chance to hold, rock, or carry your child during times that are not only related to feeding, bathing, diaper changes or consoling. Sometimes those quiet moments are really important moments of connection and affection.
  • Respond to your baby when they cry. This may be by gently touching their skin, picking them up or by using your voice. Let your baby know you are nearby and aware of their needs.
  • Talk to your baby throughout the day. It might feel awkward at first but tell stories, describe people and the world around them, talk about what you are doing, or sing to your child.
  • Look into your newborn’s eyes while you feed or care for your child. This helps your newborn to connect your face with your sounds and actions.
  • Find ways to soothe yourself as well as your child. Take a few deep breaths. Listen to music you enjoy. Visit with friends you feel comfortable with. Look at a picture of a place where you like to spend time. Babies pick up on adults’ feelings of tension and anxiety but also soak up their feelings of calm and comfort.

Why am I feeling so sad or anxious?
The first few weeks after birth are exciting and challenging. It is a time of big changes as you bring your infant home, get to know them, learn how to feed, bathe, and carry them. You also need to adjust to disrupted sleep patterns, manage your physical recovery after the birth, and try to find time for your own daily living and self-care needs (such as eating, dressing, toileting, bathing, etc.). Breastfeeding when you have a SCI can sometimes make some, or all, of these
activities feel more challenging.

You may feel joy and excitement, but also feel sad, worried, or just be overwhelmed. This is understandable in the first few weeks after birth for any mother. This roller coaster of emotions is sometimes called “baby blues” and typically lasts a few days or up to a week or two. However, if the difficult feelings last longer and begin to impact your ability to participate in day-to-day activities, this can be a sign of what is called Postpartum Depression. Postpartum Depression can involve feeling sad, down, or crying easily but it can also sometimes feel like being worried, agitated, anxious, or an overwhelming fear that something awful is about to happen. Women with SCI are at higher risk for Postpartum Depression and anxiety due to several factors including:

  • Mental health concerns prior to pregnancy,
  • The stress of coping with multiple physical challenges during pregnancy and/or after the birth,
  • Worry about other peoples’ opinions or judgments,
  • Struggling with pre-existing fatigue related to SCI and the extra energy required to complete routine tasks as well as new onset fatigue due to baby caregiving needs,
  • Limited access to knowledgeable caregivers or peers who understand the unique joys and challenges of parenting with a SCI,
  • Possible other factors we do not yet know or understand.
    Whatever you are feeling, you are not alone. You are important and valued. Help is available. Talk to your partner, loved ones, or health care providers about your feelings and worries. If needed, immediate help is available 24/7 from local crisis phone lines, Urgent Care Centres or Emergency Departments. With support, many women soon begin to feel their mood improve, their anxiety lessen, feel more attached to their baby, and begin to experience many more positive moments of parenting as they learn tools to help cope with the hard times.


  • Learn about the signs, symptoms, and resources related to postpartum depression and anxiety, so you, your partner, your family, and your care aides will recognize when extra assistance may be necessary.
  • Talk to your health care providers, seek out information from trusted websites online or connect with local community groups that support new parents.
  • Share this information with your partner, a friend or a family member, or a health care provider during your pregnancy or after baby has arrived. Sometimes we need a bit of help to reach out for the services we need when we are feeling sad or anxious.
  • Watch your mood during pregnancy and after birth and notice any changes in feelings of sadness or worry. Are these feelings improving or getting worse? Are they lasting longer than they did in the past?
  • Know that feelings of sadness or anxiety happen to lots of people. You are not a failure and you are not alone.
  • Help is available 24/7. Accessing help can relieve pressure and often make a big difference in how you are feeling.

There are plenty of books on pregnancy, birth, and all the challenges with motherhood, but there is much less information for pregnant women and new mothers that have a SCI. Just like experiencing and learning about changes to your body during pregnancy, it is important to educate and advocate for yourself about being a mother and breastfeeding with a SCI.


  • Look to your healthcare team: Your healthcare team involved in your pregnancy and birth is your primary trusted resource. Physiatrists have the medical knowledge to address concerns related to your SCI. Lactation consultants, midwives and staff of public health agencies have knowledge about pregnancy, birth and breastfeeding. These professionals, working together with you can address your specific concerns.
  • Look online for resources: In addition to information provided in this guide and if you don’t have services locally, look for reputable and accredited sources. Check your local or national Spinal Cord Injury organizations. There are many dedicated websites in the medical community. Do an online internet search with some key words like “mom SCI and breastfeeding”. Online videos, articles and peers’ stories provide opportunities for learning and connections among a growing population of moms with a SCI all around the world.
  • Connect with other moms: Peer support is important for all new moms, including moms with SCI. Social media platforms like Facebook have many groups you could join and are a popular place to share questions and concerns and learn about equipment or adaptations ideas.
  • Stay connected: We also know there is a risk of isolation. Currently, there is no way to fully prevent depression or anxiety postpartum but knowing what signs to watch for can be helpful. It’s important to stay connected and not isolated. First, you’re a new mom and that means you share a lot of the same emotions, concerns, and challenges as every new mother. Reach out to other moms in your community or online for advice, support and joint activities, especially nature and outdoor; there are more things in common with able-bodied moms once issues around your SCI are addressed.

Image credits

  1. Smiling Mother Playing With Her Baby Lying On The Floor ©Jacob Lund Photography from
  2. Newborn Being Breast-fed At Home ©Paulo Sousa from
  3. Complications ©The SCIRE Community Team
  4. Kristen’s breastfeeding story ©The SCIRE Community Team
  5. Breastfeeding innervation © The Krassioukov Lab
  6. Sheryl’s breastfeeding story ©The SCIRE Community Team
  7. Breastfeeding Lying down ©The SCIRE Community Team
  8. Breastfeeding positions © The Krassioukov Lab
  9. Assistive Aids ©The SCIRE Community Team
  10. Nicole’s breastfeeding story ©The SCIRE Community Team
  11. Woman Bottle Feeds A Newborn ©Paulo Sousa from
  12. Medication © Kiran Shastry from Noun Project
  13. Close Up Of Smiling Mother And Baby Daughter ©Noun Project from
  14. Mother Taking Rest Sleeping On A Couch With Her Baby On Her Chest ©Jacob Lund Photography from

Panel Members

Andrei Krassioukov, MD, PhD, FRCPC
GF Strong Rehabilitation Centre
Professor of Medicine
Division of Physical Medicine & Rehabilitation
University of British Columbia
Vancouver, British Columbia, Canada

Stacy Elliott, MD
Sexual Medicine Physician
Clinical Professor
Departments of Psychiatry and Urologic Sciences
University of British Columbia
Vancouver, British Columbia, Canada

Shea Hocaloski, RN, BTechN
Sexual Health Clinician
GF Strong Rehabilitation Centre
Vancouver, British Columbia, Canada

Olga Krassioukov-Enns, MD
Independent Living Consultant
Principal Researcher, “Axioms of Inclusion”
Winnipeg, Manitoba, Canada

Karen Hodge, MSW, RCSW
Clinical Social Worker, Mother with SCI
Sunny Hill Health Centre/
Adaptability Counselling and Consultation
Vancouver, British Columbia, Canada

Stephanie Gillespie, RN, IBCLC
Lactation Consultant
BC Women’s Hospital
Vancouver, British Columbia, Canada

Sherry Caves
Consumer Consultant
Vancouver, British Columbia, Canada

Teri Thorson
Consumer Consultant
Vancouver, British Columbia, Canada

Marina Green, RN, MSN, IBCLC
Lactation Consultant
BC Children’s and Women’s Health Centre
Vancouver, British Columbia, Canada

Lindsay Alford, BSc OT
Occupational Therapist
GF Strong Rehabilitation Centre
Vancouver, British Columbia, Canada

Melanie Basso, RN MSN PNC(C)
Senior Practice Leader Perinatal at BC Women’s
Vancouver, British Columbia, Canada

Laura McCracken, MSc
Clinical Research Coordinator
International Collaboration on Repair Discoveries
The University of British Columbia
Vancouver, British Columbia, Canada

International Contributors

Kim Anderson, MD
Northeast Ohio Regional SCI Model System, MetroHealth Rehabilitation Institute Professor Department of Physical Medicine and Rehabilitation, MetroHealth Medical Center and Case Western Reserve University School of Medicine, Cleveland, United States

Elena Andretta, MD
Urologist – highly specialized in neuro-urology and bladder dysfunctions
Department of Urology, Dolo Hospital, Venice, Italy

Harvinder Singh Chhabra, MD
Chief of Spine Service & Medical Director
Indian Spinal Injuries Centre, New Delhi, India

Claes Hultling, MD, PhD
Associate Professor, Karolinska Institutet
CEO, Spinalis Foundation, Stockholm, Sweden

Christina-Anastasia Rapidi, MD, PhD
Head of Physical & Rehabilitation Medicine Department
General Hospital “G.Gennimatas”, Athens, Greece

Fin-Biering Sørensen, MD
Clinical Professor, University of Copenhagen Senior consultant, Clinic for Spinal Cord Injuries, Rigshospitalet, Denmark

Ineta Zobina, MD
Specialty doctor in spinal rehabilitation, Welsh Spinal Cord Injury Rehabilitation Centre (WSCIRC), Cardiff, United Kingdom

Francois Theron, MD
Medical Director, Muelmed Rehabilitation Centre: Orthopedic surgeon and lecturer, Department of Orthopedic Surgery, University of Pretoria, Pretoria, South Africa

International Reviewers

Allison Kessler, MD, MSc
Assistant Professor Department of PM&R Northwestern University Feinberg School of Medicine and Section Chief, Renée Crown Center for Spinal Cord Innovation, Chicago, IL, USA

Frederique Courtois PhD
Professor, Department of Sexology, Universite du Québec à Montréal, Montreal, QC, Canada

Maryam Berri, MD
Clinical Assistant Professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan Medical School, Ann Arbor, MI, USA

This work was supported by the Craig Neilson Foundation Creating Opportunity and Independence Grant through “Breastfeeding and Spinal Cord Injury: Establishing Guidelines for Health professionals and Consumers” project lead by Dr. Andrei Krassioukov, ICORD, UBC.

We also would like to recognize the expertise and assistance of the panel members, reviewers, project participants and staff, whose contribution was integral to the development of this document.


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.