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Spinal Cord Injury Education

I have been living successfully with a disability for 20+ years. I have been an occupational therapist and worked with hundreds of people with disabilities to make them more independent and increase their quality of life. These are the things that I think are very important to know when you have a spinal cord injury. I apologize, there is a lot of information (and the beginning is boring, so jump around if you need to), but I promise I wouldn't include it if I didn't think it was important and helpful.

BASICS

Autonomic Dysreflexia

Autonomic Dysreflexia (AD) is a life-threatening medical emergency that occurs in individuals with spinal cord injuries at or above T6. It is caused by an overreaction of the autonomic nervous system to a stimulus below the level of injury, leading to dangerously high blood pressure. If you have symptoms, try to identify the cause right away and address immediately.

 

An alarming number of healthcare professionals are NOT aware of AD. You need to be able to explain it to them!

 

Causes & Triggers of AD: Harmful or painful stimuli below the level of injury

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1. Bladder Issues (Most Common):

  • Overfilled bladder due to missed catheterization,

  • Blocked catheter preventing urine flow,

  • Urinary tract infection (UTI) or bladder stones

2. Bowel Problems

  • Constipation or impacted stool

  • Overfilled bowel due to delayed bowel program

  • Hemorrhoids or anal fissures

3. Skin Irritation & Pressure Injuries

  • Pressure sores or skin breakdown

  • Tight clothing or restrictive braces

  • Burns, cuts, or ingrown toenails

4. Other Triggers

  • Sexual activity (especially ejaculation)

  • Menstrual cramps

  • Broken bones or fractures

  • Extreme temperatures (hot or cold)

 

Signs & Symptoms of AD: can develop rapidly and require immediate action.

 

Mild to Moderate Symptoms

  • Sudden high blood pressure (often 20-40 mmHg above baseline)

  • Pounding headache

  • Flushed or red skin above injury level

  • Sweating above injury level

  • Goosebumps below injury level

Severe Symptoms (Medical Emergency)

  • Blurred vision or vision changes

  • Nausea or dizziness

  • Slow heart rate (bradycardia)

  • Chest pain or difficulty breathing

  • Loss of consciousness

 

AD is Dangerous! If left untreated, AD can lead to severe complications, including stroke, heart attack, seizures and death.

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Immediate Treatment for AD: act quickly to prevent complications (stroke or heart attack)

 

1: Sit Up Immediately

  • Raise the head of the bed or sit upright to lower blood pressure.

  • Keep legs uncrossed to improve circulation.

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2: Identify & Remove the Trigger

  • Check the bladder – Catheterize immediately if full.

  • Check the bowel – Perform digital stimulation if impacted.

  • Check the skin – Remove tight clothing or inspect for injuries.

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3: Monitor Blood Pressure

  • Take blood pressure every 5 minutes.

  • If above 150 mmHg, seek emergency medical help.

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4: Seek Medical Help if Symptoms Persist

  • Call 911 if blood pressure remains dangerously high.

  • Use prescribed medications (e.g., nifedipine or nitroglycerin) if advised by a doctor.

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Preventing Autonomic Dysreflexia

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1. Bladder Management

  • Perform catheterization on schedule to prevent overfilling.

  • Use sterile techniques to reduce UTI risk.

  • Monitor for bladder stones with regular checkups.

2. Bowel Care

  • Follow a consistent bowel program to prevent constipation.

  • Eat fiber-rich foods and stay hydrated

  • Use stool softeners if needed

3. Skin Protection

  • Inspect skin daily for pressure sores or injuries.

  • Use pressure-relieving cushions in wheelchairs.

  • Avoid tight clothing or restrictive braces.

4. Lifestyle Adjustments

  • Manage stress to prevent blood pressure spikes.

  • Avoid extreme temperatures (hot baths, cold weather).

  • Educate caregivers & family on AD symptoms and emergency response.

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Emergency Action Plan

  • Educate caregivers, family and healthcare professionals on AD symptoms/response.

  • Keep a blood pressure monitor nearby for quick checks.

  • Wear a medical alert bracelet indicating risk of AD.

Sensation and Movement

It is VERY IMPORTANT to understand that different SCIs respond differently to rehabilitation. Someone can work as hard as possible, just as hard as someone who gets movement back, but movement and sensation may never return. 

  • If you get movement back, remember this when trying to motivate others. Your recovery did have something to do with your hard work, but luck and the severity of your injury also played a key role. Telling others to work hard is important, but saying that working hard will lead to returning movements or walking is not true for many people with SCI. Suggesting that working hard always leads to walking after a SCI is unfortunately ignorant and ableist. 

 

Neuroplasticity is the brain and nervous system’s ability to adapt, change and reorganize in response to injury, learning or experience. This happens when nerve cells form new connections, strengthen existing pathways, and reroute signals when damaged areas no longer function like before. The more a person practices a skill or movement, the more the nervous system may “rewire” itself to make that function stronger. Neuroplasticity can happen at different rates depending on your injury. One person may experience neuroplasticity while others may not experience any returning movements or sensations. 

 

The amount of sensation, movement, and spasticity a person experiences after a spinal cord injury depends on several factors: 

  • The level of the spinal cord that was injured - cervical, thoracic, lumbar, or sacral. My injury occurred at C7/T1, right between the last cervical vertebra and the first thoracic vertebra. This results in me having no movement and limited sensation below my chest. I have no trunk control or leg movement. 

  • Whether the spinal cord was completely severed or not. If the cord wasn’t fully severed, the extent of damage, whether more pronounced on the right or left side, can impact recovery and function. In incomplete injuries, nerve pathways may retain some ability to transmit signals, leading to varying degrees of increased sensation or movement. I have an incomplete injury because I can feel below my injury level. It isn’t a normal sensation; I can only feel touch (not hot, cold, or pain), but it still classifies me as an incomplete SCI. 

  • Other injuries or complications sustained, including damage to surrounding muscles, bones, or nerves. 

  • Secondary conditions, such as spasticity, autonomic dysreflexia, or neuropathic pain, can all affect daily life and require tailored management strategies. 

  • Therapy - Physical therapy, occupational therapy, mobility aids, and adaptive technologies can all help maximize sensation, movement, and independence and decrease spasticity. However, the body’s ability to generate new neural connections (neuroplasticity) and the effectiveness of rehabilitation techniques can vary from person to person. 

 

Spinal Cord Injury Levels, Movements, Sensory Levels and Functional Outcomes 

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Sensory Dermatome Map - each area corresponds with the labeled spinal cord level

How to increase sensation after SCI 

  • Maximize Blood Flow to the Area – Movement or stretching of nearby joints can improve circulation, which may enhance nerve activity and support recovery. 

  • Stimulate Sensation with Different Textures – Exposure to diverse textures (rough, soft, warm, cool) helps engage sensory receptors and encourage neural response. 

  • Mental Focus on Sensation – Close your eyes and concentrate on what you feel. Do you feel tingling, pressure, faint touch or something else. Neuroplasticity suggests that focused attention may help strengthen the brain’s recognition of sensory input. 

  • Use Sensory Re-education Techniques – Repeated exposure to sensations may help the nervous system adapt and improve response over time. 

  • Electrical Stimulation Therapy – Treatments like Functional Electrical Stimulation (FES) may activate nerves and potentially improve sensory awareness. 

  • Massage & Gentle Pressure – Controlled massage can increase circulation, stimulate nerve endings, and help retrain sensory connections. 

  • Visualization & Neurological Training – Some people practice mental visualization exercises to reinforce sensory awareness and aid recovery. 

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How to Increase Movement After a Spinal Cord Injury (SCI) 

  1. Stretch Joints Regularly

    • Stretching helps reduce muscle tightness, spasticity, and tone, keeping joints mobile. 

    • It also improves blood flow, which is important for nerve function and sensation. 

  2. Mental Engagement During Stretching (for areas with no movement) 

    • Focus hard on the specific area of the stretch feeling or the body part being stretched. Try to squeeze the area being stretched and push the body part out of the stretch, even if no actual movement happens. 

    • This technique, used in neuromuscular reeducation therapy, may help the brain identify and reconnect with affected muscles. 

    • The stretch itself stimulates proprioceptors, sensory receptors that help your brain locate the muscle responsible for movement. 

  3. Maximize Active Movement (for areas with some movement) 

    • Move the area in all directions to maintain flexibility and reinforce neural pathways. 

    • Perform movements as frequently as possible to strengthen existing connections between the brain and muscles. 

    • Once you can complete 20 repetitions without compensating (no twisting, leaning, or using other body parts), you may be ready to add light resistance to build strength. 

  4. Other Strategies that may be beneficial

    • Mental or physical practice and repetition! 

    • E-stim while thinking about the specific movement being stimulated. 

    • Mirror Therapy 

    • Functional Electrical Stimulation 

 

Complete vs Incomplete Injuries 

  • Complete: the spinal cord was completely cut so no nerve impulse can get through. No movement or sensation below injury level. 

  • Incomplete: the spinal cord was not fully cut so some nerve impulses can get through resulting in some level of sensation and/or movement below the level of injury. 

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ASIA Scores – classifies SCIs by sensation, movement and whether they are preserved below injury level. 

  • A – Complete: No feeling or movement below injury level 

  • B – Incomplete (Sensory Only): Some feeling is preserved below injury level, including around anus, No movement below level of injury 

  • C – Incomplete (Some Motor): Some motor movement is preserved below injury level but muscles that work are weak (less than 3 on a 0-5 MMT scale), meaning they cannot move against gravity, sensation below injury level may or may not be present. 

  • D – Incomplete (More Motor): Strong movements below inury level (more than half of key muscles score a 3 or higher) and can move against gravity. Sensation below level of injury may or may not be present 

  • E – Normal: Sensation and movements are normal 

 

Why are ASIA Scores and Complete/Incomplete Important? 

  • They help medical professionals set goals, track progress and communicate clearly about the severity of your injury. They are used in rehab settings, research and insurance cases. 

  • In my opinion, THEY DONT MATTER and are often misdiagnosed because they are done too soon in the recovery process. You need to worry about your sensation and movement, not how someone else classifies them. Do not get hung up on Asia scores and complete vs incomplete, instead just do everything in your ability to become as independent as possible and get back any sensation and movement that you can. If you are trying to get into some trial and you can’t because of your ASIA score, that sucks, but it wasn’t meant to be. 

Spasticity

Spasticity is a common condition following a spinal cord injury (SCI), characterized by involuntary muscle stiffness, spasms, and exaggerated reflexes.

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Spasticity can occur after a spinal cord injury due to communication disruptions between the brain and spinal cord. Normally, the brain regulates muscle tone and movement by sending signals through the spinal cord. When the spinal cord is injured, the signals can no longer travel properly, leading to overactive reflexes and involuntary muscle contractions. Spasticity can be mild or severe, affecting mobility and comfort. While it can be frustrating, some individuals find that controlled spasticity helps maintain muscle mass and circulation.

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Causes of Spasticity in SCI

  • Loss of Control Over Reflexes – The brain controls reflex activity, preventing excessive muscle contractions. After an SCI, this control is lost, causing overactive reflexes and spastic movements.

  • Miscommunication Between Nerves – Sensory nerves send signals to the spinal cord, but without regulation from the brain, these signals trigger muscle spasms.

  • Changes in Muscle Structure—SCI can lead to muscle stiffness and changes in muscle fibers, which can contribute to spasticity.

  • Triggers That Worsen Spasticity – Common triggers include joint movement, stretching, skin irritation, pressure sores, urinary tract infections, constipation, tight clothing, and extreme temperatures.

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Managing Spasticity after SCI

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1. Medications - Medications help regulate nerve signals that cause muscle tightness and spasms. Common options include:

  • Baclofen (oral or intrathecal pump): Helps reduce muscle tone and spasms.

  • Tizanidine: Works by relaxing muscles and reducing reflex activity.

  • Diazepam or other benzodiazepines: Used for severe spasticity, but may cause drowsiness.

  • Botulinum toxin (Botox) injections: Target specific muscles to temporarily reduce spasticity (for approx. 3 – 6 months then another injection will need to be scheduled)

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2. Weight-Bearing Activities - Weight-bearing exercises help reduce muscle stiffness and improve functional mobility. Examples include:

  • From Standing: standing frames, parallel bars, standing/walking braces (KAFOs)

    • Standing is recommended for 30 minutes a day, to maintain bone density.

  • Non-standing: tall kneeling (standing on knees), quadruped (knees and hands)

 

3. Stretching - Regular stretching helps maintain flexibility, prevent contractures, and reduce spasms.

  • LEARN HOW TO COMPLETE YOUR STRETCHES INDEPENDENTLY. DO THEM DAILY. HOLD EACH STRETCH FOR AT LEAST 20-30 SECONDS.

  • If you cannot do your stretches independently, find someone to help you stretch.

  • See my stretching handout.

 

4. Surgical Interventions (For Severe Cases) - If these approaches are ineffective or if you don’t do any of these, surgical procedures such as tendon release or selective nerve surgery may be considered.

 

5. Other Things That Can Help With Spasticity

  • Physical & Occupational Therapy - the most important thing you can do in OT and PT to minimize spasticity over your life is learn how to manage it yourself at home. Learn what stretches, range of motion exercises and adaptive equipment/techniques help your spasticity the most and then learn how to do these yourself or, if needed, with assistance.

  • E-Stim and Functional Electrical Stimulation (FES) - This technique uses electrical currents to stimulate paralyzed muscles, promoting movement and reducing spasticity. For some, this helps spasticity; for others, it worsens. OT/PT can also be used to figure out if E-stim is right for you and if you can do it on your own.

 

Most Important Stretches for Paralyzed Individuals

  • Long sitting

  • Prone or Prone on Elbows

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What happens if you don’t stretch?

  • Your joints will get tighter, and your spasticity will get worse. Eventually, the muscles you don’t stretch will contract and lock in a bent or straight position (they will stick in whatever position they are not stretched out of). This will cause increased discomfort and pain, decreased independence and increased risk for pressure sores.

 

PLEASE STRETCH AND STAND (or complete other weight-bearing activities)!

Bone Health

Bone health is a concern after a spinal cord injury (SCI) because bone loss begins immediately and can continue for years. Decreased bone density increases risk of fractures, especially in the lower body. The most severe bone loss occurs in the first 2 years and will continue throughout the lifespan.

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Causes of Decreased Bone Density

  • Lack of Weight-Bearing Activities: Weight-bearing stimulates bone growth. Without these activities, bones weaken.

  • Paralysis Effects: SCI disrupts signals between the brain and bones, reducing bone maintenance.

  • Hormonal Changes: SCI can alter hormone levels, affecting bone metabolism.

  • Medication Side Effects: Some drugs used after SCI, like seizure medications and blood thinners, can worsen bone loss.

  • Muscle Atrophy: Muscles pulling on bones help maintain bone strength. Paralysis reduces this.

 

Ways to Prevent or Slow Bone Loss

  • Weight-Bearing Activities!: Standing frames, standing braces, and getting into tall kneeling or quadruped can help stimulate bone growth. 30 minutes a day!

  • Diet & Supplements: Calcium, Vitamin D3, and Vitamin K2 are essential for bone strength. I take D3 Vitamins.

  • Lifestyle Adjustments: Avoid smoking and excessive alcohol, as they can worsen bone loss.

  • Bone Density Scans: Regular DXA or REMs scans help track bone health and guide treatment.

 

You do not want a broken Femur or Hip. Due to decreased blood circulation in your legs the break will take much longer to heal and may not heal properly. 50% of individuals with SCI experience a fracture within the first 10 years of their injury.

Skin Management

DO PRESSURE RELIEF!

CHECK YOUR BUTT!

​Pressure Management

  • You need to do pressure relief! If you cannot remember to do it, then set reminders on your phone. It is that important! Pressure Ulcers will greatly decrease your quality of life and can kill you if left untreated. If you have a pressure sore that’s stage 2 or more, you need to get it checked by a doctor ASAP!

    • Frequency: every 15-30 minutes in a wheelchair for 30-90 seconds (build that tricep strength!), when lying in bed, shift positions every 2 hours by rolling side to side and on to back. If possible, you can also sleep on your stomach. I would recommend stomach sleeping, if you can. I do most nights.

  • Avoid Shearing & Friction: Be mindful of skin rubbing against surfaces. This can cause abrasions, which can lead to pressure ulcers, or other injuries.

  • If you cannot do adequate pressure relief yourself, by fully pushing your butt off your cushion, you probably need to be sitting on an air cushion. You could also qualify for a power chair with tilt function.

  • If you have a pressure sore on your bottom, you need to be in bed, ON YOUR SIDE, as much as possible! I cannot stress that enough! Unless you have an extensive pressure sore history, you probably don’t need a super expensive mattress (normal mattresses are expensive). If you have a pressure sore, you should not be in your chair for more than a few hours a day, if that. When you are in your chair, you must do pressure relief (even more than you already should). Also, it is best to be sitting on an air cushion (Roho or Star), if you have skin breakdown.

  • I have had a semifirm mattress for years. I loved it and never had any problems with pressure sores. Now my wife and I have a Sleep Number, so she can enjoy her soft side and I can enjoy my firm side.

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Skin Care Routine

  • Daily Skin Checks: Inspect skin once a day, especially pressure-prone areas like tailbone, ITs (butt bone), heels, ankles, wrists, fingers, elbows, and hips.

  • Avoid Excess Moisture: Keep skin dry to prevent breakdown, especially in areas prone to sweating. If you have an accident, don’t sit in it!

  • Gentle Cleansing and Moisturizing: Avoid chemicals that can dry out or irritate the skin. Apply moisturizers to prevent dryness and cracking.

  • As you get older, your skin becomes thinner and drier. These things get increasingly important as you age! However, all this is important regardless of age!

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Pressure Ulcer (Bedsore, Pressure Sore) Stages

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Stage 1: Skin is dark, may feel warm, firm, or tender, and doesn’t turn white when pressed.

  • Treatment:

    • Relieve Pressure: Lie on your side or stomach. Do pressure relief frequently.

    • Skin Care: Keep the skin clean and dry to prevent further damage.

    • Nutrition/Hydration: protein, vitamins and fluids to support skin health.

    • Protective Measures: Figure out what is causing the skin breakdown and fix!

  • Healing Time: A few days to 1 week with proper pressure relief and skin care.

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Stage 2: Skin breaks open, forming a shallow wound or blister.

  • Treatment:

    • Make a doctor's appointment and go! Ask for a Wound Care referral.

    • Wound Care: Clean the wound, apply dressings.

    • Pressure Relief: Lie on your side or stomach until it heals! Only sit in a wheelchair if you must for several hours a day. Use a Roho Cushion if you have one! You need to get this healed as fast as possible!

    • Monitor for pus, swelling, or increased pain, which may indicate infection.

  • Healing Time: 1 to 3 weeks with proper pressure relief & kept clean and protected.

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Stage 3: Ulcer extends deeper into skin, looking crater-like with dead tissue

  • Treatment:

    • You need to see wound care at a hospital. If you don’t already have a referral, call your doctor ASAP and get one.

    • Debridement: A doctor removes dead tissue through medical procedures.

    • Advanced Dressings: use whatever the doctor recommends

    • Infection Control: apply antibiotics if signs of infection are present.

    • Pressure Management: At this point, you need to always be in bed on your stomach and sides. Position yourself so that no pressure is put on the affected area.

  • Healing Time: 1 to 4 months, depending on infection risk and wound care.

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Stage 4: The ulcer reaches muscle, tendons, or bone, increasing the risk of serious infection.

  • Treatment:

    • If you haven’t seen wound care yet and are at this stage, go to the ER now, please!

    • Aggressive Debridement: Doctors remove necrotic tissue surgically.

    • Wound Care: Use advanced wound dressings and negative pressure therapy Infection Treatment: Administer systemic antibiotics if the infection spreads.

    • Surgical Intervention: skin grafts or reconstructive surgery may be necessary

  • Healing Time: 3 months to years, especially if surgery is needed.

 

Other Prevention Strategies

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Nutrition & Hydration

  • Balanced Diet: Eat plenty of protein-rich foods to support skin healing.

  • Vitamins & Minerals: Ensure adequate intake of Vitamin A, B6, C, E, and zinc to maintain skin integrity.

  • Hydration: Drink enough water to keep skin hydrated and prevent dryness.

Circulation & Blood Flow

  • Avoid Smoking: Nicotine constricts blood vessels, reducing oxygen and nutrient flow to the skin.

  • Manage Edema: Elevate legs and hands, perform range-of-motion (ROM) exercises, and use compression stockings or tight long socks.

  • Prevent Anemia: Oxygen is essential for skin health, anemia should be treated promptly.

  • Monitor Vascular Health: Conditions like diabetes, high blood pressure, and high cholesterol can reduce blood flow and increase skin risks.

Temperature & Environmental Awareness

  • Avoid Extreme Temperatures: SCI can affect temperature regulation, so avoid hot surfaces, heaters, and prolonged sun exposure (burn section below).

  • Protect Against Sunburn: Use sunscreen and wear protective clothing when outdoors.

Managing Skin Injuries

  • Early Detection: If redness or irritation appears, relieve pressure immediately and monitor closely.

  • Seek Medical Help: If a wound develops, consult a healthcare provider for proper treatment.

 

Burns

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I have burned myself countless times. I’m not proud of it. I love heat, yet am always cold.

 

Be very careful around fires, heaters and anything that can be hot. When you want to carry something hot, like coffee, soup, oatmeal or anything fresh off the stove, oven or microwave, make sure your legs and private parts are adequately protected (especially if you carry in your lap)! Assume that a spill will happen and take proper precautions. When around heaters, fires or fireplaces, stay far enough away from it and make sure your legs are covered. When you burn yourself, you have to treat it like a pressure sore and make sure it’s clean and properly bandaged. Limit pressure to the area to promote healing. Get it healed as quickly as possible.

Bladder Management

​Neurogenic Bladder is characterized by loss of bladder control, inability to empty or fully empty the bladder and increased risk of infections, kidney damage and bladder stones. A spinal cord injury can disrupt communication between the brain and the bladder, leading to a condition known as neurogenic bladder. Please consult a urologist!

 

Types of Neurogenic Bladder

  • Reflex/Spastic Bladder (Above T12): The bladder contracts involuntarily, leading to urgency and incontinence.

  • Flaccid/Areflexic Bladder (At or below T12): The bladder does not contract properly, causing urinary retention and overflow incontinence.

 

Managing neurogenic bladder effectively is essential to maintain health and prevent complications and can improve comfort, independence, and overall quality of life. Establishing a routine and finding the best catheter for your body can make a big difference. Consulting a healthcare professional is highly recommended.

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Neurogenic Bladder Management Options:

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  1. Intermittent Catheterization: catheter is inserted every 2-6 hours to empty bladder

    • Reduces risk of infections compared to indwelling catheter, can still get UTIs

    •  Requires manual dexterity or caregiver assistance

    • The best option for individuals with good enough hand function or caregiver support.

  2. Indwelling Catheter (Foley or Suprapubic): A catheter remains in place, continuously draining urine into a collection bag.

    • Foley catheter (inserted through the urethra): no surgical procedure needed

    • Suprapubic catheter (inserted through the abdomen): lower risk of UTIs, more comfortable, does not interfere with sexual intercourse, less risk of urethral damage. A suprapubic catheter is considered a better option, than a foley catheter, for long-term use

  3. Wear a Brief

    • Some may think just wearing a brief is fine. You may already be wearing a brief for bowel incontinence. However, solely relying on a brief for bladder management can be dangerous. If your bladder doesn’t empty completely when you have accidents (this is very likely), you will get UTIs because bacteria will grow in the old urine that is in your bladder. Also, your bladder can overfill and back up into your kidneys, leading to kidney failure.

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Other Helpful Options

  • Botox Injections: temporarily relaxes bladder muscles to reduce spasms. Best for individuals with an overactive bladder.

  • Mitrofanoff Procedure (Urinary Diversion): redirects urine flow through a surgically created stoma, in or around the belly buton, that can be catheterized to empty the bladder. This is a popular option among females and individuals with decreased hand function who have difficulty with intermittent catheterization.

  • Bladder Augmentation: Expands bladder capacity using intestinal tissue. Best for individuals with small bladder capacity.

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Urinary Tract Infections (UTIs)

  • Signs and Symptoms:

    • Increased urgency to urinate

    • Less urine comes out when cathing

    • Burning sensation or discomfort in pelvic area

    • Cloudy foul-smelling urine, possibly bloody or dark

  • If you suspect you have a UTI or have any of these symptoms, please make an appointment with your primary care physician or a urologist. You need a urine analysis and antibiotics for a possible UTI. If the symptoms don’t stop or return in a week's time, consult your doctor and make sure they gave you the proper antibiotic (the one that kills the same bacteria grown from your urine).

  • Prevention:

    • Regularly wash your genitals

    • DRINK ENOUGH WATER! At least 2-3 liters (67-101 oz) a day.

    • Use sterile catheterization techniques (see below)

    • Take cranberry supplement, d-mannose or low-dose antibiotic

      • I take Cranactin D-Mannose Pills, at least 1 per day

 

Bladder Stones

  • Signs: Signs are similar to UTIs, frequent UTIs, severe pain, inability to urinate,

  • Prevention:

    • Regular complete bladder emptying

    • Avoid long-term indwelling catheters, if possible

    • DRINK ENOUGH WATER!

 

Kidney Damage

  • Signs: foamy or dark urine, frequent UTIs, excessive swelling in legs, ankle or face, high blood pressure, fatigue and weakness

  • Prevention:

    • Routine kidney function tests

    • Avoid bladder overdistension

    • DRINK ENOUGH WATER!

 

When choosing the right bladder management plan, please consult a urologist and a healthcare professional or SCI specialist, such as an occupational therapist. The best choice depends on your level of injury (hand function) and lifestyle preferences.

 

Sterile Catheterization Techniques

 

Preparation & Hygiene

  • Wash Hands Thoroughly – Use antibacterial soap for at least 20 seconds.

  • Gather Supplies – Sterile catheter, lubricant, gloves, antiseptic wipes, collection container.

  • Clean the Area – Use sterile wipes or antiseptic solution to disinfect the urethral opening.

 

Sterile Catheterization Steps

 

1. Open the sterile catheter package without touching the catheter directly. Place supplies on a clean, sterile surface. Use single-use catheters only! (see section on if you have to reuse)

 

2. Put on sterile gloves to prevent contamination. Avoid touching non-sterile surfaces once gloves are on. Apply lubricant if needed. Make sure application of lubricant is sterile.

 

3. Insert the Catheter. Use sterile gloves, or at the very least, thoroughly wash hands and don’t touch the catheter. Slowly insert it into the urethra using a gentle, steady motion. If resistance occurs, pause, relax and reposition (if possible) before continuing.

 

4. Drain the bladder, and allow urine to flow into a sterile collection container. Ensure complete bladder emptying to prevent infections.

 

5. Slowly remove the catheter while maintaining sterility. Properly dispose of the catheter.

 

6. Clean the Area Again, Wash Hands Thoroughly, Monitor for Signs of Infection

Bowel Management

​Nerves controlling bowel sensation and control are located in the sacral section (almost the very bottom) of the spinal cord. Due to this, many people with spinal cord injuries experience neurologic bowel or loss of normal bowel function.  

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Types of Neurogenic Bowels 

  • Reflexic Bowel (Above L2): The body holds onto stool but only releases variable amounts at random times. The muscles that control bowel movements are tight, so completing a bowel program helps empty bowels regularly and minimize accidents. 

  • Areflexic Bowel (Below L2): The muscles are too relaxed, causing stool to build up without a natural release. Instead of spontaneous movements, stool may leak out, and a bowel program is needed to clear it. 

  • Mixed Bowel: A combination of both patterns, depending on how the nerves are affected 

 

Managing neurogenic bowel effectively can improve comfort, independence, and overall quality of life. Establishing a routine and finding the best method for your body can make a big difference. Consulting a healthcare professional is highly recommended. Here are the primary options to manage neurologic bowel: 

  • Traditional Bowel Program: A structured routine to regulate bowel movements and reduce accidents. Starting daily is recommended, and this can be adjusted to every other day over time. I did my bowel program every other day for years, it cost me $50/month using Enemeezs, vinyl gloves and water-based lubricant. Medicaid may cover mini enemas/suppositories in your state. 

  • Trans anal Irrigation (Peristeen): A highly effective method for clearing the bowel, though it’s less commonly covered by insurance and can be costly in the United States. I just started using this method, it costs me around $320/month. However, Medicare may cover Peristeen TIA soon, so check with local Choloplast reps to see if you qualify.  

  • Colostomy Bag: A low-maintenance solution that involves surgically creating an opening for waste elimination, requiring the use of a colostomy bag. All major insurances should cover colostomy surgeries and Medicare covers the supplies. 

  • Briefs & Accidents: Wearing a brief and changing as needed is an option, but it’s best reserved for those unable to manage other methods. In some states, Medicaid covers briefs for incontinence.  

 

The most important part of any bowel program is digital stimulation. NO ONE WANTS TO DO IT! Just do it (unless you have a specific medical condition that makes it unsafe)! The options above are it. If you’d rather wear a brief or have a colostomy bag, do that instead.  If you don’t want to have accidents and cannot access a transanal irrigation system (Peristeen), a bowel program with digital stimulation is usually the best option. I have completed a bowel program for 20 years and rarely have accidents. When I do have an occasional accident (maybe once a year) it is because I am extremely sick, or I stopped my last bowel program, in a rush, before I was done. 

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Digital stimulation involves carefully placing a gloved lubricated finger into your rectum. It isn’t effective to just use your fingertip. You need to carefully push your finger as far as it can go (almost to knuckle). Then start slowly moving your finger in a circular motion while firmly pressing on the sides of your bowels, you should do this for approx. 8-30 seconds. This is digital stimulation and is necessary because it helps trigger a reflex that helps the body push out stool. If you do not perform digital stimulation correctly and enough, you will still have accidents because there is most likely still poop further up in intestines that will only be released with the peristalsis reflex that digital stimulation triggers. 

​

Suppository & Mini Enemas help trigger bowel movements, choose one or the other, not both. Both are great options. Both help millions of people. 

  • Suppositories (Magic Bullets) - contains bisacodyl, a stimulant laxative, more directly stimulates bowels to push stool out, 15 min. - 1 hour to take effect (some even place it the night before a morning bowel program), may cause discharge or discomfort later in the day, cheaper option than Enemeez. Magic Bullet Suppository for $59.50 per box of 100 

  • Mini-enema (Enemeez) - contains docusate sodium which is a stool softener, fast acting 2-15 minutes, no discharge, less reported discomfort, full hand dexterity needed to insert (specifically pincer grasp), getting more and more expensive.         Enemeez Mini Enema Plus $75 per box of 30

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Other Things You Need 

  • Gloves: If your glove rips before you use it, change your glove. If you don’t you will get poop on your finger. Here is what I use: Med Pride Medical Exam Gloves $50 per 1000 gloves 

  • Water Based Lubricant: when applying to fingers, make sure you use plenty of lubricant, quarter sized that I squeeze on inside of my index finger, then rub it all over with my thumb. Make sure to cover all sides with lubricant of whatever finger or item you are using.                                                     Here is what I use: McKesson Lubricating Jelly $20 per box of 12 (4oz tubes)  

  • Time: Bowel programs take time. When doing my bowel program daily the fastest I could complete was 30-45 minutes. It would still take an hour or more occasionally depending on what and how much I ate. Switching to every other day didn’t really save me much time. It takes me on average 60 –90 minutes when going every other day. Remember to perform PRESSURE RELIEF every 5-10 minutes when sitting on padded commode and more often if sitting on non-padded commode or toilet seat. Time of day also matters. Most do their bowel programs in the morning or at night. It is best to go around the same time of day every time. This will limit accidents, and your body will begin to get used to going at a certain time. 

  • Padded Commode: If you can access your bathroom and your toilet, you should get a padded commode. Make sure it is tall enough to sit 4-6 inches above your toilet bowl. When using the commode, position your toilet seat up to create more clearance. This is important for digital stimulation and wiping your bottom. I use this Medline Padded Drop-arm Commode. 
     

Steps of a Bowel Program 

  1. It is best to position yourself sitting on a padded commode, over a toilet. Other acceptable ways to position yourself includes in bed, in bathtub (if can safely transfer), or on any other preferably padded surface LYING ON LEFT SIDE. I also use a normal toilet when traveling, this helps minimize luggage, but I recommend trying this with assistance first. If you sit on a regular toilet or non-padded commode, complete pressure relief frequently, every 5 minutes. Complete every ten minutes on a padded commode. 

  2. Glove up and put plenty of lube on index finger. Carefully perform manual evacuation of feces with lubed finger. Carefully hook feces with finger and pull out of rectum. Clean out rectum for mini-enema/suppository. This may take more than one attempt depending on how much poop is in rectum. 

  3. Insert mini-enema or suppository, wait 15-20 minutes (until it starts working).  Some people insert suppository the night before, if 15-20 minutes isn’t enough time for suppository to work fully. 

  4. When your stomach starts gurgling, you pass gas, you start pooping or you have just waited long enough it is time to begin digital stimulation. See above sections on digital stimulation for what digital stimulation is and why it is important. 

  5. Complete digital stimulation for 8-30 seconds. When completing digital stimulation, it is important to be firm and put pressure on sides of rectum, but do not move finger quickly. Move finger in a slow circular motion. Also, take 5-minute breaks in between rounds of digital stimulation. This will help your body heal in between and reduce the chances of hemorrhoids. 

  6. Perform rounds of digital stimulation every 5 minutes, until you get 2 consecutive clean gloves after completing digital stimulation. A clean glove doesn’t have poop or brownish colored liquid on it. 

  7. Wipe your bottom thoroughly. To make sure you don’t get any poop on your cushion, put a towel down. If you don’t have a towel close, I will just take off my shirt and sit on it. As long as you did a decent job wiping, it will wash out! 

  8. Take a shower! I always shower after I poop, it makes sense and feels good!  

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Other Important Aspects of a Bowel Program 

  • Fiber, Diet and Fluid Intake: Eating a balanced diet rich in fiber and drinking plenty of fluids helps maintain stool consistency and prevent constipation. If your poop is hard, drink more water and/or eat more fiber.  

  • Activity and Exercise: Regular movement can stimulate bowel movements and improve overall digestive health (without causing accidents). Get moving to get your gut moving! 

  • Medications and Supplements: Some medications can affect bowel function, so it's important to manage them properly and use stool softeners or fiber supplements if needed. If you are on a narcotic, you probably need to be on a fiber supplement too. 

  • Positioning and Aids: Proper positioning on the toilet or commode can make the process more effective and comfortable. A padded commode should be used to prevent skin breakdown. Do not forget to do pressure relief every 10 minutes. 

  • Timing, Monitoring and Adjustments: Complete your bowel program around the same time of day, everytime. This helps your body regulate to only going poop once a day or every other day. Keeping track of bowel movements and making necessary adjustments to diet, routine, or medications can help maintain a successful program. 

Sex, Fertility and Intimate Relationships

Sexual function is often impacted by SCI. Sex and intimate relationships after spinal cord injury (SCI) can be different, but they remain an important part of life. Sex and intimacy after SCI require adaptation, communication, and exploration, but they can remain meaningful and fulfilling.

​

A. Sensation & Arousal

  • Loss or change in sensation –sexual areas may have reduced or no feeling (or hypersensitivity).

    • Communicate with your partner – Understanding needs is key.

    • Experiment with stimulation of areas that still have sensation – Sensation may change, but pleasure is still possible.

  • Reflexive vs. psychogenic arousal – Reflexive erections or vaginal lubrication may still occur through direct stimulation, psychogenic arousal (from mental stimulation) most likely is affected.

    • Discuss medications and lubricants with PCP

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B. Erectile Function (Men)

  • Reflexive erections – Possible with higher-level injuries (above T12).

  • Psychogenic erections – More likely with lower-level injuries (below T12).

  • Treatment options – Medications (Viagra, Cialis), vacuum pumps, penile implants, and injections. If erection is possible, then so may ejaculation. There are vibration devices to help with ejaculation.

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C. Vaginal Lubrication & Orgasm (Women)

  • Lubrication changes – Some women experience reduced vaginal lubrication.

  • Orgasm – Some women with SCI can still experience orgasm, though it may feel different.

    • Use lubricants – Helps with comfort and dryness.

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Emotional & Psychological Impact

  • Self-esteem & body image – Adjusting to changes in mobility and sensation can affect confidence.

    • Seek counseling if needed – A therapist can help navigate emotional challenges.

    • Practice self-acceptance – Confidence makes a difference in relationships.

  • Communication is key – Open discussions with partners about needs, desires, and boundaries.

  • Exploring new ways to connect – Intimacy isn’t just about intercourse—it includes touch, affection, and emotional closeness.

    • Focus on emotional intimacy – Strengthen your connection beyond physical aspects.

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Adaptive Techniques & Positioning

  • Experiment with positioning – Adaptive equipment can help.

    • Some positions may be more comfortable than others. Try them all!

    • Use mobility aids – They can make intimacy easier.

  • Use assistive devices – Transfer boards or bed rails can aid movement.

  • Consider bowel, bladder, spasticity & pain management – Muscle spasms may affect comfort, so adjusting positions is important.

    • Make sure to consider self-cathing and bowel program timing

    • Stretch before intimacy – Helps reduce spasticity and discomfort.

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Fertility & Family Planning

  • Men: SCI can affect sperm motility, but fertility treatments (sperm retrieval, IVF) can help. There is a research study that suggests sperm count decreases with time since injury (cite).

  • Women: Most women with SCI can still conceive and carry a pregnancy, but bladder management, autonomic dysreflexia, and delivery planning require medical supervision.

    • Plan for pregnancy-related challenges – Bladder and bowel management may need adjustments.

    • Monitor autonomic dysreflexia – Pregnancy can trigger AD

  • Consult a fertility specialist – A Urologist or gynecologist can provide advice.

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Safe Sex & Health Considerations

  • Preventing UTIs & infections – Proper hygiene and bladder management before and after sex.

  • Autonomic dysreflexia (AD) – High-level injuries (above T6) may trigger AD during sex, causing dangerous blood pressure spikes.

    • Monitor for AD symptoms – If dizziness or sweating occurs, stop and reposition.

  • Birth control options – Some methods may interact with medications or increase blood clot risks.

    • Discuss birth control with a doctor – Some options may be better suited for SCI.

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Navigating Relationships & Dating

  • Confidence & self-acceptance – Feeling desirable is about mindset, not mobility.

    • Join SCI support groups – They can provide advice and encouragement.

    • Take care of yourself (physically, mentally and emotionally).

  • Discussing SCI with a partner – Honesty about needs and limitations fosters deeper connections.

    • Be open about your needs – A supportive partner will want to understand.

  • Online dating & social opportunities – Many people with SCI find success in dating through disability-friendly platforms. I met my wife on a dating app.

After SCI Guide

Inpatient Rehabilititation

What Is Inpatient Rehabilitation?

Inpatient rehabilitation is an intensive hospital-based program where individuals receive 24/7 medical care, daily therapy, and education to help them recover, adapt, and prepare for life after injury. A stay typically lasts several weeks to 2 months, depending on the level and severity of injury. More severe injuries (C1-C4) have a longer average length of stay (several months).

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When Should You Go? As soon as possible, immediately after injury!

  • This is standard care. Most SCI patients get transferred to inpatient rehab after stabilization in the hospital. You should go as soon as your doctor allows it. Focus of inpatient rehab: Prevent complications, begin physical recovery, and learn foundational self-care skills.

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Returning to Inpatient Rehab Later - You may qualify again if, you’re experiencing functional decline or you’ve had a major life event and require 24/7 care.  Talk to your doctor or physiatrist about being re-referred.

 

Top 10 Spinal Cord Injury Inpatient Rehab Hospitals (U.S.)

According to U.S. News & World Report (2024) and expert reviews:

  1. Shirley Ryan AbilityLab – Chicago, IL

  2. Craig Hospital – Englewood, CO

  3. Shepherd Center – Atlanta, GA

  4. Kessler Institute for Rehabilitation – West Orange, NJ

  5. TIRR Memorial Hermann – Houston, TX

  6. Spaulding Rehabilitation Hospital – Boston, MA

  7. Brooks Rehabilitation Hospital – Jacksonville, FL

  8. UC San Diego Health – Hillcrest – San Diego, CA

  9. Mayo Clinic – Rochester, MN

  10. University of Washington Medical Center – Seattle, WA

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These places are great, the best! I never went to any of these hospitals. There are many other great places to go. Sometimes being close to home is the best option. The important thing is that you are learning these skills.

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Must-Learn Skills

  • Bowel and bladder management!

  • Pressure sore prevention and skin care

  • Safe transfers (bed to wheelchair, car, toilet, shower bench)

  • Wheelchair mobility (manual or power), should have a decent loaner wheelchair

  • Basic strength and endurance building

  • ADLs (activities of daily living): dressing, grooming, bathing

  • Spasticity and pain management, usually medications at this point

  • Understanding your level of injury

  • Home modifications & equipment needs

  • Preventing secondary complications (e.g., UTIs, DVTs)

  • Be as independent as possible in your current environment.

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Tips & Tricks to Get the Most Out of Rehab

1. Be Your Own Advocate - Ask questions, take notes or have someone with you who can, speak up if your needs aren’t being met.

2. Set Specific Goals - Examples: “I want to transfer independently,” “I want to go home safely,” or “I want to drive again.”, share your goals with your therapy team early, write them down

3. Build a Support Network - Join SCI peer groups or meet with a peer mentor if available. Involve family or friends in your therapy sessions.

4. Use Your Phone or Tablet - Record sessions (with permission) to review at home. Keep a digital notebook or journal. Use apps for reminders or SCI education.

5. Try Everything - Nobody wants to do a bowel program or use a catheter/self-cath. These are usually the safest ways to manage your bowels and bladder after a spinal cord injury. You need to be able to do these things as independently as possible. You’re in a safe place to try!

6. Focus on Prevention - Learn how to protect your shoulders, skin, bladder and bowels. These are key for long-term health. Master turning in bed (when doc clears), checking skin, and recognizing signs of infection, and autonomic dysreflexia.

7. Don’t Skip Psychosocial Support - Talk to a psychologist, social worker, and/or peer mentor. SCI is life-changing, and emotional support is part of recovery.

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Inpatient rehab is a critical phase of SCI recovery, but it’s just one step in a lifelong journey. Take full advantage of your time there. Learn, ask, push, and plan. Your future independence, health, and quality of life are shaped by what you do now.

Outpatient Rehabilititation

What Is Outpatient Rehabilitation?

Outpatient rehabilitation is a structured therapy program you attend regularly after discharge from the hospital/inpatient rehab. You live at home and travel to the clinic for scheduled therapy sessions, which may include physical therapy, occupational therapy, and other services.

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When Should You Start Outpatient Rehab?

After Inpatient Rehab! - When you can travel to appointments. If you cannot go to outpatient rehab after discharging from inpatient rehab, it is best to get home health therapy until you qualify or get transportation for outpatient therapy. Outpatient therapy services are traditionally better than home health services.

Later in Recovery (Weeks, Months, or Years Later) - you’ve had a medical change (new surgery, increased spasticity, shoulder pain, pressure injuries, or mobility challenges). You want to start new goals like returning to work or school, driving, or advanced wheelchair skills

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Occupational Therapy (OT)

  • Advanced wheelchair skills

  • Driving evaluations and return-to-drive training

  • Home and community navigation

  • Adaptive equipment training

  • Stretching and Strengthening (self or assisted if needed), Energy conservation and joint protection

  • Bowel/bladder and dressing routines and how to complete at home/work/public

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Physical Therapy (PT)

  • Strengthening, stretching, posture, balance

  • Transfer improvement (to/from car, floor, toilet, shower bench, high/low)

  • Managing spasticity or contractures

  • Fall prevention

  • Neuromuscular stimulation or robotics (in some clinic$)

  • Gait training (for incomplete SCI or orthotics users)

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Other Services - Speech-language pathology (for swallowing, voice, or cognition), Psychological support, Vocational therapy, Peer mentoring or support groups, Telehealth for rural or transportation-limited clients

How Often Do You Go - Typically 2–3 times per week for 4–12 weeks or longer, depending on goals and insurance.

 

When to go (or not go)

  • You’re medically stable.

  • You can sit in your wheelchair or on a mat for 45–60 minutes.

  • You can get to appointments (by yourself or with help).

  • You have specific functional goals you want to work toward.

  • Not designed for 24-hour care or nursing needs.

  • Not for long-term support unless tied to ongoing goals (insurance may limit sessions).

 

Tips & Tricks for Getting the Most Out of Outpatient Rehab

1. Come With Goals - Want to go back to work? Drive? Play sports? Say it. Write down goals with your therapist and track progress.

2. Commit to a Home Program - Outpatient therapy is only a few hours a week. What you do outside therapy matters more in the long run. Make sure you have a plan for weight bearing activities, stretching, strengthening, bowel and bladder, going out into the community and your future.

3. Be Honest - Tell your therapist if something isn’t working at home. Share pain, fatigue, or fear, so that therapy can be adjusted.

4. Document Everything – Bring a log of home routines, (exercise, skin care). Take photos of equipment or home barriers if helpful. Ask what your therapist recommends.

5. Ask for Specialized Services – Splinting, Equipment trials, Functional Electrical Stimulation (FES), Aquatic therapy (if safe and available), Driver’s rehab, ask!

6. Explore Technology - Ask about apps, smart home tools, adaptive video gaming, or voice-controlled devices. Many therapists are happy to integrate these into your routine.

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Look for these in the right outpatient clinic

  • Experience treating SCI specifically. ASK and look for yourself!

  • Therapists who understand wheelchair mobility and equipment

  • Access to a seating clinic, orthotist, or driver’s rehab specialist

  • Willingness to involve your caregiver, if needed

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Outpatient rehab helps bridge the gap between rehab and real life. It’s your chance to refine your skills, work toward new milestones, and keep your body and mind strong. Whether you’re newly injured or years post-injury, it’s never too late to grow your independence.

Community & Community Mobility

After a spinal cord injury (SCI) finding a community to support you and getting out into your community is about independence, increased quality of life and better mental health. You don’t have to do it all at once but every trip into your community helps rebuild life after injury. 

 

The Power of Peer Support & Disability Community 

- You are not alone. There are thousands of others rolling through life, just like you. 

Connecting with other people with disabilities can: 

  • Teach you new life hacks and mobility tips 

  • Help you feel seen, heard, and understood 

  • Provide access to adaptive sports, travel, advocacy, jobs and more 

  • Offer emotional support during tough times 

 

Where to Find Community 

  • In-person or online peer groups, (local chapters of Spinal Cord Injury Association, support groups) 

  • Local adaptive sports and disability centered organizations 

  • Recreation centers or YMCAs with inclusive programming 

  • SCI-specific Facebook groups and Reddit forums 

  • National organizations - United Spinal Association, Christopher & Dana Reeve Foundation, Independent Living Centers 

 

Community Mobility 

 

Why Community Mobility Matters 

  • Increases confidence and daily function 

  • Reduces isolation and depression 

  • Encourages peer support and resource sharing 

  • Builds a sense of purpose and belonging 

 

Essential Wheelchair Skills for Community Mobility  

- Ask OT or PT to help you learn and practice these skills in real-world environments! 

 

Manual Wheelchair Skills 

  • Wheelie (balance on rear wheels) – for curbs and uneven terrain 

  • Curb negotiation – both with and without a cutout 

  • Pushing uphill & downhill safely 

  • Controlled descents – use of grip or gloves 

  • Turning in tight spaces 

  • Transferring in and out of vehicles (if applicable) 

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Power Wheelchair Tips 

  • Know your chair’s battery range and charging needs 

  • Practice tight turns and door navigation 

  • Get comfortable using elevators, ramps, and lifts 

  • Keep a portable charger or back-up battery, if needed 

 

Tips & Tricks for Navigating the Community 

 

1. Look Out for Hazards and Go Slow - Always scan ahead, especially on sidewalks, crosswalks, roads, ramps, or driveways. Cracks, bumps, uneven terrain, sand, gravel, potholes, or wet tile can cause falls and injuries. 

 

2. Plan Ahead - Check accessibility on apps like Google Maps, Rollmobility, and Access Now. Call ahead to ask about ramps and elevators, door width, and accessible restrooms. 

 

3. Travel Light (But Smart) - Bring a small bag with essentials (catheter supplies, water, emergency meds, backup cushion cover, charging cable). Use a backpack, seat pouch, or cross-body bag to keep your hands free for propulsion. 

 

4. Protect Your Hands - Use wheelchair gloves to prevent blisters. Keep moisturizer and hand sanitizer in a side bag or lap tray. You’re hands will eventually build up calluses. I only wear gloves in the cold (that is when they are a must!) 

 

5. Know Your Transportation Options 

  • City bus or rail paratransit (check ADA compliance) 

  • Ride share services – you can use traditional ride sharing apps (Lyft, Uber and Taxis) if you can independently transfer in/out of the vehicle (without damaging vehicle) and assist taking apart your chair and putting back together. Ride-share services are also starting to offer wheelchair accessible options (Uber WAV, Lyft Access, check if available in your area). 

  • Check with independent living centers, traditionally wheelchair transportation (if you cannot get in/out yourself ) is hard to find and expensive. 

  • Drive yourself (if you have a valid driver's license and required equipment)

  • Propel Yourself - great exercise, go slow, look for hazards!

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Community and community mobility lets you move forward in your life. Build your skills, know your rights, and find your people. The world isn’t always accessible, but together, we can make it more welcoming and more inclusive. 

ADA and Disability Rights

HISTORY OF THE AMERICANS WITH DISABILITIES ACT (ADA) 

 

Before the ADA: 

  • People with disabilities, including SCI, often faced widespread discrimination—in employment, public spaces, schools, transportation, and even housing. We still do, but it was much worse. 

  • No legal requirement existed for public buildings, sidewalks, transportation, or businesses to be accessible. 

 

The Disability Rights Movement: 

  • Inspired by the Civil Rights Movement of the 1960s and ’70s. 

  • 1973: The Rehabilitation Act passed, including Section 504, the first federal civil rights protection for people with disabilities but only applied to federally funded programs. 

  • 1977: The “504 Sit-In” protests where activists occupied federal buildings demanding enforcement of Section 504. 

  • 1988: First version of the ADA introduced in Congress. 

  • July 26, 1990: President George H. W. Bush signed the ADA into law. 

  • 2008: The ADA Amendments Act expanded and clarified protections. 

  • Look up & research yourself, the more you know, the less likely you will be taken advantage of. 

 

WHAT IS THE ADA - The Americans with Disabilities Act is a civil rights law that prohibits discrimination against people with disabilities in areas of public life. 

 

KEY DEFINITIONS 

  • Disability: A physical or mental impairment that substantially limits one or more major life activities. 

  • Reasonable Accommodation: Modifications or adjustments that enable a person with a disability to participate equally. 

  • Undue Burden: If providing access would cause significant difficulty or expense, businesses may be exempt—but must still explore alternatives. 

 

Sections of ADA 

 

TITLE I: EMPLOYMENT - Protects people with disabilities from employment discrimination. 

  • Applies to private employers with 15 or more employees, as well as state and local governments, employment agencies, and labor unions. 

  • Employers cannot discriminate against a qualified individual with a disability in hiring, promotion, pay, job assignments, training, benefits, or termination. 

  • Employers must provide reasonable accommodations unless doing so would cause an undue hardship (significant difficulty or expense). 

Examples for People with SCI: 

  • Providing a height-adjustable desk for someone who uses a wheelchair. 

  • Allowing flexible work hours for medical appointments. 

  • Installing automatic doors or modifying bathrooms in the office. 

What You Can Do If Discriminated Against: File a complaint with the Equal Employment Opportunity Commission (EEOC) within 180 days: 1-800-669-4000  www.eeoc.gov 

 

TITLE II: STATE AND LOCAL GOVERNMENT SERVICES - Ensures that people with disabilities have equal access to services provided by public entities (governement). 

  • Public transportation, courthouses, public schools, voting, police departments, city parks, public libraries, and more. 

  • Requires that programs and activities of public entities be accessible, not necessarily every facility, but services must be accessible overall. 

  • New buildings must be fully accessible, and older ones must make reasonable modifications. 

Examples for People with SCI: 

  • Curb cuts and ramps on public sidewalks. 

  • Accessible seating at city events. 

  • Access to public transit via lift-equipped buses or paratransit services. 

What You Can Do: File a complaint with the Department of Justice (DOJ) if you experience barriers to access: 1-800-514-0301 www.ada.gov 

 

TITLE III: PUBLIC ACCOMMODATIONS & COMMERCIAL FACILITIES - Prevents discrimination in private businesses that are open to the public. 

  • Restaurants, hotels, theaters, doctors’ offices, gyms, daycares, stores, private schools,  

  • Requires businesses to remove physical barriers where it is “readily achievable.” 

  • Requires new construction (since 1993) to be accessible. 

  • Must modify policies if needed to serve disabled individuals. 

 

What Businesses Must Provide: 

  • Accessible Entrances – ramps, wide doors, level thresholds. 

  • Accessible Restrooms – grab bars, roll-in stalls, sink clearance. 

  • Accessible Parking – clearly marked spaces with van access. 

  • Service Accessibility – lower checkout counters in retail stores, goods/services must be accessible even if physical access isn’t perfect. Service can be provided in an alternative way if full access isn’t possible. 

 

When They’re NOT Required: 

  • If the business is located in a building built before 1993 and making it accessible would pose an undue burden or be structurally impractical. 

  • However, “readily achievable” modifications (like moving shelves, adding signage, installing a ramp) are still required. 

  • Small businesses must make reasonable efforts to remove barriers over time. 

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IF A BUSINESS ISN’T ADA COMPLIANT, WHAT TO DO 

 

Step 1: Talk to Them - Sometimes business owners just don’t know. Try: “Hi, I use a wheelchair and couldn’t get into your building. I wanted to let you know this might be an ADA issue.” 

 

Step 2: File a Complaint - You have several options: 

OPTION 1: FILE WITH THE U.S. DEPARTMENT OF JUSTICE (DOJ) 

  • Select file a complaint (upper right of screen) 

  • Phone: 800-514-0301 (voice) | 800-514-0383 (TTY) 

  • You don’t need a lawyer to file a complaint. DOJ should investigate/mediate the issue. 

OPTION 2: LOCAL ADA CENTERS - Call your regional ADA Center. They offer free, confidential support and can help you understand your rights. 1-800-949-4232 www.adainfo.org 

 

TITLE IV: TELECOMMUNICATIONS - Ensures that individuals with hearing or speech disabilities have equal access to communication services. 

  • Requires telephone companies to provide relay services 24/7. 

  • Ensures closed captioning for public service announcements on TV. 

  • Applies to TVs, internet-based communication services, and TTY (text telephone) support. 

Relevance for People with SCI: 

  • If your SCI affects speech or hand function, relay services or voice-to-text apps may be essential. 

  • This title ensures communication access in emergency services and public broadcasting. 

 

TITLE V: MISCELLANEOUS PROVISIONS - Addresses a variety of additional legal protections, definitions, and rights. 

  • Protects individuals from retaliation or coercion for asserting their ADA rights. You cannot be punished for requesting accessibility or filing a complaint. 

  • Clarifies the definition of disability (expanded further in the 2008 ADA Amendments Act). 

  • Allows individuals to seek attorney’s fees if they win an ADA lawsuit. 

  • Encourages alternative dispute resolution (ADR) (like mediation) to resolve complaints. 

 

HANDICAPPED PARKING – KNOW THE RULES 

 

What the ADA Requires: 

  • For every 25 parking spaces, at least 1 must be accessible. 

  • For every 6 accessible spaces, 1 must be van accessible. 

  • Must be clearly marked with the international symbol of accessibility. 

  • Must be on the shortest accessible route to the entrance. 

 

Who Can Park in These Spots? 

  • Only drivers or passengers with valid state-issued placards or license plates. 

  • These placards are issued by your state’s Department of Motor Vehicles (DMV) and often require medical certification. 

 

Reporting Misuse or Lack of Spaces: 

Do NOT confront drivers yourself. Instead: 

  1. Report to local police or parking enforcement: 

  • Call the non-emergency number of your city police department. 

  • Provide license plate, location, and a photo (if safe to take). 

  1. Contact the property owner/manager: 

  • Inform them of noncompliance. They may fix signage or paint lines. 

  1. Report to the DOJ if it’s part of a broader pattern of inaccessibility (see DOJ info above). 

  1. Call 311 or use your city’s online reporting tool to report ADA violations or abuse of accessible parking. 

 

YOU HAVE THE RIGHT TO: 

  • Access businesses, parks, sidewalks, services, and transportation. 

  • Be free from discrimination at work or school. 

  • Receive reasonable accommodations. 

  • Speak up without fear of retaliation. 

 

KNOW YOUR RIGHTS, USE YOUR VOICE 

Remember: You’re not asking for a favor. The ADA is the law. You have the right to live, work, and participate in your community just like anyone else. If you feel your rights have been violated, you are not alone. 

 

RESOURCES & CONTACTS 

  • ADA National Network (Free help): 1-800-949-4232 www.adata.org 

  • Department of Justice ADA Info Line: 800-514-0301 www.ada.gov 

  • EEOC (Workplace Discrimination): 1-800-669-4000 www.eeoc.gov 

  • Paralyzed Veterans of America: 1-800-424-8200 www.pva.org  

  • Local Disability Organizationshttps: 

Stretching

Stretching Is Essential After SCI - Stretching isn’t just therapy, it’s basic maintenance for your body. If you don’t stretch, your muscles will contract, your spasticity and pain will get much worse and you will not be able to move joints like your hips and knees (which will severely limit your independence and ability to lay in prone/supine (on stomach or on back). Whether you’re newly injured or 20 years post-injury, daily stretching is one of the most powerful tools to:

  • Prevent contractures (tight muscles/joints)

  • Improve posture and comfort in your wheelchair

  • Reduce spasticity and stiffness

  • Maintain range of motion for transfers, dressing, and reaching

  • Decrease risk of pressure injuries

  • Improve circulation and digestion

  • Promote better breathing and trunk mobility

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You Should Stretch Independently (If You Can)

If you’re paraplegic or have some upper body function, you can likely stretch most areas independently. Many people with SCI rely on caregivers for stretching, especially in inpatient rehab. If you've been cleared by your doctor to begin stretching and have the strength and range to stretch yourself, LEARN TO DO IT YOURSELF! Stretching independently promotes ownership of your health, builds strength, balance, and body awareness (try stretching in a bed instead of a mat, it’ll be a challenge for a while, but it will build strength and balance), reduces dependence on others, and allows for more flexibility in your routine.

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How Often & How Long to Stretch

  • DAILY! (should take approx. 5-20 minutes)

  • Hold each stretch for 20–60 seconds!

  • Repeat each stretch 2–3 times per side

  • Hold stretches, avoid bouncing, if you notice any pain or AD symptoms stop!

  • Stretch whenever you can (i do first thing in the morning) but for best results, stretch when muscles are warm (after a shower or workout).

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LOWER BODY & TRUNK STRETCHES (All these are important!)

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1. Long sitting, Hamstring Stretch

  • Sit on bed or other surface with your legs straight out in front of you.

  • Keep knees as straight as possible by using your elbows or hands to gently lean on them

  • Keep legs together (hold stretch for 20+ seconds) , then spread legs apart and stretch down right-side, left side and center (holding each for 20+ seconds)

  • Feel stretch behind thigh, however based on your injury, you may not be able to feel

  • Keeps knees and hips flexible for transfers and dressing.

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2.  Prone on Elbows, Hip Flexor Stretch

  • Get approval from therapist/doctor before starting this, especially those with fusions in the thoracic and/or lumbar areas of the spine! This can be dangerous if not done correctly but is still very important to complete if at all possible.

  • Gently turn over onto stomach (cross legs while turning to minimize damage to spine and hardware), then prop on your elbows, hold for at least 3 minutes (the longer the better)

  • If you cannot lie on your stomach try this: Lie on your back near the edge of bed. Let one leg hang off the edge while the other leg stays bent. Gently press the hanging leg downward.

  • If you cannot do either of these roll up a towel, put towel under your lower back and lay on your back (like a lumbar pillow), can use bigger items (or more towels) for a better stretch.

  • Counteracts sitting posture; reduces hip tightness.

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3. Butterfly or Figure 4 Stretch, Groin (Hip Internal Rotator) Stretch

  • Butterfly Stretch: Seated on bed, mat or other surface, bend knees and put bottom of feet together, gently pull feet toward you as much as possible, then gently lean forward.

  • Figure 4 Stretch: Keep one leg straight, bend the other leg, place ankle of bent leg on top of opposite knee and gently press downward on bent knee

  • Helps prevent legs turning inward, loosens hips and helps with pelvic movement in transfers, dressing and other important ADLs.

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4. Calf Stretch (With Strap or Wall)

  • Best done in conjunction with long sitting stretch. Try to keep knees as straight as possible to increase stretch and to stretch multiple joints at once!

  • Loop a strap, yoga belt or towel around foot and gently pull toes toward you or press foot against a wall or other vertical surface.

  • Prevents foot drop and helps with tone management.

 

5. Trunk Extension (Seated in W/C)

  • Place hands on knees, pull your body forward, trying to arch your back

  • OR, Do a chair pushup (pressure relief pressing body straight up trying to lift bottom off cushion) then try to push your shoulders down and back as far as possible (Make sure you are holding on tight. If you have spasms, it may be best to do this directly in front of a bed).

 

6. Trunk Rotation (Seated or Supine)

  • Seated: Gently twist torso side-to-side, holding where tightness or stretch is felt. I think this feels best in conjunction with a chair push up (pressure relief technique, like trunk extension, do this in front of a bed first if you have spasms)

  • Supine: Bend knees and rotate knees to one side while keeping shoulders flat.

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UPPER BODY & NECK STRETCHES

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1. Shoulder Rolls

  • Roll shoulders in a circular pattern (clockwise x10-20, counterclockwise x10-20). Move slowly and try to make a circle with your shoulders that is as big as possible (try to push shoulder as far as you can in each direction, up, forward, down and backward).

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2. Upper Trap/Neck Stretch

  • Push shoulders/scapulas down toward the ground

  • Tilt ear toward shoulder gently while keeping opposite shoulder down.

  • Use opposite hand to increase stretch (optional).

  • Reduces neck stiffness and tension headaches.

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3. Chest/Shoulder Stretch (Doorway or Corner)

  • Sit or stand in a doorway, place forearms on doorframe, lean forward gently.

  • Or clasp hands behind back and lift chest.

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4. Wrist & Forearm Stretch

  • Extend one arm, palm facing down.

  • Use the other hand to gently pull fingers down and back.

  • Repeat with palm facing up.

  • Helps prevent and treat tendonitis around elbow.

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ASSISTED STRETCHES (If You Can’t Stretch Independently)  - Always communicate during assisted stretching—pain = stop. These can be done by a caregiver, family member, or trained aide. They should always move slowly and listen for discomfort or tightness.

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If you feel sharp pains or Autonomic Dysreflexia symptoms, stop stretching immediately. If no further pain or discomfort, try to gently stretch area again. If the problem persists, talk to a medical provider about the issue. If your spasticity increases during stretching, try deep breathing or wait until tone subsides. It is very likely stretching will cause increased spasticity or tone in the short term, but in the long term, joints should become looser and more flexible.

Weight Bearing

Why Is Weight-Bearing So Important After SCI? 

  • Consistent weight-bearing is key for long-term health, even if you can’t walk. 

  • After a spinal cord injury, most people experience reduced or no weight-bearing through their legs and hips due to paralysis or weakness. Over time, this lack of pressure on your bones and joints can lead to: 

    • Osteoporosis (weak, brittle bones) 

    • Increased fracture risk 

    • Joint contractures 

    • Muscle shortening, spasticity and tone 

    • Decreased circulation and respiratory capacity 

    • Slowed digestion and bowel movement 

    • Disconnection from body awareness and upright positioning 

 

Benefits of Weight-Bearing 

  • Skeletal System - Maintains bone density & joint alignment 

  • Neurological System - Stimulates sensory input & proprioception 

  • Muscular System - Helps reduce spasticity and tone 

  • Cardiovascular System - Supports blood pressure regulation 

  • Respiratory System - Improves lung expansion/upright posture 

  • Digestive System - Encourages better bowel and bladder function 

  • Mental Health - Promotes body awareness and self-esteem 

 

Ways to Weight-Bear (With and Without Equipment) 

1. Standing Frame (Passive Standing) 

  • Most effective for long-term bone and joint protection 

  • Ideal: 30 minutes, daily, at least 3–5 times/week 

  • Costly, but may be covered by insurance or grants. Ask your PT or OT about DME funding or loan programs. 

  • Check Facebook Marketplace and other places you can find used equipment, some people never use them and will sell for deep discount. 

  • There are ways to make your own. I have seen blueprints from patients that came from Craig Hospital. I will try to get ahold of and post.` 

 

2. Bed-Based Weight-Bearing (Without Standing Frame) 

a. Quadruped Position (on hands and knees) 

  • On bed or mat, position yourself (with help) on hands and knees 

  • Weight bears through shoulders and hips 

  • Can add rocking motions or shoulder taps if able 

b. Prone Position (on stomach), try to prop on elbows.

  • Lie on your stomach with arms at sides or propped 

  • Weight bears through hips and front of thighs 

  • Time: 20–30 min/day or more 

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3. Seated Weight-Bearing Exercises 

a. Resistance/Weight Training and Adaptive Sports 

b. Sit-to-Stand Transfers (if able) 

  • Even assisted or partial transfers load the legs 

  • Use a gait belt or grab bar if needed 

 

4. Assisted Standing with Parallel Bars or Walker 

  • Only for those with incomplete SCI or some leg function 

  • Can be done in therapy or home with help 

  • Requires bracing, likely another person for safety support

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5. Tilt Table or Standing Tilt Bed 

  • Similar to standing frame but found in hospitals or outpatient clinic

  • Allows slow acclimation to upright position

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How Often Should You Weight-Bear? 

  • Daily is ideal. At least, 3–5 times per week. 

  • Start with 15–20 minutes, work up to 30-60 minutes 

  • Discuss orthostatic blood pressure risk with your provider before starting standing or weightbearing activities. 

 

Tips 

  • Always check skin first, especially if you have sensation loss—look for redness, pressure, or injury 

  • Go slowly to avoid dizziness or fainting 

  • Use compression garments or abdominal binders if needed for blood pressure 

  • Consider doing weight-bearing after stretching to prevent tightness 

  • Ask about bone scans if you’ve been injured for over a year—this can help guide standing plans 

Exercise

Why Is Exercise Important After SCI? - regular exercise is essential to your overall health and independence. Even small amounts of exercise can improve your long-term health dramatically. 

  • Boosts cardiovascular health and circulation 

  • Increases muscle strength and endurance, which increases your independence! 

  • Helps reduce spasticity and chronic pain 

  • Supports bladder, bowel, and sexual health 

  • Prevents pressure sores and bone loss 

  • Enhances mental health, confidence, and quality of life 

  • Reduces risk of heart disease, diabetes, and obesity

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General Exercise Guidelines 

  • Frequency: Aim for at least 150 minutes of moderate aerobic activity (can talk but not sing) per week or 75 minutes of vigorous activity (breathing hard cannot hold conversation). 

  • Strength Training: Include at least 2 days/week of muscle-strengthening activities. 

  • Flexibility: Stretch major muscle groups (neck, shoulders, wrist/hands, trunk, legs and ankles 2–3 times/week. People with spinal cord injuries should stretch affected body parts (that are difficult to move) daily. 

  • Balance & Coordination: Especially important for older adults to prevent falls. 

  • Pressure Relief & Skin Care: Incorporate regular pressure relief techniques during workouts to prevent pressure sores. 

  • Adaptive Equipment: Use resistance bands, hand cycles, or accessible gym machines. Active Hands are designed for quadriplegics to assist with grasping weights and machines. 

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Safety Tips for Exercise after SCI

  • Monitor for pain, autonomic dysreflexia, orthostatic hypotension, or overheating 

  • Stop and rest if you are having these symptoms. If they persist, seek medical guidance and help.

  • Use light weights (3-5 Ibs, especially for shoulder and back exercises), you are less likely to injure your shoulders.

  • Stay hydrated

  • Check your skin, after new workouts, you need to make sure anything new you are doing isn't causing skin issues 

  • Avoid overusing your shoulders, avoid any exercise that causes any sharp pains, if you're feeling pain in your shoulders, only use light weights that do not increase pain.

  • Always check your skin after workouts 

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Why Rest Matters 

  • Muscle Recovery: Growth happens during rest, not just during workouts. 

  • Injury Prevention: Overtraining increases risk of strain, fatigue, and injury. 

  • Mental Health: Rest days help maintain motivation and reduce burnout.

 

Listening to Your Body 

Pain vs. Discomfort: Discomfort is normal; sharp pain is a red flag. 

  • Fatigue Signals: Persistent tiredness, poor sleep, or irritability may signal overtraining. 

  • SCI Considerations:  

  • Watch for autonomic dysreflexia symptoms (e.g., headache, sweating). 

  • Monitor skin integrity and avoid prolonged pressure. 

  • Stay hydrated and regulate temperature, especially during outdoor workouts. 

 

Tools That Help 

  • Split ropes or battle ropes (seated use)

  • Therabands or resistance tubes

  • Light dumbbells (3–5 lbs, maybe a 10 Ib)

  • Stationary Arm Bike/Ergometer

  • Grip aids like Active Hands for quad-level injuries

  • Wheelchair sports chair (loan or grant programs available)

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Sample Workout Schedules (based on how often you can work out, these are just to get started. Build your workout how you want it based on your goals) 

  • 1 Day - Focus on full-body (everything you can use) strength  & light cardio. Combine resistance training with short aerobic bursts, like 10–15 min arm cycling). 120-150 minutes (or however long you can, anything is better than nothing) 

  • 2 Days - Alternate strength and cardio. One day strength training, one day cardiovascular training. Can also combine each day (do 30-45 minutes of cardio then 30-45 min of resistance training. 60-90 minutes a day (or whatever you can). 

  • 3 Days - 2 cardio days & 1 strength (or vice versa). Include one day of cardio, one of strength, and one mixed (or one or the other). 45-60 minutes a day (or whatever you can). 

  • 4 Days - 2 strength & 2 cardio, add flexibility work. Alternate strength and cardio; include mobility-focused stretching daily (for stretching, target areas you are working out, you should be already stretching lower extremities and trunk daily). 40-50 minutes. 

  • 5 Days - separate strengthening and cardio days or combine them (20-30 minutes of cardio and 20-30 minutes of strengthening, make sure to incorporate stretching (see above) and recovery days. 

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Start small, be consistent, and move forward. Your body will thank you!​

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Cardiovascular Exercise

CARDIOVASCULAR EXERCISE - Aerobic exercise that gets your heart rate up and improves endurance and lung capacity. 

 

Benefits: 

  • Heart & lung health 

  • Improved blood pressure and circulation 

  • Weight control 

  • Boosts energy and mood 

 

Examples: 

  • Stationary arm bike 

  • Pushing manual wheelchair briskly 

  • Split ropes or battle ropes 

  • Hand cycling (indoor or outdoor) 

  • Aquatic exercise (if accessible) 

  • Wheelchair sports (e.g. basketball, rugby) 

  • Dance or seated Zumba classes

  • Look up wheelchair cardio on Youtube! There are hundreds of videos for everyone available for free.

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Recommendation: 

  • 20–30 minutes, 2–5 times/week 

  • Target moderate intensity (can talk but not sing)

Resistance Exercise/Strength Training

RESISTANCE (STRENGTH) TRAINING - Building and maintaining muscle using weights, resistance bands, or your own body weight. 

 

Benefits: 

  • Preserves upper body strength for transfers & pushing 

  • Improves joint stability and balance 

  • Increases independence in ADLs 

  • Helps prevent overuse injuries (especially in shoulders) 

 

Examples: 

  • Dumbbell exercises (bicep curls, shoulder press, rows) 

  • Theraband exercises (lat pulls, chest fly, external rotation) 

  • Chair push-ups (sitting in w/c pushing bottom off cushion)

  • push ups in bed or on mat (lying on stomach, push chest off surface then lower body back down, repeat)

  • medicine ball exercises

  • Core stabilization and other core exercises

 

Recommendation: 

  • 2–3 days/week, not on back-to-back days 

  • 8–12 reps per exercise, 2–3 sets per muscle group 

Adaptive Sports and Recreation

Benefits: 

  • Increases strength, endurance and wheelchair skills (because of adaptive sports, I can get my w/c almost anywhere)

  • You can learn so much from your disabled teammates. Just ask and listen! I learned more from my teammates than I ever learned in OT/PT (and my therapists were great)!

  • Improves functional mobility, self-confidence and independence

  • Encourages goal setting and competition 

  • Enhances mental health and motivation

 

Examples: 

  • Wheelchair basketball, rugby, tennis, softball, football

  • Adaptive kayaking, waterskiing, hand cycling 

  • Snow Sports 

  • Adaptive yoga or weight training

  • Rock climbing (with appropriate equipment) 

  • Local adaptive fitness classes 

 

Find programs through your local adaptive sports organization, independent living center, or VA hospitals. 

Driving

​Driving significantly enhances independence, mobility, and quality of life after an SCI.  

 

No insurance will pay for anything related to returning to driving after a disability. Insurance will not pay for a driving program, driving training or modifications to vehicles.

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Can you drive based on your level of injury (based on typical SCI outcomes): 

  • Cervical (C1-C4): Injuries at these levels typically result in significant impairment, including limited or no movement in the arms and legs. Individuals with injuries at these levels often require extensive adaptations and may not be able to drive independently. 

  • Cervical (C5-C8): Injuries at these levels may allow for some arm and hand movement. With appropriate vehicle adaptations, such as hand controls, individuals may be able to drive. 

  • Thoracic (T1-T12): Injuries at these levels affect the trunk and lower body but often leave upper body function intact. Most individuals with thoracic injuries can drive with adaptations. 

  • Lumbar (L1-L5) and Sacral (S1-S5): Injuries at these levels primarily affect the lower body. Individuals with these injuries often retain upper body function and can drive with minimal adaptations. 

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Steps to Return to Driving: 

  1. Complete outpatient therapy or skip this step: Consult with a healthcare provider to ensure you can drive with adaptive equipment. This is traditionally done in outpatient rehabilitation by your occupational therapist. If your spinal cord injury is not in the cervical (neck) section, you can possibly skip this step as you most likely have adequate arm movement. If you have any questions or concerns, it is best to schedule an OT evaluation. 

  2. Driving Program and Assessment: Sign up for, and complete, a driving assessment with a Certified Driver Rehabilitation Specialist. This will determine your ability to drive safely and recommend necessary adaptive equipment.  

  3. Install Vehicle Adaptations: Based on the driving assessment, your vehicle may need modifications such as hand controls, wheelchair lifts and steering aids. These adaptations help you drive safely and comfortably. You will have to get them installed at a certified installer. Your driving specialist should be able to tell you where that is. 

  4. Legal Requirements: Make sure you have a valid driver’s license and check with driving program and installer that no further steps are required. 

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Vehicle Adaptations: 

  • Hand Controls: For those who cannot use their legs to drive, hand controls can be installed to operate the accelerator and brake with your arms/hands. 

  • Steering Aids: Devices like spinner knobs can assist with steering for those who must use one hand for hand controls, for those with limited hand function or both. 

  • Transfer Aids: Equipment to help individuals transfer from outside the vehicle to inside the vehicle. There are many different types of transfer aids, such as ramps, lifts and seats that move in various directions.  

  • Accessible Vehicles: You can drive any vehicle you want if you can transfer yourself and your wheelchair in/out of the vehicle. 2 door vehicles are easiest, but 4 doors are fine too. Regardless, you should make sure you can get yourself and wheelchair in/out of anything BEFORE YOU BUY! If you cannot load/unload yourself and your wheelchair or don’t have assistance to do so, you need a vehicle with a transfer aid. Vehicles with ramps or lifts can allow individuals to drive from their wheelchair (or driver’s seat)   

 

How to get return to driving expenses paid for 

  • Vocational Rehabilitation is a state program (in every state) that helps people with disabilities get back to work. If you have work goals that require driving, even if that means driving to classes to earn a degree for a job. Vocational Rehabilitation should pay for many of your expenses. They will not purchase a vehicle for you, but they will pay for the cost of the driving program and for the recommended adaptive equipment to be installed into your vehicle. 

  • Veteran’s Affairs finance eligible veteran’s driving program, installation of recommended adaptive equipment and possibly even a vehicle paid for through the VA.  

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Portable Hand Controls

  • Many people use portable hand controls. You can buy them online for around two hundred dollars and install them on your vehicle yourself. Portable hand controls are not as safe as professionally installed hand controls. It is also recommended that you check your state guidelines before installing and using portable hand controls.

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Safety 

  • It is very important that you periodically check your hand controls to make sure they are tight. It doesn’t matter if they are professionally installed or portable hand controls. Portable hand controls may shift or loosen over time and should be checked before every use. Professionally installed hand controls should be visually inspected every month to ensure no parts have loosened. It is also recommended that professional hand controls be inspected once a year by a licensed technician. 

Mental Health

Wheelchair Wellness

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