After SCI | Wheelchair Wellness

After SCI Guide

Inpatient Rehabilitation

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).

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.

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:

Shirley Ryan AbilityLab – Chicago, IL
Craig Hospital – Englewood, CO
Shepherd Center – Atlanta, GA
Kessler Institute for Rehabilitation – West Orange, NJ
TIRR Memorial Hermann – Houston, TX
Spaulding Rehabilitation Hospital – Boston, MA
Brooks Rehabilitation Hospital – Jacksonville, FL
UC San Diego Health – Hillcrest – San Diego, CA
Mayo Clinic – Rochester, MN
University of Washington Medical Center – Seattle, WA

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.

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.

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.

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 Rehabilitation

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.

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

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

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)

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.

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

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)

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!

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.

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)

Online form: https://www.ada.gov

Select file a complaint (upper right of screen)

Email: ada.complaint@usdoj.gov

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:

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).

Contact the property owner/manager:

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

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

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

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.

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).

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

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.

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.

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.

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.

UPPER BODY & NECK STRETCHES

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).

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.

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.

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.

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.

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

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

5. Tilt Table or Standing Tilt Bed

Similar to standing frame but found in hospitals or outpatient clinic
Allows slow acclimation to upright position

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

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.

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

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)

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.

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

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.

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.

Steps to Return to Driving:

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

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.

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.

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.

Transportation

Transportation is one of the biggest barriers to independence for people with spinal cord injuries. Even if your city has buses, Ubers, and ride shares, transportation can still be a challenge.

Common Challenges:

Cost: Wheelchair-accessible vehicles (WAVs) cost too much money!
Time: Paratransit requires 24+ hours’ notice and may be late, waiting for an accessible taxi can take a while, if it’s even available.
Availability: Many areas have no accessible transportation
Space: Taxis or rideshare occasionally cannot fit manual or power chairs
Miscommunication: Drivers may refuse service or not know how to help
Inaccessibility: Sidewalks, curbs, or snow can block access to stops

PUBLIC TRANSPORTATION OPTIONS

1. Fixed Route City Buses – I have had a good experience with Kansas City’s and other cities buses.

Most public buses are ADA accessible
- Low-floor or kneeling buses
- Ramps or lifts
- Priority wheelchair seating
Cheap: Usually $1–$3 per ride

Issues:

Have to be able to get to the bus stop
Ramps that don’t work or drivers who don’t know how to use them – this was never an issue on the buses I have used
Snow, ice, or potholes at stops
Tight schedules, long waits, or inaccessible sidewalks

2. Paratransit Services - Door-to-door or curb-to-curb rides for people with disabilities

Must apply and qualify
Low cost ($2–$5/ride typically)

Challenges:

Must book 24–48 hours ahead
No same-day rides
Long pickup windows (30–60+ min waits)
Can’t make multiple stops
Only available during certain hours

Tip: Always call to confirm your ride. Schedule extra time for medical or work appointments.

3. Accessible Ride-Share Programs

Uber WAV or Lyft Access available in some cities
Allows you to request wheelchair-accessible vehicles
On-demand service (like a typical Uber)
I have had good luck with normal Uber and Lyft and just asking the driver to hold my chair while I get in to make sure I don't scratch their car. Then I give them the option, I can break it down and put it in the back seat or I can help take it apart and you can put it in your trunk. They usually take the second option. I have only been turned away once (out of at least 50 times). The guy wouldn't even speak to me, he just saw the wheelchair and sped off.

Limitations:

Not available in most smaller cities or rural areas
Limited vehicle supply = long waits
Some drivers cancel when they see a wheelchair

Tip: If you’re denied a ride, report it through the app. It’s an ADA violation.

PRIVATE TRANSPORTATION OPTIONS

1. Installing hand controls on a vehicle you can safely transfer into and load your wheelchair into - If your arms are strong and you can load/unload yourself and your chair into the vehicle, all you need is hand controls on your vehicle to drive it. Many states do not require the more expensive professionally installed hand controls. The cheaper portable hand controls you can buy online for $100-200, are a cheaper option in most states. You need to check the laws of your state to make sure they don't specify having professionally installed hand controls. I have never been able to afford a true "Wheelchair Accessible Vehicle" and just put hand controls on a normal vehicle. I have gotten the professionally installed hand controls and a spinner knob paid for through vocational rehabilitation (MO) several times. I have also paid out of pocket for professionally installed hand controls. It has cost me $2000-3000 each time.

2. Buying a Wheelchair-Accessible Vehicle (WAV)

Van with lowered floor, ramp, tie-downs, or power chair lift
New WAV: $60,000–$80,000+
Used WAV: $20,000–$45,000+
May be modified for driving with hand controls or for passenger use

Ways to Afford It:

State vocational rehab programs should help pay for driving program and hand controls (if you work or go to school)
Grants
Veterans Affairs (VA) auto programs for eligible veterans
Medicaid Waivers (varies by state)
Used vehicle classifieds: MobilityWorks, Facebook Marketplace, Ability Center

3. Private Medical Transportation

For non-emergency medical appointments
Vans with ramps and securements
Often covered by Medicaid, insurance, or workers comp
Private-pay rates range $30–$150+ per ride

4. Community or Volunteer Transport Services

Churches, nonprofits, senior centers, and disability organizations may offer:
- Rides to medical appointments
- Grocery or social outing transport
- Volunteer-based van programs

Common Frustrations - and How to Deal

Drivers not trained or refuse to help - Ask for a supervisor, file an ADA complaint

Van doesn’t show up - Always confirm rides in advance; call the transit line ASAP

No accessible options in your area - Ask local officials to expand services—email works!

Buses not stopping at your stop - Keep records, report with dates/times

Resources

National Aging & Disability Transportation Center – www.nadtc.org
MobilityWorks (used/adapted vehicles) – www.mobilityworks.com
United Spinal’s Accessible Vehicle Resources – https://unitedspinal.org/
FTA ADA Paratransit Requirements – https://www.transit.dot.gov/
Reeve Foundation Transportation Grants – www.christopherreeve.org

Final Thoughts

Transportation after SCI can feel overwhelming—but with creativity, community support, and advocacy, you can find a solution that works for your budget and lifestyle.

Whether you rely on yourself, paratransit, or an awesome friend with a van, getting out matters. Transportation = freedom.

Working

You can work after a spinal cord injury. People with SCI are lawyers, doctors, teachers, coders, business owners, mechanics, artists, therapists (like me) and everything in between. Work is good for your finances, your routine, your identity and your mental health. The biggest barriers usually aren't your hands or your legs, they're fear of losing benefits and not knowing your rights.

I have had several jobs since becoming disabled. I was a desk attendant at a rec center and an art museum. Then I worked a desk job in finance. Now I am an occupational therapist (OT). I worked at the Rehabilitation Institute of Kansas City (now Ability KC) for a decade. Now I am starting my own therapy business. When I was newly injured, I didn’t think I could be an OT because of my disability. After playing wheelchair sports and living my life with a disability for 6 years, I changed my mind and was pretty sure it was possible. Many people along the way told me I may never find a job or work as an occupational therapist but I was very eager to prove them wrong. I knew I could thrive in the right setting and with the right support. That is exactly what I did.

Will Working Cost Me My Benefits? (The Fear That Stops Most People)

This is the #1 reason people with SCI don't try working. Social Security has "work incentives" specifically designed to let you TEST working without immediately losing your check or your health coverage. The rules are different for SSDI and SSI, so know which one you have (many people have both). The honest answer to this question is maybe, especially if you do not plan, aren't educated about the ticket to work program and get as much info possible about it. When you start making a certain amount of money whether you have SSI or SSDI, you will start losing your benefits eventually and get hit with overpayment charges that you will have to pay back.

If you have SSDI (you worked and paid in before your injury):

Trial Work Period (TWP): You get 9 months (they don't have to be in a row) to work and earn ANY amount while keeping your full SSDI check. In 2026, a month only counts as a "trial work month" if you earn more than $1,210. You have a rolling 60-month window to use those 9 months.
Substantial Gainful Activity (SGA): After your trial work period, $1,690/month (2026) is the line Social Security uses to decide if you're working "substantially." If you're statutorily blind, it's $2,830.
Extended Period of Eligibility (EPE): For 36 months after your TWP, you automatically get your check back for any month your earnings fall below SGA. This is your safety net.
Medicare keeps going: Your Medicare continues for at least 93 months (over 7 years) after your trial work period starts, even if your cash benefit stops.
Expedited Reinstatement: If your earnings later drop and you have to stop working, you can get back on SSDI quickly without filing a brand-new application.

If you have SSI (need-based):

There's no Trial Work Period. Instead, your SSI check adjusts up or down based on income. Social Security ignores the first $85 you earn each month, then reduces your SSI by only $1 for every $2 you earn. You can earn quite a bit and still get a partial check.
1619(b) lets you keep Medicaid even after your SSI check drops to $0, as long as you still need it and your earnings are under your state's threshold.
Students: The Student Earned Income Exclusion (up to $2,290/month in 2026) lets eligible students under 22 exclude even more.

The bottom line: You MUST report your earnings to Social Security on time. Unreported work is how people get hit with overpayments they have to pay back.

Impairment-Related Work Expenses (IRWE) — Don't Skip This

If you pay out of pocket for things you need in order to work (catheter supplies used at work, a special cushion, transportation, adaptive computer equipment, a modified vehicle, even some attendant care), Social Security can DEDUCT those costs from your countable earnings. That can keep you under SGA while still bringing home more money. Ask a benefits counselor to run your numbers.

Free Help: Ticket to Work and Benefits Counselors

You do not have to figure this out alone, and you shouldn't.

Ticket to Work is a free, voluntary SSA program for people 18–64 on SSDI/SSI. It connects you to Employment Networks and your state Vocational Rehabilitation agency for job placement, resume help and on-the-job support. Call the Ticket to Work Help Line at 1-866-968-7842 or visit choosework.ssa.gov.
A certified Benefits Counselor (also called a WIPA — Work Incentives Planning and Assistance provider) will sit down with you and model exactly how a job affects your specific benefits. This service is free. Use it BEFORE you start working.
Read SSA's free guide, The Red Book (ssa.gov/redbook).

Vocational Rehabilitation — Your Best Resource

Every state has a Vocational Rehabilitation (VR) agency. If you have a work goal, VR can pay for things that get you there: job training, education/tuition, adaptive equipment, assistive technology, even the driving program and hand controls to get you to work (see my Driving and Transportation sections). They will NOT buy you a vehicle, but they cover a lot. VR has paid for my driving program and installation of hand controls and other adaptive equipment. They have also bought me backrests and other equipment to assist me being a therapist.

Saving Money Without Losing Benefits: ABLE Accounts

Normally, having more than $2,000 in the bank can cost you SSI and Medicaid. An ABLE account fixes that. It's a tax-advantaged savings account for people with disabilities.

You can save up to $100,000 without it counting against SSI, and use the money tax-free for disability-related expenses (housing, transportation, equipment, health, education and more).
The 2026 annual contribution limit is $20,000. If you work and don't have a retirement plan, you can add even more through "ABLE to Work."
Big 2026 change: eligibility expanded. You now qualify if your disability began before age 46 (it used to be 26). This opened the door for millions of people who were injured as adults.
Learn more and compare state plans at the ABLE National Resource Center: ablenrc.org.

Finding Work That Fits

Remote and hybrid work changed the game for people with SCI. No commute, no inaccessible office, control over your bowel/bladder timing and pressure relief. Look hard at remote roles.
Self-employment / your own business lets you set your own hours and pace around your body.
Your lived experience is a credential. Peer support, advocacy, accessibility consulting, adaptive sports coaching, and disability services value it directly.
Know your ADA Title I rights (see my ADA section): employers with 15+ employees must provide reasonable accommodations unless it's a true undue hardship. A height-adjustable desk, flexible hours for medical needs, an accessible bathroom, or work-from-home can all be reasonable accommodations.

Tips for Working With an SCI

Protect your body first. A job isn't worth a pressure sore or a wrecked shoulder. Build pressure relief and stretching into your workday. Set phone reminders.
Plan your bowel/bladder routine around your schedule, not the other way around. Know where the accessible bathroom is before day one. I did my bowel program at 5 am for many years to allow me to get to work by 7 am.
Ask for accommodations in writing, kindly and early. Most employers want to help; many just don't know how.
Start part-time or with the trial work period if you're nervous. Test it with the safety net on. Make sure you have plans for when the Trial Work Period runs out including for insurance (you should be able to keep Medicare but need to fill out certain forms to do this and pay out of pocket for it or just rely on work insurance).
Watch your energy. Fatigue is real after SCI. Pace yourself, especially the first few months.

Volunteering

If you're not ready to work, can't work, or just want to do something meaningful with your time, VOLUNTEER. Volunteering gets you out of the house, builds a routine, grows your network, sharpens skills you can later put on a resume, and does something most of us crave after an injury: it lets you be the helper instead of the one being helped. That shift is huge for your mental health.

Why Volunteering Is Worth It

It rebuilds confidence and a sense of purpose.
It does NOT affect your SSDI or SSI benefits (true volunteering, where you're not being paid, doesn't count as earnings).
It's a low-pressure way to test your stamina, schedule and accessibility needs before committing to a paid job.
It expands your community and fights the isolation that hits a lot of us after SCI.
It builds real skills and references.

Where to Volunteer (Especially as Someone With SCI)

Your experience is uniquely valuable in the disability world, but don't box yourself in. You can volunteer anywhere.

Become a peer mentor. United Spinal and the Reeve Foundation both train people with SCI to mentor the newly injured (see my Peer Support section). Few things matter more to someone fresh out of the hospital than talking to someone who's living it.
Disability NonProfits - Help disability related organizations in your community. The smaller the organization, the more they need the help!
Adaptive sports and rec programs always need help coaching, scoring, organizing and cheering.
Independent Living Centers (ILCs) are run by and for people with disabilities and rely on volunteers for advocacy, peer support and outreach. Find yours at the directory on ilru.org.
Disability advocacy — testify, write, sit on an accessibility board, review your city's curb cuts and transit. Your lived knowledge IS the expertise here.
Hospitals and rehab units love peer visitors who've been through SCI.
Anything you already care about — animal shelters, food banks, libraries, churches, schools, your kid's activities. You belong in all of it.
Virtual volunteering — moderating online support groups, mentoring by video, writing, designing, phone-banking. Great if transportation or weather is a barrier.

Tips for Volunteering Successfully

Be honest about your capacity. Tell them how many hours and what days work, and what you need to be successful. Good organizations adapt.
Scout accessibility first. Ask about ramps, bathrooms, parking and the actual workspace before your first day.
Start small. One shift a week is plenty to begin. You can always add more.
Treat it like a job if you want it to become one. Show up, be reliable, and you'll have references and skills when you're ready to get paid.
Protect your body and your routine the same way you would at a paid job — pressure relief, bathroom timing, energy.

I volunteer much of my time, even when I was working full time. My recommendation is to find disability non-profits or adaptive sports organizations to volunteer for. I have learned so much valuable information about disability and made a huge impact in my community. You get to meet cool people too.

Giving your time back is one of the fastest ways I know to feel like yourself again.

Peer Support

I'll say what I said in my Community section, because it's that important: you are not alone, and the people who will teach you the most are other people living with SCI. I learned more practical, life-changing stuff from other disabled people than I ever learned in therapy, and my therapists were great. Doctors and OTs know the medicine. Peers know what it's actually like to live this.

What Peer Support Actually Does

Practical hacks you won't find in a textbook — transfers, gear, travel, bowel/bladder tricks, dating, parenting, getting yourself and your chair into a car.
Emotional support from people who GET IT. Your family loves you, but they don't fully understand. Peers do.
Proof that life goes on. Meeting someone years post-injury who's working, traveling, raising kids and having fun does more for hope than any pep talk.
A network for jobs, equipment, doctors, resources and advice.

Two Kinds: Peer Mentoring vs. Support Groups

Peer Mentoring (one-on-one) matches you with an individual who has a similar injury, age, gender and lifestyle. Great when you have specific questions or want a steady relationship with someone a little further down the road than you.

Support Groups (one-to-many) gather a bunch of people, in person or online, to share and learn together. Great for community, ongoing connection and hearing lots of perspectives.

Use both. Different days call for different things.

Where to Find Peer Support

United Spinal Association — one-on-one peer mentoring matched to your injury, gender and lifestyle, plus virtual support groups happening most days. unitedspinal.org, 800-962-9629.
Christopher & Dana Reeve Foundation / National Paralysis Resource Center — free peer mentors (for you, family AND caregivers), a virtual support group, and Information Specialists who'll answer almost anything. Request a mentor at christopherreeve.org; call 800-539-7309. Their free Paralysis Resource Guide is excellent — get it.
Your rehab hospital. Most SCI Model System hospitals run peer mentor programs and can connect you during or after your inpatient stay. Ask.
Backbones — connects people with SCI through peer support and events (backbonesonline.com).
Facing Disability — thousands of video interviews with people living with SCI and their families, plus peer connection (facingdisability.com).
Online communities — r/SpinalCordInjury on Reddit and dozens of active SCI Facebook groups. (Spinal Cord Injury USA = my favorite)
Wheelchair Wellness has a free monthly support group, ran by me. Sign up on the Events Page.
How to Get the Most Out of Peer Support

Come with questions, but also just listen. The best stuff comes up when people are swapping stories.
Don't compare injuries. Different levels, different bodies, different lives. Take what applies to you and leave the rest.
Give back as you go. Even a few months in, you know things the person behind you doesn't. Becoming a mentor yourself is one of the most healing things you can do.
If one group isn't your vibe, try another. They all have different personalities. Find your people.

Find your community. It changes everything.

Mental Health

Why Mental Health Matters After SCI - Spinal cord injury does not just affect the body it affects your entire sense of self, relationships, daily routines, goals, and emotions. No matter how tough or independent you are, taking care of your mental health is part of the healing process. Just like physical rehab, your mind needs time, space, and tools to adjust.

Common Mental Health Challenges After SCI

It is normal to feel a mix of emotions, sometimes all in one day. You are not alone. Feeling these things does not make you weak. It makes you human.

Sadness/Depression - Feeling unmotivated, hopeless, or like life has no direction. Not enjoying things you used to. Crying without knowing why.

Anger/Frustration - “Why did this happen to me?” Snapping at people, feeling rage, or feeling like no one understands.

Anxiety - Worrying about the future, money, relationships, or health. Trouble sleeping. Overthinking or “what-if” spirals.

Grief - Mourning the loss of your former body or lifestyle. Feeling disconnected from who you were.

Isolation - Feeling like you can’t go out or be part of things anymore. Avoiding people or conversations.

Guilt - Feeling like a burden on loved ones or guilty for needing help.

What Helps Mental Health After SCI?

***1. Try Counseling (If You’re Open to It)***

Counseling is not just “talking about your feelings.” It’s:

Learning coping tools to handle tough days

Working through anger, loss, and fear

Setting new goals and routines

Navigating relationship changes

Managing grief or trauma from the injury

Types of counseling to try after SCI:

Cognitive Behavioral Therapy (CBT)

Grief counseling

Trauma-informed therapy (especially if injury was sudden or violent)

Couples/family therapy

Telehealth therapy (via phone or video)

Covered by most insurance and Medicaid/Medicare. Can be just when needed.

You don’t need to be in a crisis to go to therapy, you just need to be willing to grow.

2.  Talk About It, With Someone You Trust

You don’t have to go to therapy to open up. You can talk to:

A friend or family member

A peer mentor who’s also living with SCI

A support group (in person or online)

3. Not Ready for Therapy? That’s OK. Try This Instead:

Journal your thoughts and emotions privately

Write a letter to your “old self” or to your injury

Watch YouTube videos from other wheelchair users

Listen to podcasts about SCI, mental health, or resilience

Read blogs/books written by others with disabilities

Try music, art, or mindfulness apps like Headspace or Insight Timer

4. Move Your Body, Move Your Mind

Exercise is one of the best tools for mental health:

Releases endorphins (your brain’s natural antidepressants)

Reduces anxiety and stress

Builds confidence and motivation

5. Connect With People Who “Get It”

The SCI world is full of smart, funny, strong people who understand what you’re going through.

Find your community:

Local peer groups (e.g. United Spinal Chapters, Reeve Foundation Meetups)

Online support groups (Facebook, Reddit, Instagram)

Adaptive sports teams or community events

VA-sponsored groups for veterans with SCI

“My friends didn’t get it. Meeting others in chairs helped me find myself again.”

6. Know When to Get Help Immediately

If you ever feel:

Like life isn’t worth living

Hopeless, helpless, or stuck

That you’re thinking about hurting yourself or someone else

Reach out immediately. Your life matters. You are not alone.

📞 988 Suicide & Crisis Lifeline (Call or text 988 — available 24/7)

💻 988lifeline.org

🏥 Go to the ER or call 911 if needed

7. Set Mental Health Goals Each Week

Goal Examples:

“I’ll call a friend”
“Join online support group.”
“Write 3 things I’m grateful for today.”
“Do 10 minutes of exercise every other day”
“Try a 5-minute guided meditation or deep breathing”
“Identify one thing that’s going well and one challenge”

🔗 Resources

United Spinal Association Peer Mentors – https://unitedspinal.org

Christopher & Dana Reeve Foundation – https://www.christopherreeve.org

Mental Health America – https://www.mhanational.org

Headspace (guided meditations) – https://www.headspace.com

SCI Connect Reddit – https://www.reddit.com/r/SpinalCordInjury/