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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. 

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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.

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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.

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