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Living With a Spinal Cord Injury

Overview

What is a spinal cord injury?

A spinal cord injury (SCI) is damage to the spinal cord. The spinal cord is a soft bundle of nerves that goes from the base of the brain to the lower back. It runs through the spinal canal, a tunnel formed by holes in the bones of the spine. The bony spine helps protect the spinal cord.

The spinal cord carries messages between the brain and the rest of the body. This allows you to move and to feel touch, among other things. A spinal cord injury stops the flow of messages below the site of the injury.

The closer the injury is to the brain, the more of the body that is affected.

  • Injury to the middle of the back usually affects the legs. This is called paraplegia.
  • Injury to the neck can affect the arms, chest, and legs. This is called quadriplegia.

A spinal cord injury may be complete or incomplete. A person with a complete injury doesn't have any feeling or movement below the level of the injury. In an incomplete injury, the person still has some feeling or movement in the affected area.

What causes it?

An SCI usually happens because of a sudden, severe blow to the spine. Broken or dislocated bones of the spine (vertebrae) may damage the spinal cord. Often this is the result of a car crash, fall, gunshot, or sporting injury. Sometimes the spinal cord is damaged by infection or spinal stenosis, or by a birth defect such as spina bifida.

How is it diagnosed?

A computed tomography scan (CT scan) and magnetic resonance imaging (MRI) may be done right away to help find out the extent of the injury.

You will be tested to see how you respond to pinpricks and light touch all over your body. The doctor will ask you to move different parts of your body and test the strength of your muscles. These tests help the doctor know how severe the injury is. They help determine how likely it is that you could get back some feeling and movement.

How is a spinal cord injury treated?

At the hospital, treatment for an SCI starts right away to prevent more damage to the spine and spinal cord. Steps are taken to get your blood pressure stable and help you breathe. You may get a steroid medicine to reduce swelling of the spinal cord. When a spinal cord injury is caused by a serious trauma, treatment for other injuries is often needed.

As soon as you are stable, rehabilitation (rehab) starts. The goal of rehab is to help prepare you for life after rehab and help you be as independent as possible. What happens in rehab depends on your level of injury.

What is life like when you have a spinal cord injury?

Having an SCI changes some things forever. But you can still have a full and rewarding life. Many people with spinal cord injuries are able to work, drive, play sports, and have relationships and families. But it takes time to adjust. Your rehab team can provide the support, training, and resources to help you move toward new goals. It's up to you to make the most of what they have to offer.

A saying among people who have a spinal cord injury is, "Before your injury, you could do 10,000 things. Now you can do 9,000. So are you going to worry about the 1,000 things you can't do or focus on the 9,000 things you can do?"

Adapting to life with a spinal cord injury can be tough. You can expect to feel sad or angry at times or to grieve for your lost abilities. It is important to express these feelings so they don't keep you from moving ahead. Talk with family and friends, find a support group, or connect with others online. Talking to other people who have spinal cord injuries can be a big help.

It's hard to enjoy life if you have ongoing pain or depression. If you do, tell your doctor. There are medicines and other treatments that can help.

Rehabilitation

As soon as you are stabilized after your SCI, your transition into rehabilitation (rehab) begins. At first, the focus of rehab is to prevent other problems related to your SCI. And it helps you relearn how to do daily tasks, sometimes by using different muscle groups.

Rehab helps you adjust to life with less movement and feeling than you had before. What you'll do in rehab depends on which part of your spine was injured. Rehab can include learning how to:

  • Prevent other problems related to your spinal cord injury. You'll learn to manage bowel and bladder function and to build strength, endurance, and flexibility. You may also learn how to handle problems such as pressure injuries, urinary tract infections, and muscle spasticity.
  • Do daily tasks. These include how to cook, brush your teeth, and move from a wheelchair to a bed or chair.
  • Prepare for life after rehab. You'll learn ways to cope with your feelings, communicate your needs, and be physically and emotionally intimate.

Rehab centres

Rehab for an SCI most often takes place in a special centre. You'll be given a plan designed for your recovery. This plan will help you recover as much function as possible and prevent other problems. It can help you do as many things for yourself as possible.

Choosing the right rehab centre is important. Be sure that you choose one that meets your specific needs. Before you choose a rehab centre, ask questions about its staff, accreditation, and activities. Find out how it transitions you back into your community.

Your rehab team

You and your family will work with a rehab team, which includes different types of health professionals. Your team helps design your recovery plan. They'll be there to help you and answer your questions.

A rehab team includes:

A rehabilitation doctor.

This doctor is in charge of your medical care. This is often a physiatrist (a doctor who specializes in physical medicine and rehab).

A rehabilitation nurse.

This is a nurse who specializes in providing care for people with disabilities. They can also educate you and your family about an SCI and help the doctor coordinate medical care.

A physiotherapist.
This therapist evaluates and treats problems with movement, balance, and coordination. They provide training and exercises to improve mobility, such as using a wheelchair or moving from a wheelchair to other locations. The therapist also teaches family members how to help with your exercise, if needed.
An occupational therapist.

This therapist helps you learn new ways of doing daily tasks, such as eating, bathing, dressing, writing, or cooking. You may work on strengthening your upper body and arms.

A speech-language therapist.

This person helps you relearn how to chew and swallow food and relearn language skills. You'll learn other ways to communicate if your spinal cord injury has affected the muscles that control your mouth, throat, and neck. This is not always necessary.

A social worker.

This person can help you make decisions about rehab and help you plan your return to home or a new living place. They can help you with questions about provincial health plans and other financial issues and can help arrange for support services. Social workers also provide or arrange for counselling to help you deal with any emotional problems.

A recreation specialist.

This person helps you return to activities that you enjoyed before the SCI. You'll use the skills you are learning in other areas (such as physiotherapy or occupational therapy) to do your hobbies. They can help you return to community life by taking you shopping or to the movies, for example.

A licensed counsellor.

A counsellor helps you and your family deal with the emotional effects of your SCI. Counsellors can help identify and understand emotional problems. They may treat thinking or memory problems.

Choosing a rehab centre

Rehabilitation (rehab) for an SCI is typically done in a special centre. You and your family work with a rehab team, a group of health professionals that designs a unique plan for your recovery.

The rehab centre should be able to meet your special needs. Keep this in mind as you decide about a rehab centre. You can ask questions about its staff, accreditation, equipment, activities, programs, and how it transitions you back into your community. Here are some questions you may ask.

General questions

  • Does your centre treat only those with an SCI? If it treats others, are people with an SCI kept in different areas?
  • What can you tell me about the patients in your centre, such as their ages? Do most of them have a specific level of injury?
  • How many SCIs do you treat in a year?
  • Is your centre certified by the Commission on Accreditation of Rehabilitation Facilities (CARF Canada) or Accreditation Canada?
  • Does your rehab plan have both short- and long-term goals?
  • Does your centre encourage family members of all ages to participate in rehab programs?
  • Are there living arrangements for family members participating in training?
  • Are counselling and other social services available to family members?
  • Could I speak to someone who has gone through your program?

Questions about staff

  • Does your regular staff have training in SCIs?
  • Do you have trained SCI specialists/therapists? In what areas? (Important areas include physical, occupational, speech-language, and recreational therapies; counselling; and social work.)
  • What kind of and how much experience do your specialists/therapists have?
  • How many people is each specialist/therapist presently caring for?
  • Who is your director and what is their background?

Questions about activities and transition into the community

  • How often and for how long each day will I receive specialist treatment?
  • How much training will my family and I receive on sexuality, bowel and bladder care, skin care, and essential self-care activities?
  • Do you hold weekend and evening activities?
  • Do you have a facility available where my family and I can practice self-care skills?
  • Do you offer training in the management and hiring of personal care assistants?
  • How will you plan my discharge and transition into the community? Who do you work with in the community?
  • If I don't live in the community where the centre is, how will my transition be planned?
  • Will I receive self-care materials when I leave the centre?
  • After I leave, will I have a contact person at the centre for questions or emergencies?
  • Will someone make recommendations as to how I may need to modify my home?
  • Will you provide a follow-up plan? What will it include?

Learn more

Bladder Care

Bladder problems are one of the biggest concerns for people who have an SCI.

Normally, the kidneys filter waste products and water from the blood to form urine, which is stored in the bladder. When the bladder is full, a message is sent from the bladder to the brain. The brain sends a message back to the bladder to squeeze the bladder muscle and relax the sphincter muscles that control the flow of urine. After the bladder starts to empty, it normally empties all of the urine.

After an SCI, the kidneys usually continue to filter waste, and urine is stored in the bladder. But messages may not be able to move between your bladder and sphincter muscles and your brain. You may not be able to:

  • Store urine. You cannot control when your bladder empties (reflex incontinence). This is known as reflex or spastic bladder.
  • Empty the bladder. Your bladder is full, but you can't empty it. It stretches as it continues to fill with urine, which can cause damage to the bladder and kidneys. This is known as a flaccid bladder.

You may have problems, such as urinary tract infections (UTIs), kidney and bladder problems, sepsis (a bloodstream infection), and, in rare cases, kidney failure.

Bladder problems can also trigger autonomic dysreflexia, which causes sudden very high blood pressure and headaches. If not treated quickly and correctly, it may lead to seizures, stroke, and even death. These complications are rare, but it's important to know the symptoms and watch for them.

Bladder care programs

A bladder management program lets you or a caregiver empty your bladder when it is easy for you. And it helps you avoid bladder accidents and prevent urinary tract infections (UTIs). The most important things in bladder management are to monitor the amount of fluids you drink, follow a regular schedule for emptying your bladder, and be sure that you empty your bladder completely. Your rehabilitation (rehab) team will help you set up a schedule based on your needs and the amount of fluids you typically drink.

You and your rehab team can decide which bladder management program is best for you. You need to think about where your spinal cord is injured and how it has affected your bladder function. You also need to think about your lifestyle, how likely you are to get bladder infections, and whether you or a caregiver is able to use a catheter. You may use just one method or a combination.

Common ways to manage bladder function include:

An intermittent catheterization program (ICP).

An ICP is often used when you are able to use a catheter yourself or when someone can do it for you. The catheter is a thin, flexible, hollow tube. You insert it through the urethra into the bladder and allow the urine to drain out. This is done at scheduled times, and the catheter isn't permanent.

An indwelling Foley catheter.

If you can't use intermittent catheterization, you can use this type of permanent catheter. Urinary tract infections are more likely to occur with long-term use of an indwelling catheter than with an ICP.

A suprapubic indwelling catheter.

If you use an indwelling Foley catheter, you may be able to change to this type of catheter after a period of time. This is a permanent catheter that is surgically inserted above the pubic bone directly into the bladder. It does not go through the urethra.

A urostomy.

If you can't use intermittent catheterization and can't (or don't want to) use an indwelling catheter, you may be able to choose surgery that creates a urostomy. An opening (stoma) is made between your bladder and the skin of your belly. Urine then drains into a bag attached to your skin at the stoma. Intermittent catheterization can be used through the stoma, if needed.

A condom catheter.

This can be used if you have a penis. It is only for short-term use, because long-term use increases the risk of problems. This includes UTIs, damage to the penis from friction with the condom, and a block in the urethra.

Techniques to trigger the bladder.

If you have a spastic bladder, you may be able to "trigger" the bladder to contract. This way you can avoid having to use a catheter. To do this, you can try tapping on the bladder area, stroking your thigh, or doing push-ups in your wheelchair. Or you can use Valsalva manoeuvres, which are efforts to breathe out without letting air escape through the nose or mouth.

Absorbent products.

Products such as adult diapers may sometimes be used.

Bladder problems can also trigger autonomic dysreflexia, which causes sudden very high blood pressure and headaches. If not treated quickly and correctly, it may lead to seizures, stroke, and even death. These problems are rare, but it's important to know the symptoms and watch for them.

Medicines

Medicines may be used to help you manage your bladder. They may include:

Anticholinergics, such as oxybutynin.

These calm the bladder muscles. They may prevent uncontrollable bladder spasms that force urine out of the bladder.

Cholinergics, such as bethanechol.

These can help the bladder to squeeze, forcing out urine. When cholinergics are used, other medicines may also be used to help relax the muscles that hold urine in the bladder. These include alpha-blockers (for example, terazosin) and botulinum toxin.

Learn more

Watch

Bowel Care

You or a caregiver can manage bowel problems caused by an SCI. This can help you prevent unplanned bowel movements, constipation, and diarrhea. Although managing these problems may seem overwhelming at first, knowing what to do and establishing a pattern makes bowel care easier and reduces your risk of accidents.

An SCI may affect the process of eliminating waste from the intestines. This can cause:

  • A reflexive bowel. This means you cannot control when a bowel movement occurs.
  • A flaccid bowel. This means you can't have a bowel movement. If stool remains in the rectum, mucus and fluid will sometimes leak out around the stool and out the anus. This is called fecal incontinence.

Bowel care programs

When choosing how to deal with bowel problems, you and your rehabilitation (rehab) team will discuss things such as the type of bowel problem you have, your diet, whether you or a caregiver will do the program, and any medicines that may affect your program.

  • For a reflexive bowel, you may use a stool softener, a suppository to trigger the bowel movement, and/or stimulation with your finger (digital stimulation). There are many stool softeners and suppositories available. You will have to experiment to find what works best for you.
  • For a flaccid bowel, you may use digital stimulation and manual removal of the stool. At first, you do this program every other day. Later, you may need to do it more often to prevent accidents. You may also have to adjust how much and when you eat.

Eating more fibre can help some people who have spinal cord injuries manage their bowel habits. Good sources of fibre include whole grain breads and cereals, fruits, and vegetables.

For the best results:

  • Do your program at the same time every day. Most people do their bowel program in the morning. Doing it after a meal can take advantage of a natural bowel reflex that happens after eating. Choose the most convenient time for you, and stay with it.
  • Sit up if possible. This can help move the stool down in the intestine. If you cannot sit up, lie on your side.

Taking care when emptying your bowel

It is important to be clean and gentle when inserting anything into the anus.

  • Always wash your hands and use gloves. Lubricate the finger of the glove with K-Y jelly or a similar product.
  • For digital stimulation, gently insert the finger in the anus and move it in a circular motion for no more than 10 to 20 seconds every 5 to 10 minutes until you have a bowel movement.
  • To remove stool, gently insert the finger and remove stool. Continue to do so until none comes out. Wait a few minutes and then try again to see if any more stool has moved down.
  • To insert a suppository, first remove stool. Otherwise, the suppository won't work. Take the wrapper off the suppository and insert it as high in your rectum as you can.

Bowel problems can trigger autonomic dysreflexia, which causes sudden very high blood pressure and headaches. If not treated promptly and correctly, it may lead to seizures, stroke, and even death. These complications are rare, but it is important to know the symptoms and watch for them.

Learn more

Pressure Injuries

When you have an SCI, the nerves that normally signal discomfort and alert you to relieve pressure by changing position may no longer work. This can cause pressure injuries.

These are injuries to the skin and the tissue under the skin. They often develop on skin that covers bony areas, such as the hips, heels, or tailbone. Pressure injuries can also occur in places where the skin folds over on itself. They are described in four stages that range from mild reddening of the skin to severe complications, such as infection of the bone or blood. They can be hard to treat and slow to heal.

Pressure injuries may be caused by:

  • Constant pressure on the skin. This reduces blood supply to the skin and to the tissues under the skin.
  • Friction. This is the rubbing that occurs when a person is pulled across bed sheets or other surfaces.
  • Shear. This is movement (such as sliding down a chair) that causes the skin to fold over itself, cutting off the blood supply.
  • Irritation of the skin. This comes from things such as sweat, urine, or feces.

Pressure injuries can trigger autonomic dysreflexia, which causes sudden very high blood pressure and headaches. If not treated quickly and correctly, it may lead to seizures, stroke, and even death. These complications are rare, but it is important to know the symptoms and watch for them.

Preventing pressure injuries

You or your caregiver can help prevent pressure injuries. These tips can help keep skin healthy when you have an SCI.

  • Prevent constant pressure on any part of the body.
    • Change positions and turn often to help reduce constant pressure on the skin. Learn the proper way to move yourself or to move a person you are caring for so that you avoid folding and twisting skin layers.
    • Learn positions that relieve pressure on bony parts. Do them often during the day.
    • Spread body weight. Use pressure-relieving supports and devices, especially if you are confined to a bed or chair for any length of time. Pad the metal parts of a wheelchair to help reduce pressure and friction.
    • Sleep on your side with a pillow between your knees.
    • Make sure your clothes fit well and don't have thick seams that might hurt your skin.
    • Wear stiff shoes that have plenty of room in them to protect your feet.
  • Be aware of your position.

    Avoid sliding, slipping, slumping, or being in positions that put pressure directly on an existing pressure injury. Try to keep the head of a bed, a recliner chair, or a reclining wheelchair raised no more than 30 degrees.

  • Eat a balanced diet that includes plenty of protein.
  • Don't smoke or use tobacco products.
  • Get help for depression, or alcohol or drug misuse.

    Ask your doctor about treatment.

  • Keep the skin clean.
  • Try lotions or creams.

    Use skin lotions to keep the skin from drying out and cracking, which makes the skin more likely to get pressure injuries. Barrier lotions or creams have ingredients that can act as a shield to help protect the skin from moisture or irritation.

  • Watch for early signs of a pressure injury. Check your skin twice a day.

    These include:

    • A new area of redness that doesn't go away within a few minutes of taking pressure off the area.
    • An area of skin that is warmer or cooler than the surrounding skin.
    • An area of skin that is firmer or softer than the skin around it.

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Lung Care

Breathing is usually something we do without thinking. But an SCI may affect some of the muscles needed for breathing. This makes it hard to breathe, cough, and bring up mucus from the lungs, which leads to a greater risk of lung infections such as pneumonia.

How your breathing muscles are affected and how it may change your ability to breathe depends on which part of your spine was injured.

  • People with injuries lower on the spinal cord (below T12) usually don't lose control of these muscles and have no trouble breathing.
  • People with SCIs high on the neck may need a ventilator.
  • People with injuries between these levels have a partial loss of the breathing muscles. But they can usually still breathe on their own.

Preventing lung problems

A spinal cord injury (SCI) may affect some of the muscles needed to breathe, cough, or bring up mucus from the lungs. This can increase the risk for lung problems. There are things you can do to help prevent lung problems. Ask your respiratory therapist about coughing and breathing exercises that are right for you.

  • Know the symptoms of pneumonia.

    If you have the symptoms, contact your doctor right away. Ask about getting vaccinated for COVID-19, pneumonia, and influenza (flu).

  • Practice coughing.

    A forceful cough is important, because it will help you bring up mucus in the lungs. This can help prevent some lung problems. If your cough is weak and you have trouble bringing up mucus, you may need an assisted cough. This means that a caregiver helps you cough. If you have enough strength, you may be able to do a self-assisted cough.

  • Remove excess mucus from the lungs.

    Coughing may not bring up all the mucus. In this case, you may need chest physiotherapy with percussion and/or postural drainage. Talk to your doctor about these techniques.

  • Don't smoke.
  • Practice breathing exercises such as:

    Diaphragmatic breathing (belly breathing). This helps your lungs expand so that they take in more air. It also helps strengthen your diaphragm. Your diaphragm is a large muscle that separates your lungs from your belly. It helps draw air into your lungs as you breathe.

  • Sit up straight, and move around as much as possible.

    This helps prevent mucus buildup.

  • Eat a healthy diet.

    Eating healthy foods will help keep you from gaining or losing weight. Being either overweight or underweight can lead to lung problems.

  • Drink plenty of fluids, preferably water.

    This helps prevent the mucus in your lungs from getting thick. And it makes the mucus easier to cough up. If you have concerns with bladder control, talk to your doctor about how much and when to drink fluids.

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Intimacy and Fertility

After a spinal cord injury, how you look and what you're able to do changes. An SCI may also affect your sexual function.

Desire and sexual arousal

Usually, men and women are sexually aroused through two pathways. One way is through direct stimulation of the genitals or other erotic area. The other way is through thinking, hearing, or seeing something sexually arousing. In men, this usually causes an erection. In women, it causes lubrication of the vagina and swelling of the clitoris.

An SCI can affect either of these pathways and may change a person's physical response to arousal. Most people remain interested in sexual activity after an SCI. But the level of interest may decrease.

Men who are able to have an erection may find that it isn't rigid enough or doesn't last long enough for sexual activity. Some have retrograde ejaculation. This means that semen goes into the bladder instead of out through the penis. Many men with an SCI resume sexual activity within about 1 year of the injury.

Women may have some, or complete, loss of vaginal sensation and muscle control. Both men and women can achieve orgasm. But it may not be as intense as before the SCI.

Sexual function and intimacy

All spinal cord injuries are different. How they affect intimacy and sexual function varies. And different people will react to the change differently. Because of this, you need to make your own observations about your experiences to understand your changes in sexual function and how to best deal with them.

Changes in sexual function often result in frustration, anger, and disappointment. This can strain a relationship. People with SCIs may wonder if they will be able to maintain the relationship they are in or develop new ones.

But being intimate means more than just having sex. Your interests, ideas, and behaviour play a greater role in defining you than your appearance or your ability to have sex. A relationship depends on many things, including shared interests, how you deal with personal likes and dislikes, and how you treat each other.

The most important thing in a relationship is how well you communicate. Talk to your partner. Be honest about how the SCI has affected your sexual function and how you feel about it. People who have an SCI can have intimate relationships. They can have an active sex life and have children.

Your sex life will probably be different after your spinal cord injury. But sexual intimacy is still possible if you want it. Your rehabilitation centre may have a counsellor or other health professional who specializes in sexual health after an SCI. They may be able to help you and your partner with these issues.

Treating sexual problems

After a spinal cord injury, how you look and what you're able to do changes. An SCI may also affect your sexual function.

People who can't get an erection can use treatments for erection problems. These include:

  • Phosphodiesterase-5 inhibitors (PDE-5 inhibitors). Examples are sildenafil (Viagra), vardenafil (Levitra), and tadalafil (Cialis).
  • Medicines you inject into the penis. Examples are alprostadil (Caverject) and papaverine.
  • Medicine you insert into the penis. One example is alprostadil (prostaglandin E1).
  • Vacuum devices. These help blood flow into the penis.
  • Penile implants. They are rigid or semirigid cylinders implanted into the penis.
  • Vibrators.

People who have problems being aroused and who have little or no vaginal lubrication may use:

  • A vibrator.
  • A lubricant, such as Astroglide or K-Y Jelly. Lubricants can be water-, silicone-, or oil-based.

Always talk to a doctor familiar with SCIs before using any medicines, lubricants, or devices. Discuss the location of your injury, possible side effects, and any other medical conditions you have.

Anyone can use sensual exercises. You do them with your partner to find areas of your body that react to stimulation.

You also need to watch for autonomic dysreflexia, which causes sudden very high blood pressure. If not treated promptly and correctly, it may lead to seizures, stroke, and even death. These complications are rare. But it's important to know the symptoms and watch for them.

Getting pregnant

An SCI usually won't affect your ability to get pregnant. You may have a brief pause in your menstrual cycle after an SCI. But after your period returns, you will probably be able to get pregnant.

If you are sexually active after your injury, make sure to use birth control if you don't want to get pregnant.

If you do want to get pregnant, make sure to be aware of the special medical, psychological, and social issues involved in an SCI pregnancy. Work with doctors who understand these issues. Common concerns and complications during pregnancy include:

  • Urinary tract infections (UTIs). These are more common during pregnancy in people with SCIs. Your urine should be tested often.
  • Pressure injuries. The extra weight of pregnancy puts greater pressure on the skin. It may increase the risk of pressure injuries. Be sure to perform skin exams regularly.
  • Mobility devices. The weight gain of pregnancy may mean that you need to change the type of mobility device you use. You may also have to change your transfer technique.
  • Lung function. People with damage higher on the spinal cord may have reduced lung function. Ventilator support may be needed.
  • Autonomic dysreflexia. During labour, the symptoms of this condition may be the same as those seen in uterine contractions. Anesthesia should be used during labour to prevent this serious condition.

Sperm quality and ejaculation problems

You may have poor sperm quality and have trouble ejaculating. Penile stimulation can be used to obtain sperm for assistive reproductive technologies. Special vibrators can be used to cause ejaculation.

Vibrators can damage your skin. So use them carefully if you don't have feeling in your penis.

If vibrator stimulation doesn't work, rectal probe electroejaculation (RPE) is an option. In this procedure, your doctor inserts an electrical probe into the rectum. This can stimulate ejaculation.

Learn more

Life With a Spinal Cord Injury

Grieving

Grief is one of the many challenges of adjusting to life after an SCI. It's your reaction to loss. It affects you both emotionally and physically. But letting your emotions control you can result in unhealthy decisions and behaviour. You may have a longer rehab. And it may take you longer to adjust to your SCI. Being aware of your emotions, and talking to others about them, will help you feel more solid and in control.

Talking to a professional counsellor who understands the challenges of living with an SCI can be very helpful during tough times.

Chronic pain

Pain in an SCI can be complicated and confusing. You may feel pain where you have feeling. But you may also feel pain in an area where otherwise you have no feeling. The pain may be severe at some times. But at other times it may disappear or bother you only a little.

The most common type of pain is neuropathic pain around the injury. This pain is caused by damage to the nervous system.

Other types of pain include:

  • Musculoskeletal pain. This occurs in the bones, joints, and muscles.
  • Visceral pain. This occurs in the belly.

Don't ignore your pain. Talk to your doctor about it. The doctor can help figure out the type of pain and how to manage it. Also, pain can signal a more serious problem.

Strength and flexibility

Movement keeps your muscles strong and your joints flexible. When you have an SCI and can't move your muscles and joints easily, you may lose strength and some of your range of motion. This makes it harder to perform daily activities, such as getting dressed or moving from your wheelchair to other locations.

With exercise, you can keep or improve your flexibility. You can also reduce muscle spasticity. Exercise can also help prevent heart problems, diabetes, pressure injuries, pneumonia, high blood pressure, urinary tract infections, and weight problems.

What exercises you can do will depend on what part of your spinal cord was injured. You may be able to do:

  • Flexibility exercises on your own or with help.
  • Strength exercises with free weights or weight machines.

Taking part in sports is also a great way to exercise. Some places have leagues or groups that promote wheelchair basketball and racing and other activities. Staying active provides both physical and emotional benefits.

Exercise may trigger autonomic dysreflexia. This condition can cause sudden very high blood pressure and headaches. If not treated promptly and correctly, it may lead to seizures, stroke, and even death. These complications are rare. But it's important to know the symptoms and watch for them.

Healthy eating

Eating a healthy diet can help you reduce your risk of some complications from a spinal cord injury. It can also make other tasks, such as bowel management, easier. And it can help you reach and stay at a healthy weight. Being either underweight or overweight increases your risk of pressure injuries.

If you have special nutritional needs, such as needing extra protein or fibre, a registered dietitian can help you plan a diet.

Mobility

Being able to move lets you take part more fully in community life and do the things you would like to do.

Mobility devices, such as crutches, walkers, wheelchairs, and scooters, can help you be more independent. They may allow you to work, shop, travel, or take part in sports. Your rehab team can help you find the devices that best fit your needs.

Most people with an SCI use a wheelchair at some point. Even if you can get around with a walker, there will probably be times when you need a wheelchair.

Many people with an SCI are able to drive with special modifications to their vehicle. If you feel you can drive, talk to your occupational therapist or case manager. You will probably have to go through a program that evaluates your ability to drive safely.

Adapting your home

Because you may have to use a wheelchair and have limited movement and feeling, you may have to adapt your home. Talk with your rehab team about what you may need.

Here are some things that can help.

  • Ramps and widened doorways can make it easier to use a wheelchair in your home.
  • Lowered stoves, sinks, and countertops can help make cooking and preparing meals easier.
  • Assistive devices can help with eating, bathing, grooming, dressing, and writing. For example:
    • Special handles can help you hold cups, utensils, toothbrushes, hairbrushes, or pens.
    • Velcro fasteners, zipper pulls, and other tools can make clothing easier to manage.
    • Reachers can help you pick up faraway things and small objects.
    • Some devices can help you turn on and adjust electric appliances, like TVs and computers.

Planning for the future

Today, with improved medical care and support, the outlook for people with an SCI is better than ever.

So it's important to plan ahead for your care and other life goals. If you plan to work, you have the same legal rights on the job as before your injury. People with an SCI who want to work are legally protected from discrimination by the Employment Equity Act.

Plan ahead for possible serious and life-threatening complications. You, your family, and your doctor should discuss what types of medical treatment you want if you have a sudden, life-threatening problem. You may want to create an advance care plan. It allows you to state your wishes if you become unable to communicate.

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When to Call a Doctor

Be prepared to call your spinal care injury provider, 911, or other emergency services if you or the person with the spinal cord injury has the symptoms of autonomic dysreflexia, which causes sudden very high blood pressure. If it isn't treated promptly and correctly, it may lead to seizures, stroke, and even death. Symptoms include:

  • A pounding headache.
  • A flushed face and/or red blotches on the skin above the level of spinal injury.
  • Sweating above the level of spinal injury.
  • Nasal stuffiness.
  • Nausea.
  • A slow heart rate (bradycardia).
  • Goose bumps below the level of spinal injury.
  • Cold, clammy skin below the level of spinal injury.

Call 911 or other emergency services if you fall or injure yourself and you notice:

  • Swelling on a part of your body where you have no feeling or movement.
  • Increased muscle spasms or other signs of spasticity.

Call your doctor now if you have symptoms of a urinary tract infection. These include:

  • Fever and chills.
  • Nausea and vomiting.
  • Headache.
  • Reddish or pinkish urine.
  • Foul-smelling urine.
  • Cloudy urine.
  • Increased muscle spasms or other signs of spasticity.

Depending on your level of injury, you may also feel burning while urinating and/or pain or discomfort in the lower pelvic area, belly, or lower back.

Call your doctor now if you have symptoms of pneumonia. These include:

  • Fever.
  • Shaking chills.
  • Cough that often produces coloured mucus from the lungs. Mucus may be rust-coloured or green or tinged with blood. Older adults may have only a slight cough and no mucus.
  • Rapid, often shallow, breathing.
  • Chest wall pain, often made worse by coughing or deep breathing.
  • Fatigue and feelings of weakness (malaise).
  • Increased muscle spasms or other signs of spasticity.

Call your doctor for an appointment if you have a pressure injury and:

  • The skin is broken.
  • The sore has gotten bigger or is draining more.
  • It has increased in redness, or black areas are starting to form.
  • It starts to smell bad, or the drainage becomes a greenish colour.
  • You have a fever.

Check your symptoms

Giving Support

If someone you care about has had a spinal cord injury, you may feel helpless. It's hard to watch someone who used to be active and independent struggle with basic activities. But there are some things you can do to help.

  • Visit and talk with the person often. Find activities you can do together, such as playing cards or watching a movie. Try to keep in touch with their friends as much as possible. Encourage them to visit.
  • Help the person practice and learn new skills.
  • Find out what they can do without help or what they need help with. Avoid doing things for them that they are able to do without your help.
  • Learn what you and your family can do after the person returns home. This may include helping with the wheelchair, getting to and from the bathroom, and eating.

After rehab

Before the person returns home, talk with them and the health care team to see if additional care will be needed at home. If any home care is needed, you all need to agree who will provide this care. If you are deciding whether you can be a caregiver, be sure to consider things such as:

  • Your own health, which may limit what you can do to help.
  • Your job, which provides income for your family and leaves you with limited time.
  • Your own doubts that you could handle taking care of someone who has an SCI.

Discuss with the rehab team what it means to be a caregiver. They can help you see what the full impact of caring for this person will be. And if you cannot provide all of that care, the rehab team can help you find assistance that could include in-home help, an assisted-living facility, or a nursing home. They can also train you to help the person you're supporting, even if you aren't the main caregiver. You may need to help them do exercises, move in and out of their wheelchair, and get dressed, for example.

Relationship challenges

Whether or not you are the main caregiver for the person, living with and/or caring for them can be both rewarding and difficult. Watching someone deal with such a serious injury can be painful but also inspiring. Sharing the small and large victories can provide a shared pleasure and forge a stronger relationship. But setbacks and "bad days" can be frustrating and traumatic.

The key to working through frustrations is communication. It is important that both you and the person talk about what bothers you and about what your expectations are.

In some ways, you are in a new relationship: roles may have changed a lot. Discuss what you're feeling about the changes, and explain them. This can help you understand each other's needs and foster a healthy relationship. Love and support are key to the person's recovery and to your well-being as a caregiver.

Your needs

Whether or not you are the main caregiver for someone with a spinal cord injury, you need to attend to your own well-being.

  • Don't try to do everything yourself.

    Ask other family members to help. And find out what other type of help may be available.

  • Take care of yourself.

    Eat well, stay active, and get enough rest.

  • Stay healthy.

    Make sure you don't ignore your own health while you are caring for the person. Keep up with your own doctor visits, and make sure to take your medicines regularly, if needed.

  • Find a support group to attend.

    Support groups give you a chance to talk about problems or concerns about caregiving with other caregivers.

  • Schedule time for yourself.

    Get out to do things you enjoy, run errands, or go shopping.

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Credits

Current as of: December 20, 2023

Author: Healthwise Staff
Clinical Review Board
All Healthwise education is reviewed by a team that includes physicians, nurses, advanced practitioners, registered dieticians, and other healthcare professionals.

This information does not replace the advice of a doctor. Healthwise, Incorporated, disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. Learn how we develop our content.

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