CPA Ontario

The spinal cord is a thick bundle of nerves that runs through the vertebrae (backbones) in your spine. This nerve bundle is about 18 inches long, starting at the base of your brain and ending at your buttocks. The spinal cord acts as a superhighway between your brain and the rest of your body. Want to take a step, or wriggle a finger? The message is normally sent through the spinal cord to these body parts, in the form of nerve impulses. The highway runs in both directions: stub a toe or touch something sharp, and those pain or pressure signals speed back up to your brain faster than you can say “ow.”

An accident that causes your vertebrae to break can also damage your spinal cord. And when the spinal cord is damaged, the highway is essentially closed. Nerve impulses can’t get through. This results in paralysis – loss of mobility and sensation – below the level of injury.

Not all spinal cord injuries cause complete paralysis. In the case of an incomplete spinal cord injury, a small stream of highway traffic still gets through. Someone with an incomplete SCI may have a certain amount of feeling or movement below the level of injury. Often, in the case of an incomplete SCI, one side of the body has more function than the other. Thanks to new medical treatments at the time of injury, incomplete spinal cord injuries are more common than they used to be. These same injuries might have been complete if they’d happened a couple of decades earlier.

The site of your injury will determine what parts of your body are paralyzed. The higher the injury, the more body parts that are affected. For instance, a spinal cord injury in the upper, or cervical, region of your spine will affect your arms as well as your trunk, legs and pelvic area (including bowel and bladder). Someone with this level of injury is considered to be quadriplegic. But an injury lower down, in the thoracic or lumbar region, won’t affect your arms. Someone with a spinal cord injury in either of these regions is considered to be paraplegic. About half of all people with SCI are quadriplegic, and half are paraplegic.

• The most frequent cause of spinal cord injury is a motor vehicle collision. Other common causes include falls, diving accidents and medical complications.
• 84% of people who sustain a spinal cord injury are under 34 years old.
• 80% of all newly injured individuals who get referred to the Canadian Paraplegic Association are male.
• Almost everything we know about spinal cord injury has been learned in the past 20 years. And more is being discovered all the time.
• American actor Christopher Reeve (C1-2) was perhaps the world’s best known person with a spinal cord injury. He helped raise awareness of SCI and its consequences.

Researchers at the University of Alberta show that intensive training after a cervical spinal cord injury leads to better recovery, because it can stimulate the rewiring of the nerves.Link here to go to the full article: http://www.expressnews.ualberta.ca/article.cfm?id=8965

It’s normal to feel a range of emotions after a traumatic spinal cord injury. After all, many things about your life have changed, and your emotions can often take you on a wild ride.You might feel:

• Anger
• Grief
• Denial
• Shame
• Guilt
• Helplessness
• Sadness (Note: If you have symptoms of depression, like loss of energy, trouble concentrating, or feelings of hopelessness, get medical help immediately.)

• Positive self-talk. Instead of telling yourself that no one will want to hire you or find you attractive, or that you’ll never have a family, remind yourself of your job skills, your lovability, your sparkling personality.
• Self-care. Look after your medical needs and your general health. Avoid self-destructive behaviours like smoking or drugs.
• Problem solving. Faced with a challenge? Be creative with a solution. Research shows that people with SCI who have good problem solving skills can more easily reach their goals.
• Accepting help… and offering help. Know when to ask for and receive assistance. That can be an important part of problem solving. But don’t forget that you have something to offer others as well.
• Doing things you enjoy. Now’s the time to put pleasure back into your life. Are you a nature lover? Get out of doors! Have a hobby? Why not rediscover it?
• Connecting with peers. Share your ups and downs with other people with SCI – people who really get what you’re going through. CPA Ontario’s Peer Support program is a place to start.

Although it all may seem overwhelming, keep in mind that the way you feel right now may be different from the way you will feel next month, next year, or ten years from now. Listen to what these old-timers have to say:

“...I felt like I really stood out a lot when I was out in public. I was quite self-conscious about that. Now, I don’t think about it. I got over myself.”- Male, SCI since 1974

“…I saw a film of a woman who had been injured for more than 20 years. I felt like I'd been punched in the stomach. I couldn't imagine five years paralyzed, never mind 10 or more. But as each year passed, with life getting gradually and continually easier, I adjusted. You will find a surprising number of people willing to smooth the path, if you remain open to them and welcome them in. Keep trying to look ahead.”- Female, SCI since 1983

“…my very first thought was, ‘What am I going to do now?’ I was in the military when I had my injury. I was 19 years old, and had my future planned already – and all that changed in an instant. Today I am on a very different path, but one no less fun and fulfilling! I am happily married and have spent 20 years working within the federal government. I have travelled the world, met hundreds of interesting people and experienced many amazing sights. Fundamentally, my injury helped me set priorities for my life.” - Male, SCI since 1983

Yes. Many men and women with SCI work successfully at a variety of jobs, from engineer to chef, from teacher to pharmacist. Get familiar with job accommodations (modifications in equipment, procedures, duties or hours) that will enable you to do your work. Often, employers are open-minded about hiring qualified people with disabilities, but may need your guidance when it comes to the nitty-gritty of accommodating your disability. Check out CPA Ontario's Employment Services.

You bet. A spinal cord injury can affect sexual function, especially in men, but lots of folks with SCI will report that they enjoy a very satisfying sex life, thank you. For men who experience erectile dysfunction after SCI, there are a variety of medications and devices that make erections possible. Talk to your doctor. Whether you’re male or female, the key to a sensational sex life is becoming comfortable with your changed body, and having clear and easy communication with your partner.

Of course. Fertility in women is usually completely normal within a few months of the initial injury. It’s a different story for men with SCI: most have problems with ejaculation and/or sperm quality. But assistive reproduction technologies, which are advancing all the time, have enabled many men to father biological children. Other men with spinal cord injuries choose to build their families through adoption, which is another option.

You can. When you’re planning a trip, think about how you’ll get there, where you’ll stay, what you’ll do and how you’ll get around while there. Then do your homework. You’ll find a variety of transportation, accommodation and activity options that are wheelchair accessible. Ask air carriers or hoteliers specific questions about your particular needs. Talk to other people with disabilities about their favourite trips. The secret to a successful travel experience is lots of planning!

Absolutely. Sports, like many other activities, can be adapted for people with disabilities. The rules might be revised, and the equipment modified, but the adrenalin rush is as exciting as ever. You can go downhill skiing on a mono-ski, play basketball from a wheelchair, even steer a sailboat with sip-and-puff controls. Get started by contacting one of Canada’s many disability sport organizations. Check out CPA Ontario's Recreation Resource Section.

Go for it. Many people with SCI learn to drive using hand controls, a simple set of mechanical extensions that allow you to apply the brake and gas pedal with your hand instead of your foot. There are also gadgets to help you grip the steering wheel, or start the ignition. If you have a van modified with an automatic ramp or lift, you’ll be able to drive without even getting out of your wheelchair.

Sure. Universities and colleges across Canada have made great strides in their services to students who have disabilities. Their campuses are more wheelchair accessible than ever, and their support services are in place to help you make the grade. There are also a range of bursaries and scholarships targeted to students with disabilities.

Why not? Medical advancements have been helping to improve the life expectancy of people with SCI. And you can stack the odds in your favour by taking care of your medical needs, eating a well balanced diet and being physically active. Stick to a healthy weight. Build a strong social network. Find effective ways to deal with stress, like relaxing, meditating or wheeling in a park. All these steps can help you live longer.

Do you know you have certain rights as a person with a disability?

• The Canadian Charter of Rights and Freedoms guarantees equal protection and benefit of the law to people with disabilities.
• Under the Canadian Human Rights Act, it is illegal for anyone under its jurisdiction (government departments and Crown corporations, for example) to discriminate against someone with a disability.
• Under the Ontario Human Rights Act, all public buildings and services in the province must be accessible to people with disabilities.
• The province’s new Accessibility for Ontarians with Disabilities Act means new standards of accessibility in both the public and private sector. These standards are still being developed, however, and won’t be fully implemented until 2025.

• Remember your body language. Maintain eye contact and body posture. Show that you feel good about yourself!
• Stay calm. Don’t fly off the handle when a service or individual discriminates against you. You’ll get better results if you’re cool and confident.
• Don’t use negative language when you’re talking about disability. Don’t say that you’re “confined to a wheelchair” or that you “suffer from a spinal cord injury.” Say instead that you use a wheelchair, or that you have a spinal cord injury.
• Take notes. If someone sees you’re writing down what they’re saying, they’re more likely to be careful – which means they’re more likely to be fair.
• Send a letter. If you’re not seeing any action, put it in writing for the service provider or business owner. Or consider raising awareness by writing an article for your local newspaper or club newsletter.
• Propose solutions. Do more than just complain about the problem. Explain what can be done to fix it to your satisfaction. Remember, you’re probably more of an expert on accessibility than they are.

This can be a valuable and convenient source of news and resources. But keep in mind that not all Internet info is accurate. Before you believe everything you read, check to make sure the website has been produced by a reputable organization, government or school.

Many Canadian disability organizations publish newsletters or magazines, often mailed to members or posted freely on websites. Sign up for the latest scoop. You can sign up for E-Spoken, CPA Ontario E-newsletter on the left hand side of our home page or check out our quartlerly publication, Outspoken.

Talk to friends and colleagues who have disabilities. Their tips and advice come from real-life experiences. You can’t beat that!

Several major cities across Canada, including Toronto, host annual shows where you can find out about new products, try out equipment and test new technologies.

Time to rediscover your local library. Browse through disability resource guides for ideas and information. Even autobiographies by people living with disabilities can provide inspiration.

Many disability groups across Ontario offer seminars and conferences on topics that may interest and benefit you. Often they’re free of charge. [By clicking here, for example, you can learn about CPA Ontario’s Knowledge Mobilization Seminar Series.] [Tip: Check out SCI WAY, CPA Ontario’s online database, for hundreds of listings of valuable spinal cord injury resources. Click here to get started.]

Keep your bladder infections to a minimum by drinking plenty of fluids. There is some research to suggest that cranberry juice and cranberry supplements can also help prevent UTIs. Try not to drink a lot of caffeine and alcohol, which can be irritating to your bladder.

A pressure sore or ulcer is damaged skin from constant pressure, which can cut off blood circulation. If you’re prone to pressure sores, check the problem areas of your skin (like your behind, hips and heels) at the end of each day. Look for pink or red patches. Keep these areas from getting worse by taking extra care for the next few days: spend less time in your wheelchair, change your positioning throughout the day or try a different wheelchair cushion. A healthy diet that includes protein will help you heal faster. And remember that daily exercise boosts circulation.

If your activity level has been reduced since your injury, you may find you’re putting on the pounds. But it’s wise to try to stick to a healthy weight, as it will lower your risk of obesity-related problems like heart disease. It will also make for easier mobility and transfers. Eat a low-fat, well-balanced diet to keep your weight under control.

Some people with SCI experience pain, either because of the spinal cord damage itself, or from related causes such as overuse of a muscle group. The lower your spinal cord injury, the more likely you are to have pain. But don’t suffer in silence! Talk to your healthcare provider about ideas for pain management. Some people benefit by joining a support group for chronic pain.

If you have a high-level SCI, autonomic dysreflexia can be your body’s way of telling you that there’s a problem. Skin irritation, an overfull bladder or even clothes that are too tight can trigger the condition. Autonomic dysreflexia feels unpleasant – your blood pressure rises and your heart rate drops, and you often have sweating and a pounding headache – and it can be potentially dangerous. Try to find and deal with the cause immediately. If you don’t know the cause, you may need to seek emergency medical attention.

If your chest muscles are affected by your SCI, you may have difficulty breathing and coughing. This can increase your susceptibility to pneumonia. Ask your doctor about a pneumococcal vaccination. This can prevent some types of pneumonia infections, as well as certain meningitis and blood infections.

If you’re off your feet all day then you’re at higher risk for osteoporosis, a disease that can cause your bones to become weak and easily broken. The best way to conserve your bone mass is by eating a diet that’s rich in calcium and vitamin D. Dairy products contain both, so they’re a great bone-booster. Other foods packed with calcium include sardines, leafy green vegetables and soybeans.

If you can no longer feel some parts of your body, you may occasionally injure yourself without realizing it. Take extra care to avoid bruises, burns or cuts to these body parts. Give your skin a once-over at night to look for any new injuries. ‘If I had any advice based on my experience, it would be to stay as active as you can and keep as healthy as you can. We in particular cannot afford to let pressures of work, etc., get in the way of our exercise, our sleep and our nutrition. As much as I hate to admit it, the physios are right!”- Male, SCI since 1969

The University of Alabama has found, among other results, that people with recent spinal cord injuries are more satisfied with their lives if they feel they are in good health. Link here to go to the full article: http://linkinghub.elsevier.com/retrieve/pii/S000399930210164X

A key part of a good health regimen is relaxation. We all know that, at times, it can get stressful dealing with a disability. Tasks take longer, so you may feel frazzled. Community buildings are often inaccessible, so you may feel frustrated. Equipment and supplies cost money, so you may feel financially stretched. Finding time every day to relax is important. It gives your body a chance to stop. It gives your mind a chance to rest. And it has been proven to have a positive impact on your general health. There are specific relaxation techniques you can learn, like progressive muscle relaxation to ease your body’s tension. With another technique, visualization, you imagine yourself in a peaceful or calming place. Here are more ideas for adding a time-out to your daily routine:

• Listen to music
• Read
• Get a massage
• Meditate
• Make art
• Enjoy a nature walk
• Escape with a funny movie or sitcom

Amazing inventions, great gadgets, terrific technologies! Devices of all descriptions can mean a better quality of life for someone with a spinal cord injury. Here are a few examples of products that could increase your independence:
 
Environmental controls

Turn on a corner lamp from your bed, or open a door automatically without having to fumble with the handle.

Adapted computer parts

A trackball may be easier to use than a standard mouse. Adapted switches may be easier to manage than keyboard functions.

Special software

Use an on-screen computer keyboard to type, or try out voice recognition technology to control computer functions.

Assistive devices

Grab bars, transfer benches and mobility aids in your home will help you get on with your day-to-day living. Wheelchair accessories like lap boards and drink holders will keep you more independent when you’re out and about.

Household gadgets

Jar openers, book holders, zipper pulls and washcloth mitts – many of these weren’t designed with spinal cord injury in mind, but that doesn’t mean they won’t make your life just a little bit easier!

Where can you find this stuff?

• Home health care outlets
• Hardware stores
• Disability classifieds
• Disability organizations
• Community service organizations
• Do it yourself! Some gadgets can be homemade, like wooden blocks placed under the legs of a table to create more knee space underneath.

Adjusting to a spinal cord injury may also mean adjusting to attendant services (sometimes called attendant care). Personal attendants are men and women whose job it is to act as your arms and legs, helping you with routine tasks of daily living. Under your direction, they assist with washing, dressing, shaving, transferring or preparing meals. Having another person help you put on your pants may take some getting used to. But it’s important to remember that the use of hired attendants can actually boost your level of independence. Attendants can enable you to participate in the community, or even hold down a job. A good working relationship between you and your attendants will include the following:

• healthy communication
• mutual respect
• professionalism
• flexibility
• no physical, emotional, financial or sexual abuse

Find out about the attendant services offered by CPA Ontario.

Interested in getting back in the game? Sports like basketball, rugby, hockey and tennis have all been adapted for people who use wheelchairs. Check out these links to wheelchair sport organizations in Ontario.

• Canadian Wheelchair Sports Association http://www.cwsa.ca
• Ontario Wheelchair Sports Association http://www.ontwheelchairsports.org
• Spitfires Wheelchair Sports Association Ontario http://www.spitfirechallenge.ca
• National Capital Sports Council of the Disabled http://www.ncscd.ca
• National Capital Wheelchair Tennis Association http://www.magma.ca/~ncwta
• Canadian Electric Wheelchair Hockey Association http://www.geocities.com/cewha
• Canadian Association for Disabled Skiing – Ontario http://www.disabledskiingontario.com
• Canadian Paralympic Committee http://www.paralympic.ca

And just for fun…Heard about Murderball? This award-winning movie about the fast and furious game of wheelchair rugby is now on DVD.

Check it out here: http://www.murderballmovie.com

If you’re not into competitive sports but you like to be active, consider handcycling, horseback riding, swimming, skiing or dance. All of these have been modified in some way for participation by people with disabilities. In fact, think of any popular activity, and chances are high that someone with a spinal cord injury has already been there and done that. Sometimes an adapted activity means using specialized equipment or trained instructors. Often, it just means doing things a different way. For more info:

Active Living Resource Centre for Ontarians with a Disability: http://ontario.getactivenow.ca