Most of us in the exercise world don’t even give the concept of disability a second thought unless one personally is disabled or has family or friends who are disabled. What is not often realized is that, as we grow older, the chances of our becoming less capable or disabled in some aspect of our lives comes greater or inevitable. Even in affluent nations, as many of 10 percent of the population live with some form of physical or mental disability, with about half of those suffering from mobility impairment which exerts a profound impact on their ability to exercise. Yet, the number of fitness professionals working with these populations outside the clinical setting is extremely small and the situation is not improving much because fitness accreditation in this specialized field is nearly non existent.
Disability Is Not a Disease
First and foremost, all physical disabilities are not the result of a disease. For example, a person who is paralyzed, that is has suffered a spinal cord injury as I have, is not sick. They do not have a disease. Something is just broken. It is interesting to note this, because in many cases if the person takes good care of himself or herself, they can live a lifespan comparable to that of any healthy able-bodied person. Another way of thinking of paralysis, is that it is not progressive; in other words it doesn't get worse. There has merely been an interruption in the spinal cord. Think of it as a break in your telephone cord. If your telephone cord breaks, the connection is interrupted. That is all that has happened to someone who is paralyzed.
This will be explained in more detail later, but at this stage the point is merely that these people are not sick. I know that before I became paralyzed I just heard the word "paralyzed" and I just blanked it out of my mind as something that is too horrible to contemplate. It was something that happens to someone else, but not to me, or for that matter not to anyone I knew! I am not saying that it is great to be paralyzed, but with modern medicine making advances daily and with people's attitudes drastically changing around the world about physically disabled people, it is not a death sentence at all. It is, of course, a huge disruption of one's life, but one can go on productively and happily.
The recent well known case of a victim of spinal cord injury is the American actor Christopher Reeve who played in the Superman movies. He is living a productive life even though he has a very high level of paralysis. (Note from the Editor: Christopher Reeve passed away in October 2004, after this article's publication.) He broke his neck in falling off a horse and suffered a high spinal cord injury, or high paralysis. He is what we refer to as a high quadriplegic and, besides living in a power (motorized) wheelchair because he cannot use his hands or arms, he also needs a respirator to enable him to breathe, which is also attached to his wheelchair. They periodically take the respirator out for a while and he can speak quite well.
It is sad to think that, because a very famous person in America has now suffered a spinal cord injury, it is actually boosting disability awareness by leaps and bounds. Christopher Reeve has become an outstanding spokesperson for spinal cord injury, appearing on national television, portraying very positive behavior and acting as a great role model for others in that situation. As is the case with any disease or massive health issue (such as AIDS), the more it is publicized, the more money for research for that ailment follows.
Before I continue, to begin to make paralysis more simple to understand, try to think of the following: the higher up the spine the person is paralyzed, the more is lost. In other words, if someone if paralyzed in the lower back, they still have everything above that level working normally. In other words, a person who has an injury to the spine in the very low back still has all of the muscles in their stomach and back working so they can still sit in a wheelchair without balance problems. Since Christopher Reeves' injury is so high up in the spine, everything below that level of his neck is NOT working. This will become easier to understand later.
On the other hand, there are many other causes of physical disabilities that ARE diseases, or as they are commonly referred to as diseases of the central nervous system, like Multiple Sclerosis. That is a disease and can be progressive, meaning it can get worse, or in many cases, better.
Categories of Physical Disability
Spinal Cord Injury
A spinal cord injury is caused from pressure on or damage to the spinal cord, which causes temporary or permanent paralysis of the sensory and motor nerves BELOW that level where the injury occurred. Everything ABOVE the level of the injury still works normally.
A brain or head injury (also called traumatic brain injury) is caused by a severe injury to the head which may produce physical paralysis, impaired speech or mental function. Many brain injuries are caused by people not wearing helmets on motorcycles or in various sports that require protective head gear.
A person who has suffered a brain injury may not be able to walk and may be in a wheelchair, but it is not due to the same reason as in a spinal cord injured or, paralyzed, person. The damage depends on which parts of the brain have been injured and how extensively. If a brain injured person cannot walk, it is because the part of the brain that controls locomotion has been damaged. Rehabilitation in these cases is usually long and hard and, as with any other physical disability, every individual situation is different. Also, the person may have to learn to talk all over again, which requires months of speech therapy. Other symptoms may be muscle spasticity in the body, which will be discussed later in the section on spinal cord injury.
The problem for the average able-bodied person is that some symptoms of head injury may seem the very same as those of other disabilities, and it can be confusing understanding what is really wrong. For example, a person with cerebral palsy may exhibit some of the same symptoms as a person with a head injury. The only way to know is to politely ask someone what the person's disability is.
Also, sometimes people with severe head injuries who know exactly what is going on, but may not be able to communicate well, may be mistaken for a person with a mental disability. So you can appreciate the problem with determining the person's overall abilities.
According to the World Health Organization, some 180,000 cases of confirmed polio occurred worldwide in 1990. Four regions - eastern China and Indochina, the countries around the Caspian Sea (eastern Turkey, northern Iran and the former Soviet republics), the tropical belt of Africa, and the Indian subcontinent are prime polio havens. The last accounts for 40 percent of polio cases - 80,000 to 100,000 new cases a year occur in India alone.
Polio is caused by a virus which produces various different degrees of paralysis. Some people may walk with the aid of crutches or calipers while others use wheelchairs full or part time.
Spina bifida (sometimes referred to as split or open spine) is a birth defect that appears between the fourth and sixth week of pregnancy when the embryo is less than three centimetres long. During normal development, a groove in the center of the embryo deepens; eventually the edges meet to form the neural tube and enclose the tissue which will become the spinal cord and brain. Therefore, because it is a birth defect, many physically disabled children are as the product of this disease. Again, the symptoms vary between individuals, but there is usually some low level of paralysis, although in some cases the child will be in a wheelchair for its entire life.
Nowadays, with proper medical care, spina bifida children can grow up to have normal, active lives, since most of them show a low level of paralysis (in other words, they usually have working muscles in the trunk and torso). They can be good candidates for becoming quite independent and some make excellent wheelchair athletes.
Cerebral Palsy (CP) describes a wide range of physical disabilities caused by brain damage incurred before, during or shortly after the birth process. Brain damage is permanent and cerebral palsy is life-long. Some of the symptoms of CP may also seem superficially the same as those of a head injury or multiple sclerosis, so that one must again ask to determine exactly what the disability is. CP children usually exhibit muscle spasticity that can range from very mild to very severe, and speech may be impaired as well. Also, some CP children can walk with the aid of devices and some use wheelchairs.
Amputations occur for many reasons: trauma, especially motor vehicle accidents and work place injuries; conditions present at birth or certain diseases, including poor circulation, diabetes and cancer. Because of continued developments in prosthetic (artificial limb) technology, most amputees can return to productive and independent lifestyles, doing many of the things they did before their amputation. As we will discuss when we reach the section on spinal cord injury, many amputees live with pain. This so called 'phantom pain' of the lost or part of the lost limb, is now known to be completely different from the severe pains that a paralyzed person feels.
A stroke is caused because by traumatic deprivation of blood to the brain which results in partial or complete paralysis of one or more of the limbs, as well as other muscles, such as those of the face. Again, every stroke victim is as different as grains of sand, as is their rehabilitation.
Multiple sclerosis (MS) is a chronic disease of the central nervous system wherein myelin, the insulation surrounding many nerve fibers, is lost. MS is thought to be due to an autoimmune dysfunction. For some unknown reason, the body just turns on vital parts of itself. Today, as you have seen with some of the other physical disabilities, people can live long, productive lives with this disease, depending on its severity, but it has no cure, and in many cases is extremely painful. MS usually strikes mostly women between the ages of 25 and 45.
Also, MS can strike any part of the body at any given time. That is, some people may lose their sight and become blind, some may become paralyzed or partially paralyzed, or exhibit a host of other symptoms. Also, some MS people may go into long remissions with no real evidence of the disease for long periods of time, while others may find its progression quick and painful. In many cases, their quality of life has improved with the advent of modern medicines and therapies, the design of better wheelchairs and equipment, and a more supportive, positive attitude of the public at large. As a professional health and fitness teacher, I have worked with many active and productive MS students over the years who became enthusiastic and regular members of my seated fitness classes. However, in the not so distant past, most patients with MS just stayed at home and resigned themselves to their fate.
Muscular dystrophies are a group of hereditary disorders that slowly destroy muscles. This incurable disease is also responsible for many children whom you may see in wheelchairs, since it begins at birth. The disorders vary in inheritance pattern, age of onset, the initial muscles attacked and the rate of progression.
ALS (Lou Gehrig's Disease)
Myotrophic Lateral Sclerosis (ALS) is a disease characterized by a progressive weakening of the skeletal muscles. ALS attacks the motor neurons in the spinal cord which control muscle movement. This disease usually eventually requires a person to use a wheelchair.
Other Categories of Disability
There are many other causes of physical disability, but these are the main ones and probably the ones you may run into from time to time.
Fitness Training for the Disabled
All of the above may leave a person in need of a wheelchair or some type of aid to get around with crutches or calipers (braces). Therefore, you can see that there are numerous reasons why a person may use a wheelchair. Also, some people may use a wheelchair only part-time, because they may be strong enough to walk the rest of the time. Then, of course, some older adults may just use a wheelchair because of mobility, strength and balance deterioration accompanying old age, and not as a result of any specific physical disability. This is where the issue of wheelchairs becomes quite complex. If someone uses a wheelchair because they have been lucky enough to live 80 or 90 years, good for them! In their generation they had no such thing as a light-weight or sports wheelchair!
The point is that today, more and more wheelchair manufacturers are entering this market, because they are seeing the numbers of young people becoming disabled who can live many years and need a custom built wheelchair to suit them specifically. If one can afford it, one can now select a wheelchair like choosing clothing, in terms of fit, style, color, comfort and so on. That was unheard of even 25 years ago! How quickly things have changed! Also, because paramedics are saving many more people at the scenes of tragic accidents, many more people are surviving who only a short time ago would have died.
Consequently, there has been this tremendous increase in numbers of well-made and fashionable wheelchairs for younger people.
As we have now seen, there are such a variety of physically disabilities, and many people live in wheelchairs live quite independently, so it is most relevant to ask current fitness professionals this question: What experience do some of you have in training wheelchair clients? For example,. in areas such as dealing with body shaping, cardiovascular training, weight loss, staying healthy, aging in wheelchairs, making their day-to-day lives easier by becoming stronger, helping with their specific medical situations, helping to prevent pressure sores, assisting with balance and coordination, helping with digestion, circulation, chronic pain, problems with seating and posture due to wheelchairs not fitting properly, and much more.
One of the basic issues is how fitness training may be offered to anyone who uses a wheelchair either permanently or during periods of injury or weakness. Let us begin by examining the use of wheelchairs in general and how they affect someone’s ability to exercise.
If possible, wheelchairs need to fit a person's body shape and size just as shoe and clothing fit an able-bodied person. Wheelchairs are becoming more hi-tech today, but I still see many people who could tremendously benefit from a better fitting, lighter weight wheelchair. An individual's wheelchair directly depends on that person's specific disability in terms of balance, strength and much more. Besides the fitness industry's interest in working with 'special populations', the wheelchair industry has much to do with this as well!
As discussed earlier, there are many individuals who would use a wheelchair including people with spinal injuries, multiple sclerosis, cerebral palsy, knee/ankle/lower extremity injuries, gross obesity, seniors, children with spina bifida and many others.
The idea is that the more a person is able to do for themselves, the less equipment (meaning the wheelchair and its parts) are needed. These people can drive, transfer, do most day-to-day things by themselves, and need limited assistance. They usually don't need handles on the back of their wheelchair, usually don't need arm rests, and basically the wheelchair can be very light and very small.
The more limited movement a person has, the more equipment is needed on the wheelchair. For example, they many need arm rests, or handles on the back to have a walking person push them. Many older people usually need someone to push them around, many do not. It depends entirely on the person's individual situation. A high quadriplegic who cannot use her/his arms very much at all, may need a power wheelchair. These people usually cannot drive themselves - some can, but again, the level of the spinal cord that is injured directly relates to how much a disabled person can do unaided. The higher the injury the more parts of a wheelchair are required.
Many people with disabilities have serious problems with balance, so that any fitness program needs to take this carefully into account. For example, many people think if they see a person in a wheelchair that their legs just can't move. This is a serious misconception. The height of the lesion in the spinal cord where the person is injured dictates how much balance one is left with.
If a person is paralyzed at the thoracic level of T3, for example, (like myself), then they have no functioning musculature below that level, meaning no usable abs, no back extensors, no control over bladder and bowel function and much more (this is why any fitness facility catering for the disabled needs to have accessible, adequate bathroom facilities close to the exercise area). At this spinal level, a disabled person cannot lean forward or they would fall out of the wheelchair!
If a person is injured at the lumbar level of L3 in the spinal cord, then that individual will have control of most of the torso and consequently have much more balance. All of this is critically important when training someone with a disability. Usually, these people at this level CAN lean forwards without falling out of the wheelchair. So you can see how the level of the spinal lesion is SO important in terms of knowing how much balance a person has when exercising.
Here are some brief comments to define and classify the different types of mobility impairment:
- A quadriplegic is a person who has sustained a spinal cord injury from the level of C1 to C7 in the spinal cord. Some quadriplegics have some use of their arms and hands, depending on how complete the lesion is and at what level in the cervical spine it is located. Most paraplegics have use of their arms and hands.
- A paraplegic is a person who has sustained a spinal cord injury from any level BELOW C7 in the spinal cord.
- It is important to know if the spinal cord injured person has a COMPLETE or an INCOMPLETE injury. This just means if the person's spinal cord has been cut in half or severed completely; they usually have no feeling or movement below the level of the injury. If the person's spinal cord has NOT been completely severed, some messages are still able to get through the traumatised spinal region, and that individual may have some feeling or some movement below the level of the injury. That is why you may see some paralyzed people who can move part of their legs or have some strength in the torso.
Specialized Seated Fitness
These are just a few of the medical situations that I felt necessary to cover in the Seated Movement (SMART) fitness system which I developed to help fellow disabled persons like myself. There are many other medical and physiological problems associated with many different disabilities: Some of these are: breathing ability, autonomic hyperreflexia, weight shifting to prevent pressure sores during exercise, problems with temperature control (usually with injuries above the thoracic level of T5 to T6), problems with muscle spasms below the injury level (not just spasms in the legs), problems with chronic pain, just to name a few.
People who have suffered traumatic brain injuries can also tremendously benefit from exercise, but they have different medical situations to look out for. The SMART Fitness training system that changed my own life covers most disabilities and what to know about how to train or exercise with these individuals.
If instructors are taught properly, they can become very adept at training people with disabilities.
Many people who live and work in wheelchairs have homes, jobs, families and live the same as able-bodied people. Many exercise, many do not, just as the case is with walking people. Also, I have seen people all over the world in my travels who have little or no access to fitness facilities or trained instructors with knowledge of disabilities. The reasons are many.
We know that even in the able-bodied world it is hard enough to get people to exercise. Why do walking people go to gyms? Some want to exercise to keep healthy. Some want to change the way they look for many reasons, maybe to look better in clothes, lose weight, gain self-esteem, the social aspect, the list goes on and on. For disabled individuals, the reasons are the same, but it is hard for many aerobics instructors or personal trainers to train masses of disabled people, because they need a good working knowledge of many of the disabilities and potential problems of training disabled people, as life threatening problems and overuse injuries to the arms can happen easily.
When I consult with clubs, recreation centers, rehabilitation facilities or anywhere where people need information on how to train disabled people, one thing I often see is instructors just teaching arm exercises or just a few weights or elastic band exercises, an approach which seriously neglects other fitness needs of the disabled person. Disabled exercisers are in most cases (even in seniors or older adults) able to work the entire body. Instructors need to realize that, even though someone may use a wheelchair, they need to downplay the use of the arms alone and train as much of the body as possible. People in wheelchairs use their arms all the time by not only pushing their wheelchairs but by transferring all day long, dressing and literally in every aspect of their lives. By doing more exercises that just focus on the arms, various overuse injuries can occur. The arms and upper body must also be trained, but the lower body, including legs, abs, glutes, back muscles, and more need to be concentrated on as well.
This brings me to another question of wheelchair exercisers. In my many years of teaching fitness from my wheelchair, and personal training and lecturing around the world, the reasons are exactly the same as in the walking world. I taught aerobics when it first came on the fitness scene before I was paralyzed, and I have been teaching from my wheelchair since 1985. I have seen over many years, that even when people in wheelchairs join clubs or have personal trainers, it is difficult for them to keep going. And it is so important for disabled people to keep healthy and fit because of their medical situations, which they need to deal with for a lifetime, so it is important to keep this in mind when dealing with this population.