The following excerpt is taken from Chapter
4 of Life on Wheels: For the Active Wheelchair User, by Gary Karp,
copyright 1999, published by O'Reilly & Associates, Inc.
To order, or get more information about Gary's book, call
(800) 998-9938. Permission is granted to print and
distribute this excerpt for noncommercial use as long
as the above source is included. The information in this
article is meant to educate and should not be used as an
alternative for professional medical care.
With medical advances, there is a growing population of people aging with
disability. Urinary tract infections are less widespread because of safe
catheterization products, drugs to control bacteria, and appropriate education.
New bedding and cushion technology dramatically reduces the risk of pressure
sores which had led to severe infection and mortality. People are able to live
far more actively and maintain their health, rather than falling into poor
health habits as a result of depression and hopelessness. Drugs now exist that
help manage spasticity, reduce exacerbations of multiple sclerosis, or slow the
progression of diseases like MS or ALS, among others.
Already survival statistics are better than they used to be. Those injured
in the 1940s survived a median twenty-six years. For those injured in the
1960s, the median survival rate improved to thirty-three years. Researchers
assume that survival rates for anyone injured in the 1990s will be further
Now that the world has an aging population of people with various
disabilities, there is much more research interest in how disability affects
the normal aging process. This thirty-five-year-old woman with SCI thinks about
what will happen to her as she ages:
I think about the transition to a power chair. When will that happen, and how
will it affect me. I worry about breaking an arm. I'm a single woman, and I'm
very independent. How will I manage down the road if things
I assume I will need assistance at some point, and I just want to be able to
make the psychological adjustment. I'm already doing less than I used to. The
process is already starting. I work with elderly people, so I'm really aware of
What happens when you age?
Life itself is a degenerative process. But you still have considerable
control over the quality of life as you age. When you understand the innate
changes in your body over time, you are better able to craft a lifestyle to
maintain optimal health and reduce the chances of catastrophic problems.
It is common to lose muscle mass, although this is largely the result of
less activity. Range of motion becomes limited as muscles shorten, tendons and
ligaments become less elastic. Some degree of arthritis might affect the bones
of the joints. Muscles remain responsive to exercise and stretching, but
require regular use to prevent significant, functional weakening.
The skin becomes less elastic and more thin, bringing with it increased risk
of bruising, cuts, and skin breakdown from pressure.
Bones become more brittle. Osteoporosis is common in elderly people,
particularly women. Being at higher risk for breaking bones as you age is not
just because you become less stable and fall more, but because your bones have
lost calcium and therefore break more easily.
As you age, your senses lose sensitivity, reflexes slow down, coordination
is reduced. Ultimately your short-term memory becomes less acute, although
longer-term memories typically remain intact. Energy levels get lower, and you
need less sleep.
These facts of life are not inevitably limiting. For nondisabled people,
quality of life can be maintained by keeping active.
Aging is a mix of psychological losses and gains. There can be sadness over
the loss of youthful health, fear of approaching death, regret over certain
life choices or missed opportunities, the loss of friends and loved ones, and
increasing dependency on others. Aging also can bring increased maturity,
wisdom, perspective, certainty of one's identity, joy in reaching a point of
completion, and peace. Psychological benefits can help offset physical
Increased risks with disability
The lost muscle mass that normally occurs with age becomes a greater issue
when muscles are already weakened by paralysis or a genetic disorder such as a
muscular dystrophy. As you age, you need to continue to exercise moderately to
maintain relative strength as muscle mass declines, so that you can function as
independently as possible. The ability to transfer to and from your wheelchair
is probably the greatest concern. Loss of this ability is a key reason why a
previously independent chair user might require the use of attendant
Chair riders are already at increased risk of skin breakdown from sitting.
Skin that is thinner and more brittle with age increases this risk. You will
need to take extra care as you age with keeping the skin clean, with doing
pressure relief push-ups and changes of position, possibly change your
cushioning strategy, and be vigilant about maintenance of your wheelchair and
cushion to ensure proper support. Since aging increases susceptibility to other
heath problems such as pneumonia and flu, you might find yourself spending more
time in bed. If so, take extra care to change positions or consider using a
different mattress or cushion.
As a chair rider, you must rely on the remaining parts of your body that you
are able to control. The arms and shoulders take on a lot of the work once
performed by the legs, whether pushing your chair, transferring yourself in and
out of it, or adjusting yourself in bed or in a favorite recliner in the living
room. The shoulders can be a significant weak point, as they are made to do
much more than they were designed to do. Such stresses are cumulative. After
enough years of extra work, there is a high risk of chronic pain or joint
overstrain. A young chair rider able to push long distances over sloped or
rough terrain might discover in his fifties that he overused his shoulders and
has to switch to a power wheelchair.
For a person with a disability, it is vitally important to manage the aging
process. Drs. Gale Whiteneck, Ph.D., and Robert Menter, M.D., write:
Most of the changes and declines associated with aging might be prevented
through awareness, vigilance, active health maintenance, and wellness
How it's gone so far
There have been a number of studies of the effect of aging on disability,
generally focused on the spinal cord population. Since issues such as shoulder
strain, pressure sores, and bowel and bladder management are experienced in
common by chair users across a wide range of disabilities, these results have
something to inform anyone using a wheelchair.
Some subjects in these studies have been disabled for up to fifty years.
Quite a lot has changed in that time. However, enough differences were found
between disabled and nondisabled populations for this information to be telling
about the impact of a disability over time.
A 1991 Craig Hospital study reviewed the records of 205 people with spinal
cord injuries. It found a few notable patterns:
- Age at disability was a factor. Given the same levels of injury, older
patients had more functional disability.
- The higher the injury level, the more significant the decline in health and
independence with age.
- Medical and attendant care costs increased with age, particularly when
combined with years post-injury, particularly for C4 quadriplegics.
- Daily activities took more time and effort to complete.
The study concluded:
While these declines of physical and psychosocial functioning might be expected
to occur in older able-bodied individuals, they appear to occur much earlier in
the SCI population.2
Another study reviewed the records of the Model SCI system, a group of
eighteen major rehab centers across the United States. As of 1994, looking at
the population in terms of years post-injury, the study found that risks of
urinary tract infections, pressure sores, and kidney stones rose as more time
passed. The same study found that those in the population who were older
reported more pain, fatigue, and needing help.
Another Craig Hospital study published in 1993 looked more closely at what
kinds of activities people needed more help with. In a group of 279
subjects--who had sustained their injuries anywhere from ten to forty-seven
years ago--22 percent reported that they needed more physical assistance as
they aged.The greatest need was in making transfers to and from their chairs,
in some cases requiring the use of a mechanical lift. Other statistical leaders
were getting dressed, toileting, and of course mobility, a greater concern for
quadriplegics who were able to function with limited arm strength when they
were younger, but could not maintain their capacity over time. Thirty-nine
percent of the people who reported a need for increased help attributed it to
weight gain. The study found that the average age when people needed more
assistance was forty-nine years for quadriplegics, and fifty-four for
The good news: in the same study, people who did not require more help rated
their quality of life better as they aged. The bad news: those who became more
reliant on help reported lesser quality of life. Although 78 percent of the
study participants did not report needing more help, it remains up to you to
maintain your health and ensure that you don't fall into the group whose lives
become more limited and unhappy as they age.
How old and how long
Most aging studies look at both the age of onset of the disability and the
length of time one is disabled. People who become disabled when they are older
tend to recover and adapt less effectively than younger chair riders. When
older people are injured, they are already dealing with some results of the
aging process which make adjustments to disability more difficult. The length
of time you are disabled is another factor that affects the degree of change
you might encounter as you age. Dr. Robert Menter, in a speech on aging in
Following the losses of function of spinal cord injury (SCI), it appears that
the aging process is accelerated as a result of the impaired protection of
various body systems compromised by SCI and increased demand and wear on
These two factors sometimes have opposite effects. Pressure sores, for
example, are found to increase with the age of the person, but decrease with
the length of disability. The skin is more frail when people get older, but a
more experienced chair user will have better skin care habits and skills.
Other conditions more closely related to an older age at onset are heart
problems, pneumonia, respiratory infections, kidney stones, fainting and
headaches. A longer period of time post-injury was more associated with
musculoskeletal overuse strain, tendon and joint pain and stiffness,
hemorrhoids, and urinary problems among men.
In general, signs of aging occur earlier in the disabled population than in
It gets expensive
The less you take care of yourself and manage the decline of your health due
to aging, the more it will cost. Increased costs are reflected in a variety of
- Power wheelchairs which require more maintenance and part replacement for
batteries and heavier duty tires
- Additional architectural conversions to the home if forced to switch from a
manual to a power chair
- Hoists and lifts for transfers in bed and bathroom
- A more elaborate and expensive vehicle, if you are able to afford an
- Attendant support in the home
- More hospital or nursing home stays to recover from bone breaks or pressure
Some added expense is probably inevitable with increased age; consider this
in your financial planning.
- Prevention of Thromboembolism in Spinal Cord Injury, www.pva.org
- The International Association for the Study of Pain,
- Elliot J. Roth, M.D., "Pain Management Strategies," in Spinal Cord
Injury: Medical Management and Rehabilitation, 145
- Roth, "Pain Management Strategies," 159
- Roth, "Pain Management Strategies," 159