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 improved.

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 change?

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 aging issues.

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 decline.

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 services.

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 strategies.¹

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. ³

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 paraplegics.⁴

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 1993, noted:

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 limited resources.⁵

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 able-bodied people.

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 expenditures for:

• 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 accessible van
• Attendant support in the home
• More hospital or nursing home stays to recover from bone breaks or pressure sores

Some added expense is probably inevitable with increased age; consider this in your financial planning.

Notes:

1. Prevention of Thromboembolism in Spinal Cord Injury, www.pva.org

2. The International Association for the Study of Pain, www.halcyon.com/iasp/terms-p.html#Pain

3. Elliot J. Roth, M.D., "Pain Management Strategies," in Spinal Cord Injury: Medical Management and Rehabilitation, 145

4. Roth, "Pain Management Strategies," 159

5. Roth, "Pain Management Strategies," 159