The oft-cited sentiment regarding aging states that getting old is not for sissies. Let’s add another: Inside every old person is a young one trying to figure out what the hell happened.
For wheelers, aging is something of a juggling act, attempting to maintain and balance tolerable levels of health and function, along with a tolerable quality of life.
The health challenges — the not-for-sissies aspect — often mirror the challenges of the nondisabled, complemented by the Litany of Dangers taught in rehab — something akin to a Letterman-like Top 10 List of Maladies that plague those of the sitting life:
• more significant and pronounced loss of function
• slowing of gastrointestinal function
• already compromised lung and cardiovascular function
• elevated incidence of obesity
• low HDL (good cholesterol)
• elevated insulin resistance
• increased risk of skin ulcers and infections
• urinary tract infections
• bowel problems
An informal survey of friends of a certain age raised many of these issues as well as additional ones, most prominent among them, shoulder problems and pain. Specifically rotator cuff surgery seems rather popular among the 40-year-plus post-injury set. Anne Herman, a San Diego quad and three-time Paralympic swimmer, had her procedure done several years ago. Initially she found the necessary attendant care both troubling and intrusive. Now, she rather welcomes the help, especially because it’s allowed her to continue swimming.
Bob Felker, a Colorado para, also had cuff surgery and needed intermittent attendant care for about three years. His biggest complaints had to do with the attendant care and the need for “a big, honkin’ power chair.”
Mark Johnson, a Georgia quad, complains of the “quad pod” [belly], along with pain, spasms, the increased need and costs of attendant services and private transportation, all health-related.
My own recent medical history might make me a poster child for aging with SCI: increased spasticity, high cholesterol, severe shoulder pain, significant neurological changes and loss of function, elevated blood pressure and a stroke. All this is despite a diligent exercise regimen and a diet weighted toward fruits and vegetables and nearly absent of red meat.
Add to these complaints forgetfulness and a slowing down of cognitive ability, emotional mood swings, flagging energy, and the most dreaded fear of all: the possibility of winding up in a nursing home where all your familiar coping mechanisms seem to have disappeared.
So that’s the bad news.
Now here’s the good news:
There are practices, habits, and strategies that you can use to minimize or even eliminate some of these common age-related problems.
Skin: The First Line of Defense
The first thing you can do is accept that bodily changes will come with aging, and that to cope with them, you must change as well.
“Just because you’ve never had a skin problem in the past is no guarantee that you won’t develop one,” says Xio Acosta, an RN in an SCI-specific out-patient clinic. “Maintaining the same habits as when you were young is often asking for trouble.” With age, she explains, skin becomes less flexible and pliant, more brittle, fragile and prone to injury or insult because of its greater susceptibility to pressure, often aggravated by weight gain and decrease in activity due to aging.
“Healthy skin is totally in your control,” she asserts, pointing to the importance of regular and effective weight shifts, as well as a commitment to doing daily visual skin checks with a mirror. Skin sores can be persistent problems, permanently weakening areas of skin and increasing the area’s vulnerability to repeated sores.
If weight shifts and regular visual inspections seem like a pain, consider the alternative: surgery and a lengthy spell of recovering from hospital bed-life.
“A skin sore can impact every aspect of your life,” Acosta counsels, pointing out that people have died waiting for surgery.
Repercussions of long-term confinement and how to deal with it were covered in the April NM cover story, “Staying Positive: How to Survive Medical Complications.”
Urinary Tract Management
Bladder and kidneys also undergo significant changes with age. The bladder tends to shrink in size and has a tendency of not emptying completely, which can lead to chronic urinary tract infections. Increased attention to proper cathing equipment becomes even more important. Those who practice intermittent catheterizations and experience two or more UTIs in a year should qualify for funding to maintain an adequate supply of clean catheters each month.
Full-time catheter users — either supra-pubic or indwelling — run the risk of living with large-tipped catheters in very small bladders. That’s the experience of a friend who told me of his adventure with bloody urine bags and repeated trips to the ER to have his bladder flushed out, due to abrasion and bleeding caused by a large-tipped catheter. In addition to irritation and bleeding, full-time catheter users are also at higher risk of chronic urinary tract infections and bladder cancer.
Chronic UTIs can create a host of other problems, not the least of which is progressively stronger and more aggressive strains of infections which can be difficult to treat, along with the possibility of developing immunity to certain antibiotics. Overall hygiene and cleanliness with collection bags and diligently maintaining a clean (or sterile) field when changing catheters takes on added importance.
And don’t discount the toll of all those antibiotics playing havoc with digestive tracts and bowels already slowing down due to age. SCI further complicates the problem, and can cause constipation, abdominal pain and fecal incontinence. Maintaining a regular and consistent bowel program helps insure against complications. Ditto for diet, appropriate level of fiber, adequate hydration and bowel programs no less often than every other day.
Along with those special considerations come all the normal trappings of aging, often compounded by paralysis, such as high blood pressure, cardiovascular problems, arthritis, high cholesterol and diabetes.
In addition to the medical problems addressed above, musculoskeletal problems can often be minimized and accommodated if identified and addressed early.
Worn Out Parts
Gravity can be especially harsh on wheelers, its impact trickling down to adversely affect posture, skin, function, respiration, neurological condition, and pain. Asymmetry in the trunk, caused by scoliosis or muscle imbalance, can create a host of posture problems, ranging from leaning to one side or, more often, difficulty sitting up straight. People compensate by adopting a permanent slouch, which can affect breathing function and displace internal organs. Chairs set up for maximum wheeling efficiency can make them too low for users to reach objects above their heads. Such complications and changes can lead to increases in pain and fatigue.
Professional advice and assistance regarding proper chair positioning can help to compensate for and accommodate these structural changes. Equipment modifications such as lateral supports, more firm and supportive chair backs, lumbar supports, chest belts and corsets can all help decrease pain and fatigue and preserve energy for having some fun.
Years of wheeling can cause gradual weakening of shoulder muscles or permanent damage from overuse, resulting in chronic pain and fatigue. Other negatives include some shoulder muscles being overstretched, others becoming unduly tight and assuming a generally hunched position. Propelling yourself from the same position is far from the best way to stay fit.
Therapists advocate exercise regimens that emphasize opening the shoulders up: rowing-type stretches with Thera-Bands, yoga, swimming, upper extremity ergometers (ideally, pedaled backwards), and free weights, all of which can all help in maintaining strength, flexibility and cardiovascular fitness.
Power-assist wheels or a power chair can mitigate much of the pain, fatigue and loss of strength or stability, as can a regular routine of those targeted exercises and stretching. There are reasons you see few gray-haired wheelers propelling manual chairs, the number one reason being worn out shoulders like Herman’s and Felker’s.
Few people take equipment changes lightly; most fight them bitterly. Most of us do not accurately weigh the plusses of power and the consequences of pushing through pain, fatigue and declining strength and fitness. Many of us fail to consider the potentially increased energy and independence in all aspects of life that assistive technology could certainly enable.
Most everyone gets weaker, less spry and less energetic as they age, regardless of disability. But the declines — the “what the hell happened?” part — usually occur earlier and with greater consequences for wheelers, manifested as weakness, fatigue, pain, weight gain, decreased quality of life and increased need for assistance. A longitudinal study of British SCI survivors found that people with cervical injuries began needing additional assistance at about age 49, and age 54 for lower injuries. That additional help usually involves transfers, dressing and mobility.
Cindy Smith, a physical therapist who works with long term survivors, says she sees these mobility changes often starting to happen somewhere in the neighborhood of 20 years post-injury or around age 50. Some of us are more fortunate and make it to 60 or older before significant modifications are necessary. Changes can range from walkers switching to manual or even power tilt chairs; manual chair users going to power; or power users needing power tilt. Additional changes may take the form of a roll-in shower to replace a tub or shower bench.
Opportunities for Personal Growth
A 2010 aging conference hosted by the Reeve Foundation reported that functional decline is associated with age more than length of time injured and confirmed that the declines for wheelchair users begin earlier and usually involve weakness, pain, fatigue, weight gain, decreased quality of life and need for assistance. But once again, there are strategies we can follow to minimize problems.
Some functional loss and weight gain can be forestalled with prudent and regular exercise to maintain strength, flexibility and function; some can be mitigated with assistive technology, but only if affordable and feasible. Some survivors may be unable to afford a ramp van, or be able to fit a power chair into their homes. Some may be unwilling to even consider such changes.
Life continues to be an ongoing negotiation with disability, demanding constant trade-offs in an effort to sustain an acceptable quality of life. Here again, many challenges mirror those of the nondisabled population: having the strength and energy to stay active and engaged, maintain a social support system and continue to find meaning and satisfaction with life.
Just as people go through phases and stages of growing up — teen years, learning to navigate the world as an adult, forming relationships — we all experience an emotional and developmental phase or “growth opportunity” with age: that of accommodating these changes while figuring out what our life has meant and whether or not we’re satisfied with it.
Using the aging-as-a-juggling-act metaphor as a way to successfully negotiate the aging process and the changes it causes usually requires compromise, along with a clear vision of what independence looks like and means. Common to most definitions is freedom to do what you wish, when you wish. Lack of accommodation for aging condemns many to a life dominated by pain or limited activities due to chronic fatigue, all too often in the name of independence.
Skilled negotiators parlay all the relevant information affecting a situation to accommodate their needs and those of everyone around them. Wheelers are wise to learn as much as possible about the different potential aging problems discussed here that they are likely to face — how each can significantly affect their desired goals and lifestyle expectations, and how they can be accommodated, whether with equipment or physical assistance.
The danger lies in seeing changes, be they new equipment or additional assistance, as something other than inevitable or as evidence of lost value, accomplishment or worthiness. If loss of function and stamina begin to limit activities, the world can shrink significantly, leading to greater depression and isolation. It’s here that social support systems, hobbies, avocations, volunteering and, if possible, continued employment can reap unexpected benefits in making life both affordable and enjoyable.
This article was funded by the U. S. Department of Education’s National Institute on Disability and Rehabilitation Research, Grant # H133N0110006. The opinions expressed in this article do not necessarily reflect the opinions of NIDRR.