The good news about disability?” says Don Dawkins, a para injured in 1965, “we get to live a long time. Bad news? The same.” Life expectancy for those surviving one year of SCI has increased dramatically for several decades. However, exact figures do not reliably predict expected lifespans since each individual is unique and statistics cannot account for individual differences. But what we know is we are generally living much longer.
But just how golden are those extra years? In addition to the normal wheeler problems — skin breakdown, shoulder problems, pain and plumbing malfunctions — we’re also more likely to face high blood pressure, cholesterol disorders, diabetes, and being overweight or obese. Nor are we immune to more mainstream diseases such as coronary artery disease and cancer. Here’s a report from the front lines.
View From the Trenches
How do wheelers think their bodies are treating them?
Most everyone interviewed for this story seems to be coping fairly well after decades on wheels. Most are quite upbeat and optimistic, but also concerned and sober regarding what the future holds.
“I never thought rotator cuff surgery would happen to me,” says three-time Paralympic swimmer Anne Herman, 64, of San Diego.
But the biggest surprise was losing her hearing. After years with hearing aides, she lost it all a few years ago, but has found cochlear implants to be “a miracle.” We chatted on the phone with the help of a TTY — a machine that gave her a printout of my questions.
She’s not without other significant difficulties. One is autonomic dysreflexia; she’s not always symptomatic and as a result must monitor her blood pressure regularly. Day to day impacts of aging are chronic neck and shoulder pain, in addition to worsening neuropathic pain and persistent fatigue. She also struggles with posture, longer bowel care and was recently diagnosed with ulnar nerve entrapment.
“Aging is harder than I thought it would be. I’ve gone from a totally independent C6-7 to having attendant care. I spend a lot of time taking care of myself, but I’m still having lots of fun swimming three to four times a week, dancing, traveling and enjoying myself.”
Her words to the wise: “It’s OK to have caregivers. Make changes, like power-assist wheels. Rethink full-time work before losing your health to it.”
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When Don Dawkins took a demanding advocacy job too attractive to turn down, he figured if he ran into health problems he could always bounce back. Over the years he’d developed “an almost perverse sense of confidence about dealing with what life throws at me.”
But the past four years have been the hardest of the 50 he’s been in a chair. He spent about six months down — much of it in a hospital — nursing skin problems and dealing with osteomyelitis and MRSA. Now 65, he says the experience has shaken his confidence severely.
“I’ve had no time to adjust to Geezerville. It’s like just getting out of rehab and dealing with impairment issues all over again. I can’t read my body any more, I’m plagued by chronic UTIs, and adjusting to a big, tilt-in-space power chair is very difficult. I see this gray-haired old guy with a gut, not to mention a scowl, in a mirror and cringe. I’ll get used to it, just like before, but it blindsided me. Guess the message is that adjustment to a SCI is an ongoing process.
Any good news?
“Gonna be a granddad in August, pumped about that. Sense of humor is my saving grace.”
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Bob Gallagher knows all about aging in a chair; he just turned 80, 60 of them with a T12 injury. We met at the gym, where he stopped lifting weights long enough to talk. “Aside from constant pressure sores — maybe 40 over the years — I’ve stayed pretty healthy. I had a skin flap done in ’96 and rotator cuff problems a couple of years ago.”
Gallagher is in remarkable shape for 80 despite high blood pressure, type 2 diabetes, rheumatoid arthritis, gout and atrial fibrillation (a common type of abnormal heartbeat). He says day-to-day effects of aging are the usual: loss of stamina, waking up tired, difficulty pushing long distances and finding most things more difficult to do.
“But I’ve not had to make many changes, except I stopped mowing my acre of yard about 10 years ago.”
How does he account for this good fortune? “I’ve always stayed busy. I knew lots of people were worse off than me. I maintained as much independence as possible. And I’ve had the love of a good woman for 61 years.”
Advice? Words to the wise? “Don’t be afraid to ask for help.”
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Janette Lawler, 48 and a high quad for 21 years, just had her third skin flap surgery.
“I’m a slow learner,” she says. “I’ve had other sores that required attention but not surgery,” she says. “Plus a couple untethering procedures. A few years ago I had to accept that I have to slow down. I cringe, knowing that I’m acting with wisdom and accept that I have limitations and can’t do everything I want to do.”
Lawler, a travel agent who loves to travel, says that realization didn’t much please her. “I was in Florence, Italy, my second favorite city in the world, and spent much of my time in a hotel room or eating at a local café. That took all my energy.”
What the Research Says
Many of the problems these four cited are in line with what researchers report. In several studies, more than half of those interviewed cited some combination of pain, changes in bowel and/or bladder management, spasms, fatigue, heartburn and osteoporosis. Between a quarter and half reported skin problems, obesity, cardiovascular problems, fractures, changes with sexual function and excessive sweating. Some spoke of respiratory infections, shortness of breath, sleep apnea or contractures.
Our nondisabled brethren seem to have thinner skin, fading strength and stamina as well as less balance and a growing waistline as they age. Why would we expect to be any different? Add in compromised function to various systems and the future becomes clearer.
Wheelers say problems with bowel and bladder management, spasms, pain and sexual problems troubled them the most, and that often urinary complications, pressure sores, respiratory problems, contractures, bowel complications and pain, if not adequately monitored and treated, can quickly progress to hospitalization.
“Aging may look different and might show up sooner, especially in joints,” says Susie Charlifue, a principal investigator in Craig’s research department who has studied the impacts of aging and SCI for more than 25 years. “Long-standing bowel and bladder management techniques may need to change; medication needs and effectiveness may also change.”
Goodbye stability, hello change.
“Changes may not be apparent because the symptoms may be different,” Charlifue adds. “People may not notice shortness of breath or chest pains indicative of heart disease. Changes in strength, stamina and degree of pain are all fairly common. Joint pain can be quite debilitating for both wheelers and walkers, as can further changes in bowel or bladder function.
So what can we do? “People can take normal protective actions such as diet, exercise, regular check-ups, while also monitoring bladder and skin and protecting shoulders with proper technique and equipment changes. Monitoring is very important.”
And finances also play a role. A recent study found that mortality odds for people with incomes between $25,000-$75,000 were significantly higher than those with incomes over $75,000. Another found that household education and income have a very significant effect on life expectancy.
Back to the Trenches
John Williams cruised through 36 years on wheels, spending many of those years fixing and maintaining chairs for a Cleveland vendor. “I developed a skin sore about two years ago and had two skin flap surgeries, with a third scheduled to clean up the sores and check for bone infection. I spent a month in a nursing home, had a wound care nurse here once a week for a while; now, finally, I’m almost healed. I couldn’t work and had to retire.” He’s also troubled with arthritis from his shoulders, elbows and wrists.
Now 65, Williams, a para, says, “I’m surprised to find that I can’t do everything I used to do. I’m slowing down and doing less. I got a power chair for yard work.”
Worries? “Ending up in a nursing home; my wife Charlotte dying before me.”
Tips for coping? “I just put my mind to things and stay busy doing woodworking stuff, mostly with the lathe. That’s my tip: Stay busy.”
And his coping tool?
“My wife.” Charlotte Hepner, a 64-year-old para of 32 years, is still working part-time for a veterinarian.
”Sore shoulders and knees from walking with crutches and braces for a number of years, along with hand problems,” she says when asked about aging concerns. “I do things more slowly and have to pace myself.”
She says her biggest challenge has been helping John the past two years and muscling two chairs in and out of the car. That and money.
“Aging is about what I’d anticipated, though it’s different with two wheelers. I’m surprised that I don’t feel older. I feel lucky to be in such good shape.” Worries? “Well, besides money, I think a lot about adequate health care.”
All things considered, she’ll take what she’s got. “I’m happy with John, I get along with my docs, I love my house and neighbors. My life is blessed.”
Words of wisdom? “Don’t sweat the small stuff.” For Charlotte, it’s all small stuff.
What You Can Do
Can specific problems be tied to aging or duration of injury?
“When trying to identify the underlying reason for a secondary condition, it’s difficult if not impossible to separate the contributions of genetic aging and predispositions from those related to SCI,” says Dan Lammertse, Craig Hospital’s director of medical research. “The operative concept is the interaction of aging and disability. People age differently and at an accelerated rate. The patterns and rates of arthritis are one example; arthritis developing faster with people injured at 60 or so is another. But we can’t predict the severity of problems.
“What’s most debilitating will be specific to each individual, with increasing diversity of outcomes as years post-injury add up. Some of it boils down to basic risk factors and genetics,” he added.
“The good news is that people can do things to alter the course of aging.”
Those reporting from the front suggest scrupulous, diligent self-care, increasing awareness of the importance of healthy and sensible living, and maintaining optimism. Add in improved medical care and pharmaceuticals, a far more accessible world and a perspective that comes from experience — and all this helps us face most everything with confidence.
All of which means the added years can be quite good. Good news indeed.
• For a variety of SCI-specific statistics: www.nscisc.uab.edu
• To calculate your life expectancy: www.nscisc.uab.edu/life-expectancy.aspx
• A 60-minute video of questions and answers from five long-injured wheelers: sci.washington.edu/info/forums/reports/aging-2012.asp
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.
What to Look Out For
Kathy Hulse, MSW, who has worked with wheelers in the community for the past 25 years, offers a list of challenges facing the aging wheeler:
• Shoulder problems and the changes they entail — switching to a power chair, a van and needing to hire care.
• Pain, which seems almost universal, and often seems to get worse, either because meds are less effective or side effects become more difficult to tolerate.
Other troublesome areas:
• Skin problems
• Bowel issues
• Parents and/or spouses aging and dying. Losing support systems force many to make difficult changes.
• Excessive sweating
• Osteoporosis Differences between paras and quads:
• Transportation is especially challenging and more expensive for quads.
• Finding good caregivers is also hard, especially for quads, who need more help.
Similarities between paras and quads:
• Everyone’s at risk for pain and needing assistance.
• Adequate funding makes big differences.
Maureen Preston and Cherisse Tebben, both nurse practitioners with years of experience dealing with wheelers living in the community, see aging show up as these problems:
• Problems caused by weight gain, which could be caused by inactivity and/or medications
• Problems cascading, causing more problems — like inactivity leading to weight gain and resulting in pain
• Urinary tract infections
• Sexual dysfunction
• Excessively long bowel programs
• Upper extremity pain
• Hands and hips for walkers
• Aging caregivers
• Painful Shoulders