Aging is inevitable, always full of surprises and often not what we expect. NEW MOBILITY reached out to a sample of aging wheelers, most retired after long careers and active lives, to see how they were faring and gather their impressions. What were their biggest challenges, surprises, coping strategies and fears?
What we heard was somewhat predictable, but also surprising: Many were surprised they were still around and doing as well as they are. Coping strategies ranged from faith in God to staying organized, relying on experience and hard-earned knowledge, being inherently optimistic and positive, and having strong marriages or relationships. More than a few cited support groups or having a strong support system as being particularly helpful.
Each faced a crisis or turning point in their 50s or 60s — a blown out shoulder, serious weight gain, cancer, a stroke, long-term confinement due to skin problems, etc. Each could have given up and faded away. Instead, they relied on inner strength and resilience to face the challenge and soldier on.
Fears and concerns ran the gamut, from further deterioration of skin to increasing money problems. Predictably, several spoke of worrying about nursing homes in their future.
Laura Kelly, 59
T1-2 Incomplete Para
44 Years Post-Injury
Biggest challenge: Weight control. Over the years I gained one to two pounds each year, until about five or six years ago I weighed in at 177 and had an “oh no” moment — it was more the number than how I looked. I’m active, independent and healthy, but there’s no way I can burn the same calories as a nondisabled person. I was only taking in 1,400 calories a day and had to drop off another 300 calories a day to lose weight. Over the course of about two years I dropped 44 pounds and got down to 133. Ideally I should probably weigh 130, but now I weigh between 135 and 140, and I’m happy enough with that.
Biggest surprise: I am still here, almost 45 years after my injury, and not just alive, but active, healthy and doing well!
Coping Strategies: Being organized; group support. It is good to be in a group of people all dealing with the same problem, be it SCI, raising kids or losing weight. I try to stay active mentally, socially and physically, and have a good network of friends and family. I also have medical professionals I can call on for support. Having so much experience is most helpful. My friendships with other SCI women over the years have been invaluable. It’s wonderful to have this network of intelligent women with similar histories and challenges to turn to for advice and support.
Biggest Fear: Falling and breaking bones. Many of my friends, now over 50, have broken something in the last five years. My left tibia had a spiral hairline fracture from a nasty twist, so I’m cautious, especially with various transfers. I’ve taken some nasty falls and feel lucky that none resulted in a broken bone. Osteoporosis runs in my family, so now even my arms are affected, and I take medication.
Christine Timmins, 67, C4-6
39 Years Post-Injury
Biggest challenge: Skin problems. I’ve had 12 ischial surgeries, used various ROHO cushions, two different Ride cushions, and now I’m on my second or third generation-cushion from Aquila Corp. I can no longer sit up for 12-15 hour days, nor can I get up every day. I never fully healed after the last surgery and probably won’t. I’m constantly trying to find a happy medium of what I can continue to do and what I have to let go. It’s frustrating.
Finding good caregivers and the money to pay for them is also a huge challenge, as well as money for many of my necessities. Being retired makes it even more challenging. I’ve gone through all my savings and now rely on my retirement and state assistance for home health.
Biggest surprise: Improved ADA accessibility, the internet and cell phones.
Coping Strategies: Strong faith in God. I feel his love and grace daily. I was lucky enough to be born with a “Pollyanna attitude” where I almost always see the glass half full instead of half empty, which is most helpful during hard times. My mantra is: Breathe in — feel gratitude; breathe out — offer thanks.
I stay busy in retirement, even though I’ve mostly been confined to bed. I listen to books on tape, get things done with a laptop, and stay active in my church by leading and participating in several ministries. I also maintain a newsletter for a service dog organization and wrote a book titled, The Upside of Down, which can be found on Amazon.com.
Biggest Fear: I know I can stay busy while lying in bed, but it’s not my wish to do so. I also try not to think what might be down the road.
Barry Leavell, C5-7,
43 Years Post-Injury
Biggest challenge: Cancer. I was diagnosed with cancer in my neck last year. I had surgery to remove my saliva gland and 27 lymph nodes, two of which had cancer. During surgery, I was fused at C3-4 due to deterioration above my original injury level.
Next came seven weeks of alternate regimens of radiation and chemo. The radiation was very difficult, burning my mouth badly and wiping out my taste buds. Everything tasted bad and I ended up with a feeding tube. The radiation also destroyed my immune system, almost totally wiping out my white blood cells.
Because the radiation destroyed the small blood vessels in my throat, I have difficulty swallowing and must do several different exercises daily to help me swallow. The lymph node surgery caused a good deal of inflammation and tightness.
Biggest surprise: Good news — I just finished up six weeks of range of motion PT to loosen up my shoulder and recently began playing tennis in a wheelchair tennis league!
Coping Strategies: The doctor said if I did the treatments, I’d have an 85 percent chance of getting better. I’ve never been a quitter. I had good care and a good support system. I’m retired and have a pension. My wife was very helpful and her support went a long way. Also, a neighbor helped me out a lot with transportation. Because of the fusion I was unable to transfer independently and couldn’t have done all the treatments without them. I’ve had a full life, did a lot of sports, wheelchair dancing, scuba diving. All that helped out a great deal, as well as having the support system of people in my situation giving suggestions and resources — a huge help physically and psychologically.
Biggest fear: What will I do when I can’t take care of myself?
Bob Felker, 69, T10
49 Years Post-Injury
Biggest challenge: Orthopedic issues. My shoulders. About 12 years ago I took a nasty fall and ripped all the tendons in my shoulder. It wasn’t repairable; the other shoulder was worn out as well. I’ve had four shoulder surgeries and did PT after each of them, and continue to do some. I’m currently doing PT for shoulder and elbow issues, primarily arthritis. I went from a manual chair to a power assist chair, which remains my primary chair. The shoulder issues have affected my transfers and I now typically use a power chair for the more difficult transfers and things like shoveling snow — because the power chair is more stable.
Biggest Surprise: How much we need to self-advocate. I see many different doctors and some of them are giving me conflicting recommendations. We need to be well-educated in all aspects of our injury and not rely on the professionals to know everything that’s going on. Just last week I obtained some previous CT scan reports for my personal records and read about an abdominal aortic aneurysm. This is potentially life threatening, yet three doctors who had reviewed it never mentioned it to me.
Coping Strategies: Letting go of the idea that I can work harder to get stronger and accept the fact I’m aging. Losing independence makes life more difficult, but I’ve tried to modify my activities and equipment to allow me to maintain a decent quality of life. I’m very fortunate to have a good marriage, a good support system and good resources. Knowing other gimps has been tremendously helpful. Even though their individual issues may be different, it’s somehow comforting to know I’m not the only one experiencing problems.
Biggest fear: Skin problems. I need to be super-vigilant to prevent breakdowns. I’m very cautious now in my transfers and diligent in my weight shifts. Fatigue, of course, is an ongoing issue. Like most of us, I have worked hard to maintain my independence and am fearful of losing it.
Jack Dahlberg, 68, C6-7
49 Years Post-Injury
Biggest challenge: Increasing vulnerability of my skin. I have to monitor it constantly. One of the upsides of being dependent is that I have help monitoring it. The high resolution cameras with phones make it much easier to keep a close eye and spot problems. I split my time between Denver and the Gulf Coast of Florida and have difficulty finding accessible skin care outside of major cities.
Coping Strategies: Knowledge. My job is a life-care planner and expert witness in catastrophic injuries, so I’ve had to learn a lot over the years. I’ve learned to listen closely to what my body is telling me and respond accordingly; if you don’t, it can lead to big problems.
My work has always had peaks and troughs, but I’ve been very busy the last 18 months. I still enjoy what I’m doing and have no plans of retiring soon, though I know I’ll have to slow down at some point.
It also helps that I’ve had a good life, am OK financially, optimistic, don’t dwell on negatives and have a great support system: a wonderful significant other, Jo Ann; a very close and supportive immediate and extended family; and a large circle of friends.
Biggest fear: I’ve had the same primary care physician for the past 40 years and am very concerned about what happens when he retires or dies. I also have some anxiety about finding good home care as the economy heats up and people move on to better paying jobs. My biggest concern is wrapping my head around living in a nursing home — very scary.
Charlotte Hepner, 66, T11
34 Years Post-Injury
Biggest Challenge: Pressure sores, high cholesterol and blood pressure, worn-out shoulders, hands riddled with arthritis, not enough money, and then I’m diagnosed with having a stroke in my eye. Recently my doctor told me that my cord is collapsing on itself in the cervical area and could cause problems. It just seems like there’s nothing to count on, so it can be pretty scary sometimes. But apart from some occasional blurry vision, the stroke had no long term consequences. It mainly affects the worrying part of my brain more than anything, thinking that it can happen again.
It takes me a lot longer to do things now and it’s harder to do them. I can’t take food out of the oven safely, so I stay away from oven cooking so I don’t drop something hot on myself; cleaning, especially up high or down low is quite painful; I have a good deal of hip pain that sometimes can be just overwhelming, even with a morphine pump.
Biggest surprise: We’re all still here. But through it all, I don’t feel old — my brain’s still telling me I’m young.
Coping Strategies: Helping other people or getting on the riding mower and mowing the grass. My husband, John, who’s also in a chair, helps me; we help each other. Gimps helping and learning from each other also is a big help. I still see people from my days with Dancing Wheels. We have lots of gimp friends as well as John’s old clients from his repair days. I have a lot of friends, stay socially active and am fairly optimistic and positive.
My dog, Olive Oyl, a black Lab I’ve had for 10 years, helps the most. We go for walks and sit by a neighbor’s pond while she watches whatever dogs watch, and I read a book. When the pain gets really bad, Olive helps me feel better. She’s a wonderful companion; I just love that dog.
I’ve had a full life with few regrets and that helps. Who knows what’s to come in the future? That’s the zest for life.
Biggest fear: Losing Medicaid. The rules are tight in Ohio and I had to quit my part-time job; Medicaid never told me that whopping $300/month was too much of an income. CareSource now manages our Medicare and Medicaid. Money is a big concern. John worked full-time for years until his skin broke down and he had to quit; Now we can’t even qualify for food stamps.
In summary, no one ever said aging is easy, especially with a serious long-term disability. Our respondents have been through a great deal. But no one in our sample was looking to move to a state with assisted suicide and ending it all. They have learned how to ride the rapids and navigate the rough water.