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Making Our Way: Knowing what to expect is key to aging gracefully with disability

Monday, September 20, 1999

By Patti Murphy

Independence can be a lifelong investment for people with disabilities. Holding on to it as time slips away can be a real balancing act.

Patti Murphy

You "walk a fine line between energy conservation and activity" while aging with a disability, said Dr. Melissa Moon, associate medical director at D.T. Watson Rehabilitation Hospital in Sewickley.

Physically, you're more at risk for advanced problems if the disability alters the way you walk, said Dr. Michael Boninger, a physiatrist and executive director of UPMC's Center for Assistive Technology.

And you're more vulnerable emotionally if you keep your mouth shut, especially if you need daily assistance. Discuss your needs with your family and caregivers. Be firm but gentle. Your future may be an awkward subject if they're aging themselves.

"It's kind of like talking about sex with your kids," said D.T Watson social worker Sal Schlieper. "It's not always easy [but] you actually disempower yourself by not talking about it."

Schlieper said that people with disabilities face a "double whammy" -- growing older and struggling a second time for the freedom to do things for themselves. Others may not want to hear about it.

"We come from a culture where once you lick something, it's done and over with," she said. "A lot of [disabled folks] find that they're back to square one. They've licked something once and now they're licking it again."

How you fare in this round has a lot to do with how hard you pushed yourself all along.

"This is personality-dependent," said Moon, an osteopathic physician. "Some people don't know how to sit still. Some people don't know how to motivate themselves."

 
  Help for women in need

According to U.S. Surgeon General David Satcher, more than 10 million American women are physically disabled and millions more have mental disabilities. Often, these women face additional challenges such as financial hardship or social stigma.

For the first time, the U.S. Public Health Service's Office on Women's Health has compiled an extensive resource center for women with disabilities as part of its National Women's Health Information Center. Their web site, http://www.4woman.gov/, offers information on disabilities, laws, statistics, access to health care, financial assistance, abuse, parenting, sexuality, and links to advocacy groups in the private sector. The center also runs a hot line from 9 a.m. to 6 p.m. EDT at (800) 994-9662 or TDD (888) 220-5446.

   
 

Whether you're driven or content, it may be time to shift your expectations. Knowing what to expect is a key to aging gracefully. A disabling condition may not worsen with age, but it can be a catalyst for secondary chronic conditions including muscle weakness, joint pain, depression and fatigue. You may experience them at 40 while peers without disabilities may be 60 before they do.

Lifestyle changes may be in order. Anticipate tradeoffs. You may quit your job or work part time, hire an attendant or household helper. You may buy your first wheelchair, need special gadgets or take shortcuts when you cook, clean or dress. You may miss social gatherings when stamina is in short supply. Or you may opt for more fun and less work.

In the 1987 book "Aging with a Disability," psychologist Roberta Trieschmann writes "aging seems to increase the amount of the penalty" inherently imposed by disability.

It's generally thought that the longer you've lived with a disability, the younger you'll be when its impact on aging sets in. One exception would be those hit with traumatic mid-life injuries.

Disability alone doesn't account for the rate of aging, its visible signs or the quality of a person's health in later life. Genetics, lifestyle and overall wellness are in this, too. A physical disability doesn't exempt you from age-related problems such as arthritis. But it probably means that you've been working harder than the average person, perhaps putting in long hours to meet routine obligations. Bodily wear and tear may evolve sooner and more intensely than if you weren't disabled. You might rely heavily on one side of your body if the other is paralyzed or weak. If you're in a wheelchair, you might overuse your upper body to compensate for deficiencies in the lower half. Arms and wrists may take a beating if you've been walking with crutches or a cane for a while.

These taxing habits are necessary, but they're not an excuse to skimp on exercise, nutrition or rest.

Trieschmann suggests in her book that it might be healthy to adopt an athlete's regimen. It takes strength on a par with athletic prowess for folks with disabilities to perform ordinary tasks. Some get their best training at the onset of the disability. But since they don't equate the effort they put into daily activities with playing sports, they may overexert themselves for years without proper conditioning.

Workouts can be tricky when you're forced to work some muscles repeatedly while others lie dormant. Strive for variety.

"It's a good idea to get away from what you do all the time," Boninger said. His suggestions: Swim to work muscles hampered by cerebral palsy. Try an ergometer (that's like a bicycle for your hands that you pedal at eye level, palms down) if you're in a wheelchair. Do low-impact strengthening exercises and stretching. While you're at it, check your home's ergonomics.

If you reach or bend all day, you're wasting energy. Rearrange objects so you can get to them without fuss. Move your body selectively.

" 'Lose it or use it' is true to some extent," Boninger said. "What's more important for people with disabilities is to use it smartly."


Patti Murphy writes a monthly column on disabilities. You cane-mail her at pattimurf@aol.com



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