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MDA’s award-winning bimonthly national magazine goes to everyone registered with MDA, as well as to MDA clinics, researchers and subscribers.
Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.


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  Home> Publications > QUEST >Vol 4 No 2 1997
Get Outta Town: Outdoor recreational opportunities are more
abundant than ever, and they're good for mind and body.
by Carol Sowell

Whether you prefer to paddle your own canoe, hug a tree or admire bird acrobatics, nothing is more rejuvenating than spending time with Mother Nature. By applying ingenuity, people with neuromuscular diseases enjoy a vast range of ways of engaging nature on their own terms.

Bob Mora likes a challenge that's as big as all outdoors. His thirst for adventure has blazed many trails for other people with disabilities.


LEVELS OF ACCESSIBILITY

All his life, Mora has loved hiking, and having to use a wheelchair full-time as a young man because of peroneal muscular atrophy didn't slow him down much. As president of Awareness to Access Inc., a Tucson, Arizona-based nonprofit organization, he promotes increased accessibility to the wilderness for people with disabilities, accompanied by minimal impact on the natural environment.

Rather than creating segregated recreational areas for wheelchair users, Mora likes the concept of "universal accessibility" or "ROS - range of opportunity spectrum." In other words, he'd like to see all recreational areas have many levels of accessibility so the individual user can choose at what level to participate.

"Accessibility is relative, not all or nothing," says Mora, who is fond of exploring out-of-the-way areas as far as his wheelchair will take him.

Of one recent excursion, he explained, "The level of success was different for everybody. Some people hiked into the cliffs. There were parts where I crossed the river in my wheelchair, and some parts were inaccessible. There were so many accessible options, I didn't miss the inaccessible ones."


SETTING YOUR OWN PACE

Knowing that accessibility is where you find it is a key to a successful outdoors experience. Given today's range of adaptive equipment and abundance of information, plus a growing commitment to accessibility by public recreation areas, wheelchair users have many choices. Most first look at what they want to do, what they can do, and what they're willing to do -- then at how they might do it.

Herb and Hildegarde Finnen knew what they wanted to do last summer -- take a two-week motorcycle trip to see some of their favorite sites from earlier trips to Colorado, Wyoming and South Dakota. In the face of Hildegarde's rapidly progressing weakness from ALS, they found a way to do it.

Instead of sharing a bike as They'd done on past trips, Herb added a sidecar with a top to protect his wife from the weather. "It was enclosed. I could cover her up and she would be protected from the elements. I made her as comfortable as possible," he said. Behind the bike, they hitched a travel trailer, in which they camped out some nights, alternating with hotel stays.

The trip from Sugarland, Texas, to Crazy Horse Mountain, S.D., worked out well, both agree, by adjusting their schedule to Hildegarde's stamina. "We'd ride and I'd ask her if it was OK and she'd give me a thumbs up, or I'd give her a thumbs up and she'd say OK. And we'd continue," Herb explained. Starting each day at noon or 1 p.m., they rode until 6 or 7 p.m. each evening.

Leslie Washburn of Dover, N.H., also likes to forge her own pathway. An avid canoeist and camper, she notes, "It's easy to say, "I can't do that." But I've always found that if there's something I really, really want to do, I can find a way to do it. You have to be very flexible."


BIG PAYOFFS

What makes it all worthwhile for these outdoor enthusiasts?

Dr. Susan Iannaccone, director of Neuromuscular Disease and Neuro Rehabilitation at Scottish Rite Hospital in Dallas, says that "staying active helps people with neuromuscular disease stay stronger. It helps keep their heart and lungs strong, keeps the outlook positive, and improves." With some disorders, including spinal muscular atrophy, exercise and exertion actually improve muscle strength, she says.

Washburn agrees, saying that her outdoor activities help her remain flexible and limber and keep her weight down. Studies show that physical activity also helps people with disabilities improve balance, range of motion, alertness, sharpened senses, endurance, coordination, calming and circulation, as well as delay aging and decrease secondary medical complications.

Mora praises the unique psychological benefits of outdoor. "Disability is a challenge and so is the outdoors, in his view. "Living with and successfully confronting challenge is a growing experience. It generates a sense of empowerment and enablement, which adds to my relish for living."

He adds, "Most of us pick our activities based on the rewards we get from them. You're rewarded for successfully addressing challenges. The growth I experience [from outdoor recreation] goes far beyond any progress I experience as a result of my MD."

Marilyn Hammond, education specialist with the Utah Assistive Technology Program at Utah State University, cites other rewards of recreational activities for people with disabilities, including an increase in self-confidence, more willingness to take risks and greater tolerance of stress. Leisure activities also give participants control, immediate positive feedback, a sense of accomplishment and a chance to develop other skills.

There are also social benefits. Recreation helps get people out into the community and fosters greater inclusion and acceptance of people with disabilities.


GREAT MEMORIES

But the major dividend of outdoor recreation is enjoyment.

Though their trip put a lot of demands on her husband, Hildegarde Finnen is glad they went. "You really have to do what makes you happy. And the outdoors is wonderful. We've been doing it for years and we have seen the whole country and I have always enjoyed it," she says.

Herb recalls, "It got kind of ticklish sometimes, but every morning she managed to wake up with a smile on her face and tell me she was having a great time. The mere fact that she wanted to do that in the condition she's in is inspirational to me and the people that we met along the way. It was her idea. She said this was her life and she's not going to be a prisoner to ALS."

Mora revels in the beauty of nature and the opportunity to be close to wildlife. "When a red cardinal comes to join me for lunch, it could care less," if he's in a wheelchair, he notes.

Recently, Mora wanted to join a butterfly observation excursion to a canyon in Southern Arizona. Initially the group discouraged him because its van wouldn't accommodate his chair. He arranged to take his own van and meet the other participants.

"It was a challenge. I had to start extremely early. The reward was great. There was such a diversity of butterflies, alongside a creek. I made friends, and it was something totally new."


PUBLICATIONS

Adaptive Recreation Equipment, Access to Recreation, (800) 634- 4351. Free catalog lists products available for fitness, fishing, golfing, needlework, bowling, games and other activities, as well as portable ramps.

Easy Access to National Parks: The Sierra Club Guide for People with Disabilities, by Wendy Roth and Michael Tompane, Sierra Club Books, (800) 935-1056. Describes in detail accessibility and other features of 50 national parks, and lists groups providing outdoor recreation for people with disabilities.

Go For It! A Book on Sport and Recreation for Persons with Disabilities, Jerry D. Kelley and Lex Frieden, editors, Harcourt Brace Jovanovich, (800) 543-1918. Describes wide variety of activities. Out of print.

Great American Vacations for Travelers with Disabilities: A Fodor's Vacation Planner, Fodor's Travel Publications, (800) 533-6478. Destinations described in detail include 48 U.S. cities and several national parks. Lists state and city tourism offices and other resources, and includes section on planning trips and questions to ask.


ORGANIZATIONS
  • Awareness to Access, (520) 624-6452. c/o Direct Center for Independence. Ask for Bob More.
  • Breckenridge Outdoor Education Center, (970) 453-6422.
  • National Center on Accessibility, (800) 424-1877.
  • National Park Service accessibility guides to individual parks, (202) 343-3674 or (202) 208-4747.
  • North American Riding for the Handicapped Association, (800) 369-7433.
  • Wilderness Inquiry, (800) 728-0719.

Also check with your state's division of tourism or state parks office for accessibility guides. Independent living centers know about local recreational programs and accessibility to nearby wilderness areas. Many states also have recreational programs funded through the federal Technology-Related Assistance for Individuals with Disabilities Act. For a list call RESNA, (703) 524-6686.

 
     
     
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