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Beating it.

Beating It

Physical Exercise

Ed Chasteen is 53 years old, a professor of sociology at William Jewell College in Missouri and director of the college's Ethnic Center. He has also been a canoer, jogger and camper.

In May of 1981, he was told he had MS and therefore "would not be able to be active anymore." His main symptom at this time was a dragging foot. "That verdict started three years of hell," he said. He went into a deep depression, crouching in a corner of his room and hiding himself for hours in his garage so that no one could find him. (Strangely enough, he never missed a class or stopped going to church.")

In the garage was his son's bike. He stared at if for weeks, and then one day got on it. At first he could ride no farther than a block. Three years later, he planned his first bike trip across the country to raise money for MS and an organization he founded, The Human Family Reunion, a group that brings together people of all colors, cultures and creeds.

To train for the event, Ed exercised several hours and rode his bike at least 20 miles every day. He still maintains this daily routine.

"Medically, I'm not sure what the process is, but I know when I exercise I feel 100%. If I skip a day for some reason, physically I am less able." He is checked regularly by his family physician, who tells him, "Do what you know you can do."

Right now, Ed is in the midst of planning "50 Centuries in America," which will be a combination event involving flying to all the capitals in the union and then biking 100 miles in each city. But his first steps toward "Beating It" came from the sense of mastery over MS he began to derive the day he got on his son's bike.

Do you have to be a super biker

to develop a sense of mastery over your MS through physical activity? The answer is no.

Psychologically, the sense of achievement comes from standing up to a challenge. The disease is saying, "No, you can't" and you are saying, "Yes, I can"--whether it's to cross the country or take a trip around the block.

As little as eight years ago when Ed Chasteen was diagnosed, doctors were saying physical activity was likely to exacerbate the disease. Today, most doctors and other health professionals agree that exercise is mentally and physically beneficial if it is done with large doses of common sense and the guidance of a health professional. (This is one instance where people listening to their own bodies helped doctors to arrive at new conclusions.)

Some forms of exercise and physical therapy are available for almost any degree of disability. Talk to you doctor about this. You may also want to obtain the following publications from the Society: Maximizing Your Health, ($4.00) and Moving with MS (one copy available free).

Sh-h- Genius at Work!

Michael Vander Kam, who was diagnosed six years ago, found he had a particular problem because he's troubled by drop foot as well as one leg that does not lift well.

"I found a cane was constantly filling a hand I wanted to use for other things," he says. "Also it didn't help me lift my leg getting into a car or up stairs. I needed something else; so I started to think--and after a year of design and redesign I came up with my Leg Lifter."

Mr. Vander Kam's product, he says, enables him to pull his leg up and forward for walking and he can pull it where he wants for keeping his balance. He fastens the leg strap around the leg of his fishing waders -- and it stays on. He uses it with a bathing suit and experiences no circulation problems. "I've now been boating, snow skiing, fishing, parachute jumping and white water rafting. Can you imagine trying to do any of these with a cane?"

Jerre A. Lane arrived at a point in her life where she needed more than a cane for support. Nothing on the market seemed to suit her needs so she decided to design her own walking aid. And that's how the Ambulator Escort was born.

This wheeled cart keeps you on your feet (one of her personal aims) while giving full support. It converts into a seat, however, when that's desirable. A special handbrake that operates with a minimum of hand pressure supplies safety and a pull-up basket for packages, purse, etc. provides convenience. "And," says Jerre proudly, "the cart folds compactly."

Conrad Carpenter left his cane in a store once too often -- and the result was the "Cane Guard." A simple device, it attaches to the waist, frees hands for holding handrails or signing checks -- and ends lost canes. Dale Ageloff was bothered by the awkwardness of carrying a catheter. Her solution: The Cath Case, a lightweight case which holds up to five catheters. The Flip Cane, invented by Harvey Horvitz, folds up into a convenient size that fits in purse or coat pocket; and SASA, a sock and shoe aid that eliminates bending, was invented by Sam Sanger.

Many inventions are the brainstorms of devoted spouses. Steve Mason, for instance, invented Cold Hat to relieve his wife's headaches and her heat fatigue. And we must not forget the person who may have been the very first inventor of any MS aid: Allan Thieme. The Amigo, the mother of all electric 3-wheelers, was his innovative contribution 20 years ago to help his wife.

The list could go on, but space prohibits it. There are no constraints, however, on imagination. "'Beating It' is a combination of being stubborn and being creative," says Michael Vander Kam. "Every morning when I wake up I don't think, 'Gee, I have MS.' But I do think, 'how can I make this a good day for me?' And it works."

Not everyone was born to invent,

but everyone has a streak of ingenuity that can be used to conserve energy, save steps and increase efficiency. That's what "genius" is really all about. Here are some ideas to start you thinking.

* Study catalogues and ads with an eye to purchasing special devices to meet your needs: it could be a reaching device, a special eating utensil, a bath aid.

* Consider where you expend most energy and then think about short cuts you can take. Even small ideas help: i.e. at holiday time use gift bags to save wrapping efforts.

* INSIDE MS carries coping tips in every issue: in articles, in the "Peer to Peer" column, in letters from readers. Collect these tips. Read other resource material. Consult your local chapter.

* Sit down -- perhaps with a friend -- and make a list of alternative ways to accomplish a task. Don't mind thinking "silly." You'll be surprised at the ingenuity that will ultimately emerge. And then -- you can share your "genius" with others!


Beverly Bettis, volunteer legislative liaison for the Oregon Chapter, tells her story in her own words:

"In the late 1960s after I became a widow and single parent, I completed nurse's training. I worked for one and one-half years as a registered nurse before becoming disabled. My sons were both two when my husband died, both six when I was diagnosed as having MS and about eight when I started using a wheelchair. Because I was uninsurable we did not qualify for a family policy, so for over 10 years I carried single policies on each son. Very expensive coverage on Social Security income!

"For many years being a mother and homemaker was all, and sometimes more, than I could do. But in the early 1980s I became a vocational rehabilitation client hoping to use my education. I completed a three-month on-the-job training at a local nursing home, working part time.

I did not become employed. One of the major deciding factors was the problem of medical coverage. Because of the wages, I would have lost Social Security Disability Insurance and with it Medicare. Even though I did not have medical expenses, it would have been unwise for me to be without medical coverage. So, I lost the opportunity to increase my income, because insurance companies did not cover MS."

Mrs. Bettis did not sit back, resigning herself to the situation in which her MS had placed her. Instead, she became actively involved in changing legislation which she felt was blocking her and other disabled people from pursuing their lives. The opening paragraphs you read were taken from testimony she delivered to the Oregon Legislature in April 1989. In 1987 her efforts as the chapter's lobbyist were instrumental in the passage of the Oregon Medical Insurance Pool. A good first step, but the law did not provide for the funds necessary to issue policies. This time around she was lobbying to insure that funding.

"My life has meaning and value and I'm not going to let multiple sclerosis limit me from making a contribution," Beverly says.

Lobbying is not the only way to

become an "activist." Beverly's work as a lobbyist grew out of her own needs, but her satisfaction and sense of transcendency over MS derives from the knowledge she is helping others.

"Giving moves the center away from yourself and helps to focus you on the world around you," says Dr. J.W. Silverberg, New York psychiatrist. "This does several things: it puts your own problems into perspective; it generally necessitates contact with others, lessening a possible drift into isolation; and it offers rewards which bring a new sense of accomplishment into your life."

There are many groups and many causes that would welcome the interest of a caring person. Your first step in this direction might be to call your own local MS chapter.

One Day at a Time

La Nell Adams, who also tells her own story, captures the spirit of every unsung hero who has heard the words, "You have MS" and then has doggedly gone about the daily task of learning to live with it.

"This is a story about my battle with the disease called multiple sclerosis. One day, I found I was paralyzed from the waist down. I could not sit up and my hands were so weak, I could not feel or do anything useful for myself. I spent several months in the hospital, and the doctor told me I had MS. Reality hit me hard in the face. I had to use a wheelchair to get around. My husband of 1-1/2 years left me. I was 25 years old. At first I just sat around in my nightgown all day, but my doctor finally talked me into rehabilitation. Therapy became a very important part of my life. I was determined not to give in to the disease.

"Months passed and some of the paralysis left and feeling returned to my limbs. Paralysis was not the only symptom that occurred. My hands were numb and weak. My handwriting was very shaky and bad. Speech was so slurred I got tired just trying to form my words. My vision was blurred and my right eye very painful. I even had difficulty in breathing and spent two months in the hospital before my lungs were strong again. When I went home, I would get up out of my bed and take small baby steps, leaning against the wall for security.

"But after three years, I gradually moved from a walker to crutches to a cane. Now I walk unassisted. I also drive and I recently returned to the university to complete my education. I am studying restaurant hotel management and I just made the dean's list.

"I decided a long time ago I was going to do what I could for myself everyday instead of staying in bed and letting life pass me by. I wrote this letter because it is therapeutic for me to share my struggle with this illness. I hope I can be an encouragement to someone else who has had to face it."

"If one day at a time" has become

a cliche, it's because it so aptly expresses a basic coping truth.

The qualities of determination, stick-to-it-iveness and sheer guts that emerge in Ms. Adams' letter are not unique in the MS world; channeling them is the key. Here are some guidelines for coping one day at a time.

* Try not to think too far ahead. Literally, take each day as it comes and deal with it.

* If you are faced with a number of MS-related challenges at the same time, sit down and make out a list of priorities. Then tackle them one at a time. The priorities can be determined with the help of a counselor, physician or family member.

* Find a treating physician with whom you can establish a comfortable relationship. This will help you practically and emotionally.

* Don't lose your self-confidence. Change and growth don't stop. Give yourself time. A support system of some kind will speed the process.

* Sometimes what you are working towards won't turn out exactly the way you had hoped. Take it one day at a time from that point; it's o.k. to readjust goals.
COPYRIGHT 1989 National Multiple Sclerosis Society
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1989, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Title Annotation:personal achievements of multiple sclerosis
Publication:Inside MS
Date:Jun 22, 1989
Previous Article:Rare disease may offer clues to MS.
Next Article:Support: a daily dozen - minus one.

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