I’m a physical therapist who has been working with Shirley Butler, a woman diagnosed with inclusion-body myositis 15 years ago. At that time her physicians told her that she would just lose strength and should expect to eventually be in a wheelchair.

vans but other items also. I have not, however, been able to find that EZ Lock system you mentioned in the $275 to $400 range. Could this be a misprint?

Richard Baldwin Disabled Dealer of Virginia

Editor’s Note: The full cost of a complete EZ Lock system for tying down a wheelchair in a van runs to about $1,500, including installation. The amount mentioned in the May article referred to the typical range of installation costs only.

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Last fall she fell, due to weakness, fracturing both of her tibias [shin bones]. Through the rehab process she is now stronger than she was before her fall.

Shirley and I would like to share the importance of maintaining an active lifestyle. There is loss of strength due to the muscular disease processes, and then there is loss of strength due to inactivity. We have control over the inactivity side of the equation, and we need to share this with others who have a muscular dystrophy diagnosis.

Sasha Foster,
Fort Collins, Colo.

COST CORRECTION

Congratulations on a great article, “Used Adapted Vans Increase Your Buying Power” [May-June]. I have found countless bargains throughout the country using the Disabled Dealer Web site, not only for

LIFE IS GOOD, EVEN WITH OPMD

As I approached my late 50s I was showing signs of difficulty in walking, swallowing and eyesight. My eyelids were drooping, and choking on food became more frequent. At Brigham and Women’s Hospital in Boston a neurologist gave me an evaluation and a blood test. Within a week or two, I was diagnosed with oculo-pharyngeal muscular dystrophy.

The year was 1998 and the gene for OPMD had just been discovered. I was relieved to find exactly what I had, but apprehensive about how it would change my life. The doctor explained that this type of MD was slowly progressing.

In my early 60s I opted to have my eyelids lifted. This made seeing a lot easier. My walking got more difficult and I started to use a cane. My husband, Arthur, installed handle grips at all doorways, had two ramps installed and step risers made shorter. Eventually a walker was added to my wardrobe. I used a chairlift to go up to our bedroom.

LOOKING AHEAD IN QUEST . . .

Watch upcoming issues for articles on:

• power hockey

• orthopedic equipment for those who walk

• metabolic myopathies

We found a smaller house with a master bedroom on the first floor and an open floor plan. Before moving in, we made the bathroom accessible and installed hand grips. I was now walking full time with the walker.

After I fell at home, I managed to reach a phone to call for help. This prompted my husband to get me an alert button. I still wear it today; it makes one feel a lot more secure.

I recently fell getting out of the shower, and Arthur contacted an agency for help. The next day a physical therapist visited me and started exercises with my legs.

The following week an occupational therapist came to see me, and a whole new world opened up for me. Because my arms won’t reach any higher than my shoulders, ordinary household chores were very difficult. The suggestions made by the OT were quickly put in place.

These ideas changed the quality of my life: A long-handled grabber, a walker with a basket, a ramp in the garage for exiting the car, closet racks lowered to shoulder level; a toilet raised to 23 inches and chairs to at least 18 inches high; 3-inch risers and hand rails on steps outside. I also have a recliner with a remote that lifts me to a standing position.

I am now 65 years old and doing fine.

Thanks to the therapists and their wonderful ideas and the men and women who work hard and diligently to find a cure for MD. And a special thanks to my husband, Arthur, for loving me and always looking for new ways to make life easier for me.

Life is Good!

Carol A. Yannone Brockton, Mass.

• career changes with neuromuscular disease

• new trends in scooters

• and more on technology, travel, accessibility issues and medical care

Check www.mda.org/publications/Quest/ q-helpquest.html to find out which stories we need to interview people for.

By sharing your story, you’ll be helping others with neuromuscular diseases.

Hurry! You only have until July 16 to send photos of creative wheelchair Halloween costumes for Quest’s annual September feature. Send photos and identifying information to the street or e-mail address listed at the top of this page. Digital images must be large files of at least 300 dpi.