A warning to families

Our daughter Alexandra (Lexie), who had limb-girdle muscular dystrophy, died in January 2007 at age 26, from complications of an emergency treatment for kidney stones. We hope that sharing her story might help prevent a similar tragedy for other families coping with this disease.

Lexie used a bilevel positive airway pressure (BiPAP) machine, which helped in the treatment for her breathing disorder. Today, though, there is still some misunderstanding in the difference between BiPAP and continuous positive airway pressure or (CPAP), a mechanism used to treat sleep apnea. When the term BiPAP is used in explaining medical conditions, many automatically think of CPAP. Even though Lexie was on oxygen while in the hospital, the importance of keeping her on the BiPAP machine was not recognized.

After her death we met with the hospi-

Looking ahead
in Quest ...

Watch upcoming issues for articles on clinical trials, moving out of a parent’s home, kid-friendly doctors, and finding money to buy needed equipment.

To see what articles we’re working on and volunteer to share your experiences, go to “You Could Be in Quest,” www.mda.org/publications, or call your local office (800-572-1717) and ask to be mailed a printout of this feature from the MDA Web site.

tal staff and discussed the medical findings from the autopsy and the importance of the need for continuing education in this area of medicine, which all agreed with. We urge families to never assume that the medical teams caring for their loved ones with neuromuscular diseases [and respiratory problems] are familiar with protocols necessary for those with weak respiratory muscles, and to communicate strongly the need for continuous BiPAP treatment with oximeter monitoring whenever medical attention is needed.

 

Jeffrey and Marcia Dahms Jason Dahms, limb-girdle muscular dystrophy Des Moines, Iowa

 

Editor’s note: for more on appropriate ventilation for those with weak respiratory muscles, see “Not Enough ZZZzzzs?” page 22.

Inventor was a hero

In August 2007, we lost a true hero in the world of disability, Ken McRight,

81. In 1951, Ken invented the first air-supported wheelchair cushion, the Bye-Bye Decubiti cushion, more commonly known as the BBD. Ken was paralyzed from the middle of his back down when he was shot in a Dallas nightclub in 1950. For 50 years, primarily by attending trade shows, he sold his product through his company, Ken McRight Supplies. He also sold other medical supplies of his own design, including bed overlays and writing/eating trays for wheelchairs. He retired in 2000.

Those who remember Ken at trade shows no doubt saw him doing push-ups in his wheelchair and bouncing down on his amazing cushion. Throughout his long life, he was a hero and mentor to many other fledgling inventors of products that help the disabled. I know his willingness to share advice with other business persons is greatly missed by his hundreds of business friends.

The irony is that Ken passed away as the result of a nursing home stay without his amazing products. He will be missed, but his legacy and pressure relief invention will continue to help thousands of wheelchair users for years to come!

 

Kate Stephens Rand-Scot sales specialist Fort Collins, Colo.

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Good article

I think the article on metabolic muscle diseases (“What Not to Eat,” November-December 2007) was excellent and captured the importance of high-protein nutrition in these conditions. It also dealt with the different opinions of the three investigators very fairly.

Alfred Slonim, M.D. Columbia University Medical Center New York

Foot swelling tip

I was diagnosed with Friedreich’s ataxia 20 years ago. I’ve had trouble with my feet and lower legs swelling because I’m always in a wheelchair. [After a] sur-gery…my feet and legs swelled so big. When I got home my husband made me put my shoes on. I left them on all day and I put them on each day and I have no more swelling. My feet got so small from no swelling I had to buy smaller shoes. If you have any questions, e-mail me at teresa_fuller@sbcglobal.net.

 

Teresa Skyles Osage,Okla.

 

Note: The writer describes a non-traditional approach to treating swollen feet. More typically, doctors recommend support hose or graduated compression stockings, which work on a similar principle of compressing tissue to avoid fluid accumulation. As there are many causes for swelling (also called edema), it’s important to consult your physician for proper treatment. — Valerie Cwik, MDA medical director and vice president of research