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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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Quest Vol. 15, No.5  September to October 2008

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Online games provide an alternate world in which to play, say gamers with neuromuscular diseases. Here’s a primer of terminology, gaming options, social tips and info on how playing may affect muscles. In addition, Kid Quest, page 69, provides Internet gaming safety tips for kids.
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  Home> Publications > QUEST > Vol 13,No.2 January/Februaryl 2006

The Accidental Transfer

by Brice Carroll
Brice Carroll  
Brice Carroll, a retired accountant, lives in Hot Springs, Ark. He has limb-girdle muscular dystrophy.

 

Living with limb-girdle muscular dystrophy, I have to rely on my wife for a lot of assistance in day-to-day living. Luckily, Sharon is exceptionally strong for such a thin, feminine woman. She can pick me up and move me around relatively easily.

And my average weight’s 150 pounds. (In fairness I must disclose that my average weight is calculated by averaging the scale’s measurement and my ego’s estimate.)

Sharon's strength gets a lot of attention when we’re in public. When she picks me up from my wheelchair and sets me in the passenger seat of our full-size van, passersby stop in their tracks and gawk in amazement.

One man even said, “Boy, I wouldn’t want to make her mad!”

I puffed up with indignation at his insinuation that I should be afraid of her. I was tempted to say, “Hey, I make her mad all the time. She’s afraid of me!”

But I didn’t want to take a chance of hurting her feelings. Or of her having the urge to prove that she’s not afraid of me: “Oopsy. I’m so sorry that I lost my grip and you’ve tumbled to the ground. I must be just quaking with fear.”

Nice Trip

I wish I could say that we’ve never had any real accidents. We have, but very rarely — generally only when she forgot to take off what I call her “accident-waiting-to-happen shoes.” Some of my wife's shoes, principally certain sandals and house shoes, have caused her feet to slip or otherwise caused her to trip when she turned after picking me up.

Though Sharon’s not aware of it, I’ve offered all such shoes to my dog and the neighbors’ dogs as chew toys. They won’t get anywhere near them. Don’t tell me dogs don’t have a sixth sense!

Though accidents are rare, occasionally I do find myself sitting or lying on pavement, carpet, a door sill, the shower floor or other people. We’ve never broken anything, no bones anyway, and always had a good laugh afterward. It might’ve been several days afterward, but we did laugh. At least Sharon did.

Man in wheelchair  

She still laughs about the time when, in the middle of the night, she woke me up trying to turn me in bed while I was sleeping. Unfortunately, I woke up while she was doing it. When my head hit the floor. Apparently she wasn’t quite awake either.

I blamed it on her for being careless. She blamed it on me for being lopsided. She said she turned me on my side as usual, but apparently after she let go of me, my lumpy side kept me turning. I said the only part of me that was lumpy was my head. And only after she dumped me out of bed.

At least it didn’t hurt. Much.

The worst thing about it has been the recurring nightmares of playing a very frightening game. Normally, dreams about playing horseshoes would be pleasant and relaxing. The reason they’re scary to me is because in these dreams I’m the horseshoe.

Slip Sliding

But sometimes I get to instigate the laughter. Once, to be funny, I gave Sharon a big, noisy kiss on her neck after she picked me up from my wheelchair and was turning to put me into another chair.

She started giggling and almost dropped me. She became alarmed, stopped laughing and issued a little squeal. I thought her squeal was funny, so I started giggl... laughing! I started laughing! Macho men don’t giggle! And neither do I.

I told her not to worry about almost dropping me, because I’d always had an unsettling effect on women. I first noticed it when I was a teenager. Whenever I showed them any affection they’d squeal and get all flustered and clumsy. Sharon said they were probably stumbling in their panic to get away from me. She thinks she’s sooo funny!

We have a transfer board and a Hoyer lift that we could use, but she hasn’t got the patience to use the lift, and the transfer board has its own dangers. It sometimes gives new meaning to the phrase, “slip sliding away.” If the person pulling you across the board accidentally pulls you forward at the same time, you have a tendency to slide off onto the floor.

I enjoy watching extreme sports on television, and am amazed at the athletes who crash, injure themselves, then go at it again the next day. Sometimes it seems that the whole transfer process is like an extreme sport, and I’m an extreme athlete.

The difference is in our mottoes: Their motto is “No pain — no gain”; mine is “No pain! No pain!”

 
   
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