More Adjustments - Muscular Dystrophy Message Board

michigani · 01-12-2009, 10:25 AM

Vent time......I'm sure a lot of the adults, and probably some of the younger MD patients can relate. I've been surviving each day after making adjustments and modifications in my home. You know, grab bars, extra railings, toilet risers, all that fun stuff. They've worked well for a couple of years and made it possible for me not to ask for help every 15 minutes. Lately however those things aren't doing the trick. I can't lift my feet off the floor, well barely. This makes my legs feel like 100 pounds each so walking is really awkward and exhausting! It's really hard to turn in bed because my legs won't move, they're dead weight. I wake completely up when I turn because it's a major event. My wife sleeps in the other room most nights because of all the grunting and bed-shaking when I turn. Of course this means I can't even ask her for help. But I don't blame her, she deserves a night of sleep. Getting off a toilet is becoming really hard. I feel really bad for you gals....you deal with it all day!

I'm thankful I'm still driving with my hand controls but getting to the car and back in is the hard part. Once it gets too hard to get in and out of the house by myself, then the car will be almost useless.

Again, I feel no one but you guys understand. My family and friends are "used" to my situation and take it in stride. They can't really feel the frustration and fear of not being able to fend for yourself. OK. I'm done. Thanks for listening!

Stay optimistic and lets all pray for a major breakthrough in 2009!

Madalot · 01-12-2009, 01:52 PM

Hey Mark --

Must be something in the air right now as I am feeling a lot like you describe. It gets really frustrating when the accommodations we've made aren't working anymore, thus forcing us to make even more changes in order to get by.

I know what you mean about turning over in bed and I really sympathize with you on that one. I have developed a method that works for me, but it requires me to use my foot almost like a hook on the mattress to give me balance for the turn. It still works, but like you describe, it's becoming more difficult even using my foot.

I've been finding that sometimes, my hands just don't work right. I have trouble doing even the simplest things with them and need my children to help me. It's very aggravating really.

The other night, I found that for some reason, my right arm was so weak that I couldn't continue eating my dinner because I just didn't have the strength in my arm to keep raising my fork to my mouth. I was still hungry and wanted a piece of chicken, but the idea of trying to use my arm to pull pieces off the bone, then raise the fork to my mouth was just more than I could do. It was easier just to stop eating and be hungry than to keep trying to eat. Luckily, I haven't experienced that degree of weakness in my arm again, but the fact that it happened once has really upset me. I'm enough of a burden on my family without them having to feed me!! OMG -- that thought scares me to death.

I admire you, Mark, for getting the hand controls on your vehicle and continuing to get out amongst 'em!! I also totally understand what you're saying about the problems just getting to the vehicle in order to drive it. I've got a handicap ramp in my garage, but even navigating that can be a challenge. But it's better than steps!!

I think all of us here totally understand how you feel because all of us, to one degree or another, experience similar difficulties.

Maybe some others can chime in and share some more coping mechanisms that they use.

But I share your wish for 2009 to bring us all some hope for some kind of improvement in all of this!!