Walking on Scary Surfaces - Muscular Dystrophy Message Board

michigani · 02-01-2005, 05:38 PM

Do those of you still walking run into the same terrifying, frustrating situations as me? It's almost impossible for me to walk on sand, grass, snow more than 2" deep (slipperiness aside, that's a whole other story), or to step up a little 4" or 6" curb without a railing. Last week I got to work (I'm still driving okay) and got halfway across the parking lot in 4" of snow and froze. I was terrified I'd fall and lost all confidence to take another step. There I was 150 feet from my building, trapped. I had to swallow my pride and call over a co-worker who gladly lent an arm to hold on to. Luckily this person had heard about my MD so I didn't have to explain. It seems so unbelievably stupid yet it's very scary. Can anybody relate?

Mark

dkbladez · 02-02-2005, 06:00 PM

Hi Mark,
I know exactly how you feel. We had about 2" of snow and I didn't even try go outside in it. I have most of my anxiety on step. It's like my brain tells me I can do it but my legs just don't work. It's very scary. Well I have an appointment for the muscle specialist in April, I guess he will do the muscle biopsy. I haven't been formally diagnosed but this has got to be what I have. Are you on any medication? Will doing exercise like walking or yoga help or slow down the progression? You just don't know how thrilled I feel to have someone who understands how I feel

Shellette

michigani · 02-03-2005, 11:03 AM

Shellette,

My MDA doctor had me try different regiments of vitamins and supplements including Coenzyme Q-10, Creatine and Carnitine. Apparently for some MD sufferers they work. I personally did not notice any difference. I would gladly purchase $30 -$40 worth of this stuff a month if it was improving my life but nothing was happening after months of trying them. Of course nothing's going to cure the MD. These supplements supposedly help your muscles use energy more effectively. The bottom line is, it depends what kind of MD you have whether or not these things will make a difference.

As far as exercising goes, yes, you want to do LIGHT exercise. If you DO have muscular dystrophy, your body cannot replace damaged muscle cells. So you don't want to exercise until you are sore. This is the goal of a weightlifter but not us. On the other hand you do not want your muscles to atrophy, or shrink from non-use. You must find that exercise zone between damage and atrophy.

By far the biggest favor I've done for myself is to stretch. The last thing you want is uncooperative muscles. It's hard enough to move through the day without battling muscles that respond like taffy. I especially make sure I take 30-60 seconds, 3 times a day and stretch my calves. I have very weak shins resulting in foot drop. This helps a lot and prevents me from needing braces to hold up my toes.

Good luck with the biopsy. I've been through it and a couple EMGs so I can answer any questions. Again, think about contacting your local MDA clinic. They have huge resources and some very compassionate people willing to help.

Mark

warpig · 02-08-2005, 09:35 PM

Mark,
Have you tried quanine? My neurologist is trying me out on it. I don't know much about it? It is supposedly an old drug.

michigani · 02-09-2005, 01:53 PM

Not yet but I've heard it mentioned. I'll read up on it then ask my doctor. I know there's no cure but just feeling like I have a bit more energy and less fatigue would be great. Thanks.
Mark