What do you think about someone with Muscular Dystrophy?

Question

Hi,I hae Congenital Muscular Dystrophy,I was wondering how people think life with MD is and in general about them. Do you pity someone with it or just think they are like you?It would also be very helpful if you could help me get more info on Congenital MD,because of how rare it is I am in need of more info.
I have merosin-positive Congenital Muscular Dystrophy,thank you very much for your help!!!!!!!!!!!!!!!!

Answer 1

I also have a type of MD. It's actually Spinal Muscular Atrophy, Type II. I live on my own with my boyfriend and two cats. I use a power wheelchair, ventilator, and a variety of high-tech and low-tech gadgets. I hire assistants from 6 - 9 hours a day to help me with my personal care and household maintenance. I've been working since 1987, and am currently running my own business.

Answering your first question, I think people with MD or any other type of disability are both the same as and different from non-disabled people. Of course we're all individuals and different, but we generally are just regular people living under a set of circumstances that are unfamiliar to much of the world. On the other hand, we do indeed experience the world from a different perspective and we are often treated as though we are very different. I don't pity people with disabilities, but sometimes I am concerned about someone if I see them feeling bad about themselves or if they're being treated poorly by people or bureaucracy.

As for your second question, here's a web link to a page about your disability: http://www.mdausa.org/publications/fa-rareMD.html It may be information you already have. In my experience, the best information I've gotten has been from others with the same disability as mine, or folks who have disabilities that are similar to mine. Your specific diagnosis sounds similar to mine. You might enjoy getting to know some of us at an SMA on-line group I found a few years ago. It's the only one I've been able to find that has a lot of adults. Most such lists are parents looking for support about their disabled child. There a quite a few folks who don't have SMA on the list, but they have similar physical attributes. Check it out! Maybe I'll see you there...I'm Alana http://groups.yahoo.com/group/SMAfriends/

Answer 2

I too have MD. I was diagnosed at age 13. I am now 51. I stuggle to walk and complete many daily activites, but I have been teaching elementary school for 30 years! There is life w/ MD.... it's just different.

Answer 3

I think that people with MD or MS or cancer or any other disease are just like other people. You just have hurdles to overcome in every day life the most of us don't have to deal with.
I would suggest the MDA web site for the information you are looking for.

Answer 4

I feel sorry for them, because the've definatly been dealt a bad hand. However I won't treat them any differently from anyone else, I'm sure special treatment is very aggrovating.

Answer 5

READ my blog on MD. Help is a click away :)