Socialising with MD - Muscular Dystrophy Message Board

Quantum Cookie · 03-06-2009, 01:48 PM

Hey guys. I'm a 21-year-old living with Duchenne muscular dystrophy.

I've been searching for a site, a forum, a chat, anything where I can talk to others with MD. I feel this longing of a sort to talk to people who can understand and sympathise with what I'm going through. Of course I have friends, but... they don't really understand what it's like living with MD.

So I guess... this is me trying to find people who are more like me.

Madalot · 03-07-2009, 06:22 AM

Hi Quantum Cookie!!

There are numerous adult sufferers on this board, myself included. Many of us suffer from less severe forms of MD than Duchenne's, but can definitely still understand what you're going through.

If you are willing, please post more details and history so we can better understand your situation.

I have posted my history before so I won't bore you with it again.

Welcome to the board. There are some really nice and understanding people here.

Kathy

Quantum Cookie · 03-07-2009, 05:15 PM

Nice to meet you, Kathy.

As for more details about me... I've been on a wheelchair for about 10 years now. My movements are very limited, and I need someone to take care of me. My breathing isn't all that good, so I've had a tracheostomy done a few weeks ago after talking with my doctors. The idea was that I'd be using mechanical ventilation from now on, but I want to try going without for a few hours a day.

I go to university, which I've taken a leave from for a semester, until I get everything sorted out... And I think that's pretty much the basics about me.

Madalot · 03-08-2009, 06:38 AM

Hi Quantum Cookies --

More people will probably chime in here in a few days. A lot of regulars don't post for a while, then come back and check on things.

When you said you have Duchenne's, I was pretty certain your condition was fairly severe. I'm really sorry. It sounds like you've been dealing with this most of your life.

Many of us here are adult sufferers and quite a few are like me -- were weak as children, but not diagnosed with MD until adulthood. For me, being told I had MD was bad, but it also explained a lot from my childhood.

I can still walk, but barely. I have a wheelchair for bad days and any outings requiring walking.

As of now, I don't have breathing problems, thank goodness. But I know that it's possible down the road.

Post as often and as much as you want or need to. As I said -- most of us here that post regularly are adult sufferers that aren't quite as severe, but can still relate to what you're dealing with.

michigani · 03-09-2009, 02:08 PM

Hi "Quantum"

Welcome to the board. Like Kathy says there are a lot of people here that are all living with various muscular dystrophies. I'm in my 40s with Limb-Girdle MD. Most of the adults have forms other than Duchenne's, but the one thing we all share is the fact that our friends and families can't quite truly understand the frustrations of actually having the disease.

There are a few parents of kids with Duchenne's and other childhood MDs that visit here often.

Feel free to vent anytime. The dozen or so regulars here will be glad to listen. Remember.....personal info is not allowed on the boards but it's possible to send private messages if you feel you've got something in common with another user.

Take care and welcome!

Mark