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.
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.
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.
Last edited by Madalot; 03-08-2009 at 05:38 AM.
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.
Hi Quantum Cookie
I am one of those parents with a child with MD that Mark was talking about. It is nice to meet you. I do not know how it feels to have MD, but I know how it feels to have a child with it and I would take his place in a heartbeat if I could, but I can't. My son is 6, he does not have DMD. the neurologist was highly suspicious of DMD at our first visits, but his DNA was negative for DMD. So we did the muscle biopsy and they think he has a form of limb girdle. We are currently waiting for answers to his type. He is in a clinical study and they are also doing tests to check for Emery - Dreiffus MD because he already is developing contractures at his elbows, along with his ankles. We are actually making a trip to his neuro today because he has really started falling alot more in the last few weeks, they even had to pull him in the wagon at school yesterday because he was so weak. The more you tell us about yourself, the better we can understand how you feel. I know as the mother of a child with MD it helps me to deal with this horrible disease. I get to see how all of you feel emotionaly and physically. I don't know, it just helps me to hear everyone's stories, I feel that maybe your life stories can help me with my son. And like Kathy said, vent as much as needed, we are all here to listen and try to help.
@madalot: I have to admit I don't know what it feels like to be diagnosed with MD -- I was aged three when the diagnosis was made -- but I do know how it feels like growing up with it. You're right, I have been dealing with Duchenne for my whole life, with things steadily getting harder.
The breathing problems have only really been affecting me for about the past five years, but have gotten much more severe the last two years. The problem though wasn't my oxygenation but the buildup of carbon dioxide, which is why my doctors suggested the tracheostomy.
I know from experience that it's a horrible feeling to slowly lose control of your abilities and know that there is nothing you can do about it. You find ways to cope, of course, but you can't help feeling that you lose a small part of yourself with every lost ability.
@CJs Mom: I can completely relate with what your son is going through. The weakness was obvious ever since I was diagnosed, but at around seven I started falling down more often, had trouble getting up, stairs became very difficult... I think I was around eleven or twelve when I had to resort to using a wheelchair.
At your son's age now he probably doesn't realise the full impact of everything yet -- from my own experience I was mostly blissfully unaware at that age. I'm not sure how fast Emery-Dreifuss MD progresses, but the teenage years proved to be very difficult for me when I began to understand.
I think one of the most painful things was seeing my schoolmates do everything that children their age do, and gradually losing the ability to join in with them. I can tell you that a parent's love and support is the most important thing during adolescence, and from what I've read you're already offering it to him.
My own parents have been supporting me my entire life and still do, having made a lot of sacrifices in their lives for my sake. It is more than I have words to express my gratitude.
And another important thing during adolescence is communication. My parents never really talked to me about my condition during adolescence and I found it psychologically easier to not think about or ask questions about my condition. But looking back, I think that if I had known more about my condition and how it would progressed, I would have done some things differently.
I have a form of MD and I also received a trach in Feb. 07. I am learning to live with the trach. It has made things a little more difficult but they are still doable. I think that the trach has given me a better quality of life because I do things now that I would never think about doing a couple of years ago. Everything hit me all at once so I am learning each day. This is a great place to come especially when things get hard.
Hi Quantum Cookie
I'm glad you found the board. Like some of the others here I also have LGMD. It's amazing when I do log on here and read posts it sounds like ME typing the posts. It's nice to vent and discuss with people who know exactly how you're feeling.
One thing you said that hit me is this - "I think one of the most painful things was seeing my schoolmates do everything that children their age do, and gradually losing the ability to join in with them." - I agree. It is so hard to see that - even as an adult it is painful to not be able to do things my friends and family do. It is such effort just to go to the grocery store and for them it is a walk in the park. (A walk in the park for me is even hard sometimes )
I want to be able to go on bike rides with my kids. I want to be able to run and chase them and pick them up and swing them.
Family support makes it all bearable. My family and husband couldn't be any better - I don't know what I would do without them!!