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Old 03-23-2011, 06:52 AM   #1
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Possible treatments in life time?

I'm 22 and suffer from DMD. Currently, I'm losing strength in my arms rather quickly and predict losing use of them in one or two years. So anyway, what I wanted to know is if there will be a chance of seeing a treatment for DMD in my life time, particularly one that would make it possible to gain muscle.

What has made my life bearable so far is being able to use my computer to play video games. This may sound pathetic, but it kept me from being horribly depressed. So now all I have left is hoping a cure will be discovered. Or hope the research in bionic arms progesses at a rapid pace. Man, that would be cool.

If none of the above is possible, anyone know of easy to use mouth controlled mice? I could probably use one of those for a few years. At least that leaves me with RTS games, and other mouse controlled ones. Unfortunately, mouse controlled games are getting more rare these days.

One last question, is there any chatrooms for people with MD? I wouldn't mind talking to other people who have the same condition, or a similar one.

 
Old 03-23-2011, 09:19 AM   #2
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Re: Possible treatments in life time?

Hi "LD",

I'd like to believe that there will be a cure or treatment in our lifetime. HUGE advances are being made toward that goal. I'm sure if you research Duchenne dystrophy online you'll be able to read about these advances. In fact DMD is probably getting the most attention right now, as it should, because it is so severe and because it affects young people.

Don't give up hope.

I have an adult form of Limb-Girdle so our situations are a bit different. But like you, I'm frustrated, disappointed and a bit scared of what's going to happen to me. The possibility of a treatment is what keeps me going. Also, my computer is my window to the world since I don't get out much. So I understand that. I'm sure you can find mouth operated equipment. Many companies produce them.

I can't share websites with you. Healthboard rules dictate that all posts are anonymous and include no personal information or links to sites where personal information can be shared, But I am sure you can find what you're looking for.

You can always post here if you need to just vent or share your feelings with others in the same boat.

Best of luck to you.

 
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Old 03-23-2011, 10:00 AM   #3
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Re: Possible treatments in life time?

Hey LD,

I too hope for a cure in our lifetime, and I know that progress is being made. I am 14 years older than you, and have LGMD 2I. I am right now at a point where I feel that hope is dwindling for me, but I still have hope for you, as Mark said you are younger than we are, and DMD is the type that gets the most attention and research.

I wish you luck!

P

 
Old 03-23-2011, 12:56 PM   #4
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Re: Possible treatments in life time?

Quote:
Originally Posted by michigani View Post
Hi "LD",

I'd like to believe that there will be a cure or treatment in our lifetime. HUGE advances are being made toward that goal. I'm sure if you research Duchenne dystrophy online you'll be able to read about these advances. In fact DMD is probably getting the most attention right now, as it should, because it is so severe and because it affects young people.

Don't give up hope.
Yeah, I have done a bit of reading on the research and progress towards a cure/treatment. Most of them seem to only slow down the rate it progresses though, which wouldn't do a lot of good for someone who already lost most of their muscles. Still, it's great for people who were born recently or are still young. I don't plan on giving up hope, but it's getting harder to keep a positive outlook.
Quote:
I have an adult form of Limb-Girdle so our situations are a bit different. But like you, I'm frustrated, disappointed and a bit scared of what's going to happen to me. The possibility of a treatment is what keeps me going. Also, my computer is my window to the world since I don't get out much. So I understand that. I'm sure you can find mouth operated equipment. Many companies produce them.
Just read up on LGMD. So did it start affecting you in your 30's? Man, that must suck. One day having a normal life and a job, then bam, doctor diagnoses you with LGMD.
Quote:
I can't share websites with you. Healthboard rules dictate that all posts are anonymous and include no personal information or links to sites where personal information can be shared, But I am sure you can find what you're looking for.
You can always post here if you need to just vent or share your feelings with others in the same boat.

Best of luck to you.
I wasn't aware of those rules, that's kinda lame. I hope you get treatment one day for LGMD, you're too cool to have a disability like this.
Quote:
Originally Posted by NP74 View Post
Hey LD,

I too hope for a cure in our lifetime, and I know that progress is being made. I am 14 years older than you, and have LGMD 2I. I am right now at a point where I feel that hope is dwindling for me, but I still have hope for you, as Mark said you are younger than we are, and DMD is the type that gets the most attention and research.

I wish you luck!

P
Shame they can't give the same attention to the other types of MD.

 
Old 03-23-2011, 01:05 PM   #5
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Re: Possible treatments in life time?

Quote:
Originally Posted by liverdish View Post
Just read up on LGMD. So did it start affecting you in your 30's? Man, that must suck. One day having a normal life and a job, then bam, doctor diagnoses you with LGMD.
I just turned 50. Started feeling the MD at age 39. I consider myself fortunate. I have a wife and two beautiful daughters and we are happy. Often I feel bad for my wife but she seems OK with it. I had a pretty good childhood and young adulthood. So I never try to complain. I always feel bad for the younger people that get robbed of some of life's adventures.

You seem pretty cool too. Keep a good attitude like you have. I believe we all may get some good news someday soon.

Take care,

Mark

(apparently first names only are permitted)

 
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