Support Group For Our Sons
On an unofficial PPMD Facebook group, a young man from Australia who has DMD recently posted a concern he has about our group. I normally wouldn't reprint someone's full post, but I think it's important for us to hear:
"I'm a sufferer of Duchenne Muscular Dystrophy and I have a major criticism of Parent Project from what I have read on your website you make out that if a boy is suffering from DMD he has no hope of leading a good life.
"It is made out not explicitly but certainly implied that boys with DMD can die tomorrow or within the next hour, things like Pat Furlong's video the DEATH GENE, yes DMD is bad but it isn't a total death sentence, I lead a great life attending University, Playing Wheelchair Sport and going out with mates.
"These parents are destroying these guys lives your not helping them by constantly focusing on the fact we might die when we are 20 or 30, if you live your life constantly worried by this you won't achieve anything. Really what you should be doing is encouraging them to get the most out of themselves, keep going to school, go to Uni and get on living your life as normal as any other kid"
This got me thinking. With new medications hopefully hitting the market soon and improved care protocols, we will begin seeing many of our boys living years, if not decades, longer than they ever had before. They will be facing completely different challenges both emotionally and physically. This group is for us parents to come and discuss things in ways that we may not want to with our children. It can come off as fatalistic to a younger person actually going through the muscle wasting process. Perhaps we should start looking forward to a sister site just for the boys. Someplace that they can go and talk about the issues affecting them with their peers. Just a thought, but I really think we should begin thinking about it now.
"I'm a sufferer of Duchenne Muscular Dystrophy and I have a major criticism of Parent Project from what I have read on your website you make out that if a boy is suffering from DMD he has no hope of leading a good life.
"It is made out not explicitly but certainly implied that boys with DMD can die tomorrow or within the next hour, things like Pat Furlong's video the DEATH GENE, yes DMD is bad but it isn't a total death sentence, I lead a great life attending University, Playing Wheelchair Sport and going out with mates.
"These parents are destroying these guys lives your not helping them by constantly focusing on the fact we might die when we are 20 or 30, if you live your life constantly worried by this you won't achieve anything. Really what you should be doing is encouraging them to get the most out of themselves, keep going to school, go to Uni and get on living your life as normal as any other kid"
This got me thinking. With new medications hopefully hitting the market soon and improved care protocols, we will begin seeing many of our boys living years, if not decades, longer than they ever had before. They will be facing completely different challenges both emotionally and physically. This group is for us parents to come and discuss things in ways that we may not want to with our children. It can come off as fatalistic to a younger person actually going through the muscle wasting process. Perhaps we should start looking forward to a sister site just for the boys. Someplace that they can go and talk about the issues affecting them with their peers. Just a thought, but I really think we should begin thinking about it now.
Replies to This Discussion
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Permalink Reply by lisa burke on
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What an excellent idea. I certainly know of a quite a few young men in Britain who would be interested in such a site.
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Permalink Reply by Ian Anthony Griffiths on
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Well I agree with alot he said there BUT it is still a death sentence now nearer the late twenties-thirties. It never destroyed me knowing I could die at anytime, because there was no reason for me to be worried. Its how its projected on to the sons by the parents. It isn't fair for him to generalise either, DMD is different for each and every guy, not all of us can go to uni or enjoy the social sides of things.It all depends on the attitudes of healthcare professionals and the countries social care services. Both of these in Wales are inadequate and its highly difficult to get anywhere. I always had goals in school until i became really unwell and had to quit, lots of guys do continue school and university and are mentioned on here alot. I still have goals and I'm an artist,poet and writer (all self taught).
As for somewhere to go for us guys, well my website duchennemen has been running nearly two years now. It is aimed at the older guys with DMD with no talk of dying just positive information and reasoned debate from our point of view. I run the site on my own, you can visit it at http://duchennemen.net16.net
Ian
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Permalink Reply by Julie Gilmore on
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Ian, you are truly an inspiration, and I can only hope that our son has as much get up and go as you do when he is older.
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