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  • #185384
    Bmd help

    I have lived my past 10 years in denial and this is first time reaching out to anyone. I am very grateful for the life I lived up to now. I was diagnosed with bmd when i was 13, i experienced very bad cramping in my legs when trying to train for hockey. Tried everything to stop it and then the testing started. Long story short it got better after puberty. And went on to play best hockey of my life after that. I played junior hockey and was a respected hockey player. As years went on I did notice weakness in my legs. Deep down I knew what it was from but refused to think about it. Later after hockey I started working towards a career. I am not one to sit around it drives me crazy. I love working with my hands and building things in my garage. I recently got into motor cross to satisfy that passion of wanting something to drive for. And I found a new love in a hobby. I say all this not to brag I have been very blessed, but maybe find someone that has had an active lifestyle into there 20’s. my parents blocked my bmd out of there lives cause I think they noticed I did (I refused to see doctors and believe them). Been in a dark place lately knowing it’s starting to affect me. Not that my excessive activities will be slowly ripped away from me. I think I can handle that. But more so how to start a life, I have a beautiful girlfriend for 7yrs. And to be honest my pride is in the way of getting her involved long term (she’s so perfect I think she doesn’t deserve it). I guess I am looking for stories from other people’s experiences. I find comfort in all of your guys Incredible stories of persevering with these conditions. Not knowing my future scares me, but hearing from others has definitely been helping me.

    Posts: 0
    Joined: 13/02/2020
    Reply To: Bmd help

    Hello and welcome. Firstly may I say that I am glad that you have come here and are thus beginning to deal with the problem head on. It took me many years to come to terms with my FHSD, and it was so much harder for me than my son. But your comment about not knowing the future scaring you, none of us know our future, but I see that you are adapting and getting into motocross. Life for those of us with MD is about adapting, but it is like that for those who do not have it. For me it took away my career of over thirty years, then another career of twenty, and now, well I am retired of course but I am also a qualified drone pilot. Like you I have adapted. I can sit down to fly! When I can no longer get out to fly, then I have something else lined up for me. Like you adapting to my changing circumstances. I have also stopped using the term “MD Sufferer”. I have MD and yes I suffer with pain. I try not to let it control my life, I want my life to control the MD.
    I see that you are also looking at the positives. Not hanging around but getting out there, getting a career and a “beautiful girlfriend” too. You may think she doesn’t deserve it, but she may not deserve being cut out of a significant part of your life. I rapidly found out who my friends were when I started showing symptoms. My wife was there by my side through thick and thin, and now also helps raise money for MD. She has been with you for seven years, by now I think you must know she is committed to you MD or not. Let in, let her help, let her understand, let her share. Then perhaps your future will not be as scary.


    So many love songs, so little love.

    embayweather embayweather
    Posts: 8
    Joined: 02/11/2015
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