Hello – 32 years old, Becker MD

Viewing 4 posts - 1 through 4 (of 4 total)
  • #184217
    Hello – 32 years old, Becker MD

    Afternoon everyone, I’m Charlie. 32 years old and live in Staffordshire.

    I was diagnosed with Becker Muscular Dystrophy when I was about 8 after my nan noticed that I ran on my tiptoes. I used to regularly attend the Children’s Hospital in Birmingham and aced all the tests until I was discharged at 16 (as was their policy back then). Until 16 I didn’t really ‘stand out’ as different apart from a slightly different style of walking/running and tiredness after a lot of exercise.

    There was no ‘next phase’ when I was discharged and I was just left to my own devices. It was only about half way through my 20’s when I started to notice changes and struggles in my daily living (walking up stairs, difficulty standing from sitting, general weakness) so I went back to my GP and was referred to various services (cardiology, neuromuscular specialists etc)

    I’m now 32, still ambulant and able to look after myself. I try and go to the gym and a class in the water twice a week and I attend the Neuromuscular Centre in Winsford on a Thursday. I live in a terraced house with my (soon to be wife!) partner. I struggle with stairs, need something to lean on to get up, drive an automatic car and have a walking style that is noticeably different to other people.

    As I write this I realise how lucky I am compared to some of the stories I have read on here – I guess I am writing all this down to give those (and the parents of those who are newly diagnosed) with the same condition as myself hope that all is not lost and that it is possible to still be living an almost ‘normal’ life into your 30s. Without that almost 10 year gap in seeing specialists, I think I would still be able to do the stairs and get up unassisted.

    If I had to offer advice to anyone with Becker MD I would say keep as active as you can. If you can still walk up the stairs and get out of a chair unaided, make a point of doing it – once you stop it is extremely difficult to get it back! I was extremely active until the age of 16 with cycling, playing football, walking. It was once I started to drive and do less exercise that my condition deteriorated.

    There is a lot to take in there, if one person reads it and thinks ‘this is what I need to do to keep going’ then my post has served it’s purpose.

    Please feel free to message me if you have any questions about what I’ve written above. I haven’t used this site for a while but my new years resolution is to start using it more to pass on my experiences and advice.

    Charlie :yes:

    Vis Unita Fortior
    United Strength is Stronger

    Charlie
    Participant
    Posts: 0
    Joined: 23/11/2015
    #184232
    Reply To: Hello – 32 years old, Becker MD

    Hi Charlie.

    :welcome: Thank you for your post. It’s always interesting to read about another’s experiences. What struck me was when you said you had a time out of the hospital/support loop and I hear this from many people with MD.

    I too have thought of what advice I’d give younger people with my condition (I’m 41 and have Ullrich CMD). For me it would be to pay particular attention to keeping hand function maintained and do regular jaw exercises. I can’t change things now, there are things I miss doing like playing the piano and I’m cannot draw or write or sew like I did. Also, I cannot eat maltesers anymore coz I cannot get them in my gob anymore :lol: I laugh but there are a number of foods I find difficult to eat and dental work can be tricky. Like you say, if it helps one person avoid my frustrations or limitations it is worth sharing.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #184236
    Reply To: Hello – 32 years old, Becker MD

    Hello Charlie from fellow NMC visitor. Your story is indeed a valuable contribution to anyone starting out down the MD road. Thankfully things are better now than they used be be in the not too distant past, and I strongly believe will continue to improve, especially considering your motto at the bottom.
    Sar78, far be it from me to comment on your gob size, but I do know how you feel. Have you thought about the Malteser drops you can get. Like chocolate drops but made of maltesers. Got to be worth a try, its chocolate after all.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184237
    Reply To: Hello – 32 years old, Becker MD

    Hello Charlie from fellow NMC visitor. Your story is indeed a valuable contribution to anyone starting out down the MD road. Thankfully things are better now than they used be be in the not too distant past, and I strongly believe will continue to improve, especially considering your motto at the bottom.
    Sar78, far be it from me to comment on your gob size, but I do know how you feel. Have you thought about the Malteser drops you can get. Like chocolate drops but made of maltesers. Got to be worth a try, its chocolate after all.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
Viewing 4 posts - 1 through 4 (of 4 total)

You must be logged in to reply to this topic.

Keep in touch