what disability do you have any one else got muscular dystrophy?

baller
baller Posts: 29 Connected
in Coffee lounge

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Comments

  • ChrisR777
    ChrisR777 Community Member Posts: 1,890 Championing
    https://forum.scope.org.uk/discussion/comment/1110458#Comment_1110458

    Hi baller, do you get any help from the medical profession? I don't even get the annual neurology appointment any more.

  • ChrisR777
    ChrisR777 Community Member Posts: 1,890 Championing
    https://forum.scope.org.uk/discussion/comment/1110693#Comment_1110693

    I attended an annual appointment at the neurology department for the first 20 years since diagnosis, but 2 years ago, they suddenly said sort of 'only contact us if anything major changes'. The neurologist even stated they can't cure MD, which i've known from day 1.

    I can only assume that when we get to a certain age, they put us out to pasture. I had assumed me turning up each year was for them to note the decline, for future medical research or whatever.

    My biennial cardiology appointment still happens, as far as I know.

    As for physio, they signed me off years ago, as I wasn't getting any stronger? You can tell them about muscular dystrophy all you like, they never seem to take on board that it is a muscle wasting disease.

  • ChrisR777
    ChrisR777 Community Member Posts: 1,890 Championing
    https://forum.scope.org.uk/discussion/comment/1112155#Comment_1112155

    I will be 51 in June, what about you?

  • ChrisR777
    ChrisR777 Community Member Posts: 1,890 Championing
    https://forum.scope.org.uk/discussion/comment/1112670#Comment_1112670

    Well at least we are lucky having Becker and not Duchenne. Imagine being like this since a toddler.

  • ChrisR777
    ChrisR777 Community Member Posts: 1,890 Championing
    edited March 27

    I have met Duchenne sufferers at the MD conference, but that was a number of years ago, I don't really go any further than a few miles from my door nowadays.

    My grown up children don't bother with me either, and the ' been very busy' line grew old. It is what it is.

    The Talk MD forum was good about 15 years ago, but it fell away to just the odd person coming on, asking their question, never to be seen again. We are a small group, us Muscular Dystrophy types.

  • WhatThe
    WhatThe Community Member, Scope Member Posts: 6,313 Championing

    baller, I hope you don't leave as you are both good guys! He is one of the reasons I stay.

    I also get trolled when I dare to use my voice.

  • WhatThe
    WhatThe Community Member, Scope Member Posts: 6,313 Championing
    edited March 29

    We are told that Scope is trying to restore the PM (private message) function on this site.

    Until then, new members such as yourself are at a disadvantage without this extra peer support. You are double-disadvantaged with your comments queued so other members need to remember this. You also can't yet edit your posts like I just did.

    There is minimal moderation at weekends btw.

  • ChrisR777
    ChrisR777 Community Member Posts: 1,890 Championing

    So when were you diagnosed with muscular dystrophy @baller6, and what prompted you to seek medical help? I think i mentioned i was 28 years old, and was struggling to climb the stairs at home. My then wife demanded i contact my GP.

  • Community_Scope
    Community_Scope Posts: 2,463 Online Community Team

    Note from the Online Community Team: A number of posts have been removed from this discussion to allow it to continue on the intended topic. As stated in the House Rules, please try to keep discussions civil and supportive, and flag any further concerns with the community team.

  • ChrisR777
    ChrisR777 Community Member Posts: 1,890 Championing
    edited April 4
    https://forum.scope.org.uk/discussion/comment/1114945#Comment_1114945

    It gave me 8 years of often excruciating pain. I was told I was weak and believed it, I really thought the pain was what everyone went through, and I just wasn't taking it as well as others.

    I wish I had spent that 8 years clubbing with Mr Ebeneezer Goode, but i managed a bit of that at least. No testing then…

    Sir John Betjeman said it well.

    https://www.youtube.com/watch?v=EJ1yCEPwLH8

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