Viewing 9 posts - 1 through 9 (of 9 total)
  • #185194
    New Member

    Hello all,
    My first ever post, my son is 7 and has just been diagnosed with BMD i am really scared, worried and upset, any advice would mean a lot
    Thank you, Kelly

    Kellyjo123
    Participant
    Posts: 0
    Joined: 05/02/2020
    #185199
    Reply To: New Member

    Hi Kelly,

    Welcome to TalkMD. I understand that this is a worrying time, and you must have lots of unanswered questions. The members of this forum are here to support you and share their own experiences and advice.

    If you want to, you can also ring the MDUK Helpline on 0800 652 6352 or email info@musculardystrophyuk.org. We also have a page on BMD https://www.musculardystrophyuk.org/about-muscle-wasting-conditions/becker-muscular-dystrophy/ and a factsheet that you might find helpful https://www.musculardystrophyuk.org/about-muscle-wasting-conditions/becker-muscular-dystrophy/becker-muscular-dystrophy-symptoms/

    Best wishes,
    Emma

    Online Manager, MDUK
    Looking to get more involved with the MD community

    Emma Smith-Bodie Emma Smith-Bodie
    Participant
    Posts: 0
    Joined: 30/07/2018
    #185217
    Reply To: New Member

    Hello Kelly, welcome to the forum. I too have BMD, although I didn’t get a diagnosis until I was 28! In hindsight, the signs were all there but I didn’t start to become really concerned until I was struggling to climb a staircase, and physically couldn’t break into a run; this all seemed to happen in a very short space of time.

    The neurologist I see annually said my condition is progressing very slowly, and I will probably never need to use any aids except a stick (which I now use), and maybe a rollator later on.

    Taking positives from a bad situation, at the very least BMD is not DMD, and perhaps your lad will be as mildly affected (maybe even less) that I am!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #185228
    Reply To: New Member

    Hi Kelly, welcome to TalkMD.

    There must be a lot of things going around in your head right now and everyone deals with a diagnosis differently. It sounds like your son’s diagnosis is a fairly recent one and I’m sure you have a lot of questions. It can be helpful to write them down as you think of them – I find my mind goes blank the moment I enter the consultant’s room.

    I think at the age of 7, it was much harder for my parents to deal with my condition than me – I adapted to the physical changes which were very gradual, not always plainsailing, but it was my reality and most of the time I accepted it.

    I have a different type of MD and even within sub-types there is variation as Ranald said. Please feel free to ask questions or just have a ramble about things. If/when you feel ready you might want to look up your local muscle group for support and info.

    Keep in touch.

    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
    #185284
    Reply To: New Member

    Welcome Kelly. As the others have said this is a good place to go to learn, to express yourself, to rant and many other things. One of my sons was diagnosed with FHSD at age 14. Far from holding him back it has helped shape his life . He is now a successful programmer, IT expert, owns his own home and is vary happy. All this and he is far from forty years old. Ranald was quite right, try and look at the positives, there may be more than you think.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #185319
    Reply To: New Member

    Hi Kelly, I was diagnosed with BMD at a similar age when my Nan noticed I ran on my tiptoes. I’m now 32 and whilst I can’t walk up the stairs without a rail or get out of a chair with a little difficulty I live a fairly ‘normal’ life. The condition affects people in different ways but there is a much better support network around now than when I was a child. My advice would be to keep him as active as possible and doing things that one day he might struggle with (like walking up stairs) but most of the struggles I have only really started in my mid twenties.
    Stay positive, if you have any other questions then this is the place and everyone will be more than happy to help.

    Charlie

    Vis Unita Fortior
    United Strength is Stronger

    Charlie
    Participant
    Posts: 0
    Joined: 23/11/2015
    #185320
    Reply To: New Member

    Hi Charlie, nice to hear from you and nice to hear you lead a fairly normal life, and some positivity. I am really worried but felt hopeful that when he went to his appt they said he was a strong boy, after his physio assessment so I am trying to be positive and pray that he can lead a normal life in the hope it is slow progression. I am also awaiting my results to find out if I am a carrier and also have two older boys, but I will just have to wait and see what they say, I just feel so worried & upset but really trying to be positive 🙂

    Kelly

    Kellyjo123
    Participant
    Posts: 0
    Joined: 05/02/2020
    #185321
    Reply To: New Member

    When I was discharged from the children’s hospital at 16 there was no pathway into support around the condition for adults. That has changed now and will stand your little boy in very good stead. I’ve met people with the condition who were window cleaners and living very active lives and didn’t notice a deterioration until much later in their lives.
    Charlie

    Vis Unita Fortior
    United Strength is Stronger

    Charlie
    Participant
    Posts: 0
    Joined: 23/11/2015
    #185365
    Reply To: New Member

    My former neurologist told me he once diagnosed a retired coal miner! (Not sure if retired due to age or due to Thatcher) You are right, some people can lead a normal life with BMD.

    I only wish I had known when at school, as I could have geared my education towards sedentary desk based work instead of messing about on building sites etc.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
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