husband w/ beckers muscular dystrophy

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  • #146052
    husband w/ beckers muscular dystrophy

    Good evening to anybody who may be reading this. This message comes from a 27 year old newlywed who’s husband has in the past week been diagnosed with Becker’s muscular dystrophy. After a summer/autumn of hope, our optimism has come to nothing. I was hoping that there is somebody out there who can perhaps help me with coping with our new lifestyle and mourning the loss of our old ambitions. I am trying my best to be positive for him, but in the past month have experienced an ectopic pregnancy and see him laying asleep on the sofa most nights unable to comfort me through it. My husband is 29 and is a carpenter. He has major hypertrophy of the calves and is finding it harder to walk as the weeks go on.

    Yours kindly and thankfully.
    Z :new:

    snowball14
    Participant
    Posts: 0
    Joined: 23/12/2016
    #146053
    Reply To: husband w/ beckers muscular dystrophy

    Hi snowball and welcome to the forum.

    Firstly sorry about your ectopic pregnancy and the hard time you both are having. the loss of a child is painful.

    Its terribly hard but try to keep hold of them ambitions and aspirations. many of them can still be achieved if in somewhat a roundabout way or with adaption. From someone who has lived with MD for more than 20yrs, try and live in the now. Keep them hopes and dreams. It is a big change and a lot to take in. but personally giving in is no longer an option for me. it would be letting the MD win. You both will go thru the different stages of grief, anger and tears.

    there is MD care advisers doted about the country that have a wealth of knowledge about the various MD conditions.
    http://www.musculardystrophyuk.org/get-the-right-care-and-support/people-and-places-to-help-you/care-advisors/

    http://cdn4.musculardystrophyuk.org/wp-content/uploads/2015/02/Counselling.pdf

    cat

    ps
    everyone deals with it different. I was diagnosed with MD at 8yrs old. I put off doing stuff and only started reaching for dreams in my 30s. make a list and live. I was pretty much written off by the medical professionals as a child and was given years only. which caused me to give up and not try. dont give up you are a team and can be strong. be happy.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #146054
    Reply To: husband w/ beckers muscular dystrophy

    Hi snowball14

    I echo what Cat has said. It must be hard to see your loved one trying to cope and adjust, as you are also trying to process what you have been told and look ahead.

    It takes time to adjust and get a handle on a condition after diagnosis but it will come. You develop different ways of achieving your goals, although I am not keen on this expression you learn to “think outside the box” a lot!

    I don’t think there’s one way that works for all but know that we are here for you both and we can also signpost to other sources of info or support if needs be. I’m glad you have found the forum.

    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
    #146056
    Reply To: husband w/ beckers muscular dystrophy

    http://www.musculardystrophyuk.org/get-the-right-care-and-support/just-diagnosed/

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #146076
    Reply To: husband w/ beckers muscular dystrophy

    Hello and welcome snowball 14. I am so sorry for you ectopic pregnancy, but I do hope that you will have optimisim for the future, not just with pregnancy but with your husband’s MD. Cat has put it very well so I will not repeat her excellent words. I would say please do not “mourn” your plans, just look at it being a change in direction. All of us here have been through the moment when we are told the diagnosis. We have all adapted in our own ways, and we have all gone on to live happy lives.in one way or another. It is not the end of a life just the beginning of another.On here you will find an amazing group of people whom I am sure will help you get through this to the other side.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #146135
    Reply To: husband w/ beckers muscular dystrophy

    Dear Snowball,
    At Muscular Dystrophy UK we do have a peer support network where you are able to speak to people who have the condition and have lived with it for years, much like on TalkMD. I am happy to contact one of our peer support volunteers who has Becker muscular dystrophy if you would be interested in speaking with them.

    Please do send me an email on ambassadors@musculardystrophyuk.org and I can organise this.

    Joel

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #146262
    Reply To: husband w/ beckers muscular dystrophy

    Hi Snowball
    I understand what you are feeling. It’s about 18 months since I lost my mobility at 50 years of age. I too wanted so much more from life with my wife after our children have grown up. My wife is now my carer and without her life would not be worthwhile. She copes with the situation far better than I and keeps me motivated. Your husband needs you to remain strong and I am sure he will cope as long as you are there. I have found that rather than worrying about what you cannot do think of the things you can do together it seems to work most of the time for me. Don’t give up keep going and I always say to myself that there will always be someone worse off than me and when you look around the world there is.
    Tony

    Tony
    Participant
    Posts: 0
    Joined: 23/07/2016
    #146515
    Reply To: husband w/ beckers muscular dystrophy

    Hi Dear Snowball.I hope my information is valuable and lets you know that it’s possible to live a full, productive, exciting, and happy life even despite having muscular dystrophy.Please read my posts and find articles of particular interest http://www.medycynaludowa.com
    God bless you and yor husband!

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
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