Viewing 6 posts - 1 through 6 (of 6 total)
  • #176123
    Being a parent with MD

    Hi all,

    I have recently become a parent of two twin boys whilst already having a nearly 5 year old girl. On the past 2 years the MD part of my condition has really kicked in with weak legs a real problem and I’m starting to use a wheelchair and mobility scooter (I’m now 33)

    Would love to hear the stories from other parents who have MD with how they have coped and adapted

    Rgwood86
    Participant
    Posts: 0
    Joined: 10/03/2019
    #176137
    Reply To: Being a parent with MD

    Hello and welcome to the forum. I was diagnosed late in life after my son was, so I probably cannot tell you the sort of stories you may want. I must say that throughout it all, my children have been a lifesaver and a rock in the midst of all that will go on in your MD life. Whilst I cannot begin to imagine the challenges of having twins will bring to your family, they will all be worth it. I will add though that there is not one of my kids and grandkids who have not had a barrel full of laughs riding with me on my scooter. One time it was the only way one of them would go into hospital.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #176146
    Reply To: Being a parent with MD

    Hi. RGwood86

    Not a parent myself but a dedicated aunt. I progressed to a scooter in order to safely keep up with an active 2 year old nephew. that was in my mid 20s.

    Whats your Condition? I have MD rigid spine SEPN1.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #176690
    Reply To: Being a parent with MD

    I became a farther a little over 4 months ago (I’m 25), having already been diagnosed with LGMD2B. Stairs are a challenge for me and carrying anything with almost any weight, up any sort of step, including that of my front door, which is barely 6 inches. Which when you have change bags, car seats and any number of other things you need with a little one, can be frustrating and challenging.

    It upsets me not being able to carry my little one up to bed, but then when out, walking with the pushchair is really good for me, as any sort of distance I find much harder without.

    I had a very fortunate childhood and very active with my late farther, always next to his side when DIYing, fixing cars, teaching me to ride my first motorbike, and it pains me to know that I won’t be able to do the same for my child and hopefully children in the future.

    Sorry for the pessimistic views, I’m only just coming up to 2 years confirmed diagnosis, and I feel that maybe my head could be in a better place about the whole situation.

    Jonno118
    Participant
    Posts: 0
    Joined: 08/02/2017
    #176698
    Reply To: Being a parent with MD

    Jonno, please remember that kids are far more understanding than we give them credit for. Mine have been absolute rocks for me, in helping me. They do not see the MD they see their Dad, as yours will too. Your child will rely on you for many things throughout their life , not just active things. You will still be wise old dad who can help make things better with everything, even if you cannot do it yourself. You will still be dad that can wrap them up with love when things go wrong. You will still be dad who they will miss when you go away. You will still be dad who teaches them to read. You will still be dad when……….. well you get the picture. Yes there will be some things you cannot do. Like you I cannot pick up my grandchildren, but I an give them rides on my zum zum (mobility scooter). I can still teach them things and I am an ear to listen when they moan about their parents.
    I can understand your pessimism, we have all been there. But don’t forget the optimism too from time to time.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #176956
    Reply To: Being a parent with MD

    Well maybe I’m not the best example for this but I will tell you the story from a different point of view my brother was around 5 or 6 when he start losing his walking ability. So I had to carry him to school and back literally! So do as my parents than we change on bicycle and than wheel chair when he get in to the adulthood. So what I want to say is in situations like this people don’t become weaker they become stronger becouse they have someone they care about in this position will make them more understandable more polite more human than all the education and money will . I’m not going to say it will be easy but I’m sure I wouldn’t be the person I am today if it wasn’t my brother he made all of us stronger than most of the people can imagine you can’t be depressed or nihilistic if you have someone to help. Well you can be depressed from time to time after all we are all humans we all have our demons. So my point was don’t be upset some people have all the body working and ticking and they use it to pump alcohol and drugs so I’m sure you understand what I mean. For me my brother is like my reason to be still here and live . Becouse I was in this nihilism state for decade! Good luck with your task I’m sure you will make it for some strange reason my brother is in chair and he is stronger than me huh go figure life is unpredictable :|

    Foggy88
    Participant
    Posts: 0
    Joined: 07/04/2019
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