Home > Topics > Muscular Dystrophy UK – General discussion boards > Caring for someone with Muscular Dystrophy

Worried about the future

Viewing 4 posts - 1 through 4 (of 4 total)
  • December 10, 2012 at 3:28 pm #74641
    Worried about the future

    My son has FSH and although he is very cheery I am increasingly worried about the future. He is Deaf and we sign with him but now that he is a teenager he is using a wheelchair to get out and about. He has had several nasty falls in the house in the last couple of weeks and it seems that he will need to use a wheelchair at home too. I don’t know why this upsetting me so much but I can’t see how this will work. We can’t afford somewhere bigger and I feel really out of my depth. I am putting on a brave face to my family but I am terrified. Have other carers any tips on how to adjust to this sort of thing? Any support would be really welcome right now.

    BudgieMum
    Participant
    Posts: 3
    Joined: 04/03/2011
    December 10, 2012 at 4:02 pm #86997
    Re: Worried about he future

    Hi, I’m not a carer, I have LGMD so I can only imagine how difficult it must be to see someone you love deteriorate, try to see the positive in what he can do and don’t worry about the future just take each day as it comes.

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    December 12, 2012 at 11:38 am #86999
    Re: Worried about he future

    Hi

    My name is David and I lead up the advocacy service at the MDC.

    I am sorry to hear about your situation with your son. I am not sure if you have heard about the MDC advocacy service but we offer support in fighting for individuals getting the services they are entitled to. It sounds like you may be in need of re-housing or adaptations. I would be happy to support you in this.

    If you would like to discuss this with me please contact me on 020 7803 4808.

    David

    AdvocacyDave
    Participant
    Posts: 32
    Joined: 09/01/2012
    December 12, 2012 at 7:04 pm #86998
    Re: Worried about the future

    Thank you Vikki,
    You are so right. The future is always not quite what we expect and the stuff that feels hard is probably not the stuff that actually is the hardest. I will try to bear that in mind.

    And thank you David,
    I will give you a call and maybe you can answer some questions for me. I think I am facing a steep learning curve at the moment and everything feels intimidating and insurmountable.

    It was really kind of you both to reply to me. I really needed a bit of perspective and you have both been really helpful.

    BudgieMum
    Participant
    Posts: 3
    Joined: 04/03/2011
Viewing 4 posts - 1 through 4 (of 4 total)

You must be logged in to reply to this topic.

Keep in touch