Viewing 7 posts - 1 through 7 (of 7 total)
  • #183977
    Hello

    Hi everyone I’m neti. Was diagnosed with a muscle wasting disease in August 08.its still not been established what kind yet which is frustrating to say the least. I use a bipap at night and get about with a stick and either a walker or a scooter, which is another frustrating thing at 47 years old. Anyway hopefully someone will be able to help me with accepting my life now.. Ps I really am a jolly person lol :P 😊 :new:

    Net net
    Participant
    Posts: 0
    Joined: 17/12/2019
    #183984
    Reply To: Hello

    Hi Neti

    :welcome:

    I’m Sarah, I’m 41 and have a type called Ullrich CMD (also known as a Collagen VI muscle disorder).

    I am also on bipap. I use a power chair and have a 24hr care package.

    For many years I was given a very broad diagnosis but about 3 years ago it was genetically pinpointed. I think you’ll find there are a number of folk who have an undiagnosed type. Hopefully as new diagnostic techniques are developed, this will change.

    Feel free to ask any questions, have a browse or a ramble.

    Best wishes

    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
    #183995
    Reply To: Hello

    Hi Neti and welcome to forum.

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

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #184365
    Reply To: Hello

    Being jolly isn’t mandatory. Take me for instance, I’m a miserable git!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184369
    Reply To: Hello

    :waving: Ranald! Good to hear from you :D

    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
    #184375
    Reply To: Hello

    Hello Neti . I have FHSD, and, like you, I use a scooter, sticks and lots of other things to get me around and keep me ‘normal’. Then I decided that i didn’t want to be normal I wanted to be me, regardless. So I carry on using the sticks, scooters and etc, but I use them for me, in my way. So I go racing with my scooter and the grandchildren on their bikes, you always have a seat with you if your are on wheels. Lots of storage space when shopping with spouse. Lots and lots of things where you can make your MD work for you instead of the other way around. But as Ranald says, you can still be a miserable git if you want, and I want many times, as my MD has taken so much of what I was. Now I have accepted that I am something else and it matters less to me.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184419
    Reply To: Hello

    Thanks Sarah, I hope you are in fine fettle?

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
Viewing 7 posts - 1 through 7 (of 7 total)

You must be logged in to reply to this topic.

Keep in touch