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Viewing 12 posts - 1 through 12 (of 12 total)
  • December 17, 2019 at 1:45 pm #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
    December 17, 2019 at 4:20 pm #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
    December 18, 2019 at 6:58 pm #183995
    Reply To: Hello

    Hi Neti and welcome to forum.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    January 8, 2020 at 5:47 am #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
    January 8, 2020 at 8:21 am #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
    January 8, 2020 at 1:59 pm #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
    January 9, 2020 at 6:52 am #184419
    Reply To: Hello

    Thanks Sarah, I hope you are in fine fettle?

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    July 26, 2020 at 3:27 pm #188763
    Reply To: Hello

    Hello,
    I am Josh

    Nice to meet you all

    Josh_Welby
    Participant
    Posts: 0
    Joined: 26/07/2020
    July 27, 2020 at 12:48 pm #188774
    Reply To: Hello

    Hello and welcome Josh. Glad to have you aboard. Would you like to tell us a little more about yourself and you MD?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    July 27, 2020 at 3:21 pm #188781
    Reply To: Hello

    Hello Mike,
    As I have Learning Disabilities and Movement Problems, I walk with a small Limp

    I was diagnosed in 1994 with Learning Disabilities after that I got my unrelated Limp,
    which I rather not talk about

    I have hardly any access to Changing Places Toilets so this is why I started my Campaign

    I live in London

    Josh_Welby
    Participant
    Posts: 0
    Joined: 26/07/2020
    July 28, 2020 at 12:48 pm #188807
    Reply To: Hello

    Thank you Josh. I do believe that the government are going to fund some extra Changing Places, but like everything else I will wait and see what happens there. Disabled toilet facilities are very few and far between in most places sadly, and in the seaside town near where I live almost non existent. Made much worse by able bodied people using them. Please keep up the good work, change is needed.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    August 5, 2020 at 11:33 pm #189039
    Reply To: Hello

    Hi Neti,
    I also have a wasting disease, Myofibrillar Myopathy. I also use a bipap at night and sometimes day, and I have graduated from a scooter to a full on power WC that will help me stand up.
    Mary

    Mary W Mary W
    Participant
    Posts: 0
    Joined: 05/08/2020
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