December 17, 2019 at 1:45 pm #183977Hello
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 😊Net netParticipantPosts: 0Joined: 17/12/2019December 17, 2019 at 4:20 pm #183984Reply To: Hello
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.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015January 8, 2020 at 1:59 pm #184375Reply 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.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015
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