-
hello
Just diagnosed with limb girdle MD. Not really sure what to think or do.
Re: helloHi,
it’s bound to be a lot to take in at the moment and it is a natural reaction to feel unsure about what it might mean. There are a few forum members on here with LGMD and once you have had time to absorb what you have been told you will find that there are people, resources and support to help you manage and adapt to your condition.
You probably don’t want to be bombarded with information at this point but you will find a number of resources on the MDC website for the newly diagnosed:
http://www.muscular-dystrophy.org/newly_diagnosed/have_you_been_diagnosed
There is lots of practical info out there and if there’s anything you want to know you can always ask one of us. Even if you just want to a bit of a chat, this forum is a good place to start. Anything we can help with, just ask
Best wishes,
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: helloJust wanted to say “Hi” and second what Sarah has said.
I have Limb Girdle too as well as a few other members.
It can be very daunting being newly diagnosed and having quite a bit of info to process. We’re a friendly bunch here and this can be a good place to start. As Sarah has said if you want help or a chat just ask
Re: helloHi – I’m new to this site, but not to MD. At 8 I was diagosed with a variant of Congenital MD. Still undiagnosed today – although we call it Ginger Syndrome! For obvious reasons … I have been very, very lucky in that it is only laterlly that my Gingerness has begun to start affecting me moreso. I still work full time (but this will be up for review very soon), have a 13 year old adoptive son, run the home, 4 cats and get both my husband to work and son to school every day, have OCD about house work and hoover every day! It’s hard coming to terms with any condition – school was vile and I hated it due to bullies. I threw splints out of my bedroom window, refused to do my exercises, went vegetarian and did waht I wanted, when I wanted. I was in denial. But as I have grown older, I find the way to cope with my ‘specialness’ is to find out as much as I/you can about it, be stubborn; as much as you can YOU control it, don’t let your pride ruin days out with family and friends … I have to use a chariot now when we go out. I’ve cried buckets over its arrival but was missing out on so much. I felt the same when I finally admitted I needed a blue badge for my car. And then got a lovely new car on motability … try to remain positive. At least we know what we have! We can blame our bizairre behaviour on our condition and if the outlaws ask to visit you might not be up to it!! So there is always a silver lining! I am still a veggie by the way and I believe it has helped. Obviously this is not a medical view point but it does keeps my weight at a very static point. Take care. x
Re: helloAlexandra, your story is really inspiring. Particularly like where you say, “as I have grown older, I find the way to cope with my ‘specialness’ is to find out as much as you can about it, be stubborn; as much as you can YOU control it” . And like “Ginger Syndrome” too.
Molochside, you can also do a search for “limb girdle” on here, just type it in the search box on the top right of the screen. Like Sarah says, quite a few members here have posted about their experiences of it.
Take care,
Sam
Re: hello@molochside wrote:
Just diagnosed with limb girdle MD. Not really sure what to think or do.
Hello Molochside – There is something I would like you to try and do, for us here and yourself, and that is don’t sit back in silence, don’t be shy asking a question even if you think it is silly, don’t be afraid to say you are scared because everyone here has gone through the exact same things. Please do not feel you are alone with this condition, we are a battling supportive bunch ony too please to help where we can.
Give yourself time, keep a journal, I have kept a bad mood book for years and when I had a day when my condition p’d me off or something at work miffed me or a friend absolutely tested my resolve I scribbed it in the book and boy I let it all out there. The writing is illegible [just as well really
] and sometimes I broke into shorthand but it did me good.Stay in touch
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: hello@alexandraginger wrote:
It’s hard coming to terms with any condition – school was vile and I hated it due to bullies. I threw splints out of my bedroom window,
Mine was my shoes, I had fallen walking home from the bus stop and had to use a neighbours garden tree to pull myself up. It was raining, I was soaked through to my unmentionables. I flung open the front door and hurled my lovely lovely so wanted shoes as far as I could and screamed at the top of my lungs that I was “Beepin’ well fed up of having to manage”. My Mum stood there agog, it was the first time I had sworn in her presence and the first time I had such a tantrum
@alexandraginger wrote:
be stubborn ….. We can blame our bizairre behaviour on our condition.
I love your writing style Alexandra, I said to a tradesperson who got the wrong side of me “I’m crippled, not dumb!”. I can be highly sarcastic when suitably riled.
Welcome, nice to meet you
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: helloThose last few posts made me giggle, its amazing how sarcastic you can be when rub up the wrong way
Re: helloWhen I feel somebody is patronising me my favourite response is “don’t pee in my pocket & tell me it’s raining” and then I am free to get my point across as they stand there open mouthed
Hello Molochside,
I have type 2A LGMD. I am coming to the last year or years hopefully that I will be on my feet. My balance is shot & I have no strength to prevent falls & recently there’s been a few. After the last one my Dad said maybe it’s time I changed career because I’m a rubbish stunt man
Woogy
You must be logged in to reply to this topic.