Hi
I'm Suzanne, from Surrey England. I'm 39 now but started my symptoms back in my early twenties. I just wanted you to know that it's not the end of the world, even if it is a pain in the butt sometimes! I have two lovely children, aged 5 and 8. I work part-time still, keep house, take the kids to school and pick them up, and get them to all the football, dancing clubs they belong to. I also love to go out to pubs & restaurants with my family or friends. I've been married for 16 years and have the best husband!
At home I have a stairlift, bathlift, toiletseat lift and ramps. I get around indoors using a crutch and furniture to steady myself. Outside I use a manual wheelchair because I want to try and stay as fit as I can. I have a hoist so I can get it in and out of the car myself. I've also got a small mobility scooter which i use for family walks and taking my son to football!
People always say to me, "I don't know how you do it?" or "you always stay so cheerful" but it is just part of my life & you have to get on with it. There are worse diseases around! My kids are a big help too. It's no big deal to them... I'm just their Mum! They've grown up with me being disabled and I think they're quite proud that their Mum is a little different from the others!
I went through all the same "why me" feelings and emotions (and if I'm honest, I still do on occasions) but please, please, please do not let it beat you and ruin your life.
----- Original Message -----
Sent: Sunday, March 02, 2008 8:50 PM
Subject: [SPAM][dysferlin] My Story
Hi, my name is Samantha and I was diagnosed in March of 2007 with
LGMD2B at the age of 24. I first started showing signs of weakness
at the age of 20 but contributed it to a car accident I was in where
I was ejected out of the vehicle. I got pregnant in March of 2006
and had a complicated pregnancy. I was about 5 months along when I
started noticing that I was getting weaker. I had problems getting
up the stairs without using the handrail. My daughter was born in
December and within 3 months it became nearly impossible to get up
the stairs or getting up on my tip toes. I was referred to Mayo
Clinic in Rodchester, Minnesota where I have had every test
imaginable to confirm my diagnosis. Now, almost a year after being
diagnosed I am finally coming to terms with it. I've been extremely
angry and incredibly sad about being diagnosed with such a disease.
I worry about being able to do things with my daugher, now 14
months, and her and my fiance having to take care of me in the
future. My family and I have jokingly called me an "ostrich"
because I have not wanted to face this. So until recently I have had
no interest in trying to get better, no matter what the method may
be. As a result, I am already a stage weaker. Now I am really
scared.
As many of you have found, not much information is available on this
disease, what makes the process slower, or what "cures" it. It is
also near impossible to find someone who has it. That is why I am
so happy to be a part of this group. I can't wait to speak to
someone, anyone, who is going through what I am and to hear what
kind of things you are doing to treat this disease.
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