March 8, 2019 at 4:21 pm #176116Reply To: LGMD2i
I don’t use Facebook so best if I contact you this way.
A few details about myself –
My name is Rob and I am a 68 year old male suffering from a specific type of Muscular Dystrophy
called Limb Girdle Type 2a. My condition was diagnosed 6 years ago and over that time it has gradually got worse.
I can still walk OK although much slower than previously, but struggle up stairs and can no longer run.
I know my condition is rare, but I would very much like to get in touch with other people with Limb Girdle MD in order to exchange experiences/advice etc. in living with this condition.
How long have you had MD yourself?
RobMarch 8, 2019 at 4:27 pm #176118Reply To: LGMD2i
I am 30 years old I have LGMD2I I was around 20 years old when it started affecting me, I can walk still slowly like your self I’m not that great with stairs or getting up from a sitting position but I manage with objects around me. I still drive I do drive an auto but that’s through choice.March 16, 2019 at 12:30 pm #176337Reply To: LGMD2i
In hindsight my LGMD started to become apparent about the age of 40, so nearly thirty years ago now. At the time I started to have lower back pain and I was treated for that condition. The LGMD was found out by accident 6 years ago as a result of a blood test reading -a high level of Creatine Kinese, and I was sent for various other tests. Eventually I had a muscle biopsy and that led to the LGMD diagnosis.
On a positive note the progression of LGMD has been relatively slow for me over the last 30 years, so hopefully the same for you.
Its a bit of a joke in our household the way I walk – waddle from side to side and leaning back. Are you the same? Also I struggle to lift things e.g. a bucket of water to wash the car feels like a ton weight.
Although diagnosed 6 years ago I don’t see anyone from the medical profession? Do you? I was told there is no treatment but recommended to do Pilates (which I do once a week), and that swimming is good ( but I find that boring). Basically anything that keeps muscles working but not to overdo it. I have always liked cycling and still do, but started to struggle up hills so I now have an electric bike which is a great help.
Keep in touch.
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