An insight into my life with FSH by Alex Ling
Written after November 2004
Hi, I'm Alex, 24, a guy, from the United Kingdom, and as the title says you'll get an insight into my life. The first paragraph gives a brief definition of FSH and when I was diagnosed. The next couple of paragraphs give a bit more information on my life. And the final paragraphs are well, just more about me!
I have Facio Scapulo Humeral Dystrophy, which is one of eight different Muscular Dystrophies. Firstly, what does Facio Scapulo Humeral mean? It is to do with the affected groups of muscles in my body, Facio = Face, Scapula = Shoulder, and Humeral = Upper Arms. However it affects me further than this, the diagnosis of FSH was the closest and most appropriate one they could give with all the symptoms I have. I was initially diagnosed after having a muscle biopsy at 6yrs old. Within the last 10 years they retested the biopsy they took and they have stuck with their original diagnosis.
It affects me on a day to day basis a fair amount, and there are so many things I wish I could do that I can't. I do get times in my life where I feel trapped and that does really get me down a lot. I know I have to cope with it and accept that there's not much I can do. Some times I get so frustrated when I see other people doing things that I would love to be able to do. For example, when I go out to clubs I can't talk to people that easily because my voice isn't that loud, so those times are really frustrating especially when I'm trying to say something important or just join in with the conversation.
I guess I can be grateful for not always being in a wheelchair, I didn't really start using one until I started high school when I was about 12yrs old. And for about a year onwards I could still walk a bit. Then from about 13/14yrs I had to use a wheelchair on a much more permanent basis. I'm lucky that I had such good friends around me through high school, they made it all so much better and I enjoyed myself so much. FSH affects my upper arms, shoulders, back, legs, and facial muscles. I do have a slight hearing loss however this doesn't mean I have to where hearing aids, I probably should do; I have tried them out, but have rejected them. I used to where foot braces to keep my ankles at a right angle, I don't now, but they are more or less alright at the moment, and don't seem to have gotten too worse well with the exception of my right ankle.
At the present time I don't work, as over the past 3 or so years I have lost a lot more of my mobility, and now use a ventilator (CPAP) at night and this has definitely given me some strength back, and a bit more stamina.
To keep myself entertained I have a fair amount of interests. These include Art Therapy once a fortnight. I'm a big sports fan and love watching football (soccer) and I go and watch my home team Ipswich Town when they play at home. I also enjoy watching TV and DVD's. I have a lot of friends online who I often chat with from all around the world. I'm also trying to work on my own website.
I am hopeful that one day a cure will be found, I believe it to be only a matter of time, whether it be in my life time who knows? And besides, if I didn't have FSH I wouldn't have had the life I have lived up to now, I wouldn't have met some wonderful friends a long the way – so there are positives to having a FSH and they are not that hard to find. They are only hard to find when you dwell on the negativities.
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