Re: scapulo peroneal muscular dystrophy
Okay, no email addresses. Good to know.
Anyway, I guess I've had scapulao peroneal my whole life. At age 7 months I had a tracheostompy because of my paralized vocal chords made breathing very difficult. Other than that I grew up a pretty happy, healthy kid. I tried keeping up with the other kids and was never without a quick wisecrack or dirty joke. I still played baseball and was in the Boy Scouts, played the drums and dreampt of having my own rock band. I got into a lot of mischieve with my 5 brothers and sisters and the hoards of school friends.
Looking back, the 'family'disease " was never talked about because no one knew anything about it I had several cousins who were disabled and a younger brother with a lesser form. That's just how it was.
The disease started to slowly progress in my late teens when I started having difficulty climbing stairs. I went to college, worked for a Boston consulting company, traveled, partied with friends and didn't let the disease slow me down.
Eventually and sadly enough walking became difficult. I started with a cane, then a walker to a wheelchair. Because of many bouts with pneumonia breathing became difficult so I was put on a ventilator. That was in 1997.
Fast forward to 2013. I'm am completely dependent of others to care for me. We now know a lot more about the disease and there's always hope they'll be a cure. I still feel like the same wisecracking kid with the dirty jokes. That's the one thing this horrible disease hasn't taken from me.
I promise to get this site frequently and to to hear from you soon.