Dealing with Web Sites on Genetic Diseases and Stem Cell Research

Have any of you with genetic conditions such as ALS, DMD, BMD, etc. ever read the mountain of material on the Internet about stem cell research? What about the material on all of the various conditions themselves? The Muscular Dystrophy Association has a pretty extensive web site with tons of articles on coping with diseases, research, and you name it. While it can be helpful to families and caretakers of those who are directly affected by these conditions, reading about your specific disease can send a person on an emotional roller coaster – especially if one is not prepared to deal with the hard facts. I found myself reading about the effects of my disease (DMD) as one gets older. One of the effects caused by my condition is dysphagia (difficulty swallowing). It was definitely difficult reading a description of what can happen as a result of dysphagia. If anyone is not mature enough to deal with the truth, it can be a source of emotional distress. This is true no matter what the condition. Maybe there should be a warning on each web site dealing with this kind of material. I must say I did learn a lot. I just figure since I have defied the odds for more than thirty years all I have to do is take on all this information as a challenge. One cannot adhere to everything a so-called expert has to say on a particular subject just because it’s considered “expert opinion”. It is up to each individual to find ways to deal with whatever effects any one condition can cause. Anyway, as one who finds ways to deal with his condition (whatever form of Muscular Dystrophy that may be), these are my expert opinions.

Any News in U.S. About Winter Paralympics?

I saw a pretty nice commercial on WNBC-TV last night about the Winter Olympics. I'm just wondering, has anyone seen anything about the upcoming Winter Paralympics? In the commercial I saw, it shows some of the drama associated with the athletes themselves and what they have to endure. Seems to me there'd be some interesting drama concerning The Paralympic athletes as well. Maybe it's not time yet, but knowing how little attention The Paralympics receives I'm concerned it will be passed over as a non event again -- which it certainly is not. Anybody who has ever seen even a glimpse of The Paralympics knows how competitive it is. All I know is that I would like to see The Paralympics on national TV as is the Olympics. What does one have to do in this country to show the world what athletes with disabilities can accomplish. These are serious athletes not only seriously competing, but their personal stories of overcoming the odds are compelling at the very least. I'd say it's time for the media to be brave and give The Paralympics it's fair share of media attention it definitely deserves. If you show it, people will watch. It is successful in England, so why not here?

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