This is my first attempt at
blogging for Huntington's Disease, so what I'm writing is kind of a test.
My name is Judy, and I am in the
early/middle stages of HD. I am 58 years old, with a CAG count of
42. I was tested in 2004. Two months ago, I was approved for
disability, and I was fortunate that the new, quicker time frame has already
begun. It only took a total of 3 months to get approval, thanks to all
who lobbied for HD becoming a Compassionate Allowance Disease.
Like many who find themselves in the peculiar place of having "come out of the closet," but hopefully able to communicate in a variety of ways, I started a blog! I also joined several HD related Facebook groups, and I've really been enjoying catching up with the others who are out there fighting! Writing really isn't my forte -- I am a classically trained singer, so I'm trying to find a musical way to make a contribution.
I've been involved in clinical studies at Iowa, where I have been doing the PREDICT HD annual visit for 5 years. Prior to that, I participated in the Celexa study, also in Iowa, and have spent alot of time speaking with the "experts" about HD. I really do feel that the cure is right around the corner (even though I have been saying it for years!).
I remember an uncle of mine who had HD, and 20 years ago he was regaling me with stories of all the research that was being done, and drug developments. Of course, at the time, I didn't take him seriously. Now, I hope that my relatives and friends will understand that this time it really is true: the cure is right around the corner! Like many of you, I hope to be one of the first to test the new treatments, whatever they may be!
Like many who find themselves in the peculiar place of having "come out of the closet," but hopefully able to communicate in a variety of ways, I started a blog! I also joined several HD related Facebook groups, and I've really been enjoying catching up with the others who are out there fighting! Writing really isn't my forte -- I am a classically trained singer, so I'm trying to find a musical way to make a contribution.
I've been involved in clinical studies at Iowa, where I have been doing the PREDICT HD annual visit for 5 years. Prior to that, I participated in the Celexa study, also in Iowa, and have spent alot of time speaking with the "experts" about HD. I really do feel that the cure is right around the corner (even though I have been saying it for years!).
I remember an uncle of mine who had HD, and 20 years ago he was regaling me with stories of all the research that was being done, and drug developments. Of course, at the time, I didn't take him seriously. Now, I hope that my relatives and friends will understand that this time it really is true: the cure is right around the corner! Like many of you, I hope to be one of the first to test the new treatments, whatever they may be!
No comments:
Post a Comment