I just got back from the Annual Conference on Huntington's in Vegas this past weekend. When ever people ask me how the conference was I say things like, "It was informative." or "We got a lot of really god information."
But what I really mean is that we got a lot of information on how much research and medication ISN'T out there. We found that HD is so rare that there really aren't a lot of sources of research. I heard that the limited research we have now is leaps and bounds more than there was 30 years ago. Meds are in clinical testing trials and results should be completed in 15-25 years. All I think is "Great, my husband will either already be dead or his symptoms would have progressed too far to be reversed."
Granted that is good news if you have kids affected by HD. I am truly glad for the people this may help--because while it doesn't seem particularly helpful to us---I can't imagine watching this happen to your children, its bad enough watching your spouse suffer through it.
So Harry is probably going to die. I hate even typing that, but it looks like that's where we're at realistically. My heart is broken over the fact. I so wished we would have more time of him being healthy, but it's not to be.
I was so upset after this conference, I couldn't return to work for two days. I have to grieve for this hope that has been so completely shattered. I also had to get my meds adjusted because as much as I'd like to crawl under my bed and sleep for the next 6 months or so---Our healthcare is from my job as the only person employed--I can't our insurance depends on me getting it together. As caregiver I don't have the luxury of falling apart.
When I spoke to my doctor she said something that resonated, she said sometimes you feel like your in jail, when dealing with a disease especially like this.
He's declining in front of me and neither of us can do anything but endure this and plan the best we can for the future.
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