At the conference

I wrote this while at the HD conference:

I really want to have hope, I just can't see how.

I hear about meds that after an exposure for 3 years may/can slow down acceleration by 9 months.  I heard about clinical trials for meds that improve system functions in mice and insects but not on humans.

I feel like there's a lot of "Oh well" type attitudes at this conference (in the presenters, not the participants).  I don't think that this attitude is completely wrong, but it feels so casual--when nothing about this disease or its effect on those affected and their family members is anything but.

On whether to have kids:

I'm hearing a lot of "Just Go for It" or  "Maybe there will be a cure in 40 years."  Meanwhile we haven't cured the common cold, cancer, or even the flu. 

Look, no one knows what the future holds, but it feels irresponsible to to be all: "Well maybe it won't happen" (ignoring the evidence to the contrary) and if it does we'll deal"  That's great for the parents who want the kid, but not so great for the kids's life circumstances. 

Yet, by the same token if Harry's parents had decided not to have him--he wouldn't be here and that thought breaks my heart.

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It was a difficult weekend full of depressing news and multiple windows into the future for both Harry and myself.  We saw people at all different stages of the disease.  While it was scary for me it must have been terrifying for Harry--to see these potential futures.  So after the first day which was Friday, we went back to the room and I told him as he sat there reading a book on the hotel bed.

"Put. the book. Down. We are in Vegas and today has got to be one of the shittiest days ever. But we are in Vegas--I think we can both agree that life is short--so I say we PARTY!  Like it's our job, dammit."  I broke out the vodka and pulled up the beer menu from the bar downstairs that claimed to have the most beers on tap in the world--not sure I buy that  but my husband loves craft beers. So we hit the bar which also served great food and got drunk.  Then we gambled a little--very little neither of us are gamblers.  Drank some more and hit the resort's dance club.  We had fun.  Heaven knows we needed it.