I wanted to share this from Jason's blog. [atlasfolding.com]

?It?s a pain.? dad said, and laughed.

I had asked him what he?d like to tell people in his own words about living with Huntington?s Disease.

We were sitting together in a hotel bar in Dallas the evening before he was to meet with the neurologists supervising his clinical trial. We had eaten an early dinner at Outback and weren?t ready to head to our room yet so we decided to have another beer. Dad had walked a hundred yards across the massive Hilton hotel to sit here with me in a martini bar, quite a trek for him and the significance wasn?t lost on me. The beer bar, the one that I wanted to take him to, was down two steep flights of stairs ? out of the question.

To anyone in the bar my father looked like a drunk, swaying on the velvet couch and making wide orange circles in the air with his glass of Blue Moon beer. His speech slurred as he made typical bar conversation: methods for constructing sine waves in a digital domain that could be decoded with fast Fourier transforms.

But dad wasn?t drunk, just enthusiastic about the topic. ?I wouldn?t advise drinking either.? he said out of nowhere. ?What?? I replied ?If you have Huntington?s?? ?Yeah. It?s a bad combination.?

He was being unintentionally funny; he was referring to two other Huntington?s patients that his neurologists had told him about that had both Huntington?s and severe alcoholism problems. No, definitely not a good combination.

Dad finished his beer and lifted his bottle to see if it was empty. It was and I asked if he wanted another. ?No, I don?t think I?d better.? he said, ?I don?t want to be drunk for my tests in the morning.? Not wanting to be drunk for your motor control tests seemed reasonable to me. ?Ok, I?ll go tab us out.?

I walked to the bar to pay our tab and just as I was signing the ticket I heard gasps coming from the back of the bar where we?d been sitting. I threw down the check and hurried around the end of the bar just in time to see my father climbing up from the carpet and onto his walker.

?Dad are you ok?? I asked.

?Sure.? he said, ?You ready to go??

As we slowly crossed the hundred yards back across the hotel to the elevators the fall was forgotten as the conversation returned to sine waves. Dad has never dwelled much on things like that, he doesn?t see any point to it. For him it?s a big confession to simply say, ?It?s a pain.?



Edited 1 time(s). Last edit at 04/22/2009 06:20AM by Maggie.

Maggie,

That was a nice story to share. Reminds me of the recent times my 24 yoa son is spending with his father. My hubby really likes going to the movie theater and my son has now started taking him on Friday afternoons when my son does not have an afternoon class.

My hubby sits in the back corner as to not disturb others with his movements but it gives him such a joy to go and "escape" to another story for awhile. (popcorn and a theater move and he's having a ball!) It's nice to see our son driving his Dad somewhere he can't get on his own and spending time with him alone.

Thanks for sharing the story!

You have such an incredible, beautiful family Maggie. You must be so proud of your sons and of Tony. Thank you for sharing the story.All of you are so amazing!

Thanks for sharing. You all are amazing.

Stacy-NJ

We're not amazing at all. We are just four people getting through life as best we can, just like everyone else. But thanks for the kind words.

Maggie, Jason seems very proud of his dad, and not at all ashamed of what he has become with hd, your son has very good character, not all adult kids have that same character. Hopefully, some that don't have it will eventually mature into it, i hope I enjoyed Jason's version, very cool

Thank you, Maggie. Bob

I read his insight a few days ago , and I enjoyed it . db