CAREGIVING, MUSIC & LIFE: I started thinking about this song some time after Kathy passed away. At the caregivers support group at UConn, I mentioned how I wish I could “do something.” I was thinking I could be trained to run a support group or advise people. Now I realize that counseling should be done by counselors – with professional training. Bonnie Hennig who runs the group suggested “By writing about it in your own words on your blog you can reach more people and increase awareness.

Then she added,
“Maybe you could write a song about Huntington’s.”
I probably said,
“That’s pretty much impossible. It’s way too complicated.”

But, I started thinking about it. The first version told the story from Kathy’s perspective: as if she could still speak and was writing a journal. Then I realized I should change it so that I could sing it as if it was my story. So, I changed details. Kathy did do gymnastics when she was in high school in Michigan. I originally had a reference to the women’s vault event in gymnastics but changed it to the rings for the boys events. Other details were changed as well. Kathy was older when her mother started to get sick. Although it is always hard to pinpoint exactly when HD symptoms become noticeable. But, nine gave me more rhyme.

From facts, to thanks. The first versions that made any sense were a good length (about four minutes). But, it was even sadder and pessimistic. Every chorus had “I lost the toss.” And there was no mention of hope for the future. Other versions got too hopeful. The part about a cure went on too long. In this version, the chorus evolves from factual (Life’s a coin toss), to sad (I lost the coin toss), to grateful (I won the coin toss).

I kept trying to use the word genes in the lyrics.
But bad genes sounds like bad pants.

So, this song has seen many drafts. I keep the lyrics on my Dropbox (cloud storage) and when I would think of a better phrase or a different word, I could edit it with my little phone. It is still a work in progress. I have received a lot of positive feedback from Huntington’s Disease families about the video. I want to make sure from the HD medical community that it is factual enough without being too sciencey. It is a little too long by the usual songwriting standards but maybe I can sing it faster or leave out some of the repeats. I am hoping it eventually works as a story without knowing anything about me, Kathy or even Huntington’s. Eventually, when I am satisfied with the lyrics I will record a nice version of it to raise money.

These are the lyrics. It is still a work in progress.

The Huntington’s Waltz  

Words and Music © Peter Lehndorff

When my dad got sick I guess I was nine
We walked on eggshells. He was mad all the time
He fell down a lot. Slurred when he talked
Looked like a drunkard. But never touched a drop.

He went to his doctor / He went to a shrink.
Even that med school didn’t know what to think.
But no one brought up his family tree.
How his mom and his grandpa had a strange malady.

If I knew then, what I know now
I couldn’t change much of anything, anyhow.
It was 50/50. Life’s a coin toss.
When you have to dance the Huntington’s Waltz.
When you have to dance the Huntington’s Waltz.

They had him committed back in ’83
Some brothers and cousins had the same disease
A ticking time bomb began to go off
Then we all started dancing the Huntington’s Waltz.
I did gymnastics for my school team
I was never a star, but pretty good on the rings.
When I turned forty, more or less
The Huntington’s caught me. My life was a mess
Cobwebs of proteins started killing my brain
I pushed you away. Somehow you remain.

If I knew then, what I know now
I couldn’t change much of anything, anyhow.
It was 50/50. I lost the coin toss.
When I had to dance the Huntington’s Waltz.
When I had to dance the Huntington’s Waltz.

Damned if you have it. Damned if you don’t.
Damned if you’re tested. Damned if you won’t.
Some Sisters and brothers they have it as well.
Their kids and grandkids, only time will tell.
There’s hope for the future? I guess there’s a chance.
That the youngest of them won’t have to do this dance.
I guess I’m pretty lucky to know how this ends
Thanks for sticking with me. I love you, my friend.

If I knew then, what I know now
No, I wouldn’t change much of anything, anyhow.
It was 50/50. I won the coin toss.
When you danced with me at the Huntington’s Waltz.
When you danced with me at the Huntington’s Waltz.