Monday 28 November 2011

Sweets anyone?


Paul McCartney-Wonderful Christmas Time

Traveling Wilburys-"End of the Line"

Have you ever taken a train to the end of the line? One year I did this. I was taking Amtrak from Santa Barbara to UCLA Medical Centre and then on the spur of the moment decided to take it to the End of the Line in San Diego. Once we arrived, we stayed in Diego until the train reversed several hours later and took it home. It was a beautiful trip up the California Coast, and something I'd like to do again.

Yesterday I saw something that just appalled me. You know those things that make you physically ill? I saw one of those things yesterday. 

I was at a friend's home. She's having a terrible time this holiday season because she lost her mother to Huntington's Disease this summer. While I was visiting yesterday, her half-sister (on her father's side) outright said that A) its not healthy to cry privately during holidays and B) as far as this sister is concerned my friend might as well go and kill herself. These things were not said in haste, they were obviously thought out. Many children of parents with Huntington's  know that there is almost a ten percent chance a HD patient will take their own life. One of the many reasons is simple, a major symptom of HD is depression. 

I swear I almost knocked this sister down and if she wasn't a lady (which is debatable) I would have. Oh, did I mention my friend's mother did end her own life as well?

David Lee Roth-"California Girls"
When I lived in England I thought this video was a parody.
Then I moved here and realized it's the truth.

The Beach Boys-"Kokomo"

Rupert Holmes-"The Pina Colada Song"
This is one of those WTF songs. Can you imagine sitting down
to write a song about having an affair?

I woke up early this morning to Jane's "Best of Harry Belafonte" CD. Sometimes I need to feel that soul. So instead of a double feature, I'll be playing four Belafonte tunes today. 

The thing about Harry is once I start listening to his voice, I can't stop. 

Harry Belafonte-"Abraham, Martin and John"
Some performances are so good that even
the scratchiest LP can move you.

Harry Belafonte-"John Henry"

Harry Belafonte and Odetta - "There's A Hole in The Bucket"

Harry Belafonte-"Jamaica Farewell" 

Yummm...So I'm sitting on my bed listening to Harry, while eating Peanut Brittle, Aplets & Cotlets, and Dutch sugar cookies. Between all those sweets and music I'm in heaven. Oh, did I mention the four boxes of Bob's Candy Canes? How about we forget about them.

Actually, this food is good for me. For reasons unknown, people with HD consume A LOT  of calories. In fact, we'll go through 3,000 - 5,000 calories a day just to maintain our weight. In my case its even worse because my CAG genetic repeat is three times the normal of most HD patients. The higher your repeat, the more calories you consume. If you are a "normal" person reading this blog, you run a CAG repeat of >28. If you suffer from regular HD, your CAG repeats should be between 28 - 39. A child with Juvenile Huntington's generally stops at 100. My CAG repeats went over 150.That's a lot of See's Candy.

So that's my justification for eating all these holiday sweets, and I'm sticking to it.

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.

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