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.

Rainy Day

Good afternoon.


It's dreary outside the house today. A spot of rain through the grey clouds. How appropriate for Remembrance Day, or Veteran's Day, depending on where you live.

The weather also matches my mood.


Yesterday night, after I logged off of my computer I got ready to go out for the night with my friends. I picked out my clothes, turned the hot water on to soak the dishes, started dinner for J and me, and jumped in the shower. Big mistake. Catch it yet? 

Denny Laine with Paul McCartney & Wings - "Richard Cory"

I'm in the shower and the hot water runs out. This was strange enough, but the water pressure seemed "off". This house, like all houses, has its quirks. One of them is the hot water. It is near impossible to get it perfect, and that has become an art form. Its either too hot or ice cold, nothing in between. You can run hot water til the cows come home and it won't run out. We have a full size gas water heater and it has been known to handle seven people. You can imagine now why it was so strange to run out of water. Now have you found it?

Second half of my Wings Double Feature

"Listen to What The Man Said"

Once I got out of the shower, turned off my transistor radio and got dressed, I went out to the kitchen. There was all my hot water, still running over the dishes. Thank goodness the stopper on the sink had not been sitting right at the bottom. If it had, it would have flooded into the living room. 


I felt so foolish, dumb and idiotic all wrapped into one. Why the hell hadn't I noticed this, much less reacted, when I had about ten warning signs there was a problem? If nothing else, why hadn't it occurred to me as a possibility?  

Actually, it had. That's whats so scary. I dismissed it in less than ten seconds in the back of my mind. It would have been forgotten if I hadn't walked out to the living room hearing running water.


Earth to Paul...Earth to Paul...

Blondie-"Heart of Glass"

I wish I had an answer why I let this happen. Just like I wish I had an answer for why I left the screen door unlatched  for the cat to get out of, not once but THRICE in as many days. Geeze Louise. I need a full time keeper these days to follow me around. This isn't sloppy, or lazy or ... or anything. There is something wrong again with my thinking and for the sake of me I can't grab it. Instead I'm playing catch-up after one theoretical fire after another.

John Lennon Double Feature

"Nobody Told Me"

So after each of these near disasters I have to weigh what to share with other people and why. Am I doing it to gauge how "out of it" I'm acting, or so they can keep a reasonable eye on what goes around their own home? If I don't tell people, is that fair and reasonable? 


What about the book club that meets in member's homes, do I tell them I'm the idiot that put the empty coffee pot back on the coffee maker?  If not, is that fair or reasonable? When we meet in my home, how much do I tell them or why? 


So then I look at look at it this way. How much would I expect to know if another member might cause a small accidental fire?


Wow, that's exhausting. How about if I just sit here and don't touch anything? Then I don't have to worry, double check or tell anybody anything?

John Lennon-"Watching the Wheels"

Let's be honest. Its not feasible to expect myself to sit still. I'm a moving, breathing human being. I'm not expected to be perfect, by any means. Where are the borders between "normal" and ""accident waiting to happen" ?  Is there wiggle room? How about property co-ownership?

Traveling Wilburys - "End Of The Line"

Well, that's much ado about nothing. At the end of the day, after spending more time devoted to this issue than it deserves, I have come upon the conclusion that:

Nothing needs to be done. I'm a responsible adult. If I'm concerned about the cat getting out I can make a vocal warning to myself to strengthen the reminder that "I'm making sure the door is locked so the kitten doesn't run out in the rain as she is apt to do." 

If I'm that concerned about leaving the water running or the coffee pot being left out or... 

Then I just need to take a little more time each day devoted to my daily actions. I'm not in a race right now, I need to learn that.

So why was I so worked up last night again? Oh yes, the running hot water.  That type of thing can happen to the best of us, HD or no HD. What's important is for me to remember that and keep it in perspective.

Bill Wither's "Lean on Me"

(Thank's to GAWS on Facebook for this one)

Its amazing what a walk between the raindrops can solve.

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