Seize The Day

Today has been filed with ups and downs. I must say the ups are worth the downs.


I'm still drowsy and dopey from the phenobarbital but the side effects are wearing down. I only took  one nap today and stayed up later than I expected although I'm very tired.

Eurythmics-"Here Comes The Rain Again"

My wife says I've been quiet lately and I have been. For the first time in my life I don't feel like like a man who has Huntington's Disease, but instead feel like "that Huntington's Disease man.". Its one of those little word games we don't  really think about until it effects us. 

I truly feel like my body is betraying me. As I told my psychiatrist I don't feel like I own it anymore, but have it on lease. 

Talking Heads-"Wild Wild Life"

After spending some time on Twitter and enjoying the new box I purchased for the telly that lets us view streaming content such as Hulu Plus and Netflix, I put on Frankie Goes To Hollywood and jumped in the shower to get rid of the last of hospital smell. Somewhere between Welcome to The Pleasuredome

Frankie Goes To Hollywood-"Welcome to The Pleasuredome"

And Ferry Cross The Mersey

Frankie Goes To Hollywood-"Ferry Cross The Mesey"

I had a seizure. Right there in the shower. I must have fallen against one of the walls for Jane heard it and came in from the kitchen where she was cooking dinner.

Julian Lennon-"Too Late For Goodbyes"

I was okay, not even a bump on the head but all I remember of the hours beforehand was the music. It reminded me of the fact that music appreciation is the one thing a person with Huntington's Disease does not lose. 

The Human League-"Blind Youth"

I've had this song stuck in my head since yesterday evening. This reply to Johnny Rotten's remark that The League is just "Trendy Hippies" has been replaying in my mind to the point I found myself walking to the rhythm of it. Its a good think I didn't have the Peel Sessions version in my head or I'd be running everywhere. 

Another side effect of this medication is double vision, for example I see four hands in the screen capture above.  I am having to rely on my touch typing as I can't view to keyboard or the lines on the screen. This time of night everything is double. I even see two Jane's next to me. 

I'm trying to eat but its hard to aim the sandwich in my mouth. I wonder how blind people do it?

U2-"Stay Away (Faraway So Close)"

This has been my theme song lately. The closer Jane gets to me the more I find myself pushing her away. It hurts so badly. I know that part of it is I'm uncomfortable with her taking the care-taking role. Its hard  seeing her in two totally different positions. For example, when I had the seizure in the shower I w as half bathed. Now somehow I had to get the shampoo out of my hair and soap off the left side of my body. After letting her rinse me off (I was in no condition to do this) how can I then go and see her as my lover? Its a very hard transition, yet one at least now I'm able to make.

U2-"A Sort of Homecoming"

I know the time will come when something will cross that line and I will no longer be able to make the transition. That makes me sad. To do that will be to deny part of her personality. 

U2-"Some Days Are Better Than Others"

So despite all of this today I actually spent the several hours celebrating. Jane was notified today by the clinic that she her pregnancy test came back positive! Of course, we had to make all the obligatory telephone calls to relatives before we settled down to celebrate. 

Kool and The Gang-"Celebration"

Then it was Viagra time.

Robert Plant-"In The Mood"

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

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Day 3 No Night Sleep

This is the third day I haven't been able to sleep. Yesterday I was up until 9:00 a.m. and then slept until 1:00. Last night, up all night, and two nights ago the same with a three hour nap. What's going on?

Nina Simone-"Don't Let Me Be Misunderstood"

I was turned on to Nina by a friend who adored soul.

I've never been the same since the first day I listened to 

records with him.

At first I brushed it up to stopping my mood stabilizer but all over my Facebook and Twitter people are complaining of lack of sleep at night. Is there more to it? 

Credence Clearwater Revival - "Bad Moon Rising"

The first two nights we had high winds. Winds so high they literally blew headphones off my body and down to only God-Knows-Where. Less than 100 miles from me the San Gabriel Valley is expected to be without power until at least Monday.  Could it be these winds put me on edge making it hard to sleep?

Here's today's double feature, Arlo Guthrie.

Arlo Guthrie-"City of New Orleans"

Some of you may not know that Arlo is "one of us", meaning he lived under the specter of Huntington's Disease. Arlo's father was the well known folk musician 'Woody' Guthrie, who suffered from before dying of the disorder. This made Arlo an at-risk individual. To this day it would not surprise me to find out that he is one of those funding the private organization working to find a cure of HD.

Whenever I question my motives, I remind myself of how Arlo lives his life and I remind myself that I don't have to let this disease force me to live with a black cloud over my head all the time.

All 15 minutes of 

Arlo Guthrie-"Alice's Restaurant Live at Farm Aid '05"

My main problem with the lack of sleep is that it brings out two of my symptoms almost right away. The first is my depression. The second is my leg jerking. If I don't sleep for one night, the next day I'll be laying down and "jerk" out from my kneecaps. Sitting in a chair and "jerk" Its not pleasant at all, and it makes napping twice as hard. 

William S. Burroughs-"A Thanksgiving Prayer"

I spent a year with a friend's family on Thanksgiving so I wouldn't have to spend the American holiday alone. When this came on the television it was time for silence as their 65 year old grandfather watched it as some would stop to watch a televised orchestra play a well liked tune. It was clear where @MeekoDev got her sense of taste and culture.  

Red Hot Chili Peppers-"Under The Bridge"

I think these symptoms are more aggravating to me because as I'm getting my life settled at its new state and enjoying my new routine this comes through and reminds me that I'm not a normal person with a normal routine. It throws me off. The good thing in this is that I am seeing that there is so much left in my regular  routine that can be interrupted. Also, now that I know these symptoms, I can recognize it for what it is and go on.

Paul Young-"(Wherever I Lay My Hat) That's My Home"

A year ago I would have sworn this is my theme song.

Its nice to have grown enough to say it no longer is.

Well, I'm going to leave you now. See you tomorrow.

You figure out why.

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