The life of a man suffering from Huntington's Disease, a genetic and fatal illness. Every child of a HD parent has a 50 % chance of suffering from this fatal degenerative neurological illness.
This is the story of one such person.
After playing "Space Age Love Song" by Flock of Seagulls I've been stuck with their other song, "I Ran" in my head. So for the sake that I can get that piece of crap out of my head here it is.
A Flock of Seagulls-"I Ran"
I'm cutting back on my Twitter time today. I found myself justifying my use by deflecting. Wrong way to go, Paul. It was like the time I said I'm not an alcoholic while I justified my drinking by switching from Beer to Bachardi (Yeap, I did that one). That means I have to make sure I don't slide over to Facebook.
I'm the king of parallel addictions. I was actually reading that alcoholism and drug addiction have a higher rate in Huntington's Disease patients. If true, it would not shock me. In my case I was drinking when a late teen and then just kept drinking until I had tried to take my life. Since then I've maintained some good sobriety.
I do know that as an HD patient I'm going to loose a parent, which to the average person is a known stressor. I'm also suffering from compulsive thoughts and actions which I take medication for. I'm also planning on starting a new type of therapy for this and we'll see how that works next week.
craigslist tv: Drinking Buddy
I love this show. As someone commented it should be on those ads where they justify the existence of the internet.
Men Without Hats-"Safety Dance":
I'm having troubles sleeping since I stopped the Lyrica. That was a powerful knock out drug and my body misses it. Right now I'm wishing my eyes were closed and I was dreaming of this little village.
Nena-"99 Luft Baloons"
My whole body is screaming to sleep but I can't cross the line to the nice sleepy clouds
Eddy Grant-"Electric Avenue"
Eddy puts me in the mood to watch some Ross Kemp in Jamaica. If you haven't seen him I highly recommend it for good entertainment.
Falco-"Rock Me Amadeus"
This is one of those songs that good speakers were bought for.
Kim Carnes-"Bette Davis Eyes"
Sleep, come to me. I'm calm enough now DAMMIT!
I'm really not going to get this, am I? Its time for me to settle down with my phone and read a book on the Kindle.
Last night on Twitter I saw a friend post and they mentioned that Paul Simon is coming to town and would I be willing to go? The answer was along the lines of *duh* No brainer. Of course I want to go!
It doesn't get better than Tony Levin, Steve Gadd and the late Richard Tee
as your backup band.
Looking forward to hearing
some of his new players on the 23rd.
The thing is, my friend doesn't have a car, so I drive in return for a ticket, but that's usually when she goes out of town. For example we were going to the Hollywood Bowl in early September but her mother died rather suddenly and unexpected.
Long story short she asked if I'd be willing to go to see Paul Simon with her next Sunday and I said I would. So we are buying our tickets at the Santa Barbara County Bowl Monday. I'm really looking forward to this. As you know, I had just posted Graceland a few days ago here. I'm a big Simon fan. There are some musicians that transcend all boundaries. You can be a fan of Punk, Techno or Heavy Metal and still enjoy Paul Simon. He just has a way....
Look at Gadd's hair here, just too funny.
As for my plans today, I'm going to the store to pick up supplies and then dropping them off at Operation Occupy Santa Barbara. Then I'll be checking up on my friend and trying to get her out of the house.
She's been holing up a bit. I think I know why. She is starting to show symptoms of HD. Its not obvious and one of those things that you wouldn't notice if you haven't been there. She most likely isn't aware of this. All she's probably aware of is that her body is moving differently and people are going to notice. What she probably doesn't realize is that people don't notice because humans by nature are a selfish bunch. Outside of those we share a home with we people don't notice $h*t.
At the end of the day we don't realize that though, what we do think about is how we are perceived by others. Are we seen as drunk or incompetent in some way? Are we seen as different? Do they see us the same way as last week or are we different now? I chose the video "And She Was" because I know that is how I felt when I first began to show visible signs of HD. I kept thinking people were looking at me compared to what they had seen before. What I was compared to what I am.
The way David Byrne keeps saying "And she was" is how I felt, like I have broken record in my head screaming over and over "And he was". Is that why people were still friends with me, based on our past not our present friendships? It took several years before I finally felt comfortable to ask someone if that was why they still spent time with me.
You might imagine my shock when they replied "No, its based on who you are NOW. Your personality hasn't changed, Paul." That was a hard one to swallow because it told me people still liked me for me, and that I was still a friend. It also meant that I needed to continue to keep my half of the friendship up.Finally it means that relationship may change when Huntington's grabs hold of my personality which is a When not an If.
The Friendship Song
In case you didn't guess the person I asked was J. She's one of the few people in my life that I can. and am, totally honest with. Most of the world I hide parts of myself from.
Lately it seems like I'm hiding something from almost everybody. Its frustrating but I just don't want people to know stuff about me. I spend too much time worrying about what they think.
No folks, the album cover doesn't move during the song.
I love the lyrics here. The chorus is so true:
"Everybody needs love and adventure
Everybody needs two or three friends."
Very basic and very true.
I love the message this song sends about technology.
This song always gets me thinking, but more so tonight as I finished rewatching Synth Brittiania. Many of those folks in the music world that embrace technology don't do so on the personal level. They aren't the musicians you'll see with Twitter accounts or Facebook pages. In the case of The Human League for example you find a group Twitter account that is rarely used, a URL that points to a Facebook page run by a fan and an unofficial page that gets information from the group. You don't see any member having a Twitter Account or any other internet access. In fact, lead singer and Synthesizer player Philip Oakey is on the record as being against these forms of tech. We are at the point were technology puts us everywhere, yet we are still nowhere.
Does anyone really care if we just "checked in" to the nearest grocer or electronics shop? Chances are, no one cares. Yet FourSquare is based on the premise that people do care if you are at Starbucks. I just don't get it. Maybe its that I'm too old but I think its basically useless and at most its dangerous by telling people too much info on us.
I either can laugh or cry. I'm choosing laughter on this one. This Namenda is really bringing me to the here and now. A new thing I've noticed today that isn't new at all is that I am in fact slightly "dancing", mainly to the left and then bringing myself back without realizing it. Its leaving a strange pattern on the sidewalk if I watch my feet.
How I know this isn't new is that I had a fall six months ago.I had walked to the left and hit the sidewalk. I wasn't doing well at all that day and had kept walking into this little circle. Now looking back why I didn't realize it for what it was at the time is just idiotic. Instead, it seemed everyone thought I had gotten into a fight but one kind woman. When I'd stop by she shared a story of her tripping at Costco which had given her a similar scrape up.
Dancing Line- Please give
11 minutes to educate yourself on
Huntington's Disease.
I'm wiped out and I didn't do anything today. I did get to the corner store, that was it. Besides that all I did was hang out on Twitter and write this blog. I also watched some music videos.
I don't have the energy to watch a full length movie. Can't imagine getting through it and understanding the plot.
I will be dropping the goods off to the protesters tomorrow, I got a list of what they need today on Twitter. If you are supporting the 99% here is what they needed, I'm sure it doesn't change that much by area.
water
food
first aid
art supplies
headlamps
batteries
pens
paper.
Earlier today I realized that I haven't been very depressed this last week. Something about this med change must have really worked because going in I was extremely bad off. My life's theme song was Elton John's Daniel. Nice bright and cheery, only not.
Now I'm thinking about doing things. Hell, often I end up doing those things too! Somehow, I've managed to try and find things to do. When I write my blog, I find myself putting it off to do other things. Even days like today when I had to put everything on the back burner due to a major loss of energy I recognized it for what it was, loss of energy. I'm not happy about it but i'm accepting it and ready to move on. I'll watch some videos instead. My point is that something is catching my attention. For a while there, you wouldn't have been able to catch it if you stood on your head and sang the entire Sparks catalog backwards.
While listening to Elton John I found this clip. Some people know how to put on a show and some people just put on a show. Meet Elton at New York's Radio City Music Hall performing his hit Levon
Well, I'm going now to give my cat some love. G'nite
