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.
You learn something new every day. I was looking up side effects of my Lyrica today because I've been extremely nausea since my doctor raised my meds last week. I know it's not Haldol, that prevents nausea, so I've been working my way down through the others.
Then I came across this side effect. Its scary simply because not a single chemist nor doctor has brought it up to me. If you are a male, and on Lyrica it causes birth defects.
That's not an issue I need to worry about, but the fact I slipped through the cracks like this is scary. I consider myself a fairly well informed person.
Rod Stewart-"Young Turks"
Now if I could only find out what is making me feel like I'm sailing on constant rough waters, life would be much better. It isn't made any easier by the eye shifting issue either.
Geeze, I'm really whining today, aren't I? Sorry about that. Trust me, things could be a lot worse.
Bruce Springsteen-"Dancing in the Dark"
Well, I'm off to rest for a bit. Jane took the day off to watch me, so I know I'm probably green around the gills. Sitting here watching music videos isn't probably making her feel useful either.She's starting to get that mother hen look about her. Last time I saw that look was when I got pneumonia. She doesn't take prisoners.
I woke up this morning in a rather foul mood. Actually I still felt flatlined. As I began making my coffee an amazing thing happened. I looked down and realized here I was sleeping in until noon, in my pajamas, having time to enjoy my coffee, with a full wallet for my grocery shopping later. What do I have to complain about? You know, I was right. I don't have $hit to complain about. So good morning. Now let's start this blog out on a better, my happy note. Literally as well as figuratively.
I really felt this homemade video of stills caught Bob Denver's energy.
"Sunshine On My Shoulders"
There were a couple things on my Facebook this morning that made me smile with my breakfast.
First was this video with the caption that says it all.
"This is the old generation passing the message on to the new one."
David Crosby and Graham Nash singing "Teach Your Children"
The Second was this Webpage of absurd signs. Click Through the image for the page.
This is a terrible thing to say but death has been on my mind a lot lately. I've tried to deny it but its not something that simply goes away. I am thinking of my future and the future of ones I love more than is necessary. When my mind drifts it drifts back to what happens, if anything, to me after I die. This has been going on pretty much since I got my test results followed by my hospitalization. They were really the nails in my mental coffin and my mind has been nearly OCD on the topic ever since. I want it to go away so I can think of prettier things in life, but unless I go out of my way to change my thinking my mind is stuck on the big D.
Johnny Cash - God's Gonna Cut You Down
To complete this double feature:
"It was no longer my song anymore. It was a great honour." Trent Reznor of Nine Inch Nails on
Johnny Cash covering his song "Hurt".
One of the most wonderful thing's Glenn Campbell has given this generation is a face and voice to Alzheimer's Disease. By speaking out so soon after his diagnosis he is showing the world that there is life after the horrid visit to the doctor in which his entire life shifted from living to surviving.
This song brings up a funny memory. I was working one day in the shelves at the library and ran into some book that put this song in my mind. I was quietly humming it when a student came up to me and made a crack about me becoming "Americanized". What people often don't know is that for some oddball reason country music is fairly popular in the UK. This song was in the top 5 and I remember hearing it on the radio a lot when I was a small child. With its simplistic and clear lyrics it became a favourite for this 6 year old.
Glenn Campbell-"Rhinestone Cowboy"
Wow, that last song really just came out from behind my mental left field. I have no idea how I came up with it. I must say spending time visualizing this city boy singing Campbell in his little British accent did make me smile.
To see how strong an influence is, here is Human League's Empire State Human. It starts with Adrian Wright's choice of graphics: a photo of John Wayne with the words "Empire State Human" printed on it. This band is about as British anti-country/Citified as one can imagine. Yet there Wayne is, in all his American glory.
The Human League-"Empire State Human"
On top of having this OCD thing on death, I've been homesick. This week I've been looking at prices to fly home for a couple weeks via BA. Sure, I could save a few dollars by going through Expedia or one of those discount airlines, but I don't trust buying tickets with all these fees for baggage versus carry-ons versus J's purse. It is really insane looking at all these fees. Two tickets, four pieces of baggage and two normal size carry-ons, thank you very much. Its already enough to have to check what little we want to bring on with us against the TSA website and having to go through the scanners.
The current plan is for us to stay in London for a week and a half. My brother, his wife and my nieces and nephews will be in the city for nearly a week. We could sandwich our days around his holiday, and it will save driving up to Sheffield. Since I'm no longer driving that would be a big mess avoided. J has never driven on the left side of the road and for obvious reason's doesn't want to have to start now. Neither of us want to take the National Express.
On the other hand, I don't want to fly all the way and NOT go home at least for a day or two. It simply doesn't make sense and would likely leave me just as homesick.
Yet still, I need to spend some time with the kids and my brother. I need some time with my family while I still can appreciate it, and as yesterday's blog shows those days are already farther apart than I'd like to admit.
The only other option at this point would be to fly over alone for the holiday. That would save me a lot of money and I'd be safe to travel at my leisure without anyone to report to. I want to drive, I drive. I want to take public transportation, I take it. I could meet up with my brother in the city and ride with him back to Sheffield. The only problem (outside of the fact I don't feel safe driving) is I'd be reliant on his good graces and I'm sure he'd be very sick of seeing me for over a week even if I was staying in a hotel.
Nah, that last one's not going to work for a number of reasons. Scratch it off the list.
Earlier today I was making lunch and jamming to The Best of Sparks when a Moroder driven No. 1 Song in Heaven came on. (recurring theme-D-E-A-T-H) I'm jamming away and totally forgot J was coming home for lunch. Crap she scared the shit out of me! Imagine me making my little old sandwich screaming "Gabriel's plays it, God how's he plays it!!" and then a meek "hello hon?" during the synth break. I'm too jumpy lately. You should have seen the hole I left in our ceiling.
Sparks-"No 1 Song in Heaven"
R.I.P. Mama Cass Eliot-"Dream a Little Dream"
Now I'm just throwing some tunes onto the virtual turntable here. Its nearly 5 O'Clock and I've accomplished less than nothing. Still looking at plane ticket prices, spent an hour with a friend watching her watching the announcement of the pregnancy of Michelle Duggar which I could give a crap about but my friend does care about. She claims its an interest based on her major of Psychology. I call her full of bull$hit.
Do I really care if that woman chooses to risk her her life for religious or financial gain? I only care insomuch as if we restrict her from having children on any grounds, it would make it easier to restrict others who do less wrong in the future.
So for baby and mother, I hope they both arrive safe and healthy and that's the end of that.
The Beatles-"Oh Darling!"
For the third time today I'm trying to get my brain into gear and head off to the grocery store. I just can't do it. My head starts thinking of one of a few re-occurring themes (the D word) and I'm back on my bed, feet behind me, awash in anxiety and curled up like a bow.
Gary Numan-"Cars"
Here in my car
I feel safest of all...
Pet Shop Boys - "Opportunities (Let's Make Lots of Money)"
I've literally kicked the bed when my anxiety started to cause the nerves in my ankles to tingle. Now I'm tired, spent time holding my pillow, tried to cry it out and I still can't get out of here! ENOUGH!!!!!!!
I'm tired.
I'm tired of doing nothing and being drained of all energy.
I'm tired of being an unproductive human being,
of my level of activity being judged by some external rule..
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
