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.
Very interesting take combining live performance with sampling.
Still going with the this doesn't feel like I control my body this morning. It just sits wrong. Every time I try to lay down on my side it just inches away. If this keeps up I'll be off edge of the bed in a few minutes.
In the meantime, I'm reading an interesting article from The New York Times on the homes of Mexican drug lords. For those of us that are interested in Urban Exploring, this article and photographic essay is a must see.
Duran Duran-"The Reflex"
And this, boys and girls,, is why John Taylor ended up in rehab.
U2-"Bad"
Live Aid, the day America finally realized
what we already knew:
That U2 was to be a musical force to be reckoned with
One of the people on my Twitter feed is a giant fan of Big Country. Its because of her that I went out searching for a good live performance video to put here.
Here is the late Stuart Adamson fronting and playing some mean guitar in an early Rock and Roll concert in Russia.
I may joke around sometimes about substance abuse but make no mistakes. It kills. Stuart Adamson died as a result of an alcoholic suicide attempt in 2001. He left behind two children and a wife.
Big Country-"In a Big Country"
And of course, any time I can push Tony Hadley, lead singer of Spandau Ballet and patron of the HDA, you know I will. So here's Tony at Live Aid.
Spandau Ballet-"Only When You Leave"
This next one still gives me chills to this day. I can feel them run all the way down my legs.This was one of those "Where were you" moments of my life. I can still see the floor under my knees in front of the television when watching this. The house stood still. My father, who had been putting up with my brother and my crap all day, shut up. Queen came on, and Freddie started singing. My brother and I were suddenly quiet. Then my Father's voice came from behind us, replying to Freddie singing "You made us think we could fly" with a quiet "Yes, you did"
Queen-"Bohemian Rhapsody/Radio Ga Ga"
Have a good night.
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I saw el shrinko, aka my head doctor today. It went well considering how much information I had to cover. I finally told him everything seems like its rushing by. He just looked at me with the look this guy below has on his face. Then he says "You're getting married, yeah?" and I'm like "duh yeah" and he laughed. He said its actually a common thing when people are in the middle of wedding preparations.
Men at Work-"Overkill"
Then I told him about the baby and Facebook and everything else that's been going on. He was more than a bit surprised. Then he mentioned it must not be bugging me too much. I asked him where he got that idea and he said because I didn't call for an extra appointment. That got me thinking, I do usually freak out and ask to be fit in. Does that make me more normal now?
Spandau Ballet-"True"
I still have that nasty cough. It hasn't gotten any worse, but its not any better either. So here I am with the rest of last night's Taco Bell in the waiting room at the walk in clinic.
Spandau Ballet-"Round and Round"
I'm waiting for the results of the X-Ray. I just want to curl up in bed. That's never a good sign. What's even a worse sign is that the nurse just sent me to the hospital to be checked out. Jane is not going to be happy at all.
Oh, I knew I forgot something while moving my laptop from the clinic to the emergency room.. Doc asked me about the holidays. Its always a tough time. A friend of mine is struggling, she lost her mother this last year to HD and she really doesn't want to spend Christmas at home so she's planning on going down to the Grand Californian Hotel inside Disney's California Adventure. She told me last time she was at Disneyland it was during a storm and she ended up stuck at the fireplace where she sat reading Stephen King's Duma Key This is year she's buying the new V.C. Andrews and taking them down to the the Grand Californian. She's going to stay at the Super 8 across the street and just sit with her Droid and junk novels. That sounds really good, and I'm tempted to take her up on her invitation to stay in front of the fireplace. There is something about mourning somebody when you're not alone and have a shoulder to cry on.
Mike and the Mechanics-"The Living Years"
What surprised me is that Jane is interested in going. I told her its probably going to be one of the more boring trips. She shared with me that she never had closure over her close friend who passed away from Hodgkin's Lymphoma early this year and she just isn't getting the holiday spirit. She shared with me that she is thinking that going down there will add some Christmas cheer as well as give her some closure. I called my friend and she really would love the company, so it looks like our Christmas plans are to spend the time in front of the fireplaces with good books.
My friend MeekoDev with Duma Key Off and to the right is the outdoor fireplace
The ER nurse just called my name so I'll see you tomorrow.
I came home from the hospital after spending a couple days in there for pneumonia.
The entire stay was complicated. I went into the Emergency Room at two in the morning, only to check out at noon. I wasn't feeling well, and thought I was coming down with my annual bronchitis. Only I wasn't. I had come down with walking pneumonia. Not so good. They give me a bag of IV antibiotics and then I'm welcome to leave. The doctor's directions are to return if my fever tops 102 degrees. My memory at this point is fuzzy, but I do know the time before my fever goes to 103 is about an hour and that it goes up a whole degree on the drive p. J was so upset at the hospital releasing me that she has my GP meet her in the ER before she will drop me by again. Her valid argument is that he knows enough basic medicine than to release me again, and she's right. He checks me in under his name. I breathe knowing I'll getting better medical care for the night.
Suddenly I realize that I'm expecting something many people in the United States don't have: reasonable health care. This should to be a basic human right. B A S I C. Okay, I'll rant about that on another day
Chose this song because I'm feeling blue but as soon as I started watching this song I realized how much I have to be grateful for. Beautiful piece by Elton, as usual.
Once I get over this pneumonia (and the sooner the better) I'm looking forward to being joining the Occupy Santa Barbara movement and actually protest with them, moving from simple support to full support. After spending some time with a friend who had been one step from homelessness twenty years ago due to mass job layoffs in her line of business, it has made me feel that this is very important.
I've been doing a lot of thinking lately, with all this time on my hands. I've been thinking about spiritual matters. I'm back to the basic "is there a god" mental puzzle.
So tired of being in bed, and the medicine has knocked the wind out of me. Its hard to read as the letters are swimming in front of me, although I do have the movies to go along with Easy Riders, Raging Bulls, and Robert Evans' The Kid Stays in the Picture.
I could watch those. If I get off my butt enough to do it. I have no get up and go. It could be from being sick or HD related depression. My money is on the latter. I would really like to see David O. Russell's Three Kings (Yeah the guy's an a$$hole but its a brilliant film).
One thing that really s*cks, at least for me, about HD is that like many chronic illnesses, once you get something else you it aggravates the chronic condition. So in my case not only do I have pneumonia but I've had trouble making sure all my liquids go down the right pipe and my words are spoken clearly. My depression, memory and anxiety have all gone through the roof. The only good part of this is that I know what the new symptoms of HD will be ahead of time. For example, a couple of years ago I took ill with a nasty flu. This brought out a new HD symptom, missing keys on the keyboard. For example instead of "T" I will hit the letter key to the left of it, the "R" key. When the flu went away I stopped hitting the left key.
Then a few months later, sure enough, suddenly I started hitting the letter key to the left next to one I want to type on a regular basis.
The woman in this video looks like she walked right off the Pan-Am set!
This time when I started to get pneumonia, I began to repeat words when I typed them. Sometimes I would proofread them several days in a row before I noticed.
Before I log off (its midnight and several naps later I never did see that movie) I need to get some sleep for the night after my two hour nap, I wanted to share a wonderful experience I had with another HD FaceBooker. This person sent me a message in chat about 8pm and we ended up chatting for a couple hours. For those couple of hours, I didn't feel alone in this HD universe. There was someone else out there who understood where I was coming from.
It was this person's birthday but I was the one who received the gift. Thank you.
As I sign off here is an example how tired I've been feeling. It takes me three days to get this entry written, and I still don't have the energy to add more than four songs. I want too, I just don't have the energy. However, I'm taking the advice of a fellow author. In basic English. if I think I'm pushing myself, there is s good chance I am.
Now I've got all the new music on my Droid, haven't listened to it, either. It takes a lot less energy to listen to it, so I'm making a date with some good albums Sunday when I wake up. If I strayed away from Facebook Chat, then I forgot its even open (You have to love those HD memory issues).
My right shoulder started shaking and it actually woke up J, which is a first. I'm going to let her try to relax it so she can go back to sleep.
I haven't been sleeping well lately. I spent over 24 hours in a medicated sleep. I wake up every four hours with anxiety and pain, take medication and fall back asleep half an hour later. Evidently my sleep isn't very productive as J says I'm tossing, turning and jerking. All I know is that after three cups of coffee I'm still yawning.
First I want to play Round and Round by Spandau Ballet.
The lead singer of Spandau Ballet, Tony Hadley, is a patron of the HDA.
This next song has been playing around in my head for several days. Perhaps its because its on one of my tabs on Chrome and my computer has been crashing. Every time I start it up, this song comes on. Then again, I've also been watching an interview and performances by Human League on the old Australian show Countdown and this is one of the songs they lip sync.
The Human League - Love Action
The reason I've loved this song for so many years is that its a man talking about feelings and failures in love. At one point he even talks about curling up and crying.
These are feelings we do go through but here in America you never dare admit failure. Its one thing I really don't like about the culture here. They invented the entire "Keep up with the Joneses" phenomenon.
I found this gem in a great playlist of the entire Human League portions of this show that showed up in my email. It starts with this performance of Love Action, a couple short interview sections and then Open Your Heart and ends with a hilarious version of Don't You Want Me in which Philip turns away from the mic halfway though the chorus to laugh. Strangely although he's in the same clothes, the other members aren't which leads me to believe it was recorded/aired on a different day.
On second thought, I'm going to put this version of DYWM up here. Its music comic gold.
To quote what I wrote on Facebook:
Sorry but I can't help cracking up when Philip and Susan turn around to laugh. At 2:20 he doesn't even give a crap and turns away halfway through the chorus. When the camera cuts away the keyboardist is smirking too. Got to love live television.
Early Human League song Black Hit Of Space (1980)
You can see the soon-to-be members of Heaven 17 here in the background, The reel-to-reel at the
bottom is their electronic substitute for drums.
The Paul Simon Concert went really well. I am so glad I had the chance to go. He was on top of his game and in the intimate venue like the bowl it came off really well.
The Sound of Silence at Ground Zero, NYC
Speaking of Paul Simon, He was on the Johnny Walker Show today on Radio2. It was a replay of a show from May. It was perfect timing for me :) You can hear the entire show "You Can Call Me Paul" for 7 days online.
I called my shrink today. I am going in Wednesday but I'm just not feeling good. My OCD is coming out like crazy. I can't leave the house for a cigarette without freaking out thinking the coffee pot is still plugged in. Get out of my car and "Oh $hit, did I lock the door?" You get the picture. Its not too pleasant.
I also mentioned that on top of the OCD my anxiety is now constantly through the roof. It takes so much Xanax to get rid of the anxiety I end up asleep. Its easier to sleep then let my thoughts run wild. Right now there is no in-between. Eventually anxiety took over so strongly it helped set off a headache. What started the headache was I was reading on the laptop by my side of the bed and fell asleep. Sure enough, like what has happened before, my neck jerked, waking me straight up.
Choosing this song simply because I love it.
I really feel John's Words.
Right now this is how I'm living and enjoying every minute of it.
Yeap, I think its time to go back on the Haldol. I was seriously hoping to avoid having to start it again. There is no getting around it though. I'm not sleeping until I'm beyond exhausted, small things are giving me a rise that is fully out of proportion, and I'm OCDing like crazy. The SSRI's for OCD have never worked on my depression so to go on one of those would be trading off an antidepressant for an OCD medication, and that is not a trade-off I can afford. To make a long story short, he agreed with me and actually had the guts to tell me he was wondering how long it would be until I would 'fess up to him that I needed it. Live and learn I say.
Julian Lennon-Too Late for Goodbyes
One thing I've noticed lately is that the more text I have in my blogs, the higher my depression level. It may not be higher on the scale, but the longer the depression the more introspective I become. When that happens I write more here on this blog.
An old Saturday Night Live Skit. This
is a compilation of four Deep Thoughts by Jack Handy
And with that I'm going to finish this pizza and then sleep.
However, first I want to thank J for putting up with the mood swings and all the rest of these Huntington's Disease mental games I've been going through. J, I love you. As in really, really love you. As in I wouldn't b*tch if I ended spending the rest of my life with you. This one's for you.
Thank you to all the musicians featured here tonight who lifted my mood up.
