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.
Today there is going to more music than text. I am at the point where I'm at a loss for words. Hard to belief but yes, its true.
Depeche Mode-"Personal Jesus"
Although not the biggest fan of this song myself (I think underrated songs like "Clean" get overlooked), this version is very unique with strong American Blues roots. I wish I had found this before today.
Blood, Sweat & Tears-"And When I Die (Live)"
Late last evening we drove up to the Valley to stay with Dave's family for a few days. Although there are always snafus when being forced to settle an estate, this one has become extremely complicated in a short period of time. Items such as the car, which were willed to Ms. K in a community property estate, has an odd contract which is meant to prevent the original owner from reselling at a markup. Consequence is the manufacturer may have first right to purchase the car back since she was not on the deed (for liability reasons).
I'm half asleep but there are several things that excited me tonight. The first is this new song by Sheffield native Hiem. I like to promote local electronic music so I was honoured when Hiem hit me up in IM to notify me their new song, which goes on sale today, features Philip Oakey. Here it is for your listening pleasure:
Hiem and Phil Oakey-"2AM"
Also today I was listening to a lot of early Human League and Heaven 17.
The Human League-"Black Hit of Space"
Heaven 17-"Geisha Boys and Temple Girls"
Speaking of Heaven 17, I found a rare clip of the Red Hot Chili Peppers performing a cover of one of their songs. So I twitted it with a link to Heaven 17 member Martyn Ware(formally of Human League) at the end so it would show up in his feed if he hadn't seen it.
Red Hot Chili Peppers-"We Don't Need No Facist Groove Thang"
I don't know if he'd seen it before but he must have liked it because he twitted the link with a thank you to me. I know its dumb, but I've been a fan of his since I was literally ten years old. To get the digital equivalent of an autograph is still cool, no matter how old I am.
February is Rare Disease Month. Huntington's Disease falls into that catagory so many people are wearing blue on their daily clothes to show support. My wife actually put on blue nail polish. Every time someone asks her about it, there is a chance for Jane to educate them about Huntington's, as well as put a face with the disease.
Joy Division-"Atmosphere"
As part of Grand Round's recognizing Rare Disease Month, I was asked to pick out the best in Medical Blogging on 28 February of this year. I'll be giving you more information the closer we get. This is very important because it will bring more recognition of HD to the general medical community.
Van Halen-"Right Now"
I went off on a friend's Facebook Wall this morning. I didn't realize how upset I am that there isn't much support for those of us who currently suffer from HD. I blasted the HDSA for lack of support. What is there right now that helps our quality of life? Nothing except older medicines that treat the symptoms. There is only one drug that is targeted toward HD patients and it only helps chorea symptoms. It does nothing to slow or stop the disease.
So many people have gone to the so-called "Centers of Excellence". Some get good treatment but there are so many like me who don't. We are treated by doctor's not familiar with HD, who only count the physical symptoms. There is nothing for us NOW. Its time to do something, and thank goodness there are people starting to do that, like We Have a Face
I think that is it, so I'm going back to the BBC to keep an ear on Syria.
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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I was half done with another entry when I was told last night of Kathleen Edward's death. This poor girl had been through so much in her little life. Now she's with her mother.
Blood Sweat & Tears-"And When I Die"
I was writing last night when my Facebook Messenger went off. I turned to the FB tab and a friend asked if I knew Kathleen. My foggy brain didn't recognize the name from those on my friends list. It was when she described her that I realized who had passed away an hour earlier.
Pardon my language but Jesus Christ I hate this disease. Nine year old girls shouldn't be losing the ability to go outside and play.
Wilson Phillips-"Hold On"
After a few stressful days my wife and I went out to dinner and just have some nice quiet time together. Then a friend called and asked if by chance we wanted some months old furniture. Jane and I had been in the middle of choosing couches and here was a beauty. Its cream coloured and fits our decor. We also inherited two smoked glass tables. So now we have 1500 dollars worth of furniture in our front room and I need to move half of our old stuff out.
Its funny sometimes how we get what we need when we aren't looking for it.
Red Hot Chili Peppers-"Give It Away"
Until the books are moved, our living room looks like a hazard area. A hazard area with nice furniture. I've taken a photograph to show you how it looks now. I'll be taking another once we have moved everything in place. Once everything in place I'll be posting before and after photos.
The rest of the night we're going to be moving two bookcases. This is why I finally bought my Kindle. I simply ran out of room for my books.
The Human League-"You've Lost That Loving Feeling (Peel Sessions 1978)"
And what the hell was Philip Oakey thinking
with that hair and a beard?
Its time for me to sign off now. I have two bookcases to move. See you tomorrow.
Depression 4 Anxiety 5
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.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
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.
