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.
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.
Let's just say my mood is low enough I don't want to be alone.
It is starting to look like the time to give up my driving licence. I don't use it very much anymore for starters. In all honesty, I'm fearful to get behind the wheel most of the time. What good is that?
I still have it, and will keep it around the house for emergencies but outside driving to the hospital I guess I simply shouldn't drive anymore. Even when I make plans most days I end up on a taxi or public transport. So off it will go into J's wallet tonight.
I don't know what is happening lately but I just want to cry and cry.
Maybe its the licence thing, I used to adore to drive. It was a relaxing activity, dating back to my years in Sheffield. Maybe its just my depression, goodness I was so depressed earlier I fell asleep in the middle of the night leaning on our living room table, not the most comfortable of places.
Holy Cow you can actually make out the lyrics in this version!
Manfred Mann's Blinded by the Light
There is only one thing that sounds decent to me right now, but its not really an option. That's a drink. I would die for a good Absinthe but it would do the same for me.
Huntington's versus Alcoholism? That's a race I don't want to watch, thank you very much.
Bob Fosse's Cabaret has several excellent songs. Here are two of them as our Double Feature. First up is one of the most romantic scenes portrayed in a film. It simply consists of two ordinary lovers doing ordinary things. It doesn't try to be anything special, so it becomes gorgeous. That is Fosse's gift.
Here is one of the scariest scenes I've seen in a film. There is no blood or guts. There is no implied blood or guts. Yet Fosse has all of us know exactly what the people symbolize, and that is the death of eight million people.
Again, click through....Come on now...click through. It's Fosse so its worth it. Would I lie to you?
Okay, I wouldn't lie to you, but she might... The Eurthymics
There is so much to catch up on today. Even though I'm seriously depressed I'm finally recovering from the antibiotics that knocked all the energy from me.
First, I woke up to this interesting blog on being tested. I can't find the link now for the sake of me, but if my memory comes back I'll insert it for you. [Edited on Nov. 7, 2011, 08:27 P.M. Link is Here. I really recommend you take some time to read it] As you probably don't know (as only one person outside of my house has been informed) I finally went in, put the cash down and did the whole genetic counseling thing along with the blood draw. I asked J to go with me for moral support, which she was kind enough to do, in handfuls.
First, since this draw was done at a Center of Excellence they put A LOT of weight on the physical symptoms. It meant less than nothing to them that I had been on anti-depressants starting at age 25 after running across a freeway for example. This becomes important later.
After they spent time explaining to us (J came with me for the simple fact I was too scared to do this alone) where the affected Htt Gene is located on Chromosome 4 and so on. It was then that I realized most of this information she was hearing for the first time. I never deliberately tried to hide any information from her, but who wants to hear about the genetics of someone else's illness. I felt she would find it boring but just the opposite. She wanted to know about it. Everything about it. Each and every pamphlet that wasn't nailed down was in her folder by the end of the two hour session.
J looked as if she was researching for her new career
as a Paperback Writer!
So we go in for the blood draw and in a little over a month, and a second visit, I came back for the results. They won't tell you you're CAG repeats when they tell you the result. Since I have been diagnosed based on symptoms, I don't need to know if its in my genes. That's a bit obvious. I need to know what my CAG repeats are, as they CAN give an inclination to the speed my HD can move among other things. They finally admit that if I call when I get home and still wish to know they will share it at that time.
Six weeks later we drove back down. Sure enough, based on my CAG repeats I have Huntington's Disease.So here we are driving home and I've this piece of paper in my hands that states I do for a fact have HD. Its first real "proof" I've ever seen of my HD on paper. A third of the way back to Santa Barbara in Malibu it hits me like a ton of bricks and I start bawling. We pulled up and got down on the sand to watch some surfers. By then we were both cold and hungry. After struggling to get up and about, I managed to gather a menu and ordered a Malibu Priced burger, chocolate shake and really enjoyed it.
And no, they still won't tell me what the repeats are. Once we make the drive home I call as I enter our house. This is when I get shock number 2. My CAG repeats are over 150. That's JHD range! I asked the doctor on the telephone about this (while trying to get the speaker phone itself to work so J can hear) and he had several working theories. The first is that I got it from father and checked off the incorrect box. We both knew that was not true. Second, since my mother's family preferred to keep these things quiet.they may have encouraged her to hide some of her psychological symptoms from my father when they dated. If that is the case, she could have a higher CAG repeats as she died before genetic testing was available.
However, they didn't consider this during her pre-symptomatic period time (remember this was a Centre of Excellence and they really emphasis the physical symptoms). They have nearly completely ignored my anxiety and depression that left me bed ridden, caused me to drop out of school after my O levels for menial labor and caused me to run onto an busy motorway all by age twenty-five. It wasn't until I later left for the states and received a second chance at a new medication (Paxil) for depression & anxiety followed by obtaining a Bachelor's Degree in Library Science that I was able to begin to get my life on track.
Never seen so much talent in one video
and that includes all of the charity videos.
Johnny Cash - "God's Going to Cut Them Down"
Third and finally, with a CAG this high, I should most likely be dead, or in much worse condition than I am. The only thing I can guess, and this is truly a guess on my part, is that when I go from bad to worse, it always has been a very large jump. For example, I can tell you now that this next progression that has just started will most likely be primarily physical symptoms. When I drink I can already feel the liquid catch and try to go down the wrong way several times daily. Then the circular walking issue that started six months ago, and the issues where my typing words go on repeat. Plus of course the OCD that has been getting gradually worse and more controlling.
Unlike my teenage years I can now enjoy both
Heaven 17 and Human League.
In Sheffield you had to take a side between the two bands.
Somebody wants to curl up here at midnight. I started the Melatonin (thank you Melatonin Mice for your service) tonight and feel it starting to work so I'm going to head off with those two pleasant thoughts.
