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.
Lately my insomnia has come back with a passion. To sleep I need to take enough Xanax to knock myself out. Sleeping pills won't touch it, so after the twins go off to school for the day Dad goes back to sleep if he's lucky. If not, he yawns, moves slowly through the day and deals with a semi-depression state from lack of energy. Not even enough get up and go to watch a movie. Other than that, life is good. I'm eagerly awaiting March 26th, when the new Depeche Mode album is do out. Its also the date of the much awaited David Bowie record. This will be interesting.
Depeche Mode-"Heaven'
Word on the street is that this single is not representative of the album. This is a shame. I really like Heaven. It also captures the theme of the album title "Delta Machine".
We'll see soon enough. This is the second cut as played back in October.
Depeche Mode-"Angel"
As a fan of blues fusion from Elvis to Simon and now the SoulSavers this is specifically what I want to hear. When I hear the world Delta in an album title that is exactly what I expect in the music too.
Paul Simon-"Graceland"
Notice the first line.
Now back to my insomnia, a lot has been going on with some dear friends and I'm sure this has been an influence. Two friends of mine are second generation HD at-risk. Their father had the gene with out any prior family history. Stella tested positive last year, and like me suffers from near debilitating mental symptoms including depression and agoraphobia. Her sister Jan just was tested last month. She tested negative for the HD gene.
Another friend who also only learned a couple years ago that HD is in her family is also now feeling a need to get tested as her anxiety and depression are worsening, these were also her mother's first symptoms. She can barely leave her room,when medicated. I want to be there for her during the testing process but I just don't have it in me right now. She understands, I can't say I would.
Elton John-"Circle of Life"
A fourth friend is waiting for test results himself. He had a malignant tumor removed four years ago. It now has spread. He is awaiting the results of his bone scan. If it has moved there, his plans are to enter hospice care. He's allergic to the primary medication to treat this cancer.
This song goes out to him, he knows why.
Elton John-"Pinball Wizard"
So hear I am listening to to BBC 6 Music weekend, getting ready to watch an action movie or documentary. Maybe the documentary will help me sleep? However if I can't sleep the action film will keep me entertained.
Action film followed by documentary it will be.
Goodnite now,
Paul
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.
First, my wife Jane and I wanted to announce the birth of our child, David Daniel Ware.
That's right, "Baby Ware" was born on 27 September 2012
John Denver-"Follow Me"
It was our good friends Stella and Jan over at HDTrainwreck who broke the news to the blogsphere. To two very good friends of ours, great scoop!
So in some of the worst taste I've ever exhibited here (especially considering how much Jane dislikes not only their music but local Martin L. Gore in particular):
Depeche Mode-"Black Celebration (Live at Wembley 1986)"
A few quick notes:
We had a friend who was homeless for two
and a half months. She now is sharing a house with two other sober
women. Who says good people are always punished? I'm so happy as her new
home is much nicer than her old one where she was being emotionally
abused.
In the meantime we saw the best of humanity come out. Jane took her out to have her hair done and helped spend some girl time with her. Another friend helped her keep her telephone service. Finally, a male acquaintance took her out to shop for some clothing to make her feel better about herself. Several other friends donated their living rooms, floors and any other space while she waited to get into the shelter. She even spent a couple days in our crowded house, not minding that every time one of us breathed we nearly kicked her we were so overflowed.
Bananarama - "Na Na Hey Hey Kiss Him Goodbye"
So you may be wondering why I disappeared for so long. It has everything and nothing to do with Huntington's Disease. Like many people with HD, I am a creature of habit. Between the move, my sister's gene positive HD test result, David's birth, Dan's move into our home for a short period of time and the lack of internet for a couple of weeks, my habits were basically broken into five easy pieces. It is taking me all this time to start to get back into my old habits. Even now, it has taken me three days before I got enough written to even post my first video here.
Elton John-"Circle of Life"
This song is a shout out to Dahy's mother Corrine who has relocated from Belfast to help Jane in her last months of pregnancy. She was so happy to have had the chance to see her grandson DJ sing in his recital. It went off without a hitch in spite of his large cheering section.
Its great to be back, now if I can keep in the habit of coming here on a regular basis I will be happy.
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.
Please forgive for being all around the place. I'm trying to get sleep and rest while I can and then gather enough energy to repeat the cycles. My life's been this was since I came home. I'haven't done much outside of change my clothing and watch the last few days, then its rinse and eat.
I see little elfin tracks on Jane's side of the bed and it makes me feel really good that somehow over the last months I can sleep with her that close to me.Sometimes I'll even wake up with a washed face. It makes me feel, well, appreciative.
This pneumonia really took me out for a month. First part of November through the middle of December. It just would go in hiding for a bit and then come out again.
Al Stewart-"Year of the Cat"
I really don't like that I got this sick and need to prevent it from happening again. That means its time for the nasty swallowing test. I didn't think I'd have to do it until much later on my disease progression but clearly for me this is not going to be the case. I can't put it off because to do so may just kill me and after the last month I've realized that this is not an easy way to go.
In one of her latest blog entries she writes eloquently about her last day of "not knowing" and all of her feelings. It brought back memories of being tested down at the medical centre earlier this year. If you haven't read the long version, I went down to get my CAG Repeats. I'd already been diagnosed with HD several years by then but like a mad scientist I wanted these little numbers that would say so much about my remaining quality of life. . There is a point when two much information sends my mind off the rails. For me, having the blood draw before I was symptomatic would have been one of them. I couldn't do. The other was during the process of obtaining my CAG repeats. That day, sitting on the Malibu Beach with my first official positive genetic test in m my hands, I was an emotional mess. Even though I knew what the paper said and had read it in the office it was a OMG moment when my whole world seemed to change and it was never going to come back to my pre-tested mental state no matter what the result.
Chrissie Hynde-"Angel of the Morning"
with Cheesy Abba Graphics
It fell onto my girlfriend's lap on the beach to try to get the pieces picked up. I can't blame the testing centre they can only work with what I presented them with and looking back there wasn't much I gave them to work with. My profile screams "closed minded Brit" or as Jane later described one tester "She seemed shocked a self described British librarian aide could step off the paper into her office."
Elton John, Billy Joel - "Piano Man"
Yet that's exactly what I did. From that point onward it was me versus them.I'll be damned if I choose to work with them in their treatment of me. I basically gave them the therapeutic middle finger, There was a period of time when I dreamed that the lab found me so hard to work with that they wished I canceled my upcoming visits. This war got personal, quickly.
Human League-TOTP -1981-"Love Action"
There is only one loser in an initiative like this.
The Huntington's Disease patient loses
Every single time.
"I believe, I believe what the old man said
Though I know that there’s no lord above
know I believe in love
I believe
I believe in me, I believe in you
And you in truth though I lie a lot
I feel the pain from the push and shove
No matter what you put me through
I’ll still believe in love"
Techno Trance - "Tainted Love"
It is so easy. with diseases of of the mind, to let them them take control of you. This is something we need to be constantly aware of. I know for myself, it can grab me for days before I realize what is happening.Then I have to have to back up and repeat my actions with the appropriate actions and frame of thought. This sounds like it takes a lot of energy and it does. That's why its so important that I do it right the first time.
Sometimes it can be as simple as saying, as I did yesterday to someone, "I don't think today is a good decision making day for me."
As for today, I'm actually feeling well enough to go out briefly to the store and grab some soda. I'm completely out of my drink and want to buy some more. Then I'll bathe if I have the energy and eat before going back to sleep.
I'm working to learn to take care of myself and pace myself yet not to take it too easy. Its a hard road to follow. It is one that last two weeks have taught me are life and death for me.
Depeche Mode-"People are People"
I'm climbing briefly out of the trenches here for a trip down memory lane. My one and only man-crush David Garen. My poor father, if I knew the heart attack I was giving him.
The weather is raining, and it matches my mood. I'm really depressed. My mum has been on my mind today. So many fleeting memories of her, and its making me miss her so very much.
I remember moving up to Sheffield and all my Mum wanted in her house was a flower garden in the window. She told my father over and over that he could have the rest of the house but she wanted her window. For the life of me I could not understand her obsession with the window. Its only now as an adult that I understand she was already suffering from depression due to Huntington's Disease and the sunlight in this window helped make her feel better.
Stone Ponys-"Different Drummer"
Through all of this, my older brother Peter complained he didn't want to move. He wanted to stay in Leicester, to finish his schooling. Oh how they fought. Then Mum began crying and would leave the room. She didn't want anyone to see her crying. I always thought her reactions were inappropriate to the fighting. It wasn't until several years later that I learned she knew this as well, which is why she would leave the room.
Johnny Cash & Linda Ronstadt - "I Never Will Marry"
I found out a few years later when she and I had fought. She ran from the room crying and me, being the insensitive boy that I was, I went running after her. That's also when I first heard on this Huntington's Disease. Until that fateful day her and my dad had hid this from us.
Murray Head-"One Night In Bangkok (Extended Mix)"
The intro on this is fantastic. That alone is worth
the price of admission.
She never used the words "Huntington's Disease" that day, she just referred to it as the disease she got from her father. I was such a teenager I thought she meant she got it from him like a person gets an STD. Boy did she have to set me straight with what she meant.
Play that again Sam
Vinylshakerz-"One Night in Bangkok"
"No No Paul" I can still hear her voice in my head. "Nothing like that. Its just something genetic. That means that my dad had it and passed it on to me." I can still feel the hammer slam down when she said that. So many thoughts rushed through my head. Did that mean she would die of this, would I get it too since my mother had it, what about my brother?
Thompson Twins-"You Bring Me Up" Christmas 1984 TOTP
Yes, that is Holly Johnson of Frankie Goes to Hollywood
doing the introduction.
I didn't ask my mum those questions that fateful day in her bedroom. In fact, I never asked them of her. I went to the school library but they never heard of an emotional disease you get from your parents. I hadn't known my grandfather in many years, but I do remember his shaking and that he could barely talk. I asked about that and librarian gave me some books on Parkinson's Disease. I looked at them briefly, and told her that this wasn't what my Mum has, she was crying all the time too.
Three weeks later I was in my English class when a hall monitor came inside my classroom. She had a request slip and called out my name. I was fearful of what I had been accused of doing, and dropped a school book as I was trying to put my items away. The poor monitor must have seen my face as she explained that the librarian had requested my presence. At this, my English teacher took a different tack and put a friendly smile on his face.
Band-Aid- "Do They Know Its Christmas?"
So off I trotted with my slip to see the Librarian. It has seemed like an eon had passed since I last visited her and I had no idea why she would want to see me.
I walked in and handed her my pass. She smiled at me, and asked me to take a seat. Then she told me that she saw a show the night before and it may have answered my question. She asked if I had ever heard of Huntington's Disease. I told her it didn't ring a bell, and then she got out a book and it described my mother to a T. I slowly nodded to her to keep reading and she finished the whole description. At the end it her medical dictionary described my grandfather's condition when I last saw him.
Here was this poor woman basically becoming my genetic counselor. She explained to me the disease, that it was terminal, that a child appeared to have a 50% chance of getting it and that it occurred generally after childbearing years.
Queen feat. David Bowie & Annie Lennox - "Under Pressure"
I have wondered how she came across the decision to share this information with me. She could have easily ignored what she saw on the telly and changed the channel. She could have ignored my previous request for information. Instead, she felt that an informed child would best serve society. She is my role model when I worked in the library myself. I feel an informed student will best serve society.
I never brought that information to my mum, but I did ask my father when he came home from work. I outright asked him if Mum had Huntington's. He looked at me straight in the eye and asked where I heard that term. I told him I found it in the library,not an entire lie but I didn't want to get the librarian in trouble. My father went on to confirm that was what my mum was suffering from. I then asked Dad if that means my brothers, sisters or I could get it. He slowly nodded in the affirmative. It was the saddest I've ever seen him except when he lost mum.
Billy Joel-"Pressure"
I read Time Magazine, What does it mean?
From that time forward, I had a new respect for my mum. She was fighting this beast all alone. No one was there supporting her because we all were supposed to ignore the beast in the room. I learned that the day I talked about it with Dad. HD were forbidden words in my house. Its something that every day I try to break with tradition.
Elton John-"Levon"
Notice how distinctive this song is? Three notes on the piano and
the audience starts cheering Elton on. Beautiful and moving.
this is what music should be.
The day Mum took her life I remember coming home from school. There was just something different. I could tell you what it was, but it was an absence. There was no natural noise of a home being lived in, no smell of cooking, no expectant parent waiting to sit over homework. I remember dropping my schoolbag and knocking on my own house's door. I don't know why I did that. I just know that I did. As if in a bad dream nobody answered. I knocked again. Then I went in. I went through the living room to the kitchen. No food, no cooking. Everything was cleaned as if expecting a guest. I went back into the living room and then knocking on my parent's bedroom. There was no answer at the closed door.
I was going to wait until Peter came home but he was out on the football team and wouldn't be home for several more hours. I knocked at her door again. Now I was getting fearful. I didn't know of what but I was scared. Finally I opened up the bedroom door. Then I don't remember anything else until I arrived at my neighbor's house. The Mitchell's were always so kind and that's where I must have felt safe for it into their home that I ran.
Poor Mrs. Mitchell had to deal with me. I was screaming, and running like no tomorrow. She managed to get some tea down me and had me tell her my story. She then called the police and I remember her telling them it was "a suicide" and "appeared to be a gunshot". Then she called my father, who promptly came to get me. I don't know where we were going as home was not convenient but Dad just took me out for a quick snack and then we sat in the car.
Elton John-"Daniel"
One of the best Daniels, and I've heard a lot of them
When the police came I repeated my story and then went inside to confirm it. Then my dad asked if we could go, and we went to his office so he could bury his head in his work and we wouldn't see them remove Mum from her home for the last time.
We picked Peter and then went to the daycare where I youngest sister was. From there we all went out to eat as Dad told everyone what had occurred during the day. I just felt empty.
I was always closest to Mum. She was the parent that I confided in. She made the best gingerbread cookies. All these random thoughts came in my head, and sometimes still do. Most important, it all just up and disappeared. The person who made me feel whole was gone. That part of my heart remained empty until a few months ago when I finally found someone I could trust again.
Elton John - "Your Song"
My life went downhill for a number of years. Took my O's and barely passed them. Then instead of going to my As I dropped out. I took menial jobs before eventually attempting a geographic cure in the United States.
Phil Collins-"Take Me Home"
Here the audience knows the song after a few hits on the drum.
Take me home, since I don't remember
I've been a prisoner all my life,
By now I was drinking a bottle of Jack Daniels every day.I started early and drank everyday. Then one day I ran onto the 101. I don't know what I was thinking, if I just wanted to end it all or if I just wanted my life to be over but either way I ended up in the local psychiatric ward when I came out of my blackout.
It was there that I realized I needed to get my life together. With a psychiatrist I found the strength in me to go back to school.I finished my education after receiving a Bachelor's degree in Library Science. From there I applied for a job at the local library in the City College. I worked there until my depression and anxiety became debilitating and I applied for and received disability based on the years I had paid into the Social Security system. I also received my green card while in school which allowed me to accept some financial aide as well as allowing me to live here safely without fear of being deported.
Phil Collins-"In The Air Tonight (Live)"
After 9/11 the government became suspicious of those holding education or working visas. I had several visits from government officials until I received my green card.
Tears for Fears-"Shout"
Since that day I ran into the motorway have I ever thought about suicide? Yes I have. I would seriously consider it except it would affect too many people that love me. I wouldn't want anyone to walk in to find me dead. That is not fair to them. If there was a peaceful way to go then I would grab it in a heartbeat. I know how to go, the question is would I do it? In all honesty I can't answer that. I would ask Jane to be involved for the simple reason I don't want her to come home to find me dead. On the other hand, its not fair to her to take care of me when my condition deteriorates. In all honesty I don't want to ever get to that point. Would I rather be dead then to be where my grandfather was, yes I would.
Billy Idol-"Eyes Without a Face"
I'm not there yet, so my mind is still open. When the time comes I'll talk about with Jane, but not until then. I want to spend the time I have without this specter hanging over us.I'm selfish and I want this time to be as carefree as possible.
I love the Pet Shop Boys, then and now
Pet Shop Boys-"West End Girls"
Tomorrow I have a few errands to run, and then after work Jane and I are going to through our bookcase and donating some books to the People's Library in New York. The Operation Wall Street Library has been destroyed by the police. These books were literally thrown in the trash and ruined. When some books were recovered they threw them in the trash again. We thought mailing them our books would be a good way of supporting the movement.
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.
Woke up feeling as if I have too much sleep, which is odd as I forced myself awake until midnight last night before going to sleep.
I'd originally planned to go to sleep early, just wiped out, but then the house wanted to stay up. Kitty ran outside, J made herself a late dinner and things like that keep a person naturally awake. I finally calmed down to some Al Stewart and he puts me right over into the sleep zone every time.
I like this cute mini-movie
I also had an interesting talk with a woman on Twitter about the highlife in the New York City night clubs in the 70s through 90s. The CBGB and Studio 54 through the Palladium. very interesting chat and so glad I stayed up for it. I also saw a Johnny Cash documentary that BBCFour aired a few years ago. You know, of all the things I miss from home I never thought television would be on my list but I've been watching so much of the BBC Four lately on YouTube. Anyway, I posted it on my Facebook last night but if you didn't see here it is.
Ah, the Cash Man. One of his sons at the beginning says that you can be a fan of punk or rock and still own Johnny Cash albums. How right he is. I wish I had kept my mother's Cash album collection. I miss those old LP's.
Here is Johnny at 23. He hasn't even filled out his features yet.
This second video was recorded in 1969. There is an interesting story in the documentary. Two guards were talking to each other, and remarking they felt there wasn't enough guards here. The warden said everything would be fine. Then Cash breaks out in this song, after the first chorus the warden says maybe it was mistake not to have more guards. After Cash ends the song the warden says in relief something along the lines of "If he had gone a third verse 100 more guards wouldn't have stopped the riot."
This morning I need a little energy to wake me up so with my cup of coffee I'm listening to what is arguably Queen's best performance. Here is Queen at Live Aide
Twenty-five minutes of pure bliss
The second song Freddy OWNED the crowd. Of course, being a radio head helps me feel that way. I mean, sheesh I still listen to BBC2 on my computer during the day. Radio here in the states sucks. All the stations are owned by one of several large companies who tell them what to play and when. What you get is cookie cutter radio stations. Even talk radio is like this. Still, I need my radio, even if I have to get it streaming. Radio, someone still loves you!
BTW, my friends back home would tell you this is my favorite Queen song because its synth heavy. They are wrong, I tell you, wrong! My second favorite is Bohemian Rhapsody and I dare you to find anything close to a synthesizer on that song. No, piano doesn't count.
To recap, you can have this
or you can have this
That is your choice.
The harmonies in this song break my heart-to have talent
enough to perform, much less write such a piece of genius.
The music here is so pure.
Now, if you want to hear piano and synthesizer together they sound like this
Ah the days when you could smoke in theaters
And yes I still smoke, yes I know its bad for me.
yes I know I can quit I did it for three years, and no
I don't want go through that again, thank you very much.
Just let me have a couple cigarettes a day, its not asking much
to be content.
According to YouTube if I like Chariots of Fire I'll like this song. Funny thing is I actually do. This is associated with the movie St. Elmo's Fire but was actually written for the Canadian wheelchair athlete Rich Hansen who was going around the world in his Man in Motion tour. That context makes a lot more sense to me.
St Elmo's Fire (Man in Motion) John Parr
Lately I've been living on YouTube listening to 60's artist Sam Cooke. A friend likes him a lot and I finally gave in wondering what I was missing. Now I realize what a genius he is and I'm trying to make up for missed time!
This man had such a wide range in his catalog from the commercial music like Twistin' the Night Away
You can hear his stage presence. Amazing.
to songs with a strong message like Chain Gang.
Chain Gang by Sam Cooke
The other thing I really appreciate about Cash, Cooke and Queen is that they have songs to fit all of my moods. Those suffering Huntington's know how our moods can change on a dime. Its amazing when I can play a best-of album and have songs to fit all those moods.
As I write this I'm in an HD chat room and we're talking about the way HD rages through our family, taking our loved ones from us. This cheesy song really reminds me of that when I hear it so I'm going to leave you with Disney's Circle of Life from Lion King.
