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.
I'm sitting here with my cat next to me sleeping. She's sixteen years old, with arthritis and early dementia. She has let me know she's getting ready to go.
Real Life-"Send Me An Angel"
She spent all of today on the heating pad and could barely lift her head. Tonight she got up to eat some wet food, groomed herself and used her box. Then she fell back asleep. Her eyes have lost their sparkle.
Howard Jones-"No One Is To Blame"
I've had my baby almost my entire life in the States. I got her my first year here and she has seen more changes in me than anybody. She's survived three apartments before my house, as well as two girlfriends before my wife.
She saw me long before I started showing symptoms of Huntington's, and when I was a lot less stable in my personal life. She saw me stop drinking and finish my education.
A twist on the Double Feature:
Today I'll be playing the same song by both songwriters.
First up Terry Hall with Fun Boy Three
with the 1982 hit song in the UK where it went to number 7
Fun Boy Three-"Our Lips Are Sealed"
While they were in the studio, co-songwriter Jane Wiedlan and company
were having a hit over the pond in the US.
All the way to number 15 it was:
The Go Gos-"Our Lips Are Sealed"
This is one song that always takes me back to a softer, easier time. When I was a young boy and had a carefree life, no real responsibilities and both of my parents were there to support me. A time when I hadn't heard of Huntington's Disease and life seemed like it would go on forever.
Falco-"Rock Me Amadeus (Symphonic)
Does this man have a stage presence or what?
I never knew before tonight.
The mix of electronics and the orchestra is amazing.
This is another song I associate with carefree times. I went to the club and this was always playing, It was crazy to be dancing to the American version of a song in German by an Austrian but we sure rocked the house along with Falco and Amadeus.
Eurythmics-"Love Is a Stranger"
I think a large part of my early grieving is that when my cat goes I will have lost the last tie to the period in my life when I was quite a bit irresponsible, when the world was at my feet. By letting go of her, I'm letting go of that part of my life to an extent.
Pet Shop Boys-"Opportunities(Let's Make A Lot of Money)"
There is video footage of them performing this song live. It is only the second live performance I'm aware of in which the keyboardist uses the Fairlight CMI. That was a very expensive piece so most bands did not tour with it. The only other place I'm aware of that I've seen it live was The Cars' performance at Live Aid.
This last song really encapsulates how I'm feeling these last few days. I'll leave you with Depeche Mode.
The Rumour
This is a mini-movie made to Depeche Mode's Blasphemous Rumours
"I don't want to start any blasphemous Rumours
But I think God has a sick sense of humour
And when I die I expect to find him laughing"
.
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Today has been filed with ups and downs. I must say the ups are worth the downs.
I'm still drowsy and dopey from the phenobarbital but the side effects are wearing down. I only took one nap today and stayed up later than I expected although I'm very tired.
Eurythmics-"Here Comes The Rain Again"
My wife says I've been quiet lately and I have been. For the first time in my life I don't feel like like a man who has Huntington's Disease, but instead feel like "that Huntington's Disease man.". Its one of those little word games we don't really think about until it effects us.
I truly feel like my body is betraying me. As I told my psychiatrist I don't feel like I own it anymore, but have it on lease.
Talking Heads-"Wild Wild Life"
After spending some time on Twitter and enjoying the new box I purchased for the telly that lets us view streaming content such as Hulu Plus and Netflix, I put on Frankie Goes To Hollywood and jumped in the shower to get rid of the last of hospital smell. Somewhere between Welcome to The Pleasuredome
Frankie Goes To Hollywood-"Welcome to The Pleasuredome"
And Ferry Cross The Mersey
Frankie Goes To Hollywood-"Ferry Cross The Mesey"
I had a seizure. Right there in the shower. I must have fallen against one of the walls for Jane heard it and came in from the kitchen where she was cooking dinner.
Julian Lennon-"Too Late For Goodbyes"
I was okay, not even a bump on the head but all I remember of the hours beforehand was the music. It reminded me of the fact that music appreciation is the one thing a person with Huntington's Disease does not lose.
The Human League-"Blind Youth"
I've had this song stuck in my head since yesterday evening. This reply to Johnny Rotten's remark that The League is just "Trendy Hippies" has been replaying in my mind to the point I found myself walking to the rhythm of it. Its a good think I didn't have the Peel Sessions version in my head or I'd be running everywhere.
Another side effect of this medication is double vision, for example I see four hands in the screen capture above. I am having to rely on my touch typing as I can't view to keyboard or the lines on the screen. This time of night everything is double. I even see two Jane's next to me.
I'm trying to eat but its hard to aim the sandwich in my mouth. I wonder how blind people do it?
U2-"Stay Away (Faraway So Close)"
This has been my theme song lately. The closer Jane gets to me the more I find myself pushing her away. It hurts so badly. I know that part of it is I'm uncomfortable with her taking the care-taking role. Its hard seeing her in two totally different positions. For example, when I had the seizure in the shower I w as half bathed. Now somehow I had to get the shampoo out of my hair and soap off the left side of my body. After letting her rinse me off (I was in no condition to do this) how can I then go and see her as my lover? Its a very hard transition, yet one at least now I'm able to make.
U2-"A Sort of Homecoming"
I know the time will come when something will cross that line and I will no longer be able to make the transition. That makes me sad. To do that will be to deny part of her personality.
U2-"Some Days Are Better Than Others"
So despite all of this today I actually spent the several hours celebrating. Jane was notified today by the clinic that she her pregnancy test came back positive! Of course, we had to make all the obligatory telephone calls to relatives before we settled down to celebrate.
Kool and The Gang-"Celebration"
Then it was Viagra time.
Robert Plant-"In The Mood"
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Today the producer of the radio show HDView announced next week's topic. Its going to be about sexual matters. *gasp*
Some people saw the letters S-E-X in the sky here.
Like most other things controlled by the brain and nervous system, the sex lives of HD patients is no different. It is affected severely and it sucks.
I'm glad someone is going to talk about this openly, its about time.
Human League-"Love Action"
Only speaking for myself I went from normal sexuality to hyper-sexuality and then lack of interest and impotence. The kind of impotence that makes you jealous of the pool party dude.
Enzyte advert.
Then of course there is the whole HD emotional flat line problems and I'm screwed.
Eurythmics-"Love is A Stranger"
At times love has become a stranger in our house. My self worth goes down and my wife feels unloved.
The only work around I've found came from a book I read a while ago. The basic premise was there are a few things I CAN do to show my wife affection. Even when my emotions are fleeting, if I feel good I make a point to walk by my wife and show her affection. It doesn't have to be a lot, a little kiss, hug or even just playing with her hair. All these things tell Jane I find her attractive and have feelings toward her.
"Kiss The Girl"
That's not much but both of us agree it sure beats the alternative.
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.
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.
Today I ordered several albums and books from Amazon. Another CD arrived yesterday. The album is a 1986 album titled Philip Oakey & Giorgio Moroder. It was a commercial failure but I have always liked the mix of the two musicians. They complement each other just like Jimmy Sommerville compliments Sparks (No 1 in Heaven).
Sparks (with Jimmy Sommerville) The No. 1 Song in Heaven
The 80's was called the Coke decade for a reason
Soft Cell - TOTP
Soft Cell - "Tainted Love '91" ( Mendelsohn Mix)
Marc Almond Parody
Speaking of Oakey, this was in my email earlier today. Its Philip Oakey on ITV's Tiswas Indian Shirt Contest (Part 1) (1981)
According to Wikipedia: Tiswas was a Saturday morning children's Britishtelevision series which ran from 5 January 1974 to 3 April 1982 and was produced for the ITV network by ATV Network Limited.
It also had a limited adult following, as I have fond memories of my parents laughing while watching Titswas Saturdays.
Bronski Beat & Marc Almond - "I Feel Love (Remix)"
Sorry I didn't get this entry finished last night, I ended up in Emergency. I thought I was fighting my annual bronchitis but instead I have walking pneumonia so I had a 12 hour date early this morning with an IV pole.
I must have been sicker than I felt because I wasn't there more than an hour and already asleep as soon as the chest films were finished.
Slept from 3:00 am until 10:30 am, then spent some time Tweeting on my Droid and signed out at 12:00 noon. Only problem, once I signed the discharge papers they still hadn't removed my IV line from the antibiotics & saline, so I was waiting almost another hour for that.
Annie Lennox - "Why"
from the Diva album
Eurythmics - "Love is a Stranger"
I was going to head out to the Immedicenter today but at 1 am last night J just looked at me and said "You're going to the ER tonight." So I packed my overnight case, phone and a change of clothes and left with her half an hour later. I know a losing fight when I see one. I didn't have a chance in hell.
Power Station - "Get It On (Bang a Gong)"
Laura Branigan - "Gloria"
Helen Reddy - "Angie Baby"
I have always liked the way this video author used The Sims 2 as her canvas
to make an animated music vision.
Today's Double (make that Triple) Feature is my Mum's favorite artist.
After hearing her laughter in my head while
I remember her watching Tiswas with Dad,
it also sadly reminds me the Cure for Huntington's Disease
is too late for many.
Linda Ronstadt - "When Will I be Loved"
Linda Ronstadt -"You're No Good"
About here my temperature started to spike, so if I don't appear to make sense I probably don't. I'm at 102 degrees.. and under a physician's care.
The Stone Poneys - "Different Drum"
Mum definitively danced to a Different Drummer, in a good way. It was from her that I learned to stand up and be independently minded instead of just the next man on the block.I love being the 'not-so-quiet' Library Aide, the man who listens to Trance in his 40's and helps supply the local "Occupy Santa Barbara" down in Del a Guerra Plaza. Over 5 years ago, I was at the same plaza supporting the Print Teamsters Union protesting against the local newspaper gagging their reporters over union activities.
Okay, time for my antibiotics, inhaler and cough syrup along with my regular nighttime meds. Then off to bed I go. Its now 11:30pm and I'm awake and still tired. J finally pulled me off the couch and helped me into my pj's and in bed. I don't remember the last time I've had to have this much help while sick, not including the pox.
Its embarrassing. Its also more than a bit humiliating. Okay,its outright emasculating to have someone who I have a romantic relationship with change me out of my clothes and undies, into my PJ's and take me into the toilet to wash my face and brush myteeth. I outright wanted to die.
I had one of those a-Ha moments. Let's be honest here. Its not going uphill from here.
Now if we can only curl up and sleep. If I can't sleep in a hour, J filled my Lunesta sleeping pill (she knows me all to well), and I'll take one of those.
You know what really scared me tonight? What if I was living alone? Who would take care of me then?
$hit Mum, I don't know how you handled Dad caring for you the months you managed to have this kind of dual relationship. Bless both of you for loving each other.
