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 didn't feel this warranted a full entry yet I didn't want to change my current blog entry so I'm giving it an appendix (its my blog, I can make the rules up as I go if I want!)
I was checking my facebook when I came across Jacey's video
This girl is so strong, my admiration for her runs deep. If only we all could have a heart like hers the world would be a much better place. I recommend you check out her other videos, especially insightful for those not fully acquainted with Juvenile Huntington's Disease is the one titled HDV_0046.MP4 .
By the way,any disease with Juvenile in the title should be banned off the face of the earth which is another reason I can't fathom a God that would do this to us. It amazes me ("Ye of such little faith" as Jesus Christ would say) that someone suffering at so young an age would have such strong faith. Some may be upset at hearing her religious views, but to me it just makes my jaw drop even further onto the ground.
So after watching that video the title and contents reminded me of this song for obvious reasons.
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.
Having a lazy day Sunday. My eye lids don't want to stay up and for the life of me I can't figure out why. The only thing I can figure out is the med change. I have these great ideas but once I get out I feel like I'm going to fall asleep. Its driving my half crazy, but I decided to take the early part of the day off, and I just read. Its still hard to get my attention span locked on the book for more than a couple minutes, I'm putting the book down and resting my eyes.
If someone says they don't like Abba I
really wonder if they are in my age
range. Some things are instinctual.
The new YouTube format isn't working too well on my computer. Its not reading the time bar, so it sits at 0.00 while playing through the entire song. Since its not recognizing the time, the pause button isn't working either. Its just happens randomly, say every 20th video or so. Of course, that 20th time has to be when my lunch is cooking.
This man has influenced just about every
modern musician-or influenced their influences.
The lyrics in this song are poetry.
Kraftwerk-"The Model"
I always felt like they were close to selling out here.
Here they are singing in English!
Their native German would fit the music better.
You can skewer me for my opinion now.
Music doesn't get any funner than this. M doesn't even try
to take itself seriously.
Brilliant song from Chess. Written by a couple members of Abba
and Tim Rice. Something happened to this play on the way to
Broadway. It was rewritten and trashed.
A bit like Taboo. But worse.
Today's Double Feature is the genius known as Thomas Dolby
I'm going to end my day with a rewatch of this documentary.
Its worth it just to hear Martyn Ware decide if he
Last night on Twitter I saw a friend post and they mentioned that Paul Simon is coming to town and would I be willing to go? The answer was along the lines of *duh* No brainer. Of course I want to go!
It doesn't get better than Tony Levin, Steve Gadd and the late Richard Tee
as your backup band.
Looking forward to hearing
some of his new players on the 23rd.
The thing is, my friend doesn't have a car, so I drive in return for a ticket, but that's usually when she goes out of town. For example we were going to the Hollywood Bowl in early September but her mother died rather suddenly and unexpected.
Long story short she asked if I'd be willing to go to see Paul Simon with her next Sunday and I said I would. So we are buying our tickets at the Santa Barbara County Bowl Monday. I'm really looking forward to this. As you know, I had just posted Graceland a few days ago here. I'm a big Simon fan. There are some musicians that transcend all boundaries. You can be a fan of Punk, Techno or Heavy Metal and still enjoy Paul Simon. He just has a way....
Look at Gadd's hair here, just too funny.
As for my plans today, I'm going to the store to pick up supplies and then dropping them off at Operation Occupy Santa Barbara. Then I'll be checking up on my friend and trying to get her out of the house.
She's been holing up a bit. I think I know why. She is starting to show symptoms of HD. Its not obvious and one of those things that you wouldn't notice if you haven't been there. She most likely isn't aware of this. All she's probably aware of is that her body is moving differently and people are going to notice. What she probably doesn't realize is that people don't notice because humans by nature are a selfish bunch. Outside of those we share a home with we people don't notice $h*t.
At the end of the day we don't realize that though, what we do think about is how we are perceived by others. Are we seen as drunk or incompetent in some way? Are we seen as different? Do they see us the same way as last week or are we different now? I chose the video "And She Was" because I know that is how I felt when I first began to show visible signs of HD. I kept thinking people were looking at me compared to what they had seen before. What I was compared to what I am.
The way David Byrne keeps saying "And she was" is how I felt, like I have broken record in my head screaming over and over "And he was". Is that why people were still friends with me, based on our past not our present friendships? It took several years before I finally felt comfortable to ask someone if that was why they still spent time with me.
You might imagine my shock when they replied "No, its based on who you are NOW. Your personality hasn't changed, Paul." That was a hard one to swallow because it told me people still liked me for me, and that I was still a friend. It also meant that I needed to continue to keep my half of the friendship up.Finally it means that relationship may change when Huntington's grabs hold of my personality which is a When not an If.
The Friendship Song
In case you didn't guess the person I asked was J. She's one of the few people in my life that I can. and am, totally honest with. Most of the world I hide parts of myself from.
Lately it seems like I'm hiding something from almost everybody. Its frustrating but I just don't want people to know stuff about me. I spend too much time worrying about what they think.
No folks, the album cover doesn't move during the song.
I love the lyrics here. The chorus is so true:
"Everybody needs love and adventure
Everybody needs two or three friends."
Very basic and very true.
I love the message this song sends about technology.
This song always gets me thinking, but more so tonight as I finished rewatching Synth Brittiania. Many of those folks in the music world that embrace technology don't do so on the personal level. They aren't the musicians you'll see with Twitter accounts or Facebook pages. In the case of The Human League for example you find a group Twitter account that is rarely used, a URL that points to a Facebook page run by a fan and an unofficial page that gets information from the group. You don't see any member having a Twitter Account or any other internet access. In fact, lead singer and Synthesizer player Philip Oakey is on the record as being against these forms of tech. We are at the point were technology puts us everywhere, yet we are still nowhere.
Does anyone really care if we just "checked in" to the nearest grocer or electronics shop? Chances are, no one cares. Yet FourSquare is based on the premise that people do care if you are at Starbucks. I just don't get it. Maybe its that I'm too old but I think its basically useless and at most its dangerous by telling people too much info on us.
I either can laugh or cry. I'm choosing laughter on this one. This Namenda is really bringing me to the here and now. A new thing I've noticed today that isn't new at all is that I am in fact slightly "dancing", mainly to the left and then bringing myself back without realizing it. Its leaving a strange pattern on the sidewalk if I watch my feet.
How I know this isn't new is that I had a fall six months ago.I had walked to the left and hit the sidewalk. I wasn't doing well at all that day and had kept walking into this little circle. Now looking back why I didn't realize it for what it was at the time is just idiotic. Instead, it seemed everyone thought I had gotten into a fight but one kind woman. When I'd stop by she shared a story of her tripping at Costco which had given her a similar scrape up.
Dancing Line- Please give
11 minutes to educate yourself on
Huntington's Disease.
I'm wiped out and I didn't do anything today. I did get to the corner store, that was it. Besides that all I did was hang out on Twitter and write this blog. I also watched some music videos.
I don't have the energy to watch a full length movie. Can't imagine getting through it and understanding the plot.
I will be dropping the goods off to the protesters tomorrow, I got a list of what they need today on Twitter. If you are supporting the 99% here is what they needed, I'm sure it doesn't change that much by area.
water
food
first aid
art supplies
headlamps
batteries
pens
paper.
Earlier today I realized that I haven't been very depressed this last week. Something about this med change must have really worked because going in I was extremely bad off. My life's theme song was Elton John's Daniel. Nice bright and cheery, only not.
Now I'm thinking about doing things. Hell, often I end up doing those things too! Somehow, I've managed to try and find things to do. When I write my blog, I find myself putting it off to do other things. Even days like today when I had to put everything on the back burner due to a major loss of energy I recognized it for what it was, loss of energy. I'm not happy about it but i'm accepting it and ready to move on. I'll watch some videos instead. My point is that something is catching my attention. For a while there, you wouldn't have been able to catch it if you stood on your head and sang the entire Sparks catalog backwards.
While listening to Elton John I found this clip. Some people know how to put on a show and some people just put on a show. Meet Elton at New York's Radio City Music Hall performing his hit Levon
Well, I'm going now to give my cat some love. G'nite
Here it is, 9 in the morning. I'm hungry as can be yet every time I look down at my plate my stomach turns over. I'm not nauseated anymore, but it still does flips.
As you may know my doctors changed my meds up big time yesterday. I'm now on the anti-depressant Impramine, mood stabilizer Lyrica, Haldol and Namenda. I also have a Xanax PRN which used to be a regular med.
Medicine Jar-Wings
My typing sucks, so please forgive me, Its a good thing I touch type because every time I see something move it seems to be in triple time.Letters like n and m look exactly the same to me. I have to use context to read. Its like when you're in hospital for surgery and they sedate you, it makes it hard to do many things, you feel, well, intoxicated,
Poison Arrow-(Sheffield band)ABC
The hardest part of this is that I can tell the medications are working to help some of my symptoms. That in consequence makes me understand what's going on in my body for the first time since I became ill.
Mr. Bean Goes to the hospital.
I can't stay awake today. When I'm not literally typing I'm sleeping. I'm drifting in and out of sleep, which is fairly normal when one starts these sedative medicines. However,'I'll wake up and find a single letter pressed over and over again. Most often I wake up because my neck or head jumps. Also, I can't get my letters right, for example I just spelled can't can'g. I have always done this but not as bad (typed bad). On the other hand I feel the medication working in so many ways. I wish it wasn't so I could stop taking it and live in a pretend world again.The anti-dementia one (Namenda.) is the worst. It pulls me to the here and now.
My eyes still aren't working together, they just become worse.. If you remember that that has been going on mildly for days now, nothing new but frustrating as hell for readers like me. Reading is out, typing is on its way too. If I have to type fairly quickly I screw up and of course anything with a a "sound=alike work" I'm screwed because I fall asleep while typing, in fact fell asleep 3 times while typing this small paragraph.;
Its the one and only Sparke/Now That I Own The BBC
What I'm trying to say is that I'm scared. I've never felt like this before. I feel sick. I never felt that before. Now I can't pretend nothing is wrong.
Waking up this morning I started listening to music as I often do. Then came an OCD movement I've had for almost 10 years but it was before anyone saw other signs of HD. It happened yesterday too. I'm currently lying on the covers in my bed and having to move my legs up and down to the beat of music. Then my mind wants to take a break and I have to knock my knees together and rub them while doing the up and down movements. Its making it hard to type this blog while my lower body is doing its little dance. I'm doing it whether music's on or not, That's the first thing I tested. If its a trigger I need to know. Oh well, somehow I'll manage as I knock/rub to Blondie here. Its headphone time, play it loud with lots of bass.
Official video for Blondie's Call Me from American Gigolo
This must be my lucky week, look what I found: a remix of Call Me by no other than Giorgio Moroder, one of my favorite producers. Between this and the old BBC2 video Trish showed me that I posted yesterday (only their second TV performance) I am near heaven right now.
12" version of Call Me including new versions
Remixed by Georgio Moroder
I checked my email last night (after putting it off for four days) and found Meeko's excellent review of new The Human League album Credo I promised you a while ago. It is worth the wait with a track by track analysis. She also apologized for the delay explaining that she has been away from the internet quite a bit. In her defense, she sent it early four days ago. Considering that she's still dealing with her mother (and my friend) Penny' West's death from Huntington's Disease I completely understand.
She also wrote this (I have her permission to reprint the contents) >>>You posted a girlie song for me on your blog. If you think I will let this one go you are so wrong. /signed "through the eyes of love" <<<
Another Girlie Girl Song For @MeekoDev
That's what you get!
This email reads as if she's going to tease me now. It'll be worth it though, because if she heard the song then she also read what I said about her. (Third song down) Besides, we are always teasing each other.
We're all adults here, or so I assume. If not, you can go down to the cartoon video. I'm going to talk about something that I don't come across a lot when reading about early stage Huntington's that I do think needs to be talked about.
This morning I woke up quite late, and would probably have slept past 1 pm if J hadn't started snuggling against my neck. It felt very calming and sweet and a just great way to wake up after a horrible day yesterday.
t doesn't take a genius to figure out what happened once I woke up. I'm bringing this up for a reason though. Lately I've been feeling, among other things, less of a regular person. It doesn't help that other people are treating me in a different way (my reference yesterday to HD Paul is but one example). The primary literature and pamphlets I've found on the topic of sexual relations have to do with patients whose symptoms cause them to be cruel and sexually abusive.
I'm not saying this doesn't happen, sadly its fairly common with people suffering from HD. Still, there is a middle ground between the importance of feeling loved and being impulse driven.
Even the wonderful HDA FactSheet on Sexual Problems spends over half of the sheet discussing ending a sexual relationship along with other negative problems with the HD patient like sexual impulse control.
Take a Chance on Me - ABBA
To quote from the first half of the HDA piece on sexual problems:
One of the features of HD is the lessening of normal inhibitions. This is also true of sexual behaviour and some sufferers become sexually over-active. In an acute form it may mean that these persons will solicit a number of other people but much more commonly they make extra demands on their partners. These demands may be quite inappropriate as to the time and place, and can be very exhausting for the partner either in meeting them or standing the consequences of refusal (p 2) . Then people like my shrink wonder why I push people away from me. What if I start doing something like this and hurt the person I care the most about? Duh Doc.
If it is at all possible the couple should try to discuss their problems between themselves, or with the help of a counsellor, so that they can understand each other’s feelings. Extra attention and affection may reduce the need for actual intercourse, although some people have found that this has the opposite effect and any physical contact is misinterpreted. As said before, a person with Huntington’s disease may need a great deal of reassurance and may easily feel rejected. A caring and affectionate attitude should help, together with an acknowledgement of some of the feelings the sufferer may have (p 3).
Underlining is mine. This passage reflects how I feel as I write this section. I am sure many other people with chronic and/or terminal illnesses feel the same way whether it be chronic læukemia, ALS or Huntington's Disease.
Hello World! We HD positive peps are human just like you and we have human needs too!!!
We still like to be touched and told that we are special to you. We don't like to have to wait until we show a symptom of our illness to warrant some of this.
Thanks J for letting me know I'm more than a disease to you, even if only for an hour. It means more than you will ever know. .
Another issue is that when you care for us its not the same type of alone time. During this type of alone time we may feel you are taking care of the illness not the person. I know that I feel indebted to you for these actions.
On the other hand I appreciate small things such as when you bring the newspaper on the bed Sunday mornings just like you used to do before I got sick. If you don't fight me for the news section, I know you aren't seeing me the same way you used to.
By the way, a romantic kiss once in a blue moon is more special than you probably know as well.
I know its hard sometimes to be carer and lover. I saw my dad do the juggling act, but now I realize why he felt it was so important.
There have been so many times I thought J stayed with me for the simple reason that she would have trouble living with herself if she left me. I honestly think that if she leaves on holiday alone she'll see the trap she's in and stay away. Most of me thinks that's one of the smartest things she'd ever do. A bit self-centred, aren't I?
The Monkees - Last Train to Clarksville
Yet I remember times trying to convince Mum that wasn't the reason my own father stayed with her. There were times my older brother and I heard them make love through the wall. I would be relieved because I knew that the next few days she wouldn't think my father was going to leave her and pepper me with questions a child shouldn't be asked by a parent, at any age.
Well for her (and as I've written before here, it appears for me also) psychiatric symptoms are the more prominent symptoms in the early and mid stages of HD. That may includes paranoia, but mine is so mild at best my friends laugh and tell me if that's paranoia they also suffer from it. "Its nothing like your mother's," people who never met her tell me. At least, in their eyes I'm not paranoid yet. Or so I try to reassure myself. What I'm trying to say is its hard to trust yourself when it comes to paranoia.
I remember enough French from Comprehensive
to realize the subtitles are funny as hell.
Speaking of these symptoms, I was able to talk to my GP (family doctor) on the telephone today and she told me she spoke with my shrink after I left the office. That's normal as she is the main person for my care. All my other doctors circle around her.
They both agree they want me to consider starting a very low dose of Haloperidol (Haldol) for the nausea among other things. I think there appears to be an underlying condition they aren't willing to talk about with me until my appointment with my neuro in about six weeks and my GP much sooner. I think they want the neuro to discuss it with me since I'm refusing to even take the anti-nausea drugs in the family. I'm going to let it sit for the night, and just keep taking Ginger which for the second night is keeping my nausea away. I'll make a call to my shrink's office first thing in the morning. Watch, the other symptom is paranoia (That's a joke).
Cars (vocals late Ben Orr) - Drive
You'd think one of the three would tell me why they think I need an anti-psychotic before I blindly take it but so far noooo.....
Although I hate neuroleptics, after the past month my mental health is nothing to fool with, no ifs-ands-or-buts. If they admit they recommended it, I'll start it. Also, my Neuro started me on Namenda. I have two monthly starter packs because I've been putting it off and my he keeps giving them to me. There haven't been any studies on it one way or another regarding HD directly but now that I have been having very slight problems with cognitive thinking its probably best to start. To be honest, he's been pushing it on me for over 8 months but I've been resistant to taking more meds. Between prescriptions and supplements I take enough thank you very much!
My mother loved this song. Very strange to be in the UK and have Linda spilling out the window. It wasn't your normal English home. My Dad would play Paul Simon and New York Broadway Theater musicals. How they raised a son who loves Trance and SynthPop I'll never know.
Still, after all these years this song moves me.
"Mum, see me waving? I'm playing your song!"
Graceland by Paul Simon
I'm going to try and convince my father to fly out to America if I pay for us to go to Graceland. I've never been there and would like to go just for the kitsch factor alone. In fact, I'm going to email him this video as soon as I'm done writing this blog to whet his appetite. Paul Simon with pictures of Graceland, how can I go wrong with this video? Now that I think about it, I'm going to start saving up to buy some aeroplane tickets for his birthday.
Worst case scenario: I use the money on another gift.
Graceland is far from being on my "bucket list" but it should have been. I want to do this both while I can fully comprehend it & while my Dad is still well enough to enjoy it, which may be only a few years. The main reason its on my list is that I want the chance to see my Dad that happy.
Fish Heads
I still have my old Apple Classic Computer here. Last month I finally started getting around to turning it into an MacAquarium and then the King of Depression with the Queen of Anxiety hit and I left half of the interior still intact. So tonight I finished cleaning out the motherboard and most of the electronics. Tomorrow I'll test it for any water leaks and start filling them with epoxy. Before long I'll have some fish in the new tank and it will be an awesome aquarium. I'm really looking forward to the finished product. There are so many ways to customize this, from placement and type of heater to the design in the back if any and so on. Its a really fun project. Its like model building but you get a real usable product from your results.
