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.
Most of yesterday is a blur. A migraine set in and the pain was controlling me. I was constantly drinking coffee, which is why at 6 am I am still awake.
Depeche Mode - "Blasphemous Rumors"
When I don't feel good there is something soothing in David Gahan's voice. Maybe it is just that it reminds my body of times when life was so much easier, I don't know, All I know is my body and mind react to it. This is by far my favourite song of Depeche Mode. How true I find the lyrics. Come on, God would have to be twisted to allow so many people get sick with diseases like Huntington's which kills by destroying one's sense of self.
I think that God has a sick sense of humour
And when I die I expect to find him laughing.
Yes I know its not the most popular view, but it is mine.
Hiem and Phil Oakey-"2AM"
I can't stop playing this great song. I blogged it last time, but here it is again. You can purchase the awesome 12" CD here. If you read this blog you probably know I don't generally listen to much current music but this song has been on repeat whenever my head let me listen to music.
Bryan Ferry-"Taxi"
Something about Bryan Ferry's voice is so calming when I'm having a day where my nerves are everywhere. I feel that type of day coming on. I'm so stressed and feel out of control. The coffee and HD are not always good partners. They play off each other if I drink too much, and I had over 8 coffee mugs full yesterday.
Blondie-"Heart of Glass"
If you are looking for a great stereo recording, this isn't it. Its mono and limited in range. This actually gives this version a feel of vinyl which is how this song was recorded to sound. I love Debra Harry, she also has a lift-the-spirits vibe to her.
Depression 5
Anxiety 3
Well, the sun is rising, its a brand new day. I'm going to go into with a positive attitude. Its important for me to do that when possible. Its one of the few things I have control over. Music is so very important to maintaining this attitude.
Juice Newton-"Angel in The Morning"
G'Morning from Sunny California
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It's dreary outside the house today. A spot of rain through the grey clouds. How appropriate for Remembrance Day, or Veteran's Day, depending on where you live.
The weather also matches my mood.
Yesterday night, after I logged off of my computer I got ready to go out for the night with my friends. I picked out my clothes, turned the hot water on to soak the dishes, started dinner for J and me, and jumped in the shower. Big mistake. Catch it yet?
Denny Laine with Paul McCartney & Wings - "Richard Cory"
I'm in the shower and the hot water runs out. This was strange enough, but the water pressure seemed "off". This house, like all houses, has its quirks. One of them is the hot water. It is near impossible to get it perfect, and that has become an art form. Its either too hot or ice cold, nothing in between. You can run hot water til the cows come home and it won't run out. We have a full size gas water heater and it has been known to handle seven people. You can imagine now why it was so strange to run out of water. Now have you found it?
Second half of my Wings Double Feature
"Listen to What The Man Said"
Once I got out of the shower, turned off my transistor radio and got dressed, I went out to the kitchen. There was all my hot water, still running over the dishes. Thank goodness the stopper on the sink had not been sitting right at the bottom. If it had, it would have flooded into the living room.
I felt so foolish, dumb and idiotic all wrapped into one. Why the hell hadn't I noticed this, much less reacted, when I had about ten warning signs there was a problem? If nothing else, why hadn't it occurred to me as a possibility?
Actually, it had. That's whats so scary. I dismissed it in less than ten seconds in the back of my mind. It would have been forgotten if I hadn't walked out to the living room hearing running water.
Earth to Paul...Earth to Paul...
Blondie-"Heart of Glass"
I wish I had an answer why I let this happen. Just like I wish I had an answer for why I left the screen door unlatched for the cat to get out of, not once but THRICE in as many days. Geeze Louise. I need a full time keeper these days to follow me around. This isn't sloppy, or lazy or ... or anything. There is something wrong again with my thinking and for the sake of me I can't grab it. Instead I'm playing catch-up after one theoretical fire after another.
John Lennon Double Feature
"Nobody Told Me"
So after each of these near disasters I have to weigh what to share with other people and why. Am I doing it to gauge how "out of it" I'm acting, or so they can keep a reasonable eye on what goes around their own home? If I don't tell people, is that fair and reasonable?
What about the book club that meets in member's homes, do I tell them I'm the idiot that put the empty coffee pot back on the coffee maker? If not, is that fair or reasonable? When we meet in my home, how much do I tell them or why?
So then I look at look at it this way. How much would I expect to know if another member might cause a small accidental fire?
Wow, that's exhausting. How about if I just sit here and don't touch anything? Then I don't have to worry, double check or tell anybody anything?
John Lennon-"Watching the Wheels"
Let's be honest. Its not feasible to expect myself to sit still. I'm a moving, breathing human being. I'm not expected to be perfect, by any means. Where are the borders between "normal" and ""accident waiting to happen" ? Is there wiggle room? How about property co-ownership?
Traveling Wilburys - "End Of The Line"
Well, that's much ado about nothing. At the end of the day, after spending more time devoted to this issue than it deserves, I have come upon the conclusion that:
Nothing needs to be done. I'm a responsible adult. If I'm concerned about the cat getting out I can make a vocal warning to myself to strengthen the reminder that "I'm making sure the door is locked so the kitten doesn't run out in the rain as she is apt to do."
If I'm that concerned about leaving the water running or the coffee pot being left out or...
Then I just need to take a little more time each day devoted to my daily actions. I'm not in a race right now, I need to learn that.
So why was I so worked up last night again? Oh yes, the running hot water. That type of thing can happen to the best of us, HD or no HD. What's important is for me to remember that and keep it in perspective.
Bill Wither's "Lean on Me"
(Thank's to GAWS on Facebook for this one)
Its amazing what a walk between the raindrops can solve.
Good afternoon all. I'm having a really good day here. I had a chance to sleep in today and it felt good. When I woke up I feel like I do on Sundays. It was nice. I had my coffee and some late breakfast, a meal I've been neglecting lately. Then I headed off to the Shrink. More on that visit later. Still have a bit of anxiety but nothing like it was yesterday.
I woke up to check my Facebook and saw this brilliant Huntington's Disease/Juvenile Huntington's Disease video by Brett Thomas. I'm passing it on and asking you to please consider doing so yourself. Without educating the general public about Huntington's Disease people are misdiagnosed while their symptoms go untreated properly. This is unfair to those suffering from HD/JHD as well as those that care for them.
Okay now on to some music. This first video you are either going to love or hate. Its a remix of Human League's Being Boiled. DJ Gcr has sampled a lot of other tracks in here. I dig it, but am interested in other people's visions when I listen to music.
Everybody Dance Now.
I hope this entry doesn't seem fractured but I'm literally going back and forth between Old Grey Whistle Test on BBC2 and my videos for this blog. Bob Harris is interviewing Debbie Harry of Blondie.
I just love her hair in this performance. S-E-X-Y
She wouldn't have to worry about me pushing her aside.\
Errr... Back to the blog here. Sorry about that deviation boys and girls. She still warrant's today's double feature.
At this rate, this blog is never going to be finished. Trevor Nelson's Soul Show is on now. My music here may be inspired by that. Here is the 80's classic by the Commodore's Nightshift
I rarely do dedications, but I would feel remiss if I didn't dedicate this
to all the nurses at Hallamshire Hospital. Especially thinking of
those who worked the nightshift on the neuro floor when I
was hospitalized.
For those who don't know, I was the patient from hell. I didn't want to be on the neurological floor (who does), I had horrible memories from when my mother was in the hospital, I knew what may be coming down the pipeline (brain degeneration until I die) and so I didn't sleep until utterly exhausted. I saw something more in every test ordered and how dare you make me take a sleeping tablet. How did I know that is really what is in that tablet? I remembered all the tablets they gave my mum. Thanks but I'll pass.
Imagine if I'd been admitted for something HD related. I wasn't. I was there for a seizure from a high fever at age 14. They wanted to rule out a few other conditions along with JHD which was done without genetic testing as it hadn't come into existence yet.
So night nurses, I thank you all. That was almost 30 years ago but I still remember my care there.
To explain it another way, this is what I thought was happening to me. I really saw the rest of my life ready to explode from within.
I'm not exaggerating. This is how I felt.
Would you have wanted to be my night nurse?
I didn't think so.
Let's lighten up a bit here. I seriously do not want to go to sleep in a funk tonight,
Mood 4.0
The Seventies had some decent music.
Great actors in a great film. Its wonderful when your mood is in the tank...
Like mine is, right now.
DID I TELL YOU YET HOW MUCH I F'ING HATE THIS? I hate going from a good mood to a crappy one in the bat of an eye. IT SUCKS.
Thank you.
Now give me some Moroder and I might feel better.
Giorgio-you say? This is Kenny Loggins.
Actually Boys and Girls, Loggins was 3rd choice to sing this song
after Bryan Adams and Toto.
Although wildly associated with Disco music of the 1970's Moroder has won 3 Oscars
1978 Best Original Score for Alan Parker's Midnight Express
1983 Best Song "Flashdance...What a Feeling"
1986 Best Song "Take My Breath Away" from Top Gun
Over the years he has collaborated with artists as diverse as Donna Summer (producing "I Feel Love"), Freddie Mercury (Soundtrack to "Metropolis") , Sparks (producing two albums No 1 in Heaven, and Terminal Jive), and Phillip Oakey ("Together in Electric Dreams" and Giorgio Moroder & Phillip Oakey)
Now that you know more than you ever wanted to about one of my musical heroes here is Berlin with a non-Moroder tune.
Berlin's Metro - extended version
Okay, this is seriously bad. I am coming back from a two hour anxiety attack that ended but the underlying depression is still here.
Mood 5.0
Anxiety 8.0
Just took my night meds. After the first two nights, the Namenda isn't sedative at all. So that leaves me with having to sleep on Impramine and Lyrica. Those together aren't sedative enough. This is causing me to take Xanax to sleep. Xanax is a as-needed medication, I'm not supposed to take it to sleep.
Which brings me to my visit with the shrink today. You know, when my day was still going pretty well? Well it went...well. I didn't tell him I'm taking the Xanax to sleep but did tell him I had stopped taking the Haldol after a couple days because it was making me lethargic and possibly making some other symptoms come out, specifically night kicking and during the day leg jerking.
In fact, it was while I was on the Haldol that I fell down in soda aisle in the grocery store. Not too fun, let me tell you.
He wasn't happy at all about this but agreed to a trial of one week to see how continue to do without it.
This interesting article was posted by a follower on Twitter Power From the People-Human Batteries.
You know you're now an internet addict when...your girlfriend crawls into bed early with her book while you finish up your blog.
Mood 6.0 and raising
Anxiety 4.5 and lowering (I usually live in the 3s. I'm rarely anxiety free). I need to drop to three to sleep.
My understanding of this song is in burned in my heart.
This Tracy Chapman song resonates to me on so many different levels. It reminds me of leaving school after my O levels (now GCSE) to help my father take care of my Mum. I always wanted to run away from home and just keep driving. After her suicide that is exactly what I did, I took what little savings I had from my job, my life insurance policy and ran to America. I've never looked back. I visit home when I can, and I still vote but those are my only ties now with Britain. Oh, I also support the UK's Huntington's Disease Association financially with donations.
This is a sad song from a very sad movie.
Madonna's Live to Tell from At Close Range
If you haven't seen At Close Range run, don't walk, to the nearest video rental store. It is based on a true story and involves a troubled family including a father who is a burglar for a living. The premise sounds lame but it's actually a great character study. Christopher Walken, Sean Penn and Chris Penn all give staring performances.
On another level this song reminds me of how those of us with HD hide it. We hide it among ourselves and from the world. Often we deny it even when the symptoms are all there. In fact, some studies have shown that in fact denial can actually be a mental manifestation of the disease.
I love this song. It shows to me that Parker was able to get
a fabulous performance out of Madonna as Evita.
One thing I learned from this song is not to look down. If I do I'm only looking at the past and what good is that? I need to look toward the future and make my own plans. that is one reason to this day I adore Electronica music. Its future moving my its nature.
Nope, I have no Irish Blood in me that I'm aware of
however a friend of mine had a grandmother who sang
this song to her. Once it was played for me several times
it became a song with deep meaning for me.
For those of you who don't know the Spanish Lady is Death.
I've been thinking of death a lot lately. Most likely as I still have to make copies of my notarized living will and mail it off to the state so they have a copy. Its such a reminder to me that I won't be living a life of normal length, and that is fearful.
This album cut is just so moving. It reminds me that no matter
how low our opinions are of ourselves there are others
who care about us.
This is what true prayer should be,
prayer for others and not ourselves.
This is one of the big issues I have with life in America
People are taught that they can do and be anything
yet you go through other parts of the country and its a
good dinner if you have beans and rice.
Now I'm starting to relax. The backrub I'm getting as I type isn't hurting so I'm going to end with a couple love songs.
As you all know by now, this is the ultimate love song for the relationship
I have right now. I really feel that I won't be walking out the door.
In fact, I'm on the mortgage papers and own half of our house
I'll do it for you
J, You know I would
J, I love you.
I really do.
I hope I can spend the rest of my life with you
and tonight I'm finally going to tell you that.
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.
