Double Trouble

I can't believe I'm home already. Its been two days here,. and all is well. Actually it isn't. Yesterday I went to the mail box only to discover the Feds decided they didn't like my deferment on my student loans so they're deducting it from my disability check starting-this month! As if that wasn't bad enough, I get to the pharmacy and when I didn't pick up my meds last month, they shelved them. Then they forgot to put my refill back in the computer. That means I don't have my Haldol until I get in to see my doctor next week. Not good. This med controls my aggravation level, helps with my Lyrica to control my moods swings, and by its natural sedative effect controls my shaking with my Klonopin.

Roman Sidorov-"Sedative"

Dahy's twins are currently staying with us. They are rambunctious and filled with energy constantly, just like their father. They're wonderful children and its nice to have them around when they aren't in school. It also makes it harder for me to drink because one of my steadfast rules has always been that I don't drink around children. Even in my worst when I was climbing up freeways hoping a car would run over me, even then I wouldn't drink around my sister or any other children. I can't count the times I dropped my little sister off at the neighbours just so I could get loaded. Its a lot like the way Dahy would drop off the twins at my home when they were babies, now that I think about it.

The Cars-"Drive"

Right now I'm having a real Huntington's Disease moment. As I was proofreading the last paragraph I noticed that very single time I'd use a pronoun relating to myself, I had just left it out. Oops. That really needs to fixed dontcha  think. 


On a more cheerful note, because I really don't feel that down in the dumps even if it seems like it, Depeche Mode is back in the studio. Yeah! Now if we can just drag Human League back there as well I would be really happy. 

The band had nearly fallen  apart from problems on the Devotional tour (including Martin Gore's alcoholic seizures, Andy Fletcher's near nervous breakdown which forced him to leave the tour and David Gahan's heroin, cocaine and alcohol addiction) and this was their one chance to prove they could come back together.When MTV offered to feature them on The Singles Tour they knew they would have to prove they were still around. In the middle of this performance you can see on their faces that the music and audience began to click. It is one of those great times in musical history. 

If you ever want to do a PSA on drugs, it should star this band. This was Depeche Mode's due or die moment.

Depeche Mode-"Enjoy The Music @Cologne (live)"

That song starting me thinking of other do or die moments. Here's another. It was what finally brought U2 fame and fortune. Live Aid: 

U2-"Bad (live"

Live Aid

While this is playing I'll fill you in a bit on everything else that's been going on in my life. The Twins are getting comfortable here. We had a hard afternoon yesterday. The Twins had noticed my shaking that the Haldol usually smooths out. They wanted to know what was wrong. I explained it in very basic terms leaving myself open to questions. DJ hit me right off with "Are you going to  die from this?" I think he asked this because  his father died from being sick. I told DJ it would be a long  time from now. Then he hit the ground in a temper tantrum while yelling that this is what his father had said. I didn't know 7 year old's even had temper tantrums but this one sure did. I got on the floor and rolled over to him, putting my head, face up, under his. He had to stop throwing the tantrum because he didn't want to hurt me. Then I simply asked him if I looked like his father, he had to admit I didn't. Then I tickled him until he smiled. That seemed to resolve the issue for now.

I do want to take a minute to thank everyone on my Facebook who took the time to answer my question about talking to the kids about HD yesterday. The information I got was extremely helpful when talking to them. 

Here is a great single from Credo, The Human League's latest album. 

The Human League-"Never Let Me Go"

Just a minute ago I went looking for my Facebook/Twitter code on some older posts. Among them I found the two pages I had written the first night I was sitting at Dahy's bedside over at the medical center. I published that post, and an hour later pulled both pages of it off.  Its so sad and filled with my emotion that I'm still a bit shaken from reading it. Someday I'll publish it.

Here is one of his favourite songs.

Muddy Waters="Baby, Please Don't Go"  

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Exhausted pg 2

Harry Chapin-"Taxi"

"Baby's so high that shes skying,/

yeah she's flying afraid to fall/

I'll tell you why Baby's crying/cuz' she's dying arent we all".

So here we are still at the medical facility. Sitting and waiting, and waiting to sit. Things calm down just long enough where sleep comes and then someone in the room will shift and everyone wakes up. Once we were able to bring in a xerox of Dahy's driving licence to compare the signature against his advance directive things changed drastically. Unused machines were physically removed in some cases, for larger pieces they were simply moved. I have learned more about "no pressures" and "DNI's" than I ever thought possible. 

I've learned how easy it is to have a chemically induced cardiac event and how truly painful they can be. I've learned some doctor's fear giving medications out on the slim chance the resulting cardiac condition will be aggravated, or that medications we take daily like decongestants raise the blood pressure. That last lesson I learned after he vomited twice after coughing so strongly, yet still refusing the morphine. The doctor finally called in a steroid so he could sleep. He felt the other medication options would increase his risk of a heart attack exponentially. 

I've learned that for some people it is instinctual to avoid medications and when they no longer do is the time you worry. I learned that lesson tonight when for the first time  Dahy  didn't try to move away from the morphine injection when the evening nurse told him what was in it. That was the first time I cried.

The Cars-"Drive"

Tonight I've learned that even six year children will love unconditionally when they can't be loved  back. I've learned there is such a thing as too much silence, and I need to keep my computer or telephone mp3 plugged in simply to get some sleep. Otherwise, every time Dahy misses a breathe I waken. And tonight he's been missing a lot of breathes and that's when they are strong enough to see or hear. 

Depeche Mode-"Enjoy The Silence"

All I ever wanted, all I ever needed

Is here in my arms

Words are very unnecessary

They can only do harm

Words are spoken to be broken

Feelings are intense, words are trivial

Pleasures remain, so does their pain

Words are meaningless and forgettable

Billy Idol-"Eyes Without a Face"

Dahy taught me that male bonding isn't just those wild road trips like the one we made from Santa Barbara to Dallas because we wanted to be able to say we'd been to Texas (no other reason) but it was also the laughter of trying to prove, and succeeding, at making 12 step meetings everyday by calling ahead to Central Office just like they taught us to do. Its the promises we made to each other while in the car, that we thought we'd never have to cash in on, because we really weren't that sick. Male bonding is being there and fulfilling those promises because that's what real friends do. 

On our road trips we'd listen to Billy Idol or whatever other crazy tune would come on the radio. We did it just because we could. For those trips we were two little boys on the road. We'd stopped growing at too early an age and this was our time to safely indulge that inner child. Our extent of planning these trips was picking out a destination, throwing clothes into a suitcase the night before, and then grabbing breakfast and lunch at the mini-mart. We were wild, and we were crazy. Actually we both still are.

Godly and Creme-"Cry"

This is the first time in my life that Jane hasn't been able to comfort me. She doesn't know what I'm going through because our relationship was so strange. I've been thinking of a photograph  Dahy has on his Facebook, it was taken in January of this year, actually on the road when we drove  partway on the PCH to judge the distance for a business trip. After a horrible holiday from his health he had a temporary feeding tube placed in so he could gain some weight back. After a lot of consultation his medical team agreed and he pumped it full of everything he could at the highest dose. So in this photo he's leaning over, his glasses hanging out of his T-Shirt neck and he looked healthier than he had in several years. and that infectious smile of his says there is nothing at all was wrong and we were having an inside joke. In fact, after our rental car broke, we were waiting for a new  one but in the meantime he had snuck into the break room where he discovered a NiHi soda machine. He was in heaven.The entire time we were out spending precious time at the dealership he was as happy as a child who had just discovered pirates gold.


I don't have access to download the photo but I may ask his wife for one as it brings back so many memories to me. Off to listen to music very low and then to get that sleep. I can tell by his breathing appears to an have decreased to an shallow breathes with an uneven pattern most likely I'll to be aware of this after all. 

Good Night 

Will I?

Before I say anything else, I want to thank everyone for their kind words the last couple of weeks. They mean more than you know.


I've been so quiet lately simply because I don't want to talk. Its a symptom of my depression from Huntington's Disease, but more than that I've just been contemplative.  One thing I have been doing more of is reading. The Kindle has really reopened the world of books to me.

Howard Jones-"Things Can Only Get Better"

On top of the lack of initiative is a splitting headache and a malaise I haven't been able to track down and life hasn't been the cheeriest this week.

The good news is my cat is doing better. Once I brought home the money in case I would have to take her to the vet and she started eating, grooming herself, using her box, and even playing with her sister again. If I didn't know better I'd think just the fact she knows she has an out has brought her comfort. It wouldn't surprise me. She's a very smart cookie.

Human League-"Blind Youth"

Lately I've had early Human League running through my head. "Blind Youth" and "Empire State Human" aren't the most melodic songs to be stuck on repeat but this last week I haven't been able to shake them. 

The Human League-"Empire State Human"

Adding Heaven 17's Temptation to my mental trio and you could say my head's been in a Martyn Ware state of mind.

Heaven 17-"Temptation (Original Demo)"

Between the Namenda and my Kindle I've found myself spending most of my days reading again. Its driving Jane up the wall because I'm so quiet again she's having to adjust. 

Bronski Beat and Marc Almond-"I Feel Love"

When I'm not reading we've been taking advantage of the new couch and having the telly hooked up to Netflix and DVD players. We've been watching a movie together most evenings this past week.

Fellow Sheffield United fan P. d. Heaton 

The Housemartins-"Flag Day"

The Housemartins-"Get Up Off Our Knees"

One thing I did manage to accomplish this week was setting up a blog for my wife. She had decided she didn't want full read/write privileges here as she doesn't read my blog on a regular basis (she feels more comfortable giving me space to write my thoughts without her having to intrude by reading them.) Then I moved her posts from here onto her blog, so all of her writing will be in one place.

The odd thing is this week I just haven't been on the computer that much. Facebook is checked once a day, I'll send a couple tweets on my phone, and that's about it. 

Tracy Chapman-"Fast Car"

In all honesty, I've been future tripping a lot. The problem with future tripping is that when you have Huntington's there isn't much in the future. Things my mind have been focusing on include how I will die, when I will die, and my relationship with others at the time of my death.

Simple Minds-"Alive and Kicking"

I'm not doing this in a depressed sort of way, but more of a factual sort of way. My therapist said its because I'm in the final stage of facing my HD: acceptance. For obvious reasons this has made me introspective.

Depeche Mode-"Enjoy The Silence"

This isn't something I can talk about. My wife wouldn't understand because she's not in my body, I don't feel comfortable talking about it with friends, and to be honest there isn't much to talk about. Where I am is more of a state of being than a  set of thoughts.

The Cars-"Drive"

My mum has also been on my mind. I wonder about the afterlife, if there is one, and if I will ever see her again. Sometimes lately I just miss her. I want to hear her laugh, see her smile, and be there for her when she cries. This is my way of saying "Dammit, sometimes I just miss her." 

Its times like this that I loathe HD.

Mike and The Mechanics-"The Living Years"

At the same time I wonder about my wife and our child: how much will I be able to see of their lives, what and how will they see mine, what will we have the chance to experience together?

Rent Motion Picture Cast-"Will I"

These thoughts are actually liberating. Its as if they were being held back by a mental.wall, and now that its  down everything is rushing out like water behind a dam. When they stop running it actually feels cleansing. 

Because no matter how hard we look life is just a bunch of

Small Circles

The Rainmakers-"Small Circles"

G'Nite now.

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.

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Feeling Under Pressure

Good Afternoon Boys and Girls,


The clock just hit twelve noon as I sat down to type my first few letters here. Its good to have a new, fresh start after yesterday.


Did I sound whiney or what? I probably did because I was so tired of being sick and tired. One thing many people don't understand is that since Huntington's Disease affects the brain it also affects our thinking processes. We know its busted, that's the frustration. Yet we still want it to work right, as we often know what right is. So we fight it inside our brains.


Like me. Yesterday. I knew it isn't right to be so upset about walking three blocks and being inside a shop for 15 minutes. Yet I was petrified to go. Petrified as being on the upside down loop on a roller-coaster. I knew that the fear wasn't in proportion to the action, but that didn't help at all. It simply adds to the frustration.

You know that stupid feeling you get when you leave the house and forgot to check the coffee pot? You know you unplugged it, yet... that little voice is saying "Did you check it? Are you sure its unplugged?" Magnify that by 15 and you get an idea where I was yesterday every time I got up to leave the house.


This went on for nine hours! It took that long for me to throw Sparks on and get outside the house. Then one foot in front of the other and twenty-five minutes later I'm done and I'm home safe. Exhausted but safe.


Then comes the next day. Here I am. I want to go out one block. Yet again the fear is taking over, I can feel it in the back of my kneecaps. My legs are already pulled up in a protective angle. WTH?


All over what? The fact I need to go outside to smoke? You got it! So here we go all over again.

Joni Mitchell - "Circle Game"

Its days like yesterday and today when it doesn't seem so bad to know that some day I'm going to be 6 feet under. I'm not suicidal. don't get me wrong. I only mean that it will be nice not fighting myself.

Stop the Merry-Go-'Round. I want to get off!

The Eagles-Hotel California

So now I'm back home, and do I feel better? Hell no. Now I need to get out of the bedroom to the kitchen and that's now too much. So I'm going to relax, try to make the bed around the sleeping cat and really try to find something cheerful.


Frankie Goes to Hollywood will be our Triple feature today with three cover tunes from their brilliant album Welcome to the Pleasuredome. There isn't one bad tune on this album.


And before you ask - The answer is Yes, I did have a "Relax" T-Shirt and Yes, I knew what it meant. As long as the folks didn't know I was safe.  ;-)

Frankie Goes To Hollywood-"San Jose"

Frankie takes on Bruce Springsteen's "Born to Run"

"Ferry Cross The Mersey" with brilliant visuals

Every time the music stops my head starts whirring and I feel the empty walls. Strange. 

Paul Oakenfold feat. Matt Goss - "Firefly"

Sophie Ellis Bextor-"Murder on the Dancefloor"
This is just a "fun" song.

I was reading on my Facebook earlier a friend talk about Queen  (Queen, Cash and Cooke) and it got me thinking about what musical geniuses they were. 

Queen-"Flash"

Queen-"Under Pressure" feat. David Bowie
Gotta love those visuals
R.I.P. Freddie Mercury

I'm throwing on one more by Frankie simply because I can't get it out of my head today. Although a heavy Christmas release, I first heard this as the last cut on the Pleasuredome CD (or was it on Peel). Either way, it is one of the most beautiful love songs I've heard in my 40 plus years on the face of this earth. 

Frankie Goes to Hollywood-"Power of Love"
Sit back, relax and forget about the camels for a few minutes.
Just listen to the lyrics.

On that note I'm going to leave you. The cat finally stopped making me pay for waking her up after making the bed, in other words after an hour of demanding payment in petting she fell asleep. 

This leaves me with several chores around the home to finish before I go out to a friend's house later tonight. So off to do the dishes and jump in the shower, while I can.

Now, if I only owned the BBC... ;)

G'Evening.

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Sex, Drugs, and Rock 'N' Roll

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.

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