Cruel

Joy Division-"Atmosphere"

Since I heard DJ at his first voice lesson on Saturday, I've been in a contemplative mood musically.

Lately there have several major things I was asked to hold in confidence.That is fine, but since I'm a fairly social animal I have a tendency to then hold everything back. Its learning to find my balance again

First in my family another member recently tested positive for Huntington's Disease. I was honestly hoping to take one for the team by getting HD, but it wasn't going to happen. 

Depeche Mode - "So Cruel" 

Its interesting, this last piece of music. I'm not a big fan of this tune, but I was looking for a song to put here, and my brain kept telling me it would be the perfect place for So Cruel. That is what music is supposed to do, influence how you think.


While I'm on the subject of Depeche Mode, the day I wrote my last blog post I realized my information was a bit off. They were still here until that afternoon working on the new album, I literally missed them by half an hour in fact, being as I was downtown on other business. The same block as the studio. Rumour is that they will be coming here to work so we'll have to see if its going to be another Santa Barbara Sound Design LP like Playing the Angel and the (Bare) rerecordings were. Personally, I love the vibe that studio seems to send the band home with. 

 Destruction Rock at it's best. The first half of today's double feature:

The Police-"Synchronicity II"

On another note, there was some information Dahy's mother did not want to know about her son's final days. Jane and I have no problem with this. We understand and respect their relationship. There's another person who felt differently and took it upon themselves to inform her in a way in which she would not have a choice but to learn. This person felt that they knew better what his Mum would want to know. Needless to say discovering that she was informed of this and then having to field questions to settle her mind was not a pleasant experience. She had wanted to go at this time not knowing, who are you to question whether her decision was the correct one to have made?

The Police - "Every Little Thing She Does Is Magic"

She is a lot like her son that way. Unlike me, who feels I need every piece of information to make a well informed decision the Kelly's seem to have a strong belief that they don't want or need unnecessary information. 

Pink Floyd - "Another Brick In The Wall"

Last November after Dahy's test results had come back with a very high viral load and dropping CD4 count. That meant he was becoming resistant to his meds and at best it was time for him to try something new. At worst, it was time for him to get his affairs in order.

We went down to Los Angles to see his doctor. Dahy sat down, listened to a quick briefing and then asked three questions. We left five minutes later, he went and filled a prescription for two tablets, swallowed them and proceeded to (try to) work for the remainder of the day. At 4:00 in the afternoon we drove back to the doctor's office and he let the appointment secretary know that the medication made him too sick for a less than 25 percent chance of working. 

Simple Minds - "Belfast Child (live)"

How the hell does someone make a decision like that? I never could. It is not enough to make an informed decision to discontinue medical treatment. For my friend, anything past that small amount of information would only cloud his process over a life and death decision.

If I can't respect that in my best friends and family, then what does that say about me?

Frankie Goes to Hollywood-"Born to Run"

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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Seize The Day

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"

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. 

The Three Letter Word

Frankie Goes To Hollywood-"Relax (New York Mix)"

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. 

Frankie Goes Rock the House

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Now on to better things.



I woke up late this morning, well late for me. It was three o'clock in the afternoon.


Depression - 7
Anxiety-3




I generally need twelve hours of sleep to feel proper the next day. The problem comes in when I fall asleep late for whatever reason. This morning I was simply anxious as the day is long so I had to wait it out. Then my brain went OCD on me over a phone that doesn't like to charge and you can get the message.


The problem is that when I wake up I feel like my life is useless after spending that much time cut off from it.

Sheena Easton-"Telephone"

Both the insomnia and long sleep hours are symptoms of Huntington's. I can't sleep from the HD OCD, and when I do I need extra sleep from all the energy HD has taken during the day. 

I generally don't tell people I know about this because they think by waking up late I'm plain lazy. All their words just  make me feel worse over something I can't control. Its frustrating and no matter how many times I explain this to them they still tell me to get up early so I can sleep early the next evening.  I wish it was as easy as that. 

Double Feature time!

Bananarama-"Na Na Hey Hey (Kiss Him Goodbye)"

I generally don't like covers of classics, but this is

one where the voices match the music.

Its also just a fun video to watch.

Bananarama - "Robert De Niro's Waiting"

As I mentioned last time, this is a favourite

song of mine as it talks about having to

escape from problems in a healthy way:

watching movies on a wall.

So here I am at four in the afternoon drinking coffee to wake myself up.  I'm enjoying an unhealthy breakfast of Pepperidge Farm chocolate chip, toffee and almond cookies along with it. The coffee has been increasing my anxiety but I just can't start the day without it. Part of the reason is that I've been waking up with nasty headaches and the caffeine helps with that. 

Denis Leary on coffee

*NSFW* for language

Speaking of anxiety, my doctor put me on a new medication, Tranxene or Clorazepate. He has me take it before the anxiety starts, and I can say that by day two I haven't felt a need to take my Xanex PRN. 

The Alan Parsons Project-"Eye In The Sky"

This is a really cute homemade video.

Give it a watch.

Now its time to get out those Frankie shirts because I'm feeling much better and want to share with you SIX Frankie songs. A special shout-out goes to lead singer Holly Johnson who showed me that just because some doctor tells you that you may eventually have a horrible disease doesn't mean life should end.  He continues to show me through his actions just the opposite. 

For those that don't know, he has been HIV+ since 1991 and is still turning out art when he's not  tweeting on X-Factor. Thanks Holly, you will never know how much you have, and continue to, inspire me.

Frankie Goes to Hollywood-"Wish You Were Here"

Okay, this is a "turn those speakers up as high as they will go

so the bass almost blows them" song. 

Honestly, outside of The Human League's early years Frankie is the only band who I have never heard a bad song from. I really hate having to pick one or even two songs of theirs. They are the one band I haven't seen live that I wish I had. 

Now before you turn down the speakers, here's a very rare song by them. It is not on Welcome to The Pleasuredome but was a B-Side.

Frankie Goes To Hollywood-"Bang a Gong (Get It On)"

What, you haven't been to California? Well I'll tell you what. Let's take a quick virtual tour.

Frankie Goes To Hollywood-"San Jose"

The other interesting thing about Frankie is that no matter my age I can associate with their songs. They always have personal meaning to me. This is true of their cover versions as well as original works. Another example of this is their cover of Bruce Springsteen's Born to Run. As much as I love The Boss's version of the song, I don't feel like he is singing to me. He's singing about American youth. When Holly sings it, I have a flood of memories of my early adulthood up to today. 

I don't know how they do that, I just know that they did. If you only watch one video today, make it the next one. To quote a friend of mine, "Holy Mother of Fuck." It doesn't get better than this.
ETA: Apparently I'm not the only one to think this way. After reading my tweet on this video, @TheHollyJohnson replied to me "@PaulWorre oh yeah we killed it that night x"

Frankie Goes To Hollywood-"Relax" & "Born to Run" Live

I was talking with some friends after watching the entire Frankie Goes To Hollywood Europe A Go Go set, and telling them how I forgot the great antiwar songs the nuclear scare brought us. So before I leave today I'm going to spin two for you.

Frankie Goes to Hollywood-"Two Tribes (Extended Destructo Mix Video)"

Most people might not remember but it wasn't uncommon for a group to have one normal length video, and another for the extended release song. 

Culture Club-"The War Song (Extended Remix Video)

On that note I'm going to have to log it off. My Android decided some time last night to stop charging. I only hope some of the apps I paid for are recoverable off my SD Card. If someone knows how to move the ones in the phone over to the SD Card that can be done through the handheld let me know. I can't get the plug to be recognized unless I push it in deep and hold it. 

That being said, my mood is still a strong 8. You can't beat the power of music appreciation when you have Huntington's Disease, can you?

Night!

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. 

Relax

Again I was up all night. There is no one to blame but myself. I wanted to stay up reading on my Kindle. Now that I can read again I'm behaving as it can get snatched away again. Because it will. That's just one of the many abilities I will lose as my Huntington's disease progresses. As it is now, my comprehension is like a child with ADHD, I am very easily distracted. This is because my mind can no longer concentrate on more than one thing at a time. I  used  to multitask so this is very frustrating. 

A Flock of Seagulls-"And I Run"

I have some very exciting news. There will be a guest blogger over the weekend. Its someone who I read on a constant basis so I'm looking forward to reading the piece.

Today's Double Feature-Frankie

Frankie Goes To Hollywood-"Two Tribes"

I love this video because it captures the feeling of the time so well. I remember the fear that our ally the United States would get nuked by Russia. In this video you see the two leaders fighting it out in a wrestling ring.

Frankie Goes to Hollywood-"Relax"

There are four videos to this song, and those are just the ones I know of. Several of them were banned by various stations, so they finally released a  video where Holly Johnson is simply singing with a generic background. Another featured the Brian DePalma movie Body Double. The banned versions had references to sex, as if this song wasn't explicit enough. When this was popular there was a fad to wear t-shirts that stated "Relax" on them. I owned one, but you would be surprised at how many people wore them and didn't realize the song was about sex. 

This morning I drank another cup of eggnog out of the cartoon. A neighbour had an extra carton and had dropped it by on New Years. Egg Nog is loaded with calories so I use it to supplement my meals. All the fat makes the sugar calories stick. Its also nice to drink because its naturally thick so I don't have to worry as much about it going down the wrong way.

Gary Numan-"Cars"

I received the results of my swallow test this morning. It isn't good. Food is leaking into my lungs. I am going to have to adjust my whole eating style and start thickening my liquids. I have an appointment with a therapist to help me learn to eat properly next week. Its scary stuff and sometimes I feel like my HD is attacking me from the inside out like a nasty  parasite.  

Sometimes I wish my HD would go on a holiday. It would be nice to live a carefree life for a few days, instead of being worried about my actions and thoughts. I don't see it happening though.

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.

Wassiling

I stayed up to late last night and paid for being up down and around yesterday.

Frankie Goes to Hollywood-"The Power of Love"

If I had my way, I'd want this song being sung when Jane's father walks her down the aisle.

We scratched John Denver's Follow Me off the short list, as we're already getting tired of it.

UCLA MEDlies - "Life in a Northern Town"

Pet Shop Boys - "Opportunities"

I had a chance to talk to my brother yesterday as the wedding date is being finalized. The last week before the wedding is going to find Jane extremely busy and I am looking forward to spending some time with his little ones. They are so adorable. The call also gave me a chance to run the idea about the PGD-IVF by him.

He actually thinks I have potential to be a good father. I told Peter I had fooled him pretty good. 

I told him my concerns, which is basically I don't want Jane to have two kids to raise, the baby and me. Peter said that I need to realize its her decision to make, and I don't have a right to take that decision away from her to satisfy some inner guilt.(although I must say I try to do that!)

Dead or Alive - "Lover Come Back to Me"

Speaking of PGD-IVF, the first visit at the fertility clinic went well. We both are are on the normal side of the fertile scale so that's one less thing to worry about.

John Lennon - "Beautiful Boy"

Another thing Peter and I talked about was this blog. Like Jane, he has always respected my privacy. He asked if I would have a sample entry just so he would see what its like. So I'll be sending this entry to him. 

Today's double feature-Sparks

Sparks-"La Dolce Vita"

simply because  its not a real blog entry of mine if there isn't 

a Sparks song.

Not just any single Sparks song mind you, but

two from their Giorgio Moroder period.

Sparks-"Tryouts for the Human Race"

The Harry Simeone Chorale-"Do You Hear What I Hear"

Remember the copy of this cassette of this we owned when we were tots? 

I still think its the best Christmas Carol album ever released.

Sam Stokes - "Here We Come A-Wassailing (The American Edition)"

Peter, this explains the historical misunderstanding of 'Ameriglish' and why the American's think us English are so idiotic :)


Lyrics:

Here we come a-wassailing
Among the leaves so green.
Here we come a-wandering
So fair to be seen.
Love and joy come to you
And to you your wassail too.
And God bless you and send you
a happy new year.
And God send you a happy new year.

If you're not sure what a wassail is
you're not alone
You wonder why it's been so long
and you have never known.
It's because it's from England
it's not American.
Just like cricket, the Rolling Stones,
and figgy pudding, too.
It's just something that
British people do.

If you visit England,
I have this to say to you.
If you need a restroom,
then you'll have to find a loo.
Yes, it seems quite absurd,
they have many different words,
and they spell things like
favo(u)rite and colo(u)r with a "u"
what a funny European thing to do.

If you're in an English restaurant
and you're feeling kind of sick
because the person next to you
has ordered spotted dick.
There's no need to feel faint
No, it isn't what you think.
It's a pudding with raisins in it
nothing quite so foul.
Well, in England they say "willy" anyhow.

I hope you've learned enough
about English carols from this song.
That "don we now our gay apparel"
doesn't just sound wrong.
It does not insinuate
that the singers are not straight.
It's just more silly British talk
and I mean no offense
but leave speaking English to Americans.
Just leave speaking English to Americans.

Oh, didn't I say something earlier along the lines that this would be a typical blog post...well on the second half of this entry I lied :-D

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.