HD is a creature of habit

Well, don't say I didn't warn you. Its been really tough to get back to writing this blog just as much as I thought it would be. As I mentioned in that post, HD is a disease that causes some of us to become creatures of habits, both old and new.

Baby David is now waking up in the middle of the night. He's generally still a content child. With me as his father, I'm shocked, I tell you, shocked!

Casablanca's Gambling Scene

All joking aside, I never thought I'd feel the way I do toward my own child. As I've written about many times I never expected to have my own biological child. After seeing what HD did to my mother I couldn't bring a child into this world that ran a risk of getting this terrible disease.  It was only during the testing process when Jane brought it out that there is technology now so that our child will not suffer from the illness that will take his father that I even considered it. Even then, I thought Jane would be the one and only caregiver.  I never expected to attach to our baby as terrible as that sounds. I just didn't see it happening. 

This next song describes how I thought Jane and David would think.

Helen Reddy-"You and Me Against the World (Lou Rawls Show)

Not that I didn't think I'd be attached to David, just not even close to this extent.

Me attached to my biological child? Concerned how seeing HD effect his father? No, not Paul Ware. That must be another man.

Joni Mitchell-"The Circle Game (Live 1967) 

Can you tell by my choices in music today that my sister's positive test result is still on my mind? She loves late 60's and early 70's music even though she's my baby sister. God, its even hard to write what you tested positive for Sis. I'm sorry you tested positive for Huntington's. I know you want me to be able to say it. I just did. 

So for you, one of your favourite artists singing a song that is about as non-HD as you can get. 

I love you.

Gordon Lightfoot live on the American tely show Midnight Special  -"Sundown (1974)"

Back to David, that's not to say I thought I'd be a lousy Cat's the Cradle type of Dad, just that never saw myself wanting to cradle him, him, feed him, and hold him on my chest much less feel lousy I can't change him.

Harry Chapin-"Cat's in The Cradle"

I saw on Twitter on Tuesday on October 23rd that Depeche Mode will be having a press conference. Most likely this is what the band referred to earlier this year. That's basically the announcement of their tour. 

I only hope they will be playing the Santa Barbara County Bowl again. Since I've given up driving for the most part, concerts out of town are a real pain in the butt. Also the last time I saw them a special thing happened that is just so County Bowl (for those that don't know, its a small, non-arena venue. They play here because Martin Gore lives in town).

Depeche Mode-"Walking in My Shoes turned into Enjoy the Silence"

At least they can laugh at themselves, which is more than I can say for Jane. This was the one and only concert of theirs she's gone to. Thankfully, I have a friend that will drive me down and another to meet us  if its out of town. I don't see him as often as I'd like lately, but he'll be coming up if they play the bowl as well so I'd rather have the intimate atmosphere.

Recently I had the chance to see Elvis Costello in concert. He played for over two and a half hours here without a break. I've always really liked his 80s music, Veronica was just the topping on the cake.

Elvis Costello - "Veronica" 

 For some random reason I've found myself listening to a lot of Queen lately and thinking of Trish Dainton and her husband Steve. They were giant Queen fans. She lost him a bit over a year ago to Huntington's Disease. She also is a poet and wrote a wonderful book on HD Curse in Verse and Much More Worse. (Yes Trish, I'm still pushing your book, its that good).

So when I came across this wonderful video of Queen interpreted in American Sign Language (the translation is here at the link) Trish was the first person I thought of.

Queen-"Bohemian Rhapsody" (Stephen Moore in ASL)

 On that note, its time to close up.

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.

Radio, Someone Still Loves You

Power Station-"Some Like It Hot"

Very interesting take combining live performance with sampling.

Still going with the this doesn't feel like I control my body this morning. It just sits wrong. Every time I try to lay down on my side it just inches away. If this keeps up I'll be off edge of the bed in a few minutes.

In the meantime, I'm reading an interesting article from The New York Times on the homes of Mexican drug lords. For those of us that are interested in Urban Exploring, this article and photographic essay is a must see. 

Duran Duran-"The Reflex"

And this, boys and girls,, is why John Taylor ended up in rehab.

U2-"Bad"

Live Aid, the day America finally realized 

what we already knew:

That U2 was to be a musical force to be reckoned with

One of the people on my Twitter feed is a giant fan of Big Country. Its because of her that I went out searching for a good live performance video to put here.

Here is the late Stuart Adamson fronting and playing some mean guitar in an early Rock and Roll concert in Russia.

I may joke around sometimes about substance abuse but make no mistakes. It kills. Stuart Adamson died as a result of an alcoholic suicide attempt in 2001. He left behind two children and a wife.

Big Country-"In a Big Country"

And of course, any time I can push Tony Hadley, lead singer of Spandau Ballet and patron of the HDA, you know I will. So here's Tony at Live Aid. 

Spandau Ballet-"Only When You Leave"

This next one still gives me chills to this day. I can feel them run all the way down my legs.This was one of those "Where were you" moments of my life. I can still see the floor under my knees in front of the television when watching this. The house stood still. My father, who had been putting up with my brother and my crap all day, shut up. Queen came  on, and Freddie started singing. My brother and I were suddenly quiet. Then my Father's voice came from behind us,  replying to Freddie singing "You made us think we could fly" with a quiet "Yes, you did"

Queen-"Bohemian Rhapsody/Radio Ga Ga"

Have a good 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.

I'll Dance to Anything...by Moroder

Mood 3.0
Anxiety 3.5 (but on 4mgs of Xanax to get there)


I'm very excited. I finally found a copy of the Dead Milkmen's CD Instant Dance Hit [You'll Dance to Anything] for sale at Amazon. You'll have to wait for the video though, as there isn't one on YouTube. Don't worry, I'm going to teach myself how to throw some graphic on there so I can upload it.


I actually joined Mog.com today just so I could hear that song once. LOL


My depression has been kicking my butt these last few days so I'm going to be playing some music with a driving beat tonight. That usually cheers me up.


First up from Moroder's Soundtrack for Flashdance

Irene Cara - "Flashdance (What a Feeling)

One interesting thing I've noticed is that music brings me up as long as its on. Once it stops my mood slowly slides back most of the time.

NSFW (lyrics)

John Travolta and cast - "Greased Lightening"

Some songs were just meant to play loud, and this is one of them. 

Yes, Paul even listens to classical music once in a while. Here is the brilliant James Levine conducting the New York Philharmonic

New York Philharmonic-Aaron Copeland's Fanfare for the Common Man

This next video came up when I was looking for a search on Morder's Metropolis. Now whenever I see Queen I think of my friend Trish's late husband Steve, who was a big Queen fan. Although I've never met either of them personally, through Trish's poetry I have learned an important lesson. I am not alone in this journey. 

That is one of the reason's I love her book so much, when I start getting down in the dumps I can open it up suddenly its not just about me, its about all others who suffer from Huntington's Disease as well as their Carers. So Trish, this one is going out to Steve.

Queen-Radio Ga Ga (with restored Metropolis footage)

This is Moroder's song The Chase from his Oscar winning soundtrack for Midnight Express remixed by the talented Paul Oakenfold. Very interesting these two together. Enjoy.

Morder - "The Chase (remix by Paul Oakenfold)

This next song needs no introduction.

Georgio Moroder composed this with Tom Whitlock

Kenny Loggins - Highway to the Dangerzone

This British Bloke is sitting here on the bed with his American Fiancee while they both listen to a Canadian Woman sing about Kids of America. Go figure that one out.

Kim Wilde - Kids of America

This last song is to relax me to sleep. I heard it for the first time tonight and fell straight in love.

Imogen Heap-Between the Sheets

Mood: 6:0

Anxiety 3.0

And with that G'nite

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

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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Queen, Cash and Cooke

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.

 In the circle of life

Its the wheel of fortune

Its the leap of faith

Its the band of hope

Till we find our place

On the path unwinding

In the circle, the circle of life

Here's hoping we both a good day.

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