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.

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Its the Crazy Life

I was awake all night (its currently 8:00 a.m.) It must be something in the air because both of us were up most of the night. As my wife was dressing she overheard my computer running a Netflix documentary. She looked at me like I was the man on the moon for watching a docu on My Lai until I fall asleep. You mean most people don't do this? Now she tells me.  It must be the librarian in me.

Of course, if I had these pajamas *click on pic to order*

I bet you I'd be sleeping like this: 

But heh, things could be worse. I ended up watching this music video

Depeche Mode-"Personal Jesus"

And this one

Depeche Mode-"Just Can't Get Enough"

Speaking of Depeche Mode when I used to throw a second hard drive in computers I'd always hum this song:

Depeche Mode-"Master and Servant"

When I wasn't listening to them I was reading this blog by the brilliant and thought provoking Stella:: (haha! I linked to The Beatles "Baby You're a Rich Man" so you can't accuse me of posting it too often). Seriously for a minute, her point about being gene-positive and seeing her father is something unique in Huntington's and something those unaffected by HD should read to get insight into our minds. Please take a minute to read it.

That blog and this video:

Living With HD-Introducing Carol, Stage 3

Put this song back in my head :( 

Elvis Costello-"Veronica"

My name is Paul Ware and I'm asking you to do something to work toward finding a cure to HD before its too late for Stella and me. Its already too late for Carol.

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.

Tainted Love

I'm really not feeling good, still. Jane was awake most of the day and I've been up and down all day. The codeine in my cough syrup has really upset my gut. I just stayed curled up to Jane, at least I feel safe. I don't need a lot tonight but one thing I need is to feel like nothing can get to me. Call me a wuss.

The Rainmakers-"Small Circles"

Human League - "Life on Your Own (Extended)"

I've been extremely anxious the last couple days. I wish it would pass. It sucks enough to be anxious but to have this underlying fear at the same time, not a lot of fun, let me tell you.

Elvis Costello-"Veronica"

Soft Cell - "Tainted Love (Poly Gore)"

I love Marc Almond's voice. It can lull me to sleep like no other. On that note I'm going to play Poly Gore's Remix one more time.

I'm really wiped out from the combination of anxiety and fighting this pneumonia, so sleepy time for me. Take care.

The back room at the library where I used to work. Once donated books are sorted we'd get first dibs on the remaining books on the shelves. 

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

Late night questions

Its four thirty in the morning, I can't sleep and thoughts are racing through me head at lightening speed. I'm trying to get them written out so hopefully they'll go away. I know sometimes it helps. I may or may not publish this, either way it won't be my main blog entry.


My mind won't settle. If its not tripping on my mum its tripping on a dear woman I know through facebook. She suffers from JHD (Juvenile Huntington's Disease) and its been very hard for her the last few days. Finally today she had to be taken to the hospital for her symptoms. Those that don't know JHD  causes different and more severe symptoms than HD. Luckily they were able to pull her out of the event but it took two hours and she had to be poked in a main vein to get her treated. 

Pain-Eleanor Rigby 

Warning-Goth/Metal

I saw a video today of a local Occupy Protest. In this video was a woman receiving a citation and another man. Both of them I know personally from outside the Occupy movement. It upset me to see them looking at possible arrest for doing nothing but meeting in the daylight in a public park. Sometimes I get so angry at this crap. These are as good of people as you'll ever see. So society craps on them for giving a $hit? This video brings all the news I've seen and heard about people abused by police to a new light, now that people I know are affected. Does that make me selfish or human?

Hair Chorus-"Walking In Space"

Third, I have my godson's gift packaged and ready to mail off to the UK today. Only problem is I don't want any contact with his mother after what she told Jane yesterday. Would you? Yet I don't want him to pay. This particular gift is very personal however, and I don't want to give Kris any ammunition for the future.

Paul McCartney-"Put It There"

I chose this song because of the nature of my relationship to Kris's son. I don't have to be his father to have that type of relationship. My long distance mobile phone bill is living proof of that. Yet he's worth every cent and I'd do it all again in a heartbeat. In fact, he's already on our wedding invite short list. Ah, screw her and the horse she rode in on, he's getting the gift.

Fourth, as I've mentioned before I'm having a crisis of faith, or should I say non-faith. I'm thinking one thing rationally but my heart is questioning. I actually prayed for someone today. To whom did I pray I couldn't tell you but I still did it. That's something I haven't done since a year after Mum's death. It was a surreal experience but on the other hand knowing I'm not alone would be a nice thing too.

George Harrison - "My Sweet Lord"

Finally, this whole suicide thing is sitting on me. When does it stop being selfish and start becoming fair game? Or does it ever? Is it selfish to want to avoid an extremely long, protracted illness in which your brain breaks down until you can't control your body and you either suffer a heart attack or die of pneumonia? Oh wait, there's a third door, you can refuse a feeding tube and starve to death. Yeah, what a choice. Of course, if you are lucky, your brain has now broken down so much you aren't aware of your impending death any longer. Your emaciated body will welcome it. If there is a God, does this send you to hell? If so, that isn't a very loving god is it? Where does my will fit into all of this? 

Elvis Costello-Veronica

Do I have a right to chose NOT to end up like Veronica?

A friend brought up a good point tonight. Doesn't Jane have the right to know what I'm thinking or does she have to wait until my fear and depression get the best of me? If I really, truly love her aren't I obligated to share these thoughts with her so also has time to process her feeling? I think my friend is right. So this opens up a whole can of worms, such as when and where? How much detail? If I don't tell her, does that mean I don't trust her? Isn't trust an integral part of a relationship? 

Paul McCartney-Figure of Eight

which is exactly where my thinking is taking me tonight.

Crap, I'm starting to cry again. Enough of this, I don't even know what I'm crying over. I can't even tell if its a good cry or if I'm crying over something sad. I just know the feeling of warm tears running down my face. 

Please, I'm so tired of all this......Someone make it stop.Well, that's not entirely true. I haven't really been the same since I received my test results. Lets be honest, no one who gets HD at my age expects a CAG repeat around 150. Its not supposed to happen and it scares the crap out of me. Also it seems like lately my symptoms are just running rampant, and I know my doctors are concerned the way they are so drastically changing and raising my medications. That scares me too.

Well, I'm going to try to leave you on a positive note. I found this at @GregMitch's daily blog. 

"Video from the #occupy bat signal crew. Inside look at this 

series of inspirational video projections on the side 

of the Verizon building on November 17th."

G'morning

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

An Experiment, Disneyland Ghosts, White Lipps and a real live pier!

I'm going to be starting an experiment this week. Actually, I will be starting now. My post last night from Trish's book gave me the idea. I'm going to start scoring my moods before and after listening to music. For example, my mood was a four when I first woke up. Less then ten minutes later it jumped to a six and a half simply by listening to some Bee Gees, even before I washed my face.

This probably doesn't seem much to you, but when I'm not even able to get enjoyment out of reading a book I know there's a problem. As you might remember, I used to work in a library. I love books. Outside of Trish's book, I've almost completely stopped reading. There is no pay-off. Outside of sport scores, I don't pick up a newspaper.

 Martin Rushent's  production of Pete Shelley's catchy tune "Homosapien"

Sh*t  She's white! 

I saw this incarnation of the Dapper Dans at Disneyland several times.

 It was worth the money simply to hear them sing in harmony.

A real talent rarely heard these days. My opinion - If you're local get an annual passport so you can leave Disney's California Adventure park when you get bored. If you aren't from the area, buy the multi-day pass and spend all the time in Disneyland Park Proper unless you like thrill rides. Stay at the nearby Super 8 and take the money saved on your hotel to spend an additional day at the park. I've never had problems with loud guests there and its about fifty dollar plus tax.

I read at the time this song was influenced by Primal Scream Therapy. All I know is when I want to shout in anger this video goes to the top of the pile:

along with this one...

influenced by Carl Jung's theory of "Synchronicity"

"Sometimes we'd just sit there and she wouldn't say anything and I wouldn't say anything and you could try to work out what was going on in her head but I think its something we don't understand. Not yet, anyway."

The wonderful thing in this video is its not afraid to tackle the issue of of family and patient head on. Its shown as a good thing, not a relationship to run away from. I had the chance to run this by Penny W's daughter @meekodev this morning. Her mother was a first Generation Huntington's Disease patient (genetic mutation) so they missed the diagnosis until the very end.  Penny, like her daughter, had worked in a library for many years (That's where I met Meeks in fact). Anyway I asked her if I was the only one seeing this video as a positive message and she actually agreed with me. She told me it captured their relationship the last few months when her Mum reverted to the delusion her good friend and roommate was her own dead mother, Meeks grandmother. 

In the end we both agreed this video should get wider release as an educational tool for families to show them how important these memories are to both the parents/grandparents/siblings as well as their survivors.

Now that my mind is on Penny, this was the song she sang to her daughter, her daughter played back to her on her last day and it was also sung at her Celebration of Life by an opera singer. She gave it a flavor that could be any relationship whether it be friend, child or lover. That, I'll never forget hearing.

One more for the road, mainly because although I am not a big fan of the song the story behind the video is hilarious and I need hilarious. 

This is The Human League in 1984 on Dick Clark's show here in the States. As you'll see he had the late Laura Branigan introduce THL. The reasons I find this video so utterly funny is

• Branigan mentions this is their first appearance on American Television . Notice that not a word was said about any past bookings. That's because they literally walked off the Soul Train set two years before. Their manager Bob Fast had said they didn't need or want dancers as they had "the girls" but he wasn't heeded. Since they always do live rehearsals they noticed the dancers on the floor immediately. 
• Jo Anne's Sunglasses (stage right)
• The wind is blowing their voice back in their faces. Oops. 
• They are dancing on a piece of wood. Don't ask me why I find its funny but I do.
• Phil's perm
• The clothes are too small. Its more obvious in one of the other songs where the lead singer is wearing a girl's one quarter length armed t-shirt. Also in the other video his sunglasses keep falling down. It was another post on YouTube asking to see this piece of "history" that alerted me to it in fact.

I swear, You can't get this from Central Casting. I just hope they didn't market this to the Clark show as California Hip.

I've been to this area on a number of occasions. I'd love to know the bill for Clark's security, and I'm not talking about protecting the band but their equipment if you get my drift.

Okay, waking up the other side of the room with my laughter so I really need to finish this up!

I'd say this experiment worked today, don't you? Mood = 7.5/10

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