Transitions

First, my wife Jane and I wanted to announce the birth of our child, David Daniel Ware. 

That's right, "Baby Ware" was born on 27 September 2012

John Denver-"Follow Me"

It was our good friends Stella and Jan over at HDTrainwreck who broke the news to the blogsphere. To two very good friends of ours, great scoop!

So in some of the worst taste I've ever exhibited here (especially considering how much Jane dislikes not only their music but local Martin L. Gore in particular):

Depeche Mode-"Black Celebration (Live at Wembley 1986)"

A few quick notes:

We had a friend who was homeless for two and a half months. She now is sharing a house with two other sober women. Who says good people are always punished? I'm so happy as her new home is much nicer than her old one where she was being emotionally abused.

In the meantime we saw the best of humanity come out. Jane took her out to have her hair done and helped spend some girl time with her. Another friend helped her keep her telephone service. Finally, a male acquaintance took her out to shop for some clothing to make her feel better about herself. Several other friends donated their living rooms, floors and any other space while she waited to get into the shelter. She even spent a couple days in our crowded house, not minding that every time one of us breathed we nearly kicked her we were so overflowed.

 Bananarama - "Na Na Hey Hey Kiss Him Goodbye"

So you may be wondering why I disappeared for so long. It has everything and nothing to do with Huntington's Disease. Like many people with HD, I am a creature of habit. Between the move, my sister's gene positive HD test result, David's birth, Dan's move into our home for a short period of time and the lack of internet for a couple of weeks, my habits were basically broken into five easy pieces. It is taking me all this time to start to get back into my old habits. Even now, it has taken me three days before I got enough written to even post my first video here.

Elton John-"Circle of Life"

This song is a shout out to Dahy's mother Corrine who has relocated from Belfast to help Jane in her last months of pregnancy. She was so happy to have had the chance to see her grandson DJ sing in his recital. It went off without a hitch in spite of his large cheering section. 

Its great to be back, now if I can keep in the habit of coming here on a regular basis I will be happy.

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

Announcements first. If you want to be notified when this page is updated just clicky on this Facebook Link and like the page. It will send the blog link right to your Facebook. 


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. 

HD Family

I'm off the Lyrica. That was making me so sick yesterday. I couldn't read or do much of anything. Today I feel a little edgy but that is to be expected. Originally the doctor was going to put me on another mood stabilizer but he called me late last night and asked me if I'd taken it yet. When I told him I was waiting until this morning he asked me to hold off on taking it for a while and we're going to see how I'm doing without it. I've expressed to him my frustration on being on so many drugs and he understands where I come from on that issue. So for now that drug is out of the picture as well. I wish all of them were out of the picture but I understand his concerns. What I want isn't always what's best for me, and I know that. I don't have to happy about it, but that is reality. So for the day I'm not going to be taking any stabilizer and we'll see if I start getting really jumpy. I feel a lot more "with it" than I did a week ago. 

Giorgio Moroder's Oscar Winning Soundtrack "Midnight Express"

I was looking at my Facebook this morning and a post by HappyPlace.com caught my eye. Seeing is believing and I laughed so hard I almost bust my gut. 

This has been an extremely exhausting month for me. Not only did I have the holidays but I started off in the hospital. When I came home I read that a fellow blogger had chosen to be tested for the Huntington's Gene. So was waiting for her results. Another fellow Facebooker was also waiting for her tests. I was waiting with anticipation for their results as much as I had waited for mine. Its as I once told a friend of mine on Facebook, when you are dealing with HD you already know so much about a person. I know you are going to have bad days,  and those bad days are going to suck threefold because its combined with the built in depression that comes with HD. So your bad days will seem twice as bad as they really are. I know that you came from a family of some dysfunction. When you have a disease that has been perceived as a mental illness society told us to hide it away. This naturally causes a dysfunction of the family unit. So I know that you are used to hiding things, just as I was. I also know that you come from a family where you have experienced death. Its not the unknown factor when you have lost a parent to HD. You've learned already how to grieve. I know all of this about you before our computer keyboards met.

Giorgio Moroder & Philip Oakey - "Electric Dreams"

Both of my friends are free of this nasty genetic illness. That's what I call it, and my brother always tries to correct me when I use it in his presence. He always tells me "I'm not truly free."  but he is. He is free to have as many kids as he wants and to save his life insurance for old age. He is free to go and do whatever he feels like as long as its reasonable.  I don't have these options. Never did, and never would.

Am I jealous of my brother and HD-negative friends? Of course, if I said I wasn't I'd be lying through my teeth. At the end of the day I count my blessings and I get ready for the next morning before I go to sleep. That's all I can do.  I've never lived in his shoes so I don't know what its like, just as he's never been in mine.

This is my only escape from it all

Watching a film or a face on a wall

Robert DeNiro's Waiting...Talking Italian

Bananarama

Off I go tonight on my totally artificial mood cloud.  Sometimes I wonder what emotions would exist if I stopped all medications. I'd probably be depressed but what else? I do know I get very agitated at times, in fact that's always the one thing that I recognize and will bring me in for mental help. That's what brought me in when I was drinking and what I felt when in the hospital when I finally decided I might trust the shrink. So I'd be an agitated depressed guy. There are enough of those around, I think I'll trust the medication for now.

Tina Turner-"Better Be Good to Me"

G'night all, and sleep well.

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

Walking on a High Wire

This is insane. How could I go from such a low anxiety level to such a high one the second I wake up is beyond me. 


Mood 5.0
Anxiety 7.5


My anxiety was so bad that when I woke up I wasn't able to get out from under the covers to the toilet. 


"A lot of people think that 'Shout' is just another song about primal scream theory, continuing the themes of the first album. It is actually more concerned with political protest. It came out in 1984 when a lot of people were still worried about the aftermath of The Cold War and it was basically an encouragement to protest."—Roland Orzabal

On that note I'm dedicating this song to Operation Wall Street.

High Wire by Men at Work

I swear this is my theme song lately.

Seriously, this song captures how I've been feeling lately. I constantly feel like I'm on this little wire and I have to be careful not to fall off.

Cruel Summer by Bananarama

The song's title says it all. Not been a good year. 

On the other hand, last night went very well. I had a long talk with J and it seems as if she is also in it for the long haul. I never thought this would happen to me and its a wonderful feeling. Scary but wonderful.

Take a Chance on Me - Abba

Its nice to have someone willing to take a chance on me.

I never thought I'd feel this way. I swore I never would.

Scary, but not in a bad way, in a way where I am in unknown 

territory, which isn't always a bad thing.

Mood 6.0

Anxiety 5.0

Ah the age of Disco and very early childhood memories.

On my way out the door just having fun here with my music.

A woman on one of the HD boards I belong suggested we post photos of our loved ones smiling. Although I don't have any photos to share here in California, it has lifted my mood to see everyone else's photos.

Mood 6.5

Anxiety 3.0 

I'm very tired this evening so going to sign off. 

Catch Paul Ware on Facebook or Twitter