Insomnia

Lately my insomnia has come back with a passion. To sleep I need to take enough Xanax to knock myself out. Sleeping pills won't touch it, so after the twins go off to school for the day Dad goes back to sleep if he's  lucky. If not, he yawns, moves slowly through the day and deals with a semi-depression state from lack of energy. Not even enough get up and go to watch a movie. 

Other than that, life is good. I'm eagerly awaiting March 26th, when the new Depeche Mode album is do out. Its also the date of the much awaited David Bowie record. This will be interesting. 

Depeche Mode-"Heaven'

Word on the street is that this single is not representative of the album. This is a shame. I really like Heaven. It also captures the theme of the album title "Delta Machine".  

We'll see soon enough. This is the second cut as played back in October. 

Depeche Mode-"Angel"

As a fan of blues fusion from Elvis to Simon and now the SoulSavers this is specifically what I want to hear. When I hear the world Delta in an album title that is exactly what I expect in the music too.

Paul Simon-"Graceland"

Notice the first line.

Now back to my insomnia, a lot has been going on with some dear friends and I'm sure this has been an influence. Two friends of mine are second generation HD at-risk. Their father had the gene with out any prior     family history. Stella tested positive last year, and like me suffers from near debilitating mental symptoms including depression and agoraphobia. Her sister Jan just was tested last month. She tested negative for the HD gene. 

Another friend who also only learned a couple years ago that HD is in her family is also now feeling a need to get tested as her anxiety and depression are worsening, these were also her mother's first symptoms. She can barely leave her room,when medicated. I want to be there for her during the testing process but I just don't have it in me right now. She understands, I can't say I would.

Elton John-"Circle of Life"

A fourth friend is waiting for test results himself. He had a malignant tumor removed four years ago. It now has  spread. He is awaiting the results of his bone scan. If it has moved there, his plans are to enter hospice care. He's allergic to the primary medication to treat this cancer.

This song goes out to him, he knows why.

Elton John-"Pinball Wizard"

So hear I am listening to to BBC 6 Music weekend, getting ready to watch an action movie or documentary. Maybe the documentary will help me sleep? However if I can't sleep the action film will keep me entertained.

Action film followed by documentary it will be. 

Goodnite now,

Paul

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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A Sort of Homecoming

Over this Spring, my wife and our family are going home to Sheffield. It will be an experience as it always is. For as many years as I have lived in Santa Barbara, I'll always be a Sheffield boy at heart.

The Human League- "Blind Youth"

What you see in this video is literally where I grew up. From the concrete jungle mixed with buildings hundreds of years old to the almost cold feeling that conveys to the musical sounds that came from my childhood era Sheffield is very unique. In fact, this video literally makes me homesick for the better days of my life.

Some cities are simply more unique than others. I currently live in the American Rivera and it is as unique as well. If not such a contrast, I don't think I'd be here for so many years.

Godley and Creme-"Cry"

The main reason behind my trip is that my little sister tested positive for Huntington's Disease. Its time for big brother to step up to the plate.

Another reason for this trip on Spring Break is to take our oldest children to see where their father is laid to rest in North Ireland. Yes, after a year it is time for us to visit the Belfast Child.  

Simple Minds-"Belfast Child"

His mother will be coming along for the journey, having chosen to remain here in the States to help raise her grandchildren. This trip will be a sort of homecoming. For Corrine, for my children, and for me.

U2 - "A Sort of Homecoming"

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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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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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.

Been too long, Popping in with an update.

For two weeks my laptop is in the shop. The canister is used by the twins so I'm a bit uncomfortable using that for my personal writings. The problem is Blogger's mobile platform doesn't allow me to place embedded music videos so its going to be text for a while.

First, my friends Stella and Jan of HDTrainwreck are in my thoughts. Jan is having a bit of a crisis of Faith with all the destruction HD is causing around her. Both her sister and Father are suffering from this disease.

Jan went to the Las Vegas HD Convention this year on scholarship. Stella also applied but did not receive one.

I've been asked if I am going. A resounding NO!  Perhaps it was seeing my mother suffer before killing herself. Perhaps  it was seeing my grandfather succumb to the final stages of the disease,  but I know where I'm going.  Simply put I don't want to be around it anymore.

This isn't new to me, I considered going to a support group once. Just the idea gave me nightmares for a month. I think it's great for some people, I'm just not one of them.

Stella is still battling her depression. In terms of dealing with soft symptoms I feel like she's my soul sister. I was in the hospital for them myself last week. It stated innocuously enough. I was on Twitter and suddenly couldn't manage some basic functions. My brain was confusing the private message or DM function with the open communication mention function. Even after using the basic software almost daily for months my brain functioning simply forgot the difference. This caused my frustration and depression, all HD related, to skyrocket. Before I knew it, I was running around the block trying to get all these pent up feelings out. It didn't work.

So back to the hospital I went. Med adjustment time, again. 

There went our vacation to Belfast. Corrine Kelly, our twins paternal grandmother, flew out to spend time with her two grandchildren from her late son , Dahy "David" Kelly. A friend of ours Dan G., and former co -worker of Dahy's, came up to help Jane and me while I was at hospital.

The poor man was served with divorce papers his third day here. Jane and I have opened our house to Dan but unlike Dahy, he doesn't like to commute to Los Angeles daily for work. I can't say I blame him. So after his work break he drove down to start on a new project. We're hoping we can convince him to come up on the weekends. We can always use an extra pair of hands and it must be better than sleeping in a hotel. Besides, we have better company, weather, and beaches than LA. His kids have playmates in the twins. We even have live fruit trees in our backyard. Oranges, apples, figs, tangerines, and lemons among others. What's there not to like?

This is my life the last couple of weeks. Thanks for stopping by to read.

Just Try

Hello, long time no see. The kids are keeping me busy during the afternoon and evenings. During the day I spend it keeping the house clean, preparing dinner and generally taking care of myself. I need to find a happy medium for blog time as well. Everything else has seemed to find its niche.

Culture Club - "Time (Clock Of The Heart)"

DJ was invited to sing at his vocal coach's recital in September. We are all very excited for him. She admitted that its not her practice to have first year students perform but she thinks he'll shine. The Ware house is very excited for him. Especially his sister Sasha who has been bragging to anyone and everyone who will listen.


We were actually a bit concerned about how Sasha would deal with all this attention on her brother. So far she's handling it well. 

To think it all started with Uncle Paul playing this song:

Depeche Mode - "Condemnation"

We may have discovered her talent. She had expressed interest in ice skating but with the nearest rink an hour away we didn't know how interested she really was. It now appears her father would drop her off with her coach two days a week near Los Angeles while he worked in the afternoons. Then he'd watch her for an hour practicing. She had been skating in pairs with a seven year old boy. She never volunteered that Dahy had dropped her off at the rink until last week when I pushed her after she told me again she liked to skate. This time I asked her when she'd gone, and she replied "all the time". I asked a few more probing questions and it all came out. Finally when told her that I had no idea she told me since I was good friends with her Daddy she assumed I'd known. That's when I had the first Paul-is-not-a-mind-reader speech. 

Falco - "Rock Me Amadeus (Original Single Version)"

After some well placed phone calls, I was able to get through to her pairs coach. She had wondered why Sasha had stopped coming so suddenly, and why her mother never returned her calls after her missed lessons. I explained that Sasha had been with her father his last week, and soon after staying with us. Sasha's partner had already moved on to train with another girl. She's not working out well with him, and his mother said she'd much prefer to start him up with Sasha again. Now if we can only get her custom skates from her former home, that would be a blessing. If not, we'll take the money for her new skates from the estate her father left her. She had just finished breaking in her last pair, though, so we want to avoid that if possible. In the meantime I renewed her annual Figure Skating Club membership card so she will be able to test when she is ready.


Sasha's coach had expressed real sadness over Dahy's death. He had left a very favourable impression on her. Not just as a skating parent as a person in general. 

West Side Story - "America"

The move looks like it will probably be a "go". A woman Jane knows from work wants a smaller house and with three children we need a bigger one. The plan is for us to pay the difference with a loan from her parents and then tie our mortgage onto the new property. The appraisers came earlier this week, and Monday we have an appointment to have the bank go over our new property.

Billy Idol - "Mony Mony (Live)"

Also on the horizon early next month is our visit to Corrine, their grandmother, who lives in West Belfast. She is a bit frightened only having flown twice (the first time was to meet Jane and see Dahy) so she'll be flying back with us and staying for a few weeks in the summer.  I've already starting cleaning out my library to convert it back to a bedroom for her stay. On top of all this, Corrine has already offered to come out when Baby Ware is born to help raise the twins while Jane and I adjust to him/her. Talk about a blessing in disguise. If this June works out well, we may take her up on the offer. 

Soulsavers - "Just Try"

My current favourite Soulsavers song. I know that I've been pounding them down your throat but I haven't heard an album as good as "The Light the Dead See"  in several years. It also came out at a time in my life when I am also spending a lot of time looking at my own spirituality. The great thing about this album is that it isn't so much as in belief in God, but is simply about a search for "God, as you understand him." If you recognize that last phrase, you will probably get quite a bit from this album. I believe that's why I can't stop playing it, the music feels as if its about my journey as well.


To those of you who leave comments, they brighten my day. Thanks. 

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.

Introspection

This is another one of the "OMG I miss Dahy and I'm going to write all about it" so if that's not what floats your boat, don't say I didn't warn you.


Before I talk about my friend, first I want to discuss some sleep issues I have been having lately. For over two weeks I was averaging less than two hours a night. These two hours were so fragmented that cycle after cycle I was not entering REM sleep. A mind needs REM to properly sleep. A lack of it can actually cause psychosis. In my case, I nearly had a nervous breakdown. Last Monday I finally took so ill I ended up on the lawn slurring my words and my thoughts were completely fragmented. 

The Human League - "You've Lost That Loving Feeling"

While waiting for my psychiatrist to return my call, a friend recommended I call the man who last changed my meds at rehab. I did and he recognized my problem immediately. He put me on a low dose of the antidepressant impramine which I had been switched off when they put me on the Lexapro. We don't know why it took this long to effect me but the point is that less 48 hours later I had two full nights of uninterrupted sleep.



Ever since the ninth my wife and I have been in an extreme funk. It was also Mother's Day on Sunday here in America, and that is a reminder of my mum.Yes, I still miss her. 

The Stone Poneys feat. Linda Ronstadt - "Different Drum"

On the positive side, this was my wife's first Mother's Day since she became pregnant on the 5th of January as well as now being a mother to DJ and Sasha.  

This is probably my favourite women's empowerment song. When my wife had gone back to college I would play this every morning on the drive to her classes. Sunday I put my cellphone with this song playing  on the tray DJ and Sasha used to serve her breakfast in bed. She damn nearly cried.

Peter Gabriel & Youssou N'Dour -"Shaking the Tree"

When I turned into this type of introspective and melancholy mood I began to ponder about the possibility of an afterlife. The more I've thought about it lately, the more I find my mind opening to idea there might be something out there I'm not ready to accept. 

Soulsavers-"Presence of God"

Now with Dahy gone, I do hope one day to be reunited with two important people in my life. To see him and my mum both healthy and no longer having to fight their respective illnesses and demons, well that idea brings peace to my heart. I mean dammit no one should ever have to suffer like they did. Would it be the end of the world if they could actually experience what "should have been" instead of their life just ending when they died. Is that too much to ask for?

Joni Mitchell - "Circle Game"

Especially with the loss of Dahy I've begun to wonder about my lack in a belief in a god, much less all the anger I feel toward things like Huntington's Disease. Have I actually been blaming someone who may not even be responsible. Who ever said that a god is to blame for all the evil this world? 


If anyone ever got the bad end of the stick in life, it was Dahy. Yet he still managed to find some peace of mind in his church. So do his children. In fact, just recently Sasha told me she looks forward to going to church because its where she feels closest to her father. I find that bizarre just based on her age. Seven year old's can't grasp the ideas around most of the rituals and god talk yet, so I think there is something else going on. I do know that she thinks that's the one place her dad always found his centre (as she calls it "his calm").

Wilson Phillips - "Hold On"

I once heard a Catholic Priest speak on evil and the bad things that happen to us. He said that evil was brought on when Adam and Eve committed their big sin. The kicker is that this man went on to say that many people are uncomfortable with the thought of God not stepping in at that time. However, if he had then he would have taken away their free will. If he took that away, Adam and Eve wouldn't have been made in his image. God did have free will, after all and he made man and woman, not robot. 

STYX - "Mr. Roboto"

So combine what would have been David's 39th birthday followed four days later by Mother's Day and its been a bit sad of a week. Not depressed. Just introspective and melancholy. Obviously I've been doing a lot of thinking too. 

Nina Simone-"Don't Let Me Be Misunderstood"

This next song reminds me of Jane's recent trip to New Orleans. I have never heard this version before tonight. It also reminds me of Jan and Stella of HDTrainwreck. Their father, who has Huntington's Disease, has always been a big Animals fan.

The Animals-"House Of The Rising Sun (live)"

The home network went out last weekend, so we've been without internet access except for our telephones. Once I got that needed sleep yesterday I went straight to work on fixing it. Since my primary computer has been locked down for some odd bios password issue I don't have the ability to get to any of my data. I'm currently on an old laptop. At least the important parts like Word and the DVD player work on this old one.

Well, my eyes are falling down. So off I'm going to try and get a nap in. Right now, I want every inch of sleep I can get.

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.

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.

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.

Two Sleeping Children

Soft Cell-"Tainted Love / Where Did Our Love Go (poly gore)"

Its on warm nights that this song was pressed for. There is nothing quite like it. Poly Gore's remix brings out the best of Mark Almond's voice as well as the analog synthesizer. 

For the second night in a row the twins were out cold before ten o'clock. Thanks to technology I discovered their father's key to getting them tired enough to sleep. Namely the one day he was on Twitter he had mentioned playing with them and then reading them a story, which they woke him up long enough to complete. Jane and I had been running on fumes since they came home so we figured it wouldn't hurt to play  them to the point of exhaustion. It worked. We were tired, and they were  sleepy. Aces in the hole!

Bronski Beat & Marc Almond-"I Feel Love Melody"

My anxiety has been kicking my butt for the last two days. The good part is that most of the time its still manageable. Switching anti-depressants seemed to have helped. I'm not happy with a couple of the side effects but my doctor is in the middle of the lowering my Lexapro and bringing Impramine back up. With any luck that will reduce side effects from both of them while keeping my depression at bay.

This looks to be a very promising year in music. We started off with Hiem and Phil Oakey's 2AM in February.

Hiem and Phil Oakey-"2AM"

March saw the release of  VCMG (Vince Clark and Martin Gore)'s album Ssss

VCMG-"Single Blip"

May will find us with a new SoulSaver's album The Light The Dead See which is actually a joint project with the duo and Dave Gahan.

SoulSavors-"Longest Day"

Finally, hopefully early next year will see Depeche Mode album and tour. They just moved from Gore's studio here in Santa Barbara to New York City last month. 

All I ask is please, please get someone else besides Emily Lazar to master the CD. As much as I love Playing the Angel, the CD Master is atrocious. 

Compare that to last year when we had the Human League's Credo. As good as that album was, one album does not a musical year make.

The Human League-"Night People"

I know this blog entry is low on information but considering its 3 in the morning and all I wanted to do was crank a few tunes, I think it did the job nicely.

Good 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. 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.