Life with Huntington's Disease: Living Life on My Own

Insomnia

2013-02-10T02:44:00.000-08:00

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

2013-01-24T14:21:00.001-08:00

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

2012-10-18T15:08:00.001-07:00

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

2012-10-12T11:14:00.001-07:00

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.

2012-06-11T16:56:00.001-07:00

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

2012-05-25T12:35:00.001-07:00

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

2012-05-15T14:31:00.002-07:00

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

2012-05-02T15:29:00.001-07:00

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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Two Sleeping Children

2012-04-19T02:52:00.001-07:00

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.

Easter Monday

2012-04-09T15:35:00.002-07:00

I hope this blog post finds you well. This year for Easter I actually had plans. My children's First Confession was that morning, their Palm Sunday and our Easter.

Ted Neeley-"Gethsemane"

Their father had bought the outfits for them to wear during his last night at home. He hung up the clothes, gave each of his kids a kiss and went off to work. Somewhere in there he managed to drop a note into each of their pockets.

My wife was getting their clothes ready when she found the piece of paper in DJ's pocket. She opened it, read it, put it back and started sobbing. Its been that kind of weekend.

OMD-"If You Leave"

It was a nice day. It may sound sad, but its really not. Its been a time of healing. We are starting to enjoy each other's company and feel like a family. In fact, Easter afternoon we were invited to a friend's house for a BBQ. This is the first time all four of us were invited to do something together.

Somehow last night before this happened I was listening to music when this song came on. DJ fell in love right away, so to not include it would be a crime.

Paul McCartney-"Put It There"

After a while I sat near the stereo and played Music For the Masses followed by Songs of Faith and Devotion. Jane asked me several times to turn it off before the kids started singing Strangelove at school. I thought she was over reacting until this morning. I heard DJ sing "Common Nation" while getting dressed. Its a good thing I put those headphones on before he learned a worse set of words.

DJ has the most beautiful voice. This is the first time I ever heard it. He is the more quiet of the twins, so it was a shock for him to open up by singing as he did. Music runs in that family. I hope he chooses to do something with it.

Jane agrees with me, and we have decided to consider voice lessons. At the least it hopefully will give him an outlet to release his feelings. It couldn't hurt, could it? It might even help him crawl out of his shell a little.

Sasha on the other hand has been very willing to say what is on her mind. As I went in to read them a story last night she just looked up at me and told me she misses her Daddy. I told her that I did too, and we talked about him back and forth, sharing stories.

Depeche Mode (Devotional Tour)-"Condemnation"

Finally, my friend Stella is going to Brattleboro Retreat tomorrow for help with her depression. Stella was recently diagnosed with Huntington's Disease after her positive HD gene test last year. She is understandably nervous about her stay there and I will be keeping her in my thoughts. I'd appreciate it if you would do the same.

So Stella, this song is going out to you.

The Beatles-"Baby, You're a Rich Man"

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.

Double Trouble

2012-04-05T10:41:00.002-07:00

I can't believe I'm home already. Its been two days here,. and all is well. Actually it isn't. Yesterday I went to the mail box only to discover the Feds decided they didn't like my deferment on my student loans so they're deducting it from my disability check starting-this month! As if that wasn't bad enough, I get to the pharmacy and when I didn't pick up my meds last month, they shelved them. Then they forgot to put my refill back in the computer. That means I don't have my Haldol until I get in to see my doctor next week. Not good. This med controls my aggravation level, helps with my Lyrica to control my moods swings, and by its natural sedative effect controls my shaking with my Klonopin.

Roman Sidorov-"Sedative"

Dahy's twins are currently staying with us. They are rambunctious and filled with energy constantly, just like their father. They're wonderful children and its nice to have them around when they aren't in school. It also makes it harder for me to drink because one of my steadfast rules has always been that I don't drink around children. Even in my worst when I was climbing up freeways hoping a car would run over me, even then I wouldn't drink around my sister or any other children. I can't count the times I dropped my little sister off at the neighbours just so I could get loaded. Its a lot like the way Dahy would drop off the twins at my home when they were babies, now that I think about it.

The Cars-"Drive"

Right now I'm having a real Huntington's Disease moment. As I was proofreading the last paragraph I noticed that very single time I'd use a pronoun relating to myself, I had just left it out. Oops. That really needs to fixed dontcha think.

On a more cheerful note, because I really don't feel that down in the dumps even if it seems like it, Depeche Mode is back in the studio. Yeah! Now if we can just drag Human League back there as well I would be really happy.

The band had nearly fallen apart from problems on the Devotional tour (including Martin Gore's alcoholic seizures, Andy Fletcher's near nervous breakdown which forced him to leave the tour and David Gahan's heroin, cocaine and alcohol addiction) and this was their one chance to prove they could come back together.When MTV offered to feature them on The Singles Tour they knew they would have to prove they were still around. In the middle of this performance you can see on their faces that the music and audience began to click. It is one of those great times in musical history.

If you ever want to do a PSA on drugs, it should star this band. This was Depeche Mode's due or die moment.

Depeche Mode-"Enjoy The Music @Cologne (live)"

That song starting me thinking of other do or die moments. Here's another. It was what finally brought U2 fame and fortune. Live Aid:

U2-"Bad (live"

Live Aid

While this is playing I'll fill you in a bit on everything else that's been going on in my life. The Twins are getting comfortable here. We had a hard afternoon yesterday. The Twins had noticed my shaking that the Haldol usually smooths out. They wanted to know what was wrong. I explained it in very basic terms leaving myself open to questions. DJ hit me right off with "Are you going to die from this?" I think he asked this because his father died from being sick. I told DJ it would be a long time from now. Then he hit the ground in a temper tantrum while yelling that this is what his father had said. I didn't know 7 year old's even had temper tantrums but this one sure did. I got on the floor and rolled over to him, putting my head, face up, under his. He had to stop throwing the tantrum because he didn't want to hurt me. Then I simply asked him if I looked like his father, he had to admit I didn't. Then I tickled him until he smiled. That seemed to resolve the issue for now.

I do want to take a minute to thank everyone on my Facebook who took the time to answer my question about talking to the kids about HD yesterday. The information I got was extremely helpful when talking to them.

Here is a great single from Credo, The Human League's latest album.

The Human League-"Never Let Me Go"

Just a minute ago I went looking for my Facebook/Twitter code on some older posts. Among them I found the two pages I had written the first night I was sitting at Dahy's bedside over at the medical center. I published that post, and an hour later pulled both pages of it off. Its so sad and filled with my emotion that I'm still a bit shaken from reading it. Someday I'll publish it.

Here is one of his favourite songs.

Muddy Waters="Baby, Please Don't Go"

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.

Crawling Out of My Black Hole

2012-03-29T18:48:00.000-07:00

I hope this isn't too choppy. Its taken several days to write this as my internet time is extremely limited until I get the hell outta here Monday.

The Bangles-"Maniac Monday"

My wife has decided that we will take in David's children. So baby will make five in September. Our family is growing by leaps and bounds. Its enjoyable to watch from the sidelines but it will be interesting once I get home. So much for the single man who didn't want children who started this blog last year. Sasha and DJ are seven years old and so adorable. Yes, I said those kids are adorable. Do you rake me over the coals now or later?

Peter, Paul and Mary-"Puff, The Magic Dragon"

This morning my wife called my Huntington's Disease doctor all the way from North Ireland where she's visiting David's mother. She is having a enjoyable and needed trip. I'm so glad she went.

This is for my wife, who's currently in love with Night of The Proms.

Simple Minds - "Belfast Child"

After this call they put me on Klonapin. It's helping my hands from bouncing off the keyboard all the time. They took me off the Xanax when I came in. They took me off everything and then played around until they found drugs they think are working. They're doing something right because I don't have the crazy need to listen to the Depeche Mode's Black Celebration album all the time.

Yes, I was literally living through thoughts that dark. It should have been a warning sign to me. Instead of looking out out for myself with all these flags I just went about my daily business while I had this album on constantly.

Depeche Mode-"Black Celebration"

Is it any amazement that I drank after ten years of sobriety? I lost my best friend who died literally in my arms with his beautiful children at his feet, I didn't reach out to my wife since she was also grieving, causing us to begin to heal separately instead of doing this important act together. Then my depression kicked in, instead of treating I let myself fall into the black hole. I let myself stay there. I didn't do the things I know would help me get out of it. Instead of focusing on my recovery and sobriety I let myself focus on all the pitfalls in my life and my program. Once I start nitpicking my recovery message, that is a sign my thinking isn't quite right.

Human League-"(Keep Feeling) Fascination"

I am finally starting to feel better over all of this. I'm learning that I don't need to live constantly in a state of bereavement. Life does go on and its time for me to accept that and live it. David would not want me holed up in a room drinking and using. I know this because he didn't want that for himself.

There is a saying in the program that it is basically one alcoholic/addict helping another. When I lost David, I lost a major lifeline to my sobriety. Instead of doing what I should have, like raising my meeting attendance, I did the opposite and started isolating.

Eminem - "Not Afraid"

Well, its time to wrap up so I can have enough time to get this posted to my Facebook. Thank you for continuing to follow me on this journey known as my life.

My 15 Minutes of Fame

2012-03-22T16:09:00.003-07:00

Hi all. I have 15 minutes online today and I chose to spend it with you. Aren't you the lucky ones LOL ;) I just wanted everyone to know I'm alright. I'm coming home on the 2nd but you can write me at my email paulworre@nospam.gmail.com and I check that twice a day now.

Life is treating me well, and my plans are to be back on the 2nd of April. Thank you all for your thoughts and prayers.

Paul

My Crystal Staircase

2012-03-07T21:23:00.002-08:00

When working at the College library many moons ago, professors would oftten put a copy of required material on loan so that students' wouldn't have to buy a whole book to study at school or buy a book for a single piece of poetry.

This is how I came across Langston Hughes.

Mr. Hughes was an African American poet. That by itself meant he was not widely read. He was read by me however. The professor dropped off a piece titled "Mother to Son" and I read it on my break.

The poem is as follows:

Well, son, I'll tell you:
Life for me ain't been no crystal stair.
It's had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor --
Bare.
But all the time
I'se been a-climbin' on,
And reachin' landin's,
And turnin' corners,
And sometimes goin' in the dark
Where there ain't been no light.
So boy, don't you turn back.
Don't you set down on the steps
'Cause you finds it's kinder hard.
Don't you fall now --
For I'se still goin', honey,
I'se still climbin',
And life for me ain't been no crystal stair.

It was a nice poem, soft and well written so I made a xerox of it where I stored it until I had forgotten I even had the thing. Then one day Dahy Kelly, a fine Northern Irishman from Belfast, entered my life.

Dahy didn't need to know this poem, he had lived it most of his life. A child of Catholic parents, growing up as a member of the minority of the people who inhabited his country, Northern Ireland, Dahy spoke a different language (Gaelic), and considered himself a separate unrecognized citizen which even had its own paramilitary force (The Provos). By the time Dahy was about eight years old the first of the hunger strikers, Bobby Sands, had died. Over 100,000 people attended his funeral mass alone.

Political leaders on both sides of the conflict died. Military and political groups would change agendas and sometimes even names. In single years 500 people would be killed, the majority civilians.

When Jane first met Dahy, she could not believe what he told her. This simply doesn't happen in the western world. We are talking about a country that shared two borders with the Republic of Ireland and near to England, not a Middle Eastern country in a faraway land as Lebanon.

So one day he brought her a small simple pamphlet (Dahy and I may have been friends but we didn't share the same hobbies). This pamphlet he felt would explain to Jane exactly what life was like where he grew up. It was titled "They Kill Children, Don't They?" and it documented with photographic illustrations the results of the so-called peaceful rubber bullets the British soldiers would use to disperse small crowds of children and teenagers. You read me correctly, it had photos of dead kids, killed by the British Army in power.

The world lost Dahy at the end of last week from Acquired Immune Deficiency Syndrome, surrounded by his family. He was 38 years old, a loving husband and father of two beautiful 7 year old twins, one boy and one girl (they had their birthday the 3rd of March).

In lieu of flowers, Dahy asked for the money you would have spent on flowers, not a penny more or less, to be donated to a charity of your choice. If you do not have a specific charity in mind, please consider

MusicCares MAP Fund.
MusiCares
3030 Olympic Boulevard
Santa Monica, CA 90404.

In addition, a brief visit to see if you are eligible to give another the gift of life through stem cell transplantation was also requested. This free and painless test can be ordered at http://marrow.org/Join/Join_the_Registry.aspx

Finally, before you judge a fellow man, ask yourself if you have climbed up the crystal or wooden stairs? For someone once told me the wooden ones are made up of torn boards and have tacks. They aren't a place where you can sit down while you take a break from living your life.

Thank you from the Kellys, Paul and Jane Ware.

Paul is taking a short break

2012-03-07T12:29:00.001-08:00

Hello, This is Jane Ware. You may reach me at jane.s.rudd@nospamGMAIL.com

Don't forget to delete nospam though or I will not receive your message.

Paul recently returned to the hospital. He is NOT in a life threatening condition at this time. Simply put, too many things fell on his plate at the same time. As soon as he is feeling better he is eager to get his emotions out through his love of music. This may be several weeks but do not worry.

If his condition worsens, I will also update this blog.

After this post however, i will be signing in under my blog account so there should not be confusion.

Thoughts, prayers and positive light for him, our child, and me would of course be appreciated.

Jane R. Ware

P.S. His last post was here but not published. I will be publishing it in a few minutes as i know the subject matter was very important to him. I ask you to please read it. JW

Reach Out and Touch Faith

2012-03-02T08:26:00.000-08:00

Depression: clinical 4

situational 7

Anxiety: 6

Today there is going to more music than text. I am at the point where I'm at a loss for words. Hard to belief but yes, its true.

Depeche Mode-"Personal Jesus"

Although not the biggest fan of this song myself (I think underrated songs like "Clean" get overlooked), this version is very unique with strong American Blues roots. I wish I had found this before today.

Blood, Sweat & Tears-"And When I Die (Live)"

Late last evening we drove up to the Valley to stay with Dave's family for a few days. Although there are always snafus when being forced to settle an estate, this one has become extremely complicated in a short period of time. Items such as the car, which were willed to Ms. K in a community property estate, has an odd contract which is meant to prevent the original owner from reselling at a markup. Consequence is the manufacturer may have first right to purchase the car back since she was not on the deed (for liability reasons).

Red Hot Chili Peppers-"Under the Bridge"

U2-"Bad"

Depression: clinical 3

situational 8

Anxiety: 4

On the Road with Dave and Paul

2012-03-01T14:13:00.002-08:00

Joni Mitchell-"Circle Game"

"I've got AIDS, You've got Huntington's. That means one thing, buddy. ROAD TRIP!"

Yes, my friend Dave said it in those exact terms.

Heaven 17-"Geisha Boys and Temple Girls"

Our road trips had taken on almost epic status. Both of us had grown up without proper coping techniques for life. We had used anything and everything to escape. For that last years of our lives, that included rental cars and any highway that would have us (What, you think he'd take his beloved Lexis on a road trip, where would we fit our food?).

The Eagles-"Hotel California"

My head grew heavy and my sight grew dim

I had to stop for the night

There she stood in the doorway;

I heard the mission bell

And I was thinking to myself,

'this could be heaven or this could be hell'

Over the years we drove all the way down and then up the Pacific Coast Highway (aka Highway 1). On the way we stopped over to stay at the beautiful Hotel California, Palm Springs, simply because we already knew the one in Santa Barbara and wanted to compare notes over the infamous lyrics of the song of the same name. I wouldn't miss this hotel if you have never been. I've already booked a room for March 1st of next year.

Rent Motion Picture Soundtrack-"No Day Like Today"

Then there was the trip through the Texas Panhandle. This was probably our craziest road trip of all. Dave and I had never been to Texas, and we were undergoing a lot of personal stress. His twins had just been born, he had tested positive for AIDS, and my neurologist had made an early diagnosis of Huntington's Disease based on soft symptoms. In addition, I had just purchased a home with my girlfriend at the time. We needed to get away through a safe outlet, and we knew the best time was now before we both ended up escaping in a self-destructive way.

We were lucky. We had lovers who understood that as long as took care of our responsibilities it was a healthy outlet that would strengthen our home relationships more than if we ended up using and drinking.

So off to Texas we went, just because we could. We took an AA meeting guide and called Central Office in each town we reached. We managed to fit in a different meeting each day while on the road. It is very true when you read that the more you go, the more the meetings stay the same. The only difference was the accents of the people who welcomed us as visitors to their kind towns. We attended meetings on Indian Reservations, in the middle of the sticks, and even one where the majority of people were military members in uniform.

Counting Crows - "Big Yellow Taxi"

Of all the things that will stay with me on these road trips is the music. Dave worked in music studios as a career and he could explain why certain music sounded the way it did. Most importantly, he taught me that good music knows when to be quiet. Well, just like life.

Depeche Mode-"Master and Servant"

Take this song for example (it was one of several we discussed to death while our spouse's eyes glazed over). In the beginning there is this complete silence in between each of the three men's vocals. Only then does it even introduce musical instruments in the form of the emulator and then a synthesizer to add to the lead vocals. Dave thought this is where the multitude of remixes failed on this song. They took what made this song unique and turned it into just another generic remix by removing the build up.

Is it any wonder now that these road trips with their resulting discussions were just as mentally helpful to our wives as to us? You see, this was just the tip of the iceberg. We would then list and name half a dozen of the remixes and then debate the failures and possibilities of each of them.

Pet Shop Boys-"West End Girls (12" Dance Remix)"

This is another song that fails as a remix because the important buildup is destroyed as soon as the first note comes out of your stereo system. We would have our windows wide open and be singing to the PSB as naturally as most men sang to Eminem. No wonder we got so many strange looks in states like Alabama.

Speaking of road trips, we had just planned on driving up the coast to Washington State later in March while he was in between contracts. I think I'm going to pass and just watch something on the travel channel. Road trips aren't fun alone, and somehow I don't see Jane rocking it out to the Pet Shop Boy's "Always On My Mind"

Terry Jacks-"Season's in the Sun"

RIP My Friend

You have a safe trip now

Exhausted pg 2

2012-03-01T03:02:00.000-08:00

Harry Chapin-"Taxi"

"Baby's so high that shes skying,/

yeah she's flying afraid to fall/

I'll tell you why Baby's crying/cuz' she's dying arent we all".

So here we are still at the medical facility. Sitting and waiting, and waiting to sit. Things calm down just long enough where sleep comes and then someone in the room will shift and everyone wakes up. Once we were able to bring in a xerox of Dahy's driving licence to compare the signature against his advance directive things changed drastically. Unused machines were physically removed in some cases, for larger pieces they were simply moved. I have learned more about "no pressures" and "DNI's" than I ever thought possible.

I've learned how easy it is to have a chemically induced cardiac event and how truly painful they can be. I've learned some doctor's fear giving medications out on the slim chance the resulting cardiac condition will be aggravated, or that medications we take daily like decongestants raise the blood pressure. That last lesson I learned after he vomited twice after coughing so strongly, yet still refusing the morphine. The doctor finally called in a steroid so he could sleep. He felt the other medication options would increase his risk of a heart attack exponentially.

I've learned that for some people it is instinctual to avoid medications and when they no longer do is the time you worry. I learned that lesson tonight when for the first time Dahy didn't try to move away from the morphine injection when the evening nurse told him what was in it. That was the first time I cried.

The Cars-"Drive"

Tonight I've learned that even six year children will love unconditionally when they can't be loved back. I've learned there is such a thing as too much silence, and I need to keep my computer or telephone mp3 plugged in simply to get some sleep. Otherwise, every time Dahy misses a breathe I waken. And tonight he's been missing a lot of breathes and that's when they are strong enough to see or hear.

Depeche Mode-"Enjoy The Silence"

All I ever wanted, all I ever needed

Is here in my arms

Words are very unnecessary

They can only do harm

Words are spoken to be broken

Feelings are intense, words are trivial

Pleasures remain, so does their pain

Words are meaningless and forgettable

Billy Idol-"Eyes Without a Face"

Dahy taught me that male bonding isn't just those wild road trips like the one we made from Santa Barbara to Dallas because we wanted to be able to say we'd been to Texas (no other reason) but it was also the laughter of trying to prove, and succeeding, at making 12 step meetings everyday by calling ahead to Central Office just like they taught us to do. Its the promises we made to each other while in the car, that we thought we'd never have to cash in on, because we really weren't that sick. Male bonding is being there and fulfilling those promises because that's what real friends do.

On our road trips we'd listen to Billy Idol or whatever other crazy tune would come on the radio. We did it just because we could. For those trips we were two little boys on the road. We'd stopped growing at too early an age and this was our time to safely indulge that inner child. Our extent of planning these trips was picking out a destination, throwing clothes into a suitcase the night before, and then grabbing breakfast and lunch at the mini-mart. We were wild, and we were crazy. Actually we both still are.

Godly and Creme-"Cry"

This is the first time in my life that Jane hasn't been able to comfort me. She doesn't know what I'm going through because our relationship was so strange. I've been thinking of a photograph Dahy has on his Facebook, it was taken in January of this year, actually on the road when we drove partway on the PCH to judge the distance for a business trip. After a horrible holiday from his health he had a temporary feeding tube placed in so he could gain some weight back. After a lot of consultation his medical team agreed and he pumped it full of everything he could at the highest dose. So in this photo he's leaning over, his glasses hanging out of his T-Shirt neck and he looked healthier than he had in several years. and that infectious smile of his says there is nothing at all was wrong and we were having an inside joke. In fact, after our rental car broke, we were waiting for a new one but in the meantime he had snuck into the break room where he discovered a NiHi soda machine. He was in heaven.The entire time we were out spending precious time at the dealership he was as happy as a child who had just discovered pirates gold.

I don't have access to download the photo but I may ask his wife for one as it brings back so many memories to me. Off to listen to music very low and then to get that sleep. I can tell by his breathing appears to an have decreased to an shallow breathes with an uneven pattern most likely I'll to be aware of this after all.

Good Night

Exhaustion

2012-03-01T00:15:00.000-08:00

Duran Duran-"The Wild Boys"

Yesterday morning I had a visit to my doctor to remove one of two chest tubes from my pneumonia. By the time I was home I was so exhausted I couldn't walk to the mailbox. Yet an hour later my wife and I were in a rental car on our way to Culver City.

This was just the beginning on an extremely stressful day. It appears that sometime around the middle of the night Saturday, Dahy had been released from medical detox. It must have been amicable as he left with what appears to be a prorated check from the facility. From there, he managed to enter another town without his vehicle (which was still in the original parking place when Jane and I found it yesterday night.) He deposited the check, made a sizable withdrawal at a busy ATM location and from there disappeared.

U2 featuring Johnny Cash-"The Wanderer"

Sometime within the next 48 hours he was received and admitted as a John Doe into a major medical facility outside of Los Angeles. He was not able to speak not think independently. Since he had no identification on him, the hospital did not know he was a hospice patient and he was placed in the ICU. (Some of his identifying information including his wallet (minus the cash), watch and wedding ring were located by Jane inside the Lexus. Our thinking is that Dahy thought it was safer there than wherever he went himself.) Once admitted to the facility was suffering from a few separate medical conditions including the pneumonia he had transferred to me. Yes, it had attacked his ravaged immune system again.

Joni Mitchell-"Circle Games"

Then the next evening a nurse came in that knew him from a previous lifetime ago. Specifically she recognized his face and tattoos (yes, your mother warned you to be careful what you put on your body-it does follow you for the rest of you life). To be exact she remembered small facial scar and a tattoo that had among other choice letters included the full F word. She managed an early morning call at his former employer in the Los Angeles area who as it happened had purchased the company he currently was working for on a contractual basis. They called Ms. K and notified her of her husband's positive location. Once she had determined it was him, she called Jane and I. With the twins, it would not make sense for her to come down to the area to drive him home. Against my better judgement, I agreed we would pick up Dahy and the Lexis. Big mistake.

page 2

Grand Rounds

2012-02-28T21:53:00.000-08:00

First, I need make an apology. This entry was due to be published on the 28 February 2012. Due to technological and physical circumstances (I had finished publishing it on my phone driving down to Los Angeles) it was incorrectly saved as a draft. Another kind member alerted me to this fact and I now have the laptop to currently publish this.

Without much notice another terminally ill friend of mine had been hospitalized without knowledge. His wife and my family tracked him down and he is now with all of us as he finishes his life journey.

So off to Ground Rounds it is. I must admit I didn't expect to be reediting it with two six year old twins and my best friend all cramped into a bed, but whatever works, right?

There were so many good choices this week I'm going to start with this gem that came across my twitter.

The Kinks-"Lola"

Note, this song was chosen because it is actually a favourite of the my female friend described below.

Gender Identity is not a Disorder by Philip Hickey, Ph.D.

"The problem with gender identity disorder is that it makes no distinction between the child who expresses a yearning to be of the opposite gender simply because these kinds of utterances have been reinforced, and the child who has perhaps some genuine biological anomaly. As with all DSM “diagnoses,” if you emit the behavior, you’ve got the illness. And of course if you’ve got the illness, then you need to be treated!"

I chooce this piece because I do have a friend who had sexual reassignment surgery. He went from a very unhappy man to a very productive female member of society. Hickey does bring up important fact though about when it becomes a disorder for small children to begin hormone and other medical treatment. I highly recommend this thought provoking piece.

U2 ft. Johnny Cash -"The Wanderer"

This next article from Colorado Health Insurance Insider is very interesting on many fronts. This program promised many good things, but as the article mentions

"the Colorado health benefits exchange “…will not be connected to the long-troubled Colorado Benefits Management System, which handles food assistance and Medicaid.” I’m not sure what ” not connected” means here… whether the exchange will provide no enrollment material for people who qualify for public assistance, or whether some other program will stand in for the Colorado Benefits Management System in order to make the exchange interoperable (or integrated) with Colorado’s public benefits programs."

I know that this is a case I will be following closely and thank Louise and The Colorado Insurance Insider for bringing it to my attention.

Having had to personally experience as a client of both well run as well as broken down benefit services this may be the deal breaker in the Colorado program. In addition if it is another agency will it stand in the way making it harder for those in need to get the help and benefits by having to visit another agency?

On one final note, some of you may be aware February 29 is Rare Gene Disease Day. My disorder, Huntington's Disease is covered under this umbrella. If you would like to know more, at the top of my blog banner is a link that will share a bit more information.

Again, thank everyone at Grand Rounds for allowing me this opportunity as well as understanding during this stressful time in my life.

Depeche Mode-"Blasphemous Rumours (live)"

Up All Night

2012-02-12T17:04:00.000-08:00

I managed seven hours of sleep last night. I'm still yawning but feeling better than I did yesterday when I was running on only two hours of sleep and a migraine headache. The two days before I was running on six and two hours of sleep.

Lionel Richie-"All Night Long"

So I was on YouTube this morning when it recommended "I Need Your Loving" by the Human League. I made the mistake of clicking on the link. Two minutes into it reminded me why I have only played Crash once when it put it on my phone. I mean, it really doesn't get any worse than this. It was funny in a sick sort of way, like watching a car crash. Let me just say it was so bad I don't want to contaminate my blog.

Seriously, it reminded me of why the band pulled out of the sessions leaving the producers Jimmy Jam and Terry Lewis to finish the album without them. I mean, they had to finish it with session musicians because the band walked out.

Need I Say More?

The Human League-"Circus of Death"

Today I am able to fight my headache. I have knots on both sides of the base of my skull. The pain is radiating to the top of my head on both sides. That's why I haven't been online much of the last few days. I should have known I was sicker than I had thought when people on Twitter noticed my absence and were concerned.

Simple Minds-"All The Things She Said"

I don't know what caused this migraine but its an extremely vicious one that just keeps coming back. I finally talked to my psychiatrist about it last night and he called in some medication (I don't have a primary care doctor yet). It was after pharmacy hours so I can't pick it up until tomorrow as all the ones around here are closed on Sunday. At least I know an end is in sight.

Today's Double Feature, the late great Whitney Houston

Whitney Houston - "I Wanna Dance With Somebody"

I'm still in shock over Whitney Houston's death. Although not a big fan of her music, I always liked her voice. I share many memories of her with my sister who loved Whitney. I bought my sister the first two albums by Whitney when she was a kid.

Whitney Houston-"I Will Always Love You"

My sister had this 45. One day she came home and proceeded to play it over and over again. I finally snapped and tore it off the family stereo, proceeded to stomp on it and then snap it in both directions. I've never seen vinyl shards like that day. As a big brother I then felt bad so two days later I bought her the entire "The Bodyguard" soundtrack. All was forgiven and I no longer heard this one song over and over again (I had stopped counting at 20 the day of the record destruction)

Although I have a lot of musical respect for Whitney, I still much prefer Dolly Parton's original recording of this gem.

Dolly Parton-"I Will Always Love You"

"Mine is only one of the millions of hearts broken over the death of Whitney Houston, I will always be grateful and in awe of the wonderful performance she did on my song and I can truly say from the bottom of my heart, 'Whitney, I will always love you. You will be missed.'" Dolly Parton

I've been reading near constantly. Its the only activity that is helping pass through the pain, and it helps me to escape. When I'm able I have been playing Depeche Mode or Human League.

Depeche Mode-"Master and Servant"

My choices have been eclectic at best. My choices by Depeche have been very down the middle of their catalogue while my choices of Human League are the exact opposite. I've been playing music from the earliest and most recent CDs while ignoring their more famous albums altogether. Its rather odd.

The Human League-"Night People"

Credo is more trance than anything, and lately I've really been enjoying this style of music.

Paul Oakenfold-"Delerium Silence"

Oakenfold has always been my favourite trance artist & DJ.The man is brilliant. Also I don't feel so old when I listen to his music. He's six years older than me and rocks the house, so I see hope for me yet.

Berlin-"The Metro (extended)"

My ear today has been on bands that are fronted by women. From Berlin and The Motels to Bananarama and The Go-Gos. There were quite a few women in bands back then. Add in others in duos like Allison Moyet and Annie Lennox to really round out a good afternoon of musical choices.

The Motels-"Suddenly Last Summer"

This song by The Motels always brings back strong memories of my last carefree summer. It was released right before I went completely into SynthPop and was listening to a lot of American pop music. In fact, I can list all the British musicians I enjoyed on one hand.

U2-"The Refugee"

I did not get a true appreciation for U2 until I was an adult. Looking back, their early music was too heavy for me to understand. Same way with Depeche Mode. I liked their first album Speak and Spell, the rest of their music had to wait until I matured.Now I will travel half way across America to see either of these bands live. Like Peter Gabriel, they know how to rock the house down.

On that note, I'm going to close with a live version from each of these folks. Put your headphones on, turn the volume up high. These artists are going to take you to places you thought you'd never go to.

Enjoy.

Peter Gabriel from the This Way Up Tour 1987

"Lay Your Hands on Me"

Depeche Mode on Touring The Angel 2006

"Enjoy The Silence"

U2 on The Joshua Tree tour

"Trip Through Your Wires"

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.

Blasphemous Rumors

2012-02-08T07:19:00.000-08:00

Depression 7

Anxiety 3

Johnny Cash-"God's Gonna Cut You Down"

Most of yesterday is a blur. A migraine set in and the pain was controlling me. I was constantly drinking coffee, which is why at 6 am I am still awake.

Depeche Mode - "Blasphemous Rumors"

When I don't feel good there is something soothing in David Gahan's voice. Maybe it is just that it reminds my body of times when life was so much easier, I don't know, All I know is my body and mind react to it. This is by far my favourite song of Depeche Mode. How true I find the lyrics. Come on, God would have to be twisted to allow so many people get sick with diseases like Huntington's which kills by destroying one's sense of self.

I think that God has a sick sense of humour

And when I die I expect to find him laughing.

Yes I know its not the most popular view, but it is mine.

Hiem and Phil Oakey-"2AM"

I can't stop playing this great song. I blogged it last time, but here it is again. You can purchase the awesome 12" CD here. If you read this blog you probably know I don't generally listen to much current music but this song has been on repeat whenever my head let me listen to music.

Bryan Ferry-"Taxi"

Something about Bryan Ferry's voice is so calming when I'm having a day where my nerves are everywhere. I feel that type of day coming on. I'm so stressed and feel out of control. The coffee and HD are not always good partners. They play off each other if I drink too much, and I had over 8 coffee mugs full yesterday.

Blondie-"Heart of Glass"

If you are looking for a great stereo recording, this isn't it. Its mono and limited in range. This actually gives this version a feel of vinyl which is how this song was recorded to sound. I love Debra Harry, she also has a lift-the-spirits vibe to her.

Depression 5

Anxiety 3

Well, the sun is rising, its a brand new day. I'm going to go into with a positive attitude. Its important for me to do that when possible. Its one of the few things I have control over. Music is so very important to maintaining this attitude.

Juice Newton-"Angel in The Morning"

G'Morning from Sunny California

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.

Sad News on the Breast Cancer Front

2012-02-07T18:06:00.000-08:00

I am sad to report two well loved bloggers have passed away from breast cancer. @Whymommy and @CCChronicles left the world yesterday at too young an age. Something needs to be done to stop this monster.

Susan aka Whymommy

Rachel aka CCChronicles

De-Fund Kormen Foundation

Right Now

2012-02-06T02:49:00.000-08:00

I'm half asleep but there are several things that excited me tonight. The first is this new song by Sheffield native Hiem. I like to promote local electronic music so I was honoured when Hiem hit me up in IM to notify me their new song, which goes on sale today, features Philip Oakey. Here it is for your listening pleasure:

Hiem and Phil Oakey-"2AM"

Also today I was listening to a lot of early Human League and Heaven 17.

The Human League-"Black Hit of Space"

Heaven 17-"Geisha Boys and Temple Girls"

Speaking of Heaven 17, I found a rare clip of the Red Hot Chili Peppers performing a cover of one of their songs. So I twitted it with a link to Heaven 17 member Martyn Ware (formally of Human League) at the end so it would show up in his feed if he hadn't seen it.

Red Hot Chili Peppers-"We Don't Need No Facist Groove Thang"

I don't know if he'd seen it before but he must have liked it because he twitted the link with a thank you to me. I know its dumb, but I've been a fan of his since I was literally ten years old. To get the digital equivalent of an autograph is still cool, no matter how old I am.

February is Rare Disease Month. Huntington's Disease falls into that catagory so many people are wearing blue on their daily clothes to show support. My wife actually put on blue nail polish. Every time someone asks her about it, there is a chance for Jane to educate them about Huntington's, as well as put a face with the disease.

Joy Division-"Atmosphere"

As part of Grand Round's recognizing Rare Disease Month, I was asked to pick out the best in Medical Blogging on 28 February of this year. I'll be giving you more information the closer we get. This is very important because it will bring more recognition of HD to the general medical community.

Van Halen-"Right Now"

I went off on a friend's Facebook Wall this morning. I didn't realize how upset I am that there isn't much support for those of us who currently suffer from HD. I blasted the HDSA for lack of support. What is there right now that helps our quality of life? Nothing except older medicines that treat the symptoms. There is only one drug that is targeted toward HD patients and it only helps chorea symptoms. It does nothing to slow or stop the disease.

So many people have gone to the so-called "Centers of Excellence". Some get good treatment but there are so many like me who don't. We are treated by doctor's not familiar with HD, who only count the physical symptoms. There is nothing for us NOW. Its time to do something, and thank goodness there are people starting to do that, like We Have a Face

I think that is it, so I'm going back to the BBC to keep an ear on Syria.

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.

Rare Disease Blog Hop

2012-02-06T00:33:00.000-08:00