On the Road with Dave and Paul

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

Letting Go

I'm sitting here with my cat next to me sleeping. She's sixteen years old, with arthritis and early dementia. She has let me know she's getting ready to go.

Real Life-"Send Me An Angel"

She spent all of today on the heating pad and could barely lift her head. Tonight she got up to eat some wet food, groomed herself and used her box. Then she fell back asleep. Her eyes have lost their sparkle. 

Howard Jones-"No One Is To Blame"

I've had my baby almost my entire life in the States. I got her my first year here and she has seen more changes in me than anybody. She's survived three apartments before my house, as well as two girlfriends before my wife. 

She saw me long before I started showing symptoms of Huntington's, and when I was a lot less stable in my personal life. She saw me stop drinking and finish my education. 

A twist on the Double Feature:

Today I'll be playing the same song by
both songwriters.

First up Terry Hall with Fun Boy Three

with the 1982 hit song in the UK where it went to number 7

Fun Boy Three-"Our Lips Are Sealed"

While they were in the studio, co-songwriter Jane Wiedlan and company

were having a hit over the pond in the US. 

All the way to number 15 it was:

The Go Gos-"Our Lips Are Sealed"

This is one song that always takes me back to a softer, easier time. When I was a young boy and had a carefree life, no real responsibilities and both of my parents were there to support me. A time when I hadn't heard of Huntington's Disease and life seemed like it would go on forever.

Falco-"Rock Me Amadeus (Symphonic)

Does this man have a stage presence or what?

I never knew before tonight. 

The mix of electronics and the orchestra is amazing.

This is another song I associate with carefree times. I went to the club and this was always playing, It was crazy to be dancing to the American version of a song in German by an Austrian but we sure rocked the house along with Falco and Amadeus. 

Eurythmics-"Love Is a Stranger"

I think a large part of my early grieving is that when my cat goes I will have lost the last tie to the period in my life when I was quite a bit irresponsible, when the world was at my feet. By letting go of her, I'm letting go of that part of my life to an extent.

Pet Shop Boys-"Opportunities(Let's Make A Lot of Money)"

There is video footage of them performing this song live. It is only the second live performance I'm aware of in which the keyboardist uses the Fairlight CMI. That was a very expensive piece so most bands did not tour with it. The only other place I'm aware of that I've seen it live was The Cars' performance at Live Aid.

This last song really encapsulates how I'm feeling these last few days. I'll leave you with Depeche Mode.

The Rumour

This is a mini-movie made to Depeche Mode's Blasphemous  Rumours

"I don't want to start any blasphemous Rumours

But I think God has a sick sense of humour

And when I die I expect to find him laughing"

. 

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.

Testing in Sheffield

First, don't bring up the Sheffield United loss to Charlton. We don't discuss that in my house.


Lately I have been up most nights, and getting a few hours of sleep in the early morning. I'm averaging five hours a day and am dragging all the time.

Depeche Mode-"What's Your Name?"

Being a fan of the Beach Boys and Jan & Dean 

I really love the way Vince Clarke

captured that carefree vibe and vocals.

I think this is due my lack of activity. There just isn't that much that interests me which I can do right now. For example, I generally go to the shopping centre several times a week. Its nearby and I can pick up a few items and bring them home. I also need to go out to buy my smokes. I purposely only purchase a pack at a time so that I am forced out of the house, if it were, by my nicotine addiction.

Human League-"Path of Least Resistance"

This title speaks for itself. 

Currently I can't enter stores. They use florescent lighting and those are known seizure triggers. Until I can safely reintroduce them to my life the stores are out. Until three days ago all back-lit devices were out. That included my telephone and all of the apps that were installed on it. It included both my original mp3 player and my Droid. All music had to be played via my laptop, which had been introduced to me the day of my last seizure. Two days ago I got back my Kindle. As you know that is the only device I can read with for any period of time if I want to understand what I'm reading. Oh, and yesterday I got the TV back.

U2--"Ultraviolet (Live in Sheffield)"

But the thing is this. even when I want to go shopping at ten in the evening and cant get my groceries there is still a lot I can do. So why am I focusing on the negative?

The reason I'm doing this is two fold. First, the negative is much more visible for its the most obvious right now. I WAS just denied a trip to the store. I was NOT just given a game of chess on the computer, knitting in front of the home theare setup I installed the speakers for last night, listening to the entire Human League and Depeche Mode catalogs or sitting at the computer blogging. So of course I'm going to be more focused  on the negative. The second reason is that since I have a tendency towards depression, I'm more focused om the negative. It just makes things mentally easier. 

Johnny Mercer & The Pied Pipers-"Ac-Cent-Tchu-Ate The Positive"

To this day when I think of Johnny Mercer my brain goes back to "Midnight in the Garden of Good and Evil", one of the best books I have ever read (quite enjoyed the motion picture as well). If I  could only recommend one book this would be near the top of that list. 

Yesterday I was listening to Radio Sheffield and they had an hour of country music on. So on that note today's double feature is going to be Johnny Cash.

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

This video always seems to get mixed

reviews. Its still one of my all time faves though.

Johnny Cash-"I Won't Back Down"

This is one of my Anti-HD theme songs. 

Guess what Huntington's Disease?

I won't back down.

Whenever I play Cash, its like Depeche Mode, almost impossible to pick just two. If you are one of the few not familar with Johnny Cash I highly recommend you put his name into YouTube and give yourself at least an hour of uninterrupted time to enjoy this American legend.

Waylon Jennings & Willie Nelson-"Mama's Don't Let Your Babies Grow Up To Be Cowboys"

This song brings back so many memories. It was released  when I was about 8

and played on the radio. My Mum used to sing it around our home.

I always think of her when I hear this song, even though for a period

of time, I lived always moving around. 

Human League-"Life On My Own"

Perhaps simply because my life is concentrated on what I can't do right now, this song is moving me more emotionally than it usually does. I'm also homesick. I really need to get to Sheffield. I find myself calling Peter, my brother, more than usual as well as looking at videos that feature the city.

Just a few days ago I was talking with @OccupySheffield and a friend about the interesting way Sheffield is a concrete jungle while still having historical buildings. Here is an example, featuring the old Salvation Army Citadel. 

Photo from @OccupySheffield

To the left you see a building in total contrast

to the Citadel. I love this area of the city.

That is one reason I love the Blind Youth video so much and feature it here probably more than any other. I should have known how homesick I was when I had a dream about the building featured in this video a few months ago.

If you remember at one point I was planning to visit but then life took a turn, with a marriage and planned ceremony. Soon thereafter my wife became pregnant. I still need to visit, and we are making tentative plans to fly in a week before our wedding ceremony and spend some time with my nieces and nephews. Then we'll all fly to California together.

Human League-"Interface"

More photos of Sheffield

Since I'm obviously in the mood to post multiple videos by various artists today here are the Pet Shop Boys, and as this plays I'll get back to discussing Sheffield.

Pet Shop Boys-"Always On My Mind"

If I had my way, I'd be on a flight next week. Its just not an option for me. My wife hasn't been feeling well, having a bout of morning sickness the last few days. Although I do seem to be drain on her I just can't see getting up and leaving. No matter what, my first obligation is to her right now. 

Pet Shop Boys-"West End Girls (Dance Mix)"

This is very different from the standard we are used 

to hearing, give it a try and see what you think.

While I was writing this I got a call from my shrink. It seems my test results are in. I'm more that a bit nervous as the last time I was tested it was so stressful. I haven't told Jane yet and don't know if I will until its time for me to leave. He's going to fit me in at 12:30 during his lunch. Its so hard waiting. I'm going to leave this open blog post open until I return. 

Speaking of testing, my sister has decided to go ahead and test. Once I find out the date she will be getting the results I'll be flying out to London for the day to be with her as I had promised. I don't want her to feel alone if she receives a positive result. I want her to have someone with her so she knows there is life after a positive result. If she has a negative one, I want to be there to take her out for a celebratory dinner.


[update=

Tears for Fears-"Shout"

I just returned from the doctors. My test results including the Southern Blot came back. It appears this lab also had my strain read too high, but unlike the first test they automatically sent it out for the blot. My CAG came back at 52. Its much higher than I had hoped but considering the age when I first began to show serious psychiatric symptoms it shouldn't come as much of a surprise. For those interested in the CAG age range, here is a chart.

CAG Repeat to Mean Onset Age

Thank you all for continuing on this journey with me. ~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.

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.

Good Mornin'

Its 4:30 a.m. and for the life of me I can't sleep. It isn't helping matters that my wife will be under a general anesthetic in less than three hours for her egg retrieval and I'll be having a local right after so they can needle me to get around the fact I had a vasectomy. 

Add  that I'm sleeping in the living room to keep my wife away from my cold  and you are hearing from a very cranky Paul.

The Human League-"Don't You Want Me" (unmix)

I made my own name for this odd song as the main song is the demo for DYWM. It was recorded before the girls joined. Then suddenly you hear Susan's voice in her verse only to cut back to Oakey's voice as it appeared in the single, with the girls in the chorus. I don't know what to make of this but a couple thoughts come to mind. First, thank god for Martin Rushent or we'd have Crap instead of Dare and second, this fan actually makes a reasonable remix.

Pet Shop Boys-"Always On My Mind"

That was a very 80's cover. I love Joss Ackland in the back seat. He plays the part so well. Then of course you have the strong Fairlight CMI in this song. I'm rare but I was never a big fan of the CMI compared to Synclavier. Here it does exactly what is needed.

Its OMD for the double feature this morning

Orchestral Manoeuvres In The Dark - "So in Love"

I'm in a serious OMD mood lately. Sometimes they just have this synthpop sound that also calms my nerves.

Orchestral Manoeuvres In The Dark-"Enola Gay"

I like the Fine Young Cannibals, and their cover of this Elvis song won't disappoint. He's not an easy act to follow either.


There was one copy on YouTube, and it wouldn't embed. I downloaded and the uploaded with permissions to embed so you can hear it. Enjoy!

Fine Young Cannibals-"Suspicious Mind"

I'm starting to get tired. I hope to get a few winks tonight. I just checked on Jane and she's sleeping like a baby. I'm sending this next song to her. In fact, I actually reprogrammed her alarm to play this in the morning. I want her to know I realize how special I feel about the PGD/IVF process.

Thompson Twins-"You Take Me Up"

Should I ask you to dance? (dance boy, dance boy)

If I promise romance would you come for the ride?

I know what it means to work hard on machines

Do you believe in love, one that lasts for all time?...

You take me up, (oh hoh)

You take me up to the higher ground

You take me up so high

Now I never want to come back down

I'm finally getting tired. Its time to put on my dancing shoes and dance my way out of here...

Dead or Alive-"Lover Come Back to Me (extended version)"

Before I forget the HDA (the UK equivalent to HDSA) is now on Twitter. They asked me to spread the word so I am. Please do the same. They are really good people that do a lot for both HD folks and their caregivers.

Good Morning to you!

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.

Pressure

The last few days since I've returned from my honeymoon I've found myself having to nearly pull teeth to get up here to blog. My thoughts and creativity have been nil. So why am I still up here?

The Beatles-"Tell Me Why"

On days when I don't blog, I find myself having more depression and anxiety than days when I take time to share my thoughts with you. On days when I don't,  my feet are more often than not dragging on the ground when I have to go out and run errands.

Today's Double Feature is Sparks

Sparks-"Tips For Teens"

Sparks-"La Dolce Vita"

Its hard to limit myself to two Sparks songs. Should I pick "Tips For Teens" or "When I'm With You" or "Now That I Own The BBC"

Pet Shop Boys-"West End Girls"

Sometimes you're better off dead, 

there's a gun in your hand

and its pointed at your head

You think you're mad, too unstable...

Too many Shadows, whispering voices

Faces on posters, too many choices

If, when, why, what

How much have you got?

In case you haven't noticed I really relate to this song by the Pet Shop Boys. The mood of it is such a low tempo song that when I feel depressed it matches my attitude. It captures my feelings a lot of the time when my Huntington's affects my mood. Often the first sign of my mood turning downward is a penchant for songs like this. When I catch myself humming I'll try and turn my mood around while I have that small window to control it.

Naked Eyes-"Promises, Promises"

My wife is home early. She wanted to listen to the HDView online radio show. Today it features Dr. LaVonne Goodman discussing among other things PGD/IVF. That is the process Jane and I are using to have an HD-Free child. 

Its nice to see her and not being yelled at. We have had the worst fights since she started the hormones. You combine those with my HD and the stress we are both feeling to "do it and do it right the first time" about her possible pregnancy and sometimes it feels like a bomb went off in our house.

Billy Joel-"Pressure"

During this period we haven't seen much of each other. Jane has been working late and whenever possible I've been going out for the evenings.  Neither of us like to fight so avoidance has been our coping strategy. That has made our time together today all that more precious.

On that note, I'm going to head off and rub her shoulders. Its been a long week for both of us.

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.

Wassiling

I stayed up to late last night and paid for being up down and around yesterday.

Frankie Goes to Hollywood-"The Power of Love"

If I had my way, I'd want this song being sung when Jane's father walks her down the aisle.

We scratched John Denver's Follow Me off the short list, as we're already getting tired of it.

UCLA MEDlies - "Life in a Northern Town"

Pet Shop Boys - "Opportunities"

I had a chance to talk to my brother yesterday as the wedding date is being finalized. The last week before the wedding is going to find Jane extremely busy and I am looking forward to spending some time with his little ones. They are so adorable. The call also gave me a chance to run the idea about the PGD-IVF by him.

He actually thinks I have potential to be a good father. I told Peter I had fooled him pretty good. 

I told him my concerns, which is basically I don't want Jane to have two kids to raise, the baby and me. Peter said that I need to realize its her decision to make, and I don't have a right to take that decision away from her to satisfy some inner guilt.(although I must say I try to do that!)

Dead or Alive - "Lover Come Back to Me"

Speaking of PGD-IVF, the first visit at the fertility clinic went well. We both are are on the normal side of the fertile scale so that's one less thing to worry about.

John Lennon - "Beautiful Boy"

Another thing Peter and I talked about was this blog. Like Jane, he has always respected my privacy. He asked if I would have a sample entry just so he would see what its like. So I'll be sending this entry to him. 

Today's double feature-Sparks

Sparks-"La Dolce Vita"

simply because  its not a real blog entry of mine if there isn't 

a Sparks song.

Not just any single Sparks song mind you, but

two from their Giorgio Moroder period.

Sparks-"Tryouts for the Human Race"

The Harry Simeone Chorale-"Do You Hear What I Hear"

Remember the copy of this cassette of this we owned when we were tots? 

I still think its the best Christmas Carol album ever released.

Sam Stokes - "Here We Come A-Wassailing (The American Edition)"

Peter, this explains the historical misunderstanding of 'Ameriglish' and why the American's think us English are so idiotic :)


Lyrics:

Here we come a-wassailing
Among the leaves so green.
Here we come a-wandering
So fair to be seen.
Love and joy come to you
And to you your wassail too.
And God bless you and send you
a happy new year.
And God send you a happy new year.

If you're not sure what a wassail is
you're not alone
You wonder why it's been so long
and you have never known.
It's because it's from England
it's not American.
Just like cricket, the Rolling Stones,
and figgy pudding, too.
It's just something that
British people do.

If you visit England,
I have this to say to you.
If you need a restroom,
then you'll have to find a loo.
Yes, it seems quite absurd,
they have many different words,
and they spell things like
favo(u)rite and colo(u)r with a "u"
what a funny European thing to do.

If you're in an English restaurant
and you're feeling kind of sick
because the person next to you
has ordered spotted dick.
There's no need to feel faint
No, it isn't what you think.
It's a pudding with raisins in it
nothing quite so foul.
Well, in England they say "willy" anyhow.

I hope you've learned enough
about English carols from this song.
That "don we now our gay apparel"
doesn't just sound wrong.
It does not insinuate
that the singers are not straight.
It's just more silly British talk
and I mean no offense
but leave speaking English to Americans.
Just leave speaking English to Americans.

Oh, didn't I say something earlier along the lines that this would be a typical blog post...well on the second half of this entry I lied :-D

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