Journey of Life

The heat wave has extended to today. In fact, its actually warmer today currently at 77 degrees. Yesterday both Jane and I were in horrible moods from it so today we are remaining inside in the coldest part of the house.

Talking Heads-"Burning Down Te House"

Its three in the morning and our house is filled with laughter. My wife found a really funny radio host who is going on about Michelle Duaggar. Despite the heat, there has been so much laughter in our house tonight. Jane took a nap, she gets tired easily right now, and then when we woke up its just a bunch of fun. First I watched the Charlie Sheen Roast simply to enjoy something where I can't think.

Here comes today's Double Feature-Thomas Dolby

Thomas Dolby-"Hyperactive(12")"

I'm really noticing a difference when I  don't take my Namenda. When I don't take it,  I can barely read. Someone asked a few days ago if I noticed a difference. At that time I said I didn't know. After missing a day I can say that I really do notice a positive change. 

Thomas Dolby-"She Blinded Me With Science"

Since I'm not able to read well and this heats puts me in such an awful mood I decided to watch the dumbest comedy I could find. That would be Charlie Sheen's Roast which is available on Netflix streaming. I surprised myself by laughing through most of it.

One thing about Huntington's is it can make your emotions basic and in your face. I was very irritated earlier today, and that often turns into anger. That's why I turned on that show. I can't make my mood, but once its there I can do things like watch that show to try and mute it or even switch it to a more positive mood.

Harry Nillsson-"Everybody's Talking (full movie version)"

As someone with HD, I now have mild chorea. It can become visible when I'm walking if I'm having a bad day. Then everybody is either looking at me or turning their eyes to avoid me. I hate that. 

My symptoms haven't been getting any worse but lately I've just been feeling like I'm a burden on others. Even things that are part of my normal life are now affected by HD. From having to shave with an electric razor to cutting up my food so I don't choke I really am feeling the reminder of my eventual death in nearly everything I do.

the best part of Star Wars:

John Williams-"Star Wars Theme"

When I get this introspective my wife reminds me that I'm still independent and that she loves me the way I am. Still at times I don't feel like I'm the same human being as the normal healthy people around e. I feel separate and different. 

Orchestral Manoeuvres In The Dark-"If You Leave"

Sometimes I feel so lousy lately that the only thing that makes me look to the future is our baby. My therapist says its not depression but introspection. She said that I'm finally facing my HD head on, and not hiding and pretending its better than it is. She said that alone can not only cause the introspection but acceptance. 

Simple Minds-"Alive and Kicking"

She talked about the steps of dealing with death. According to my therapist I'm going through these five steps, and by accepting my death I'm also accepting my illness. According to her I've been in denial for many years. I don't know if I did stay in denial all that time but I do know I'm learning a lot about myself any illness from the point of view inside my brain. This is an interesting theory, and I can see how she got me here. Its so weird to accepting what is wrong with me instead of pretending it doesn't exist and all is well.

Another one I played was "oh, I had X symptom but it really isn't that bad". Now I am working on just being able to admit it and go on. 

Sparks-"No.1 Song in Heaven"

Another point that I'm realizing is that by accepting my death I'm also accepting my life. Now I can see Jane's pregnancy is such a gift. Its something that I look forward to. Now I have the mental junk out of the way so I spend time thinking about my future. I can sit down and really enjoy something just for the sake of enjoying it. It doesn't have to have any other reason to be done, but my action is just there for the sake of it. If I'm listening to music maybe, just maybe, it can be for the simple fact I find enjoyment in it. There doesn't have to be a higher meaning. 

So here we go, I'm choosing this song because when I hear it I think of my life. From my birth until my death its the long way home-I'm here for the journey, and I am letting go to enjoy every minute. 

SuperTramp-"Long Way Home"

I'm going to get some sleep, and I hope we continue to cross paths on this journey.

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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.

Now that I own the BBC...

Sparks-"Now that I own the BBC"

If your only glimpse into my life is this blog, then you probably aren't aware that this year has been a lost worse compared to most.  I don't know what exactly is going on but I'm begining to think it just might be that right now my life feels a bit empty. I'm not working, I had the HD Genetic test, and of course my unexpected CAG repeats 

I saw my shrink Friday for two hours. I had called him Wednesday to see if he could fit me in this week. He heard my voice and said "my office, now, stat" The funny/odd part of it is that the "emergency" he heard in my voice was actually me trying not to tell him about the engagement until I saw him in the office.

John Lennon-"Woman"

So I get there, pour my cup of tea, open up People Magazine and promptly spill the hot Earl Grey all over my lap. No, I'm not kidding. 

You don't want to know how bad it hurt. Just trust me on this one.

Van Halen-"Jump"

That's Eddie on Keys

After two hours of talk, he upped my my antidepressant, mood stabilizer and Haldol. He's concerned that my mood isn't congruent. Gee, don't know what would give him that idea. He's also seriously concerned over some of the Huntington's Disease affects, specifically mild shaking, OCD, and depression/anxiety. I had forgotten last year the holiday stress was really awful too.

My mood is driving me crazy still. I'm so happy to be engaged but the next minute I feel lonely. What I'm really surprised about is the fact that I'm actually cheerful to have plans to be married. I never ever ever would have seen this in my future. I'm more likely to open a Chinese Fortune Cookie that says "This is iyour unlucky decade."

Last thought for the night: Jane and I spent a lot of time talking. Bringing children came up and I let her know that my mind might be open to the possibility. My only concern is bringing up a child who would grow up without a father and a fifty percent chance of a 150 CAG repeat. Then Jane's rational voice pops in and says "but its still only a 50% chance"

John Lennon-"Starting Over"

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

9 November 2011

I woke up this morning in a rather foul mood. Actually I still felt flatlined. As I began making my coffee an amazing thing  happened. I looked down and realized here I was sleeping in until noon, in my pajamas, having time to enjoy my coffee, with a full wallet for my grocery shopping later. What do I have to complain about? You know, I was right. I don't have $hit to complain about. So good morning. Now let's start this blog out on a better, my happy note. Literally as well as figuratively.

I really felt this homemade video of stills caught Bob Denver's energy.

"Sunshine On My Shoulders"

There were a couple things on my Facebook this morning that made me smile with my breakfast.

First was this video with the caption that says it all.

"This is the old generation passing the message on to the new one."

David Crosby and Graham Nash singing "Teach Your Children"

The Second was this Webpage of absurd signs. Click Through the image for the page.

This is a terrible thing to say but death has been on my mind a lot lately. I've tried to deny it but its not something that simply goes away. I am thinking of my future and the future of ones I love more than is necessary. When my mind drifts it drifts back to what happens, if anything, to me after I die. This has been going on pretty much since I got my test results followed by my hospitalization. They were really the nails in my mental coffin and my mind has been nearly OCD on the topic ever since. I want it to go away so I can think of prettier things in life, but unless I go out of my way to change my thinking my mind is stuck on the big D. 

Johnny Cash - God's Gonna Cut You Down

To complete this double feature:

"It was no longer my song anymore. It was a great honour." Trent Reznor of Nine Inch Nails on 

Johnny Cash covering his song "Hurt".

One of the most wonderful thing's Glenn Campbell has given this generation is a face and voice to Alzheimer's Disease. By speaking out so soon after his diagnosis he is showing the world that there is life after the horrid visit to the doctor in which his entire life shifted from living to surviving. 

This song brings up a funny memory. I was working one day in the shelves at the library and ran into some book that put this song in my mind. I was quietly humming it when a student came up to me and made a crack about me becoming "Americanized". What people often don't know is that for some oddball reason country music is fairly popular in the UK. This song was in the top 5 and I remember hearing it on the radio a lot when I was a small child. With its simplistic and clear lyrics it became a favourite for this 6 year old.

Glenn Campbell-"Rhinestone Cowboy"

Wow, that last song really just came out from behind my mental left field. I have no idea how I came up with it. I must say spending time visualizing this city boy singing Campbell in his little British accent did make me smile.

To see how strong an influence is, here is Human League's Empire State Human. It starts with Adrian Wright's choice of graphics: a photo of John Wayne with the words "Empire State Human" printed on it. This band is about as British anti-country/Citified as one can imagine. Yet there Wayne is, in all his American glory.

The Human League-"Empire State Human"

On top of having this OCD thing on death, I've been homesick. This week I've been looking at prices to fly home for a couple weeks via BA. Sure, I could save a few dollars by going through Expedia or  one of those discount airlines, but I don't trust buying tickets with all these fees for baggage versus carry-ons versus J's purse. It is really insane looking at all these fees. Two tickets, four pieces of baggage and two normal size carry-ons, thank you very much. Its already enough to have to check what little we want to bring on with us against the TSA website and having to go through the scanners. 

The current plan is for us to stay in London  for a week and a half. My brother, his wife and my nieces and nephews will be in the city for nearly a week. We could sandwich our days around his holiday, and it will save driving up to Sheffield. Since I'm no longer driving that would be a big mess avoided. J has never driven on the left side of the road and for obvious reason's doesn't want to have to start now. Neither of us want to take the National Express. 

On the other hand, I don't want to fly all the way and NOT go home at least for a day or two. It simply doesn't make sense and would likely leave me just as homesick. 

Yet still, I need to spend some time with the kids and my brother. I need some time with my family while I still can appreciate it, and as yesterday's blog shows those days are already farther apart than I'd like to admit.

The only other option at this point would be to fly over alone for the holiday. That would save me a lot of money and I'd be safe to travel at my leisure without anyone to report to. I want to drive, I drive. I want to take public transportation, I take it. I could meet up with my brother in the city and ride with him back to Sheffield. The only problem (outside of the fact I don't feel safe driving) is I'd be reliant on his good graces and I'm sure he'd be very sick of seeing me for over a week even if I was staying in a hotel.

Nah, that last one's not going to work for a number of reasons. Scratch it off the list. 

Earlier today I was making lunch and jamming to The Best of Sparks when a Moroder driven No. 1 Song in Heaven came on. (recurring theme-D-E-A-T-H) I'm jamming away and totally forgot J was coming home for lunch. Crap she scared the shit out of me! Imagine me making my little old sandwich screaming "Gabriel's  plays it, God how's he plays it!!" and then a meek "hello hon?" during the synth break. I'm too jumpy lately.  You should have seen the hole I left in our ceiling.

Sparks-"No 1 Song in Heaven"

R.I.P. Mama Cass Eliot-"Dream a Little Dream"

Now I'm just throwing some tunes onto the virtual turntable here.  Its nearly 5 O'Clock and I've accomplished less than nothing. Still looking at plane ticket prices, spent an hour with a friend watching her watching the announcement of the pregnancy of Michelle Duggar which I could give a crap about but my friend does care about. She claims its an interest based on her major of Psychology. I call her  full of bull$hit. 

Do I really care if that woman chooses to risk her her life for religious or financial gain? I only care insomuch as if we restrict her from having children on any grounds, it would make it easier to restrict others who do less wrong in the future.

So for baby and mother, I hope they both arrive safe and healthy and that's the end of that.

The Beatles-"Oh Darling!"

For the third time today I'm trying to get my brain into gear and head off to the grocery store. I just can't do it. My head starts thinking of one of a few re-occurring themes (the D word) and I'm back on my bed, feet behind me, awash in anxiety and curled up like a bow. 

Gary Numan-"Cars"

Here in my car

I feel safest of all...

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

I've literally kicked the bed when my anxiety started to cause the nerves in my ankles to tingle. Now I'm tired, spent time holding my pillow, tried to cry it out and I still can't get out of here! ENOUGH!!!!!!!

I'm tired. 

I'm tired of doing nothing and being drained of all energy. 

I'm tired of being an unproductive human being, 

of my level of activity being judged by some external rule.. 

I'm tired of the energy draw, 

of the tears, 

and of everything meaning nothing.

Yes,

You, over there.

Please, just take over 

And spend an hour being me.

A-ha-"The Sun Always Shines On TV"

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Preparing to go out for the evening is becoming an event

Still have Cat Stevens playing today. That man is a hell of a musician. Speaking of music getting stuck in my head, I dreamed about the video Blind Youth by THL. In this dream J and I were walking all around the building featured in the video. We took our time and toured the building as if we were considering to buy an apartment in it for our home. Really twisted dream.


I'm still sitting on this CAG count. It just doesn't make sense and I don't do well with illogical things. I'm generally one of a scientific mind, and this doesn't fit anywhere. I feel like its like a round peg I'm trying to fit into a square hole. I'm  pounding and pounding it but it isn't going in.

How the hell did I get such a large (JHD range) CAG count when I didn't become symptomatic until my mid 20's? It just doesn't work. It has to fit.


My right arm is still jumping. It is driving me crazy. Not just when weight bearing, so I'll be walking around the house with a jumping right arm. That's also my slightly stronger arm by default. Although I'm ambidextrous most things in this world were invented with the right-hander in mind. Now I'm reaching for the left handed versions of tools simply to make it easier to perform the tasks. This is the same shoulder that I was bitching about a couple weeks ago. I have a business meeting to attend to this evening and I'm already thinking of ways to hide this movement.

 Royksopp - "Sparks

Another Gem by Wall of Sound Recording

Sparks-"Something for the Girl Who has Everything"

Two cuts today from a BonaFide American Artist Billy Joel

Billy Joel-"Pressure"

Billy Joel-"Summer Highland Falls 1977 Live"

I want to curl up in a little ball and cry. I'm tired of living up to everyone else's expectations when I don't even know what my own are. 

I remember an interview with Michael J. Fox discussing the early years after his diagnosis of Parkinson's Disease. He spoke about his public and private faces, and how exhausting it was hiding his symptoms. I get that today. It freaking drains you. Emotionally and physically.

Another American Classic: Roy Orbison-"Crying"

Mary Travers(Nov 9, 1936 - Sept 16, 2009) and the Kingston Trio -"Where Have All The Flowers Gone"

Bob Dylan-"Times They are A'Changing"

A few more songs from the country that has welcomed me into its borders. If I hear one more idiot say America doesn't have a culture I'm going to hit him over the head with Blue Bayou.

Linda Ronstadt cover's Roy Orbison's Blue Bayou

Let's do a second Double Feature. Dusty!

Dusty Springfield- Son of a Preacher Man

And here she is "Spooky"

Let's end today on a positive note: 

The Animals-"Don't Let Me Be Misunderstood"

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