Late night questions

Its four thirty in the morning, I can't sleep and thoughts are racing through me head at lightening speed. I'm trying to get them written out so hopefully they'll go away. I know sometimes it helps. I may or may not publish this, either way it won't be my main blog entry.


My mind won't settle. If its not tripping on my mum its tripping on a dear woman I know through facebook. She suffers from JHD (Juvenile Huntington's Disease) and its been very hard for her the last few days. Finally today she had to be taken to the hospital for her symptoms. Those that don't know JHD  causes different and more severe symptoms than HD. Luckily they were able to pull her out of the event but it took two hours and she had to be poked in a main vein to get her treated. 

Pain-Eleanor Rigby 

Warning-Goth/Metal

I saw a video today of a local Occupy Protest. In this video was a woman receiving a citation and another man. Both of them I know personally from outside the Occupy movement. It upset me to see them looking at possible arrest for doing nothing but meeting in the daylight in a public park. Sometimes I get so angry at this crap. These are as good of people as you'll ever see. So society craps on them for giving a $hit? This video brings all the news I've seen and heard about people abused by police to a new light, now that people I know are affected. Does that make me selfish or human?

Hair Chorus-"Walking In Space"

Third, I have my godson's gift packaged and ready to mail off to the UK today. Only problem is I don't want any contact with his mother after what she told Jane yesterday. Would you? Yet I don't want him to pay. This particular gift is very personal however, and I don't want to give Kris any ammunition for the future.

Paul McCartney-"Put It There"

I chose this song because of the nature of my relationship to Kris's son. I don't have to be his father to have that type of relationship. My long distance mobile phone bill is living proof of that. Yet he's worth every cent and I'd do it all again in a heartbeat. In fact, he's already on our wedding invite short list. Ah, screw her and the horse she rode in on, he's getting the gift.

Fourth, as I've mentioned before I'm having a crisis of faith, or should I say non-faith. I'm thinking one thing rationally but my heart is questioning. I actually prayed for someone today. To whom did I pray I couldn't tell you but I still did it. That's something I haven't done since a year after Mum's death. It was a surreal experience but on the other hand knowing I'm not alone would be a nice thing too.

George Harrison - "My Sweet Lord"

Finally, this whole suicide thing is sitting on me. When does it stop being selfish and start becoming fair game? Or does it ever? Is it selfish to want to avoid an extremely long, protracted illness in which your brain breaks down until you can't control your body and you either suffer a heart attack or die of pneumonia? Oh wait, there's a third door, you can refuse a feeding tube and starve to death. Yeah, what a choice. Of course, if you are lucky, your brain has now broken down so much you aren't aware of your impending death any longer. Your emaciated body will welcome it. If there is a God, does this send you to hell? If so, that isn't a very loving god is it? Where does my will fit into all of this? 

Elvis Costello-Veronica

Do I have a right to chose NOT to end up like Veronica?

A friend brought up a good point tonight. Doesn't Jane have the right to know what I'm thinking or does she have to wait until my fear and depression get the best of me? If I really, truly love her aren't I obligated to share these thoughts with her so also has time to process her feeling? I think my friend is right. So this opens up a whole can of worms, such as when and where? How much detail? If I don't tell her, does that mean I don't trust her? Isn't trust an integral part of a relationship? 

Paul McCartney-Figure of Eight

which is exactly where my thinking is taking me tonight.

Crap, I'm starting to cry again. Enough of this, I don't even know what I'm crying over. I can't even tell if its a good cry or if I'm crying over something sad. I just know the feeling of warm tears running down my face. 

Please, I'm so tired of all this......Someone make it stop.Well, that's not entirely true. I haven't really been the same since I received my test results. Lets be honest, no one who gets HD at my age expects a CAG repeat around 150. Its not supposed to happen and it scares the crap out of me. Also it seems like lately my symptoms are just running rampant, and I know my doctors are concerned the way they are so drastically changing and raising my medications. That scares me too.

Well, I'm going to try to leave you on a positive note. I found this at @GregMitch's daily blog. 

"Video from the #occupy bat signal crew. Inside look at this 

series of inspirational video projections on the side 

of the Verizon building on November 17th."

G'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.

Bond, James Bond

Good to see you today. I took a break yesterday. Its important for me to keep everything in perspective, and if I'm tired and really don't want to blog, then I give myself the day off and have a good lazy Sunday.

Also, the dinner Saturday went really well. Good food and good company. We both needed it. Sometimes its just important to get away from everything. This weekend was a wonderful quiet two days away from all the stresses in both of our lives. I say two because I convinced her to take a four day weekend.

Tommy James and The Shondells-"I Think We're Alone Now"

It turns out that J is having a terrible time at work. The person who is between her and her boss is being a complete ass.

I knew things were bad, but I didn't know how bad.

She's in middle management, and with her employer for longer than I've known her. This is making the whole thing that more stressful. She's been there for years, and the benefit package is hard to beat.

The Carpenters-"Rainy Days and Mondays"

This is one of those Mondays where I had to drag myself out of bed. It took five cups of coffee just to keep me from yawning.

Our double feature today-The brilliant all women's group, The Bangles

Maniac Monday

This song brings back many good memories. When I was working, I would actually put this song on my turntable to wake me up as I'd be getting dressed and downing my breakfast. 

Oh Whey Oh

"Walk Like an Egyptian"

On to new and better things. Yesterday, after a hiatus away, I logged into the James Bond forum where I post. Imagine my wonderful shock to discover that they are now filming "Skyfall", the next film in the decades old series. 

One of the best Opening Title sequences. The visuals went so well with the song.

Paul McCartney & Wings-"Live and Let Die"

I feel like a little boy on Christmas Morning. I love James Bond films that much. I seen them all multiple times, including the dreaded Bronson era (GoldenEye was the only good film, no fault of Pierce.)

Tina Turner sings Bono's "GoldenEye"

I'm just getting shivers of excitement just watching this opening sequence. Now that I'm  home from the bank and store I'm watching the film again. Its a nice reward for all those chores.

While its on I'm cooking a surprise meal for J. I called her best friend who just happened to "find" a free movie coupon after I called her on the sly. While J's gone, I'm making a nice dinner for her to come home to. 

Its important to me that she knows I heard how hard work is and that I feel its time for me step up to the plate to make her life easier during all of this.

U2-"With or Without You"

I got a call from @Meekdev tonight. She let me know her mother, Penny, had an outstanding credit at the comic store. Penny was an avid Archie fan,  in fact it was directly because of her I discovered the "Gen X/Yuppie" adult oriented Archie comic title "Archie Got Married." Discovered and addicted to this title, I might add.

Anyway, Meeks called me today and told me to begin expecting Archie Got Married  in my mailbox for the next year. She said that's what her Mum would have wanted. Meekodev, by the way, is also an avid comic reader. She is a Marvel fan.

The reason I am naming Meeko by name is that I want to publicly thank her (I told her *make that threatened* I would).

I've always thought of  Penny when I read an Archie Gets Married. Now I have an additional reason to do so. Thanks my friend Meek for being in my life. We need more of you in this world.

This one is going out to you, my friend. I hope you find the Archie of your dreams instead of your Jughead ;-)

I owe you a ticket to Skyfall. Until then, I'll take that virgin martini shaken not stirred.

The Archies-"Sugar, Sugar"

G'nite folks!

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.

Madonna, Giorgio Moroder, mood swings and falling flat on my face in love

Mood 6.5

Good afternoon all. I'm having a really good day here. I had a chance to sleep in today and it felt good. When I woke up I feel like I do on Sundays. It was nice. I had my coffee and some late breakfast, a meal I've been neglecting lately. Then I headed off to the Shrink. More on that visit later. Still have a bit of anxiety but nothing like it was yesterday. 

I woke up to check my Facebook and saw this brilliant Huntington's Disease/Juvenile Huntington's Disease video by Brett Thomas. I'm passing it on and asking you to please  consider doing so yourself. Without educating the general public about Huntington's Disease people are misdiagnosed while their symptoms go untreated properly. This is unfair to those suffering from HD/JHD as well as those that care for them.

Huntinton's disease & JHD Awareness Video. from Brett Thomas on Vimeo.

Okay now on to some music. This first video you are either going to love or hate. Its a remix of Human League's Being Boiled. DJ Gcr has sampled a lot of other tracks in here. I dig it, but am interested in other people's visions when I listen to music.

Everybody Dance Now. 

I hope this entry doesn't seem fractured but I'm literally going back and forth between Old Grey Whistle Test on BBC2 and my videos for this blog. Bob Harris is interviewing Debbie Harry of Blondie.

I just love her hair in this performance. S-E-X-Y

She wouldn't have to worry about me pushing her aside.\

Errr... Back to the blog here. Sorry about that deviation boys and girls. She still warrant's today's double feature.

At this rate, this blog is  never going to be finished. Trevor Nelson's Soul Show is on now. My music here may be inspired by that. Here is the 80's classic by the Commodore's Nightshift

I rarely do dedications, but I would feel remiss if I didn't dedicate this 

to all the nurses at Hallamshire Hospital. Especially thinking of

those who worked the nightshift on the neuro floor when I 

was hospitalized. 

For those who don't know, I was the patient from hell. I didn't want to be on the neurological floor (who does), I had horrible memories from when  my mother was in the hospital, I knew what may be coming down the pipeline (brain degeneration until I die) and so I didn't sleep until utterly exhausted. I saw something more in every test ordered and how dare you make me take a sleeping tablet. How did I know that is really what is in that tablet? I remembered all the tablets they gave my mum. Thanks but I'll  pass. 

Imagine if I'd been admitted for something HD related.  I wasn't. I was there for a seizure from a high fever at age 14. They wanted to rule out a  few other conditions along with JHD which was done without genetic testing as it hadn't come into existence yet.

So night nurses, I thank you all. That was almost 30 years ago but I still remember my care there.

To explain it another way, this is what I thought was happening to me. I really saw the rest of my life ready to explode from within.

I'm not exaggerating. This is how I felt. 

Would you have wanted to be my night nurse?

I didn't think so.

Let's lighten up a bit here. I seriously do not want to go to sleep in a funk tonight,

Mood 4.0

The Seventies had some decent music.

Great actors in a great film. Its wonderful when your mood is in the tank...

Like mine is, right now.

DID I TELL YOU YET HOW MUCH I F'ING HATE THIS? I hate going from a good mood to a crappy one in the bat of an eye. IT SUCKS.

Thank you.

Now give me some Moroder and I might feel better.

Giorgio-you say? This is Kenny Loggins.

Actually Boys and Girls, Loggins was 3rd choice to sing this song

after Bryan Adams and Toto.

Although wildly associated with Disco music of the 1970's Moroder has won 3 Oscars 

• 1978 Best Original Score for Alan Parker's Midnight Express
• 1983 Best Song "Flashdance...What a Feeling"
• 1986 Best Song "Take My Breath Away" from Top Gun

Over the years he has collaborated with artists as diverse as Donna Summer (producing "I Feel Love"), Freddie Mercury (Soundtrack to "Metropolis") , Sparks (producing two albums No 1 in Heaven, and Terminal Jive), and Phillip Oakey ("Together in Electric Dreams" and Giorgio Moroder & Phillip Oakey)

Now that you know more than you ever wanted to about one of my musical heroes here is Berlin with a non-Moroder tune.

Berlin's Metro - extended version

Okay, this is seriously bad. I am coming back from a two hour anxiety attack that ended but the underlying depression is still here. 

Mood 5.0

Anxiety 8.0

Just took my night meds. After the first two nights, the Namenda isn't sedative at all. So that leaves me with having to sleep on Impramine and Lyrica. Those together aren't sedative enough. This is causing me to take Xanax to sleep. Xanax is a as-needed medication, I'm not supposed to take it to sleep. 

Which brings me to my visit with the shrink today. You know, when my day was still going pretty well? Well it went...well. I didn't tell him I'm taking the Xanax to sleep but did tell him I had stopped taking the Haldol after a couple days because it was making me lethargic and possibly making some other symptoms come out, specifically night kicking and during the day leg jerking.

 In fact, it was while I was on the Haldol that I fell down in soda aisle in the grocery store. Not too fun, let me tell you.

He wasn't happy at all about this but agreed to a trial of one week to see how continue to do without it. 

This interesting article was posted by a follower on Twitter Power From the People-Human Batteries.  

You know you're now an internet addict when...your girlfriend crawls into bed early with her book while you  finish up your blog. 

Mood 6.0 and raising

Anxiety 4.5 and lowering (I usually live in the 3s. I'm rarely anxiety free). I need to drop to three to sleep.

My understanding of this song is in burned in my heart.

This Tracy Chapman song resonates to me on so many different levels. It reminds me of leaving school after my O levels (now GCSE) to help my father take care of my Mum. I always wanted to run away from home and just keep driving. After her suicide that is exactly what I did, I took what little savings I had from my job, my life insurance policy and ran to America. I've never looked back. I visit home when I can, and I still vote but those are my only ties now with Britain. Oh, I also support the UK's Huntington's Disease Association financially with donations.

This is a sad song from a very sad movie.

Madonna's Live to Tell from At Close Range

If you haven't seen At Close Range run, don't walk, to the nearest video rental store. It is based on a true story and involves a troubled family including a father who is a burglar for a living. The premise sounds lame but it's actually a great character study. Christopher Walken, Sean Penn and Chris Penn all give staring performances.

On another level this song reminds me of how those of us with HD hide it. We hide it among ourselves and from the world. Often we deny it even when the symptoms are all there. In fact, some studies have shown that in fact denial can actually be a mental manifestation of the disease.

I love this song. It shows to me that Parker was able to get

a fabulous performance out of Madonna as Evita.

One thing I learned from this song is not to look down. If I do I'm only looking at the past and what good is that? I need to look toward the future and make my  own plans. that is one reason to this day I adore Electronica music. Its future moving my its nature.

Nope, I have no Irish Blood in me that I'm aware of 

however a friend of mine had a grandmother who sang

this song to her. Once it was played for me several times

it became a song with deep meaning for me.

For those of you who don't know the Spanish Lady is Death.

I've been thinking of death a lot lately. Most likely as I still have to make copies of my notarized living will and mail it off to the state so they have a copy. Its such a reminder to me that I won't be living a life of normal length, and that is fearful.

This album cut is just so moving. It reminds me that no matter

how low our opinions are of ourselves there are others

who care about us.

This is what true prayer should be, 

prayer for others and not ourselves.

This is one of the big issues I have with life in America

People are taught that they can do and be anything

yet you go through other parts of the country and its a

good dinner if you have beans and rice. 

Now I'm starting to relax. The backrub I'm getting as I type isn't hurting so I'm going to end with a couple love songs.

As you all know by now, this is the ultimate love song for the relationship

I have right now. I really feel that I won't be walking out the door.

In fact, I'm on the mortgage papers and own half of our house

I'll do it for you

J, You know I would

J, I love you.
I really do.
I hope I can spend the rest of my life with you
and tonight I'm finally going to tell  you that.

Mood 8

Anxiety 1.5

G'nite everyone.

Catch Paul Ware on Facebook or Twitter

People are People so...

Mood 5.0

Songs a bit heavy but so is my mood. Woke up with serious anxiety again today. Took some of my anxiety medication and waiting now for it to work. I know what is causing the anxiety so that is a good first step to dealing with it.

Here's the old classic from the Pet Shop Boys.

How their music has matured over the years.

Then again, so has London.

Someday I'd like to take a car and drive through the states. I was speaking recently with a man who had done just that. It sounded so fun. With my anxiety, if I got too upset I could just lock up inside the car (misuse of the verb to go, I know). It works, just ask Gary Numan.

 Here in my car  

I feel safest of all
I can lock all my doors
It's the only way to live
In cars

One of the reason's I'm so upset is I let a certain family member bully me around. To cut to the chase this person gets away with all sorts of crap because he's seen as "the healthy one." Without an HD parent everyone always knew he was "safe" to love. They knew if they got attached to him he wouldn't up and kick the bucket. So for years he gets away with all sorts of things. Since  he's my age I've always been a good target for him.

Today he posted something anti-Operation Wall Street on his Facebook with the reason of upsetting me (and wrote as much too.) . He knows I'm supporting the local Operation Occupy here to the point of bringing supplies to them. 

Well, I've given the bastard too much ink already. 

A very old music "video" 

Thank you Mary. Between my cup of coffee, Xanax and you my mood has jumped over 6 to a 6.5.

Lets try to move it bit higher before I leave to run errands, shall we?

I was listening to Iggy Pop's version of this song the other

day and it was radically different. 

For its day, this video was (and still is obviously)

extremely racist but this song is so f'cking good.

.

On another note, its really funny that I hadn't heard the Beatles Baby You're a Rich Man for many years, but after playing it a few days ago I now can't go a day without playing it. So here's an encore.

You keep all your money in a big brown bag

Inside a zoo.

What a thing to do.

Depeche Mode People are People

Very experimental for its time, this song uses an sampling synthesizer to obtain different sounds from the world around them. You can hear it clearly in the beginning of the song which is matched brilliantly with the video in my opinion. This was covered in Synth Britannia.

The message from this song is really important. Whether it be a person who is homosexual to a person of a different race or style of dress or with diseases like Huntington's or AIDS  "I can't understand what makes a man hate another man, help me understand".

Eternal by Technikal

Hard trance is right. You'll either love it or hate it but nothing in between.

I had to refrain from replying to a comment that stated: "why does all techno music keep the same beat throughout the entire song...." with this answer "Why does pop music keep the same beat through out the song? (See Baby You''re a Rich Man and People are People for examples")

This early afternoon I'm leaving you with Paul Simon and Me and Julio Down by the Schoolyard

This is probably the most fun video I've seen in a long time.

Its really hard to stay down when watching this one.

And Paul Simon brings my mood up to a 7! Alright, time to go run errands. See you tomorrow.

Catch Paul Ware on Facebook or Twitter

New Meds and My First Two Poems

Here it is, 9 in the morning. I'm hungry as can be yet every time I look down at my plate my stomach turns over. I'm not nauseated anymore, but it still does flips.


As you may know my doctors changed my meds up big time yesterday. I'm now on the anti-depressant Impramine, mood stabilizer Lyrica,  Haldol and Namenda. I also have a Xanax PRN which used to be a regular med.

Medicine Jar-Wings 

My typing sucks, so please forgive me, Its a good thing I touch type because  every time I see something move it seems to be in triple time.Letters like n and m look exactly the same to me. I have to use context to read. Its like when you're in hospital for surgery and they sedate you, it makes it hard to do many things, you feel, well, intoxicated,

Poison Arrow-(Sheffield band)ABC

The hardest part of this is that I can tell the medications are working to help some of my symptoms. That in consequence makes me understand what's going on in my body for the first time since I became ill. 

Mr. Bean Goes to the hospital.

I can't stay awake today. When I'm not literally typing I'm sleeping. I'm drifting in  and out of sleep, which is fairly normal when one starts these sedative medicines. However,'I'll wake up and find a single letter pressed over and over again.  Most often I wake up because my neck or head jumps. Also,  I can't get my letters right, for example I just spelled can't can'g. I have always done this but not as bad (typed bad). On the other hand I feel the medication working in so many ways. I wish it wasn't so I could stop taking it and live in a pretend world again.The anti-dementia one (Namenda.) is the worst. It pulls me to the here and now.

My eyes still aren't working together, they just become worse.. If you remember that that has been going on mildly for days now, nothing new but frustrating as hell for readers like me. Reading is out, typing is on its way too. If I have to type fairly quickly I screw up and of course anything with a a "sound=alike work" I'm screwed because I fall asleep while typing, in fact fell asleep 3 times while typing this small paragraph.; 

Its the one and only Sparke/Now That I Own The BBC

What I'm trying to say is that I'm scared. I've never felt like this before. I feel sick. I never felt that before. Now I can't pretend nothing is wrong.

===To my older brothrer===

For the first time in my life I feel like a man 

with Huntington's Disease.

 I'm not ready to feel that way.yet. 

I'm not old enough. 

I haven't lived enough 

I haven't been to Graceland 

I haven't been to the Vietnam Wall

I didn't do anything last night

but constantly go to sleep only

to be waken up 

from 

sharp head movements

and

legs kicking my body up and down

knowing these movements will eventually 

get worse, and worse 

until they 

will eventually kill me.

Just today,

I want to be safe

I want to sleep and know that I will 

wake up naturally 

being snuggly just like you 

in the blankets we shared

without a care in the world.

I'm not old enough.

I'm the little one.

"It feels like dying slow

letting go of life"

====To J====

You see, for the first time, 

since my mother was diagnosed

and they told her it was generic

and she ended her life, 

I am really scared.

For this first time 

I can feel what is wrong

with both my body.and my brain

How its moving

How its thinking

and how

my body is behaving

in directions it isn't supposed to.

How come you don't move that way?

Why don't you you think this way?

Since you don't

Why are you still here?