Seconds

Today is just here. It started off with a bang when I fell asleep early only to wake up ten minutes later to Jane upset and trying to fix a flooding toilet. Once that was under control she was able to go to sleep, but I was awake for good. 

On the positive side, I haven't had a seizure in the last 24 hours. I'm hoping to make it 48. The lack of sleep my neurologist told me can be a danger sign, so when I finish up my blog I'll have something to eat and then relax with my book.

Heaven 17-"Let Me Go"

Watching this video of Let Me Go always shocks me at how young Martyn Ware and Ian Craig Marsh were. By this time they had already been kicked out of the band (Human League) they had formed by the singer Martyn had recruited (Philip Oakey). Oakey kept the name, and accruing debt, while Marsh and Ware gained the creative control they wanted. Interestingly, Heaven 17 gained through lead singer Glenn Gregory the basic line-up Ware had preferred for Human League a few years prior. At that time Gregory was not available so they went with runner up Oakey.

Their losses were our gains as we now have two bands to enjoy.

Heaven 17-"Geisha Boys And Temple Girls"

Geisha Boys is actually a cover of their own songs. Marsh and Ware produced an album of another band covering tunes they had written with Oakey. Geisha Boys is among that later group of songs. It was only after the failure of the Hot Gossip project that Heaven 17 recorded their own version.

Human League-"Fascination"

Between Geisha Boys and Fascination you can hear a natural progression such as it were. Neither band would want to admit that the break was what both groups of individuals needed to thrive. I was discussing the fact this song is only available on one of their multitude of Greatest Hits albums, "The Very Best of..." so if you are ever buying  one, this is the one you want.

Here in Seconds it could just as easily be Heaven 17. Their shared influences spoke through their music.

Human League-"Seconds"

Oh, by the way all is well in Sheffield. Heaven 17 and Human League have actually toured together on a shared billing. There are very little hard feelings.

Depeche Mode-"Enjoy The Silence"

Their are several versions of "Enjoy the Silence" to choose from. I had it down to two, the original with Dave Gahan in a robe and crown overlooking a cliff and this performance. I went with the World Trade Center for prosperity sake. In addition, this song speaks of the danger when we are too careful with our word choice, a theme that is played out in the media since 9/11. There was also a more personal meaning. This video was recorded in 1990. Judging by his physical build Gahan was in the throes of his heroin addiction. When this song came out I was just nearing my peak of alcohol abuse. There was many a night when it would be this album, a bottle of booze and me alone in the room. 

For those that aren't aware, people who are gene-positive for Huntington's Disease have a higher incidence of both substance and alcohol abuse.  I personally feel this is one of the issues that need to be brought out in the community and addressed. Until it does we are each but a  lone voice speaking about two diseases when we might only be dealing with one.

Depeche Mode-"Shake the Disease"

And I'll end today on a more positive note. Remember to treat those around you as you would like to be treated. We're all in this thing called the human race together.

Depeche Mode-"Master and Servent"

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.

Radio, Someone Still Loves You

Power Station-"Some Like It Hot"

Very interesting take combining live performance with sampling.

Still going with the this doesn't feel like I control my body this morning. It just sits wrong. Every time I try to lay down on my side it just inches away. If this keeps up I'll be off edge of the bed in a few minutes.

In the meantime, I'm reading an interesting article from The New York Times on the homes of Mexican drug lords. For those of us that are interested in Urban Exploring, this article and photographic essay is a must see. 

Duran Duran-"The Reflex"

And this, boys and girls,, is why John Taylor ended up in rehab.

U2-"Bad"

Live Aid, the day America finally realized 

what we already knew:

That U2 was to be a musical force to be reckoned with

One of the people on my Twitter feed is a giant fan of Big Country. Its because of her that I went out searching for a good live performance video to put here.

Here is the late Stuart Adamson fronting and playing some mean guitar in an early Rock and Roll concert in Russia.

I may joke around sometimes about substance abuse but make no mistakes. It kills. Stuart Adamson died as a result of an alcoholic suicide attempt in 2001. He left behind two children and a wife.

Big Country-"In a Big Country"

And of course, any time I can push Tony Hadley, lead singer of Spandau Ballet and patron of the HDA, you know I will. So here's Tony at Live Aid. 

Spandau Ballet-"Only When You Leave"

This next one still gives me chills to this day. I can feel them run all the way down my legs.This was one of those "Where were you" moments of my life. I can still see the floor under my knees in front of the television when watching this. The house stood still. My father, who had been putting up with my brother and my crap all day, shut up. Queen came  on, and Freddie started singing. My brother and I were suddenly quiet. Then my Father's voice came from behind us,  replying to Freddie singing "You made us think we could fly" with a quiet "Yes, you did"

Queen-"Bohemian Rhapsody/Radio Ga Ga"

Have a good night.

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.

Seize The Day

Today has been filed with ups and downs. I must say the ups are worth the downs.


I'm still drowsy and dopey from the phenobarbital but the side effects are wearing down. I only took  one nap today and stayed up later than I expected although I'm very tired.

Eurythmics-"Here Comes The Rain Again"

My wife says I've been quiet lately and I have been. For the first time in my life I don't feel like like a man who has Huntington's Disease, but instead feel like "that Huntington's Disease man.". Its one of those little word games we don't  really think about until it effects us. 

I truly feel like my body is betraying me. As I told my psychiatrist I don't feel like I own it anymore, but have it on lease. 

Talking Heads-"Wild Wild Life"

After spending some time on Twitter and enjoying the new box I purchased for the telly that lets us view streaming content such as Hulu Plus and Netflix, I put on Frankie Goes To Hollywood and jumped in the shower to get rid of the last of hospital smell. Somewhere between Welcome to The Pleasuredome

Frankie Goes To Hollywood-"Welcome to The Pleasuredome"

And Ferry Cross The Mersey

Frankie Goes To Hollywood-"Ferry Cross The Mesey"

I had a seizure. Right there in the shower. I must have fallen against one of the walls for Jane heard it and came in from the kitchen where she was cooking dinner.

Julian Lennon-"Too Late For Goodbyes"

I was okay, not even a bump on the head but all I remember of the hours beforehand was the music. It reminded me of the fact that music appreciation is the one thing a person with Huntington's Disease does not lose. 

The Human League-"Blind Youth"

I've had this song stuck in my head since yesterday evening. This reply to Johnny Rotten's remark that The League is just "Trendy Hippies" has been replaying in my mind to the point I found myself walking to the rhythm of it. Its a good think I didn't have the Peel Sessions version in my head or I'd be running everywhere. 

Another side effect of this medication is double vision, for example I see four hands in the screen capture above.  I am having to rely on my touch typing as I can't view to keyboard or the lines on the screen. This time of night everything is double. I even see two Jane's next to me. 

I'm trying to eat but its hard to aim the sandwich in my mouth. I wonder how blind people do it?

U2-"Stay Away (Faraway So Close)"

This has been my theme song lately. The closer Jane gets to me the more I find myself pushing her away. It hurts so badly. I know that part of it is I'm uncomfortable with her taking the care-taking role. Its hard  seeing her in two totally different positions. For example, when I had the seizure in the shower I w as half bathed. Now somehow I had to get the shampoo out of my hair and soap off the left side of my body. After letting her rinse me off (I was in no condition to do this) how can I then go and see her as my lover? Its a very hard transition, yet one at least now I'm able to make.

U2-"A Sort of Homecoming"

I know the time will come when something will cross that line and I will no longer be able to make the transition. That makes me sad. To do that will be to deny part of her personality. 

U2-"Some Days Are Better Than Others"

So despite all of this today I actually spent the several hours celebrating. Jane was notified today by the clinic that she her pregnancy test came back positive! Of course, we had to make all the obligatory telephone calls to relatives before we settled down to celebrate. 

Kool and The Gang-"Celebration"

Then it was Viagra time.

Robert Plant-"In The Mood"

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. 

Drowsy

I'm making this short but wanted to update my blog. As Jane mentioned in her entry I have been in hospital after having several Tonic-Clonic seizures  (formally known Grand Mal seizures). The doctors first put me on Phenobarbital which reduced them somewhat so they added Tegretol to the mix which  seemed to do the trick.

In the past I'd been put on the more current anti-seizure meds for my mood swings but I haven't been able to tolerate the side effects, which is why the docs tried pheno as their first choice .

It has made me so drowsy I'm several naps a day. In fact I'm writing this on my Android while laying on the sofa under a blanket. This is why I'm not able to insert music videos,the Blogger app doesn't have the that ability. Tomorrow I'll insert the videos afterward if needbe.

While at hospital they ran a number of tests to determine what is causing these seizures. I was impressed that they just didn't see HD and assume that was the cause. I had an EEG, a CT Scan ,2 MRI's , and a PET Scan.  The result is that I am one of the few Adult HD patients who do get these seizures as a symptom of this neurological disorder. It means I'll have to be on the meds for the rest of my life.

Its still strange having Jane around the house seven days a week. I feel safer having her around so much of the time but on the other hand I miss my time alone. For example now I need to share the TV during the day. I can't play Sparks and Human League loud while I do the dishes. Also, I'm concerned  about the real reason Jane is going to be home for three months. Is there something about my  health that I don't know? She's generally honest so I need to tell that voice in my head its not truth but HD paranoia.  Yeap, even I get the dreaded paranoia. The Haldol helps control the  symptoms.

My eyes eyes are falling down again. Its 02:15 so I think I deserve to sleep. if Jane wakes up and sees me watching telly she won't be happy to see I'm not taking care of myself my first day home.

My Name Is Jane

Yesterday I made the decision to take three months off of work. If you know me, you know that my job is part of who I am. My best friend jokes that my husband is books and I am numbers (I am an accountant). This is my first day off and I already miss my calculator. Still I wouldn't get up and go back right now if you paid me double time.

As I write this I'm sittng next to my husband's hospital bed. It isn't fun at all, but this is part of being married to a wonderful man who happens to have Huntington's Disease. I don't like this part of his life, but nobody  promised me a rose garden. 

I have accepted it just as I've accepted the fact his music of choice of Electronica and Trance.

Before my engagement my mother told me I should get out of this relationship before it became too serious. I told her it wasn't an option for me. I've never felt this way toward another human being in my life. For a year my mother didn't talk to me. Then she invited Paul to her home for Christmas. After that, she never brought the subject up again.

Until I met Paul, I couldn't put my finger on people who called their spouse their "better half." Now I understand why.

I wouldn't trade my husband for George Clooney, Oscar and all.

Yes, Paul has angry outbursts and often he's irritable.

Yes. I have to drive him around.

Yes, he'll eventually knock household items over from lack of body control.

Yes, I will have to bathe and shave him.

Yes, I will have to take care of his bodily needs some years ahead.

Yes, he will forget my name.

Yes, he will become immobile.

Yes, I will lose him far to early in our lives.

Yes, his chorea movements will pull his muscles until they hurt.

Yes, I wouldn't trade him for the world.

Yes, I love him more than life itself. When you fall in love with someone that has HD you truely understand what that saying means.  It is no longer just a cutsy Facebook status but a feeling deep in your heart.

It has to be.

The Three Letter Word

Frankie Goes To Hollywood-"Relax (New York Mix)"

Today the producer of the radio show HDView announced next week's topic. Its going to be about sexual matters. *gasp*

Some people saw the letters S-E-X in the sky here.

Like most other things controlled by the brain and nervous system, the sex lives of HD patients is no different. It is affected severely and it sucks. 

I'm glad someone is going to talk about this openly, its about time.

Human League-"Love Action"

Only speaking for myself I went from normal sexuality to hyper-sexuality and then lack of interest and  impotence. The kind of impotence that makes you jealous of the pool party dude.

Enzyte advert.

Then of course there is the whole HD emotional flat line problems and I'm screwed.

Eurythmics-"Love is A Stranger"

At times love has become a stranger in our house. My self worth goes down and my wife feels unloved.

The only work around I've found came from a book I read a while ago. The basic premise was there are a few things I CAN do to show my wife affection. Even when my emotions are fleeting, if I feel good I make a point to walk by my wife and show her affection. It doesn't have to be a lot, a little kiss, hug or even just playing with her hair. All these things tell Jane I find her attractive and have feelings toward her. 

"Kiss The Girl"

That's not much but both of us agree it sure beats the alternative.

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. 

Give It Away

Depression 6
Anxiety 4


I was half done with another entry when I was told last night of Kathleen Edward's death. This poor girl had been through so much in her little life. Now she's with her mother.

Blood Sweat & Tears-"And When I Die"

I was writing last night when my Facebook Messenger went off. I turned to the FB tab and a friend asked if I knew Kathleen. My foggy brain didn't recognize the name from those on my friends list. It was when she described her that I realized who had passed away an hour earlier.

Pardon my language but Jesus Christ I hate this disease. Nine year old girls shouldn't be losing the ability to go outside and play. 

Wilson Phillips-"Hold On"

After a few stressful days my wife and I went out to dinner and just have some nice quiet time together.  Then a friend called and asked if by chance we wanted some months old furniture. Jane and I had been in the middle of choosing couches and here was a beauty. Its cream coloured and fits our decor. We also inherited two smoked glass tables. So now we have 1500 dollars worth of furniture in our front room and I need to move half of our old stuff out.


Its funny sometimes how we get what we need when we aren't looking for it.

Red Hot Chili Peppers-"Give It Away"

Until the books are moved, our living room looks like a hazard area. A hazard area with nice furniture. I've taken a photograph to show you how it looks now. I'll be taking another once we have moved everything in place. Once everything in place I'll be posting before and after photos.

The rest of the night we're going to be moving two  bookcases. This is why I finally bought my Kindle. I simply ran out of room for my books.

The Human League-"You've Lost That Loving Feeling (Peel Sessions 1978)"

And what the hell was Philip Oakey thinking 

with that hair and a beard?

Its time for me to sign off now. I have two bookcases to move. See you tomorrow.


Depression 4
Anxiety 5

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. 

In My Life

Well, as you can see I am in the middle of a new redesign. I like it so far, and hope to add more to it as time goes on. Its a bit sleeker yet has more information on it. This is important as my blog is, and will be, read by people who are just learning about Huntington's Disease.

The Beatles-"In My Life"

Its important for me to tell others: having HD is not the end of your world. Yes, it makes you moody. Yes, it makes you less mobile. Yes, before you die you won't be able to talk. Yes, you can still enjoy the company of others, music and many other things. There is a whole space between diagnosis and end of life. Enjoy what you can. Accept what you can't.

The Beatles-"With a Little Help From My Friends"

Today my wife is sitting here at home with me. This morning she had two HD-free embryos implanted so she is off her feet. Hopefully one of them will take and we'll be proud parents. We'll know in ten days to two weeks. Until then, its a waiting game.Jane already asked me if it would be okay for her to pick up a small extra project at work so that she can keep busy after her normal workday. I told her I'd be fine at home  alone and very thankful she has something to pass the time.

The Beatles-"If I Fell"

I was looking through the statistics for my blog this morning. The great "The Rich and The Poor " guest entry by Stella of HDTrainwreck is the most read post. No surprise there, its one of the best written entries this blog has seen.

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

My home team Sheffield United Blades are playing the Glovers. I'm following a play by play on my Twitter Stream. I must thank the Blades for keeping this up. It must not be easy with all this pressure. Granted the Glover's are just out of the basement, but still we need the win. It would be interesting to see Sheffield United take on the Owls for a Sheffield only FA Cup. 

The Beatles-"Paperback Writer"

The Blades are 4-0 against Yeovil Town putting them in second on the table. We really needed this win, and it was a fun game.

Well, I'm getting sleepy here so I'll sign off.  

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. 

Changes

I made some drastic changes to my blog layout, and added some sections today. Let me know what you think in the comments section.


See you with the regularly scheduled blog post tomorrow.


A couple videos to hold you over. 


New Order covers Sparks live. The only time they performed this song.

New Order-"When I'm With You"

and our double feature is NO back when they were Joy Division

Joy Division-"Atmosphere"

and

Joy Division-"Love Will Tear Us Apart"

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. 

Frankie Goes Rock the House

Announcements first. If you want to be notified when this page is updated just clicky on this Facebook Link and like the page. It will send the blog link right to your Facebook. 


Now on to better things.



I woke up late this morning, well late for me. It was three o'clock in the afternoon.


Depression - 7
Anxiety-3




I generally need twelve hours of sleep to feel proper the next day. The problem comes in when I fall asleep late for whatever reason. This morning I was simply anxious as the day is long so I had to wait it out. Then my brain went OCD on me over a phone that doesn't like to charge and you can get the message.


The problem is that when I wake up I feel like my life is useless after spending that much time cut off from it.

Sheena Easton-"Telephone"

Both the insomnia and long sleep hours are symptoms of Huntington's. I can't sleep from the HD OCD, and when I do I need extra sleep from all the energy HD has taken during the day. 

I generally don't tell people I know about this because they think by waking up late I'm plain lazy. All their words just  make me feel worse over something I can't control. Its frustrating and no matter how many times I explain this to them they still tell me to get up early so I can sleep early the next evening.  I wish it was as easy as that. 

Double Feature time!

Bananarama-"Na Na Hey Hey (Kiss Him Goodbye)"

I generally don't like covers of classics, but this is

one where the voices match the music.

Its also just a fun video to watch.

Bananarama - "Robert De Niro's Waiting"

As I mentioned last time, this is a favourite

song of mine as it talks about having to

escape from problems in a healthy way:

watching movies on a wall.

So here I am at four in the afternoon drinking coffee to wake myself up.  I'm enjoying an unhealthy breakfast of Pepperidge Farm chocolate chip, toffee and almond cookies along with it. The coffee has been increasing my anxiety but I just can't start the day without it. Part of the reason is that I've been waking up with nasty headaches and the caffeine helps with that. 

Denis Leary on coffee

*NSFW* for language

Speaking of anxiety, my doctor put me on a new medication, Tranxene or Clorazepate. He has me take it before the anxiety starts, and I can say that by day two I haven't felt a need to take my Xanex PRN. 

The Alan Parsons Project-"Eye In The Sky"

This is a really cute homemade video.

Give it a watch.

Now its time to get out those Frankie shirts because I'm feeling much better and want to share with you SIX Frankie songs. A special shout-out goes to lead singer Holly Johnson who showed me that just because some doctor tells you that you may eventually have a horrible disease doesn't mean life should end.  He continues to show me through his actions just the opposite. 

For those that don't know, he has been HIV+ since 1991 and is still turning out art when he's not  tweeting on X-Factor. Thanks Holly, you will never know how much you have, and continue to, inspire me.

Frankie Goes to Hollywood-"Wish You Were Here"

Okay, this is a "turn those speakers up as high as they will go

so the bass almost blows them" song. 

Honestly, outside of The Human League's early years Frankie is the only band who I have never heard a bad song from. I really hate having to pick one or even two songs of theirs. They are the one band I haven't seen live that I wish I had. 

Now before you turn down the speakers, here's a very rare song by them. It is not on Welcome to The Pleasuredome but was a B-Side.

Frankie Goes To Hollywood-"Bang a Gong (Get It On)"

What, you haven't been to California? Well I'll tell you what. Let's take a quick virtual tour.

Frankie Goes To Hollywood-"San Jose"

The other interesting thing about Frankie is that no matter my age I can associate with their songs. They always have personal meaning to me. This is true of their cover versions as well as original works. Another example of this is their cover of Bruce Springsteen's Born to Run. As much as I love The Boss's version of the song, I don't feel like he is singing to me. He's singing about American youth. When Holly sings it, I have a flood of memories of my early adulthood up to today. 

I don't know how they do that, I just know that they did. If you only watch one video today, make it the next one. To quote a friend of mine, "Holy Mother of Fuck." It doesn't get better than this.
ETA: Apparently I'm not the only one to think this way. After reading my tweet on this video, @TheHollyJohnson replied to me "@PaulWorre oh yeah we killed it that night x"

Frankie Goes To Hollywood-"Relax" & "Born to Run" Live

I was talking with some friends after watching the entire Frankie Goes To Hollywood Europe A Go Go set, and telling them how I forgot the great antiwar songs the nuclear scare brought us. So before I leave today I'm going to spin two for you.

Frankie Goes to Hollywood-"Two Tribes (Extended Destructo Mix Video)"

Most people might not remember but it wasn't uncommon for a group to have one normal length video, and another for the extended release song. 

Culture Club-"The War Song (Extended Remix Video)

On that note I'm going to have to log it off. My Android decided some time last night to stop charging. I only hope some of the apps I paid for are recoverable off my SD Card. If someone knows how to move the ones in the phone over to the SD Card that can be done through the handheld let me know. I can't get the plug to be recognized unless I push it in deep and hold it. 

That being said, my mood is still a strong 8. You can't beat the power of music appreciation when you have Huntington's Disease, can you?

Night!

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.