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.

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. 

Shake, Rattle and Roll

If you haven't had the chance to read my blog last time I played Annie, never fear. I mentioned over dinner a couple nights ago in passing that the vocals on Diva are gorgeous. Guess what was at my feet yesterday  morning? 

I consider this a bribe so that I wouldn't say a word while certain somebody's are out at the shopping centre on Black Friday.

At least we both agreed to shop local this year. 

Annie Lennox - "Why"

Pardon my typing here, but I'm shaking like a leaf. My fingers are actually bouncing off the keypad. This is the worst I remember feeling since I took ill. Not good.

 Bill Haley-"Shake, Rattle and Roll"

What can I say? I went high quality when I made this video on Wednesday.

Dead Milkmen-"Instant Club Hit"

Martin Rushent's Gem Love and Dancing, Recorded at Genetics. Remix of Human League's LP Dare.

The League Unlimited Orchestra - "Love & Dancing"

Human League-"Blind Youth"

The concrete jungle of Sheffield.

Sheffield's one and only ABC-"Poison Arrow"

Talking Heads-"Burning Down the House" on Letterman

Peter Gabriel - "Solsbury Hill"
Tony Levin, David Rhodes and Gabriel

I'm going to call it a day. See you tomorrow.

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

Lazy Saturday

After an exhausting week, I was going to take today off from blogging. After the book club last night, I went out with some friends to a restaurant and to celebrate a birthday. After good food, good company and a great cake I came home at a quarter to midnight wound up. I finally fell asleep at four, and slept through until three in the afternoon.

After waking up, taking my handful of "morning" medications and eating breakfast I was finally awake. Well, after all that and five cups of black coffee.

So I come on to check my Facebook and found great news that I simply had to blog about. You have read so many of my posts about Amy Ahearn, the missing woman last seen in Norwalk, California.

There was wonderful news this afternoon. Amy was found last night. She's currently being evaluated by a social worker.

I'd like to take this space to thank the family who on multiple occasions took Amy in, fed her, helped clothe her and even called law enforcement (who never came). I also want to thank LAPD for bringing Amy in. (Now LAPD, don't make me eat my words.)

I'm starting to work on an academic paper I never finished last round in college.  Its a sociological look at riots in the Isla Vista area outside of the local University. I've had my research information for years. Why finish it now? Its a bucket list item.

The riots culminated in multiple burnings of the Bank of America outside the university campus and a student's (Kevin Moran) death at the hands of law enforcement.  There are many parallels between that time and the current Occupy movement here. This includes both movements symbolic target of the BofA.

If, by chance I become as involved in this as I was the time I started my research you are going to be so sorry you ever heard of the " Bank of Amerika"

For those interested, I will soon finish importing my bookmarks into Google's online feature. When I do, they will be accessible to all.

As you listen to Governor Ronald Reagan's words, they probably sound familiar. They are the same arguments used by people in authority against the Occupy movement. Outsiders, troublemakers vs those who "helped law enforcement."

The once liberal Gov. Ronald Reagan.

And as for me, I've finished grocery shopping, stocking up on foods I can eat while on the ground surrounded around research papers.

Now I'm off for a romantic dinner at an Italian-American restaurant. I'll leave you what I was listening to earlier today. Here are two singles from The Human League's newest album, Credo.

"Night People"

"Never Let Me Go"

Oh, if you came here looking for a glimpse of life with Huntington's Disease, guess what? You just stumbled across it.

I hope you have a good evening now.

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

Paul Simon and....well a little Elton

Last night on Twitter I saw a friend post and they mentioned that Paul Simon is coming to town and would I be willing to go? The answer was along the lines of *duh* No brainer. Of course I want to go!

It doesn't get better than Tony Levin, Steve Gadd and the late Richard Tee

 as your backup band. 

Looking forward to hearing 

some of his new players on the 23rd.

The thing is, my friend doesn't have a car, so I drive in return for a ticket, but that's usually when she goes out of town. For example we were going to the Hollywood Bowl in early September but her mother died rather suddenly and unexpected. 

Long story short she asked if I'd be willing to go to see Paul Simon with her next Sunday and I said I would. So we are buying our tickets at the Santa Barbara County Bowl Monday. I'm really looking forward to this. As you know, I had just posted Graceland a few days ago here. I'm a big Simon fan. There are some musicians that transcend all boundaries. You can be a fan of Punk, Techno or Heavy Metal and still enjoy Paul Simon. He just has a way....

Look at Gadd's hair here, just too funny. 

As for my plans today, I'm going to the store to pick up supplies and then dropping them off at Operation Occupy Santa Barbara. Then I'll be checking up on my friend and trying to get her out of the house. 

She's been holing up a bit. I think I know why. She is starting to show symptoms of HD. Its not obvious and one of those things that you wouldn't notice if you haven't been there. She most likely isn't aware of this. All she's probably aware of is that her body is moving differently and people are going to notice. What she probably doesn't realize is that people don't notice because humans by nature are a selfish bunch. Outside of those we share a home with we people don't notice $h*t.

At the end of the day we don't realize that though, what we do think about is how we are perceived by others. Are we seen as drunk or incompetent in some way? Are we seen as different? Do they see us the same way as last week or are we different now? I chose the video "And She Was" because I know that is how I felt when I first began to show visible signs of HD. I kept thinking people were looking at me compared to what they had seen before. What I was compared to what I am.

The way David Byrne keeps saying "And she was" is how I felt, like I have broken record in my head screaming over and over "And he was". Is that why people were still friends with me, based on our past not our present friendships? It took several years before I finally felt comfortable to ask someone if that was why they still spent time with me. 

You might imagine my shock when they replied "No, its based on who you are NOW. Your personality hasn't changed, Paul." That was a hard one to swallow because it told me people still liked me for me, and that I was still a friend. It also meant that I needed to continue to keep my half of the friendship up.Finally it means that relationship may change when Huntington's grabs hold of my personality which is a When not an If.

The Friendship Song

In case you didn't guess the person I asked was J. She's one of the few people in my life that I can. and am, totally honest with. Most of the world I hide parts of myself from.  

Lately it seems like I'm hiding something from almost everybody. Its frustrating but I just don't want people to know stuff about me. I spend too much time worrying about what they think. 

No folks, the album cover doesn't move during the song.

I love the lyrics here. The chorus is so true:

"Everybody needs love and adventure

Everybody needs two or three friends."

Very basic and very true.

I love the message this song sends about technology.

This song always gets me thinking, but more so tonight as I finished rewatching Synth Brittiania. Many of those folks in the music world that embrace technology don't do so on the personal level. They aren't the musicians you'll see with Twitter accounts or Facebook pages. In the case of The Human League for example you find a group Twitter account that is rarely used, a URL that points to a Facebook page run by a fan and an unofficial page that gets information from the group. You don't see any member having a Twitter Account or any other internet access. In fact, lead singer and Synthesizer player Philip Oakey is on the record as being against these forms of tech. We are at the point were technology puts us everywhere, yet we are still nowhere. 

Does anyone really care if we just "checked in" to the nearest grocer or electronics shop? Chances are, no one cares. Yet FourSquare is based on the premise that people do care if you are at Starbucks. I just don't get it. Maybe its that I'm too old but I think its basically useless and at most its dangerous by telling people too much info on us. 

I either can laugh or cry. I'm choosing laughter on this one. This Namenda is really bringing me to the here and now. A new thing I've noticed today that isn't new at all is that I am in fact slightly "dancing", mainly to the left and then bringing myself back without realizing it. Its leaving a strange pattern on the sidewalk if I watch my feet. 

How I know this isn't new is that I had a fall six months ago.I had walked to the left and hit the sidewalk. I wasn't doing well at all that day and had kept walking into this little circle. Now looking back why I didn't realize it for what it was at the time is just idiotic. Instead, it seemed everyone thought I had gotten into a fight but one kind woman. When I'd stop by she shared a story of her tripping at Costco which had given her a similar scrape up.

Dancing Line- Please give 

11 minutes to educate yourself on

Huntington's Disease. 

I'm wiped out and I didn't do anything today. I did get to the corner store, that was it. Besides that all I did was hang out on Twitter and write this blog. I also watched some music videos. 

I don't have the energy to watch a full length movie. Can't imagine getting through it and understanding the plot.

I will be dropping the goods off to the protesters tomorrow, I got a list of what they need today on Twitter. If you are supporting the 99% here is what they needed, I'm sure it doesn't change that much by area.

• water 
• food 
• first aid 
• art supplies 
• headlamps 
• batteries 
• pens 
• paper. 

Earlier today I realized that I haven't been very depressed this last week. Something about this med change must have really worked because going in I was extremely bad off. My life's theme song was Elton John's Daniel. Nice bright and cheery, only not. 

Now I'm thinking about doing things. Hell, often I end up doing those things too! Somehow, I've managed to try and find things to do. When I write my blog, I find myself putting it off to do other things. Even days like today when I had to put everything on the back burner due to a major loss of energy I recognized it for what it was, loss of energy. I'm not happy about it but i'm accepting it and ready to move on. I'll watch some videos instead. My point is that something is catching my attention. For a while there, you wouldn't have been able to catch it if you stood on your head and sang the entire Sparks catalog backwards.


While listening to Elton John I found this clip. Some people know how to put on a show and some people just put on a show. Meet Elton at New York's Radio City Music Hall performing his hit Levon

Well, I'm going now to give my cat some love. G'nite

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