Testing in Sheffield

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


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

Depeche Mode-"What's Your Name?"

Being a fan of the Beach Boys and Jan & Dean 

I really love the way Vince Clarke

captured that carefree vibe and vocals.

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

Human League-"Path of Least Resistance"

This title speaks for itself. 

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

U2--"Ultraviolet (Live in Sheffield)"

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

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

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

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

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

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

This video always seems to get mixed

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

Johnny Cash-"I Won't Back Down"

This is one of my Anti-HD theme songs. 

Guess what Huntington's Disease?

I won't back down.

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

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

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

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

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

of time, I lived always moving around. 

Human League-"Life On My Own"

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

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

Photo from @OccupySheffield

To the left you see a building in total contrast

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

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

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

Human League-"Interface"

More photos of Sheffield

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

Pet Shop Boys-"Always On My Mind"

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

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

This is very different from the standard we are used 

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

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

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


[update=

Tears for Fears-"Shout"

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

CAG Repeat to Mean Onset Age

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

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Mum

The weather is raining, and it matches my mood. I'm really depressed. My mum has been on my mind today. So many fleeting memories of her, and its making me miss her so very much.


I remember moving up to Sheffield and all my Mum wanted in her house was a flower garden in the window. She told my father over and over that he could have the rest of the house but she wanted her window. For the life of me I could not understand her obsession with the window. Its only now as an adult that I understand she was already suffering from depression due to Huntington's Disease and the sunlight in this window helped make her feel better. 

Stone Ponys-"Different Drummer"

Through all of this, my older brother Peter complained he didn't want to move. He wanted to stay in Leicester, to finish his schooling. Oh how they fought. Then Mum began crying and would leave the room. She didn't want anyone to see her crying. I always thought her reactions were inappropriate to the fighting. It wasn't until several years later that I learned she knew this as well, which is why she would leave the room.

Johnny Cash & Linda Ronstadt - "I Never Will Marry"

I found out a few years later when she and I had fought. She ran from the room crying and me, being the insensitive boy that I was, I went running after her. That's also when I first heard on this Huntington's Disease. Until that fateful day her and my dad had hid this from us.

Murray Head-"One Night In Bangkok (Extended Mix)"

The intro on this is fantastic. That alone is worth

the price of admission.

She never used the words "Huntington's Disease" that day, she just referred to it as the disease she got from her father. I was such a teenager I thought she meant she got it from him like a person gets an STD. Boy did she have to set me straight with what she meant.

Play that again Sam

Vinylshakerz-"One Night in Bangkok"

"No No Paul" I can still hear her voice in my head. "Nothing like that. Its just something genetic. That means that my dad had it and passed it on to me."  I can still feel the hammer slam down when she said that. So many thoughts rushed through my head. Did that mean she would die of this, would I get it too since my mother had it, what about my brother?

Thompson Twins-"You Bring Me Up" Christmas 1984 TOTP

Yes, that is Holly Johnson of Frankie Goes to Hollywood

doing the introduction.

I didn't ask my mum those questions that fateful day in her bedroom. In fact, I never asked them of her. I went to the school library but they never heard of an emotional disease you get from your parents. I hadn't known my grandfather in many years, but I do remember his shaking and that he could barely talk. I asked about that and librarian gave me some books on Parkinson's Disease. I looked at them briefly, and told her that this wasn't what my Mum has, she was crying all the time too. 

Three weeks later I was in my English class when a hall monitor came inside my classroom. She had a request slip and called out my name. I was fearful of what I had been accused of doing, and dropped a school book as I was trying to put my items away.  The poor monitor must have seen my face as she explained that the librarian had requested my presence. At this, my English teacher took a different tack and put a friendly smile on his face.

Band-Aid- "Do They Know Its Christmas?"

So off I trotted with my slip to see the Librarian. It has seemed like an eon had passed since I last visited her and I had no idea why she would want to see me.

I walked in and handed her my pass. She smiled at me, and asked me to take a seat. Then she told me that she saw a show the night before and it may have answered my question. She asked if I had ever heard of Huntington's Disease. I told her it didn't ring a bell, and then she got out a book and it described my mother to a T. I slowly nodded to her to keep reading and she finished the whole description. At the end it her medical dictionary described my grandfather's condition when I last saw him. 

Here was this poor woman basically becoming my genetic counselor. She explained to me the disease, that it was terminal, that a child appeared to have a 50% chance of getting it and that it occurred generally after childbearing years. 

Queen feat. David Bowie & Annie Lennox - "Under Pressure"

I have wondered how she came across the decision to share this information with me. She could have easily ignored what she saw on the telly and changed the channel. She could have ignored my previous request for information.  Instead, she felt that an informed child would best serve society. She is my role model when I worked in the library myself. I feel an informed student will best serve society.

I never brought that information to my mum, but I did ask my father when he came home from work. I outright asked him if Mum had Huntington's. He looked at me straight in the eye and asked where I heard that term. I told him I found it in the library,not an entire lie but I didn't want to get the librarian in trouble. My father went  on to confirm that was what my mum was suffering from. I then asked Dad if that means my brothers, sisters or I could get it. He slowly nodded in the affirmative. It was the saddest I've ever seen him except when he lost mum.

Billy Joel-"Pressure"

I read Time Magazine, What does it mean?

From that time forward, I had a new respect for my mum. She was fighting this beast all alone. No one was there supporting her because we all were supposed to ignore the beast in the room. I learned that the day I talked about it with Dad. HD were forbidden words in my house. Its something that every day I try to break with tradition. 

Elton John-"Levon"

Notice how distinctive this song is? Three notes on the piano and

the audience starts cheering Elton on. Beautiful and moving.

this is what music should be.

The day Mum took her life I remember coming home from school. There was just something different. I could tell you what it was, but it was an absence. There was no natural noise of a home being lived in, no smell of cooking, no expectant parent waiting to sit over homework. I remember dropping my schoolbag and knocking on my own house's door. I don't know why I did that. I just know that I did. As if in a bad dream nobody answered. I knocked again. Then I went in. I went through the living room to the kitchen. No food, no  cooking. Everything was cleaned as if expecting a guest. I went back into the living room and then knocking on my parent's bedroom. There was no answer at the closed door.

I was going to wait until Peter came home but he was out on the football team and wouldn't be home for several more hours. I knocked at her door again. Now I was getting fearful. I didn't know of what but I was scared. Finally I opened up the bedroom door. Then I don't remember anything else until I arrived at my neighbor's house. The Mitchell's were always so kind and that's where I must have felt safe for it into their home that I ran. 

Poor Mrs. Mitchell had to deal with me. I was screaming, and running like no tomorrow. She managed to get some tea down me and had me tell her my story. She then called the police and I remember her telling them it was "a suicide" and "appeared to be a gunshot". Then she called my father, who promptly came to get me. I don't know where we were going as home was not convenient but Dad just took me out for a quick snack and then we sat in the car. 

Elton John-"Daniel"

One of the best Daniels, and I've heard a lot of them

When the police came I repeated my story and then went inside to confirm it. Then my dad asked if we could go, and we went to his office so he could bury his head in his work and we wouldn't see them remove Mum from her home for the last time.

We picked Peter and then went to the daycare where I youngest sister was. From there we all went out to eat as Dad told everyone what had occurred during the day. I just felt empty. 

I was always closest to Mum. She was the parent that I confided in. She made the best gingerbread cookies. All these random thoughts came in my head, and sometimes still do. Most important, it all just up and disappeared. The person who made me feel whole was gone. That part of my heart remained empty until a few months ago when I finally found someone I could trust again.

Elton John - "Your Song"

My life went downhill for a number of years. Took my O's and barely passed them. Then instead of going to my As I dropped out. I took menial jobs before eventually attempting a geographic cure in the United States. 

Phil Collins-"Take Me Home"

Here the audience knows the song after a few hits on the drum.

Take me home, since I don't remember

I've been a prisoner all my life,

By now I was drinking a bottle of Jack Daniels every day.I started early and drank everyday. Then one day I ran onto the 101. I don't know what I was thinking, if I just wanted to end it all or if I just wanted my life to be over but either way I ended up in the local psychiatric ward when I came out of my blackout. 

It was there that I realized I needed to get my life together. With a psychiatrist I found the strength in me to go back to school.I finished my education after receiving a Bachelor's degree in Library Science. From there I applied for a job at the local library in the City College. I worked there until my depression and anxiety became debilitating and I applied for and received disability based on the years I had paid into the Social Security system. I also received my green card while in school which allowed me to accept some financial aide as well as allowing me to live here safely without fear of being deported. 

Phil Collins-"In The Air Tonight (Live)"

After 9/11 the government became suspicious of those holding education or working visas. I had several visits from government officials until I received my green card.  

Tears for Fears-"Shout"

Since that day I ran into the motorway have I ever thought about suicide? Yes I have. I would seriously consider it except it would affect too many people that love me. I wouldn't want anyone to walk in to find me dead. That is not fair to them. If there was a peaceful way to go then I would grab it in a heartbeat. I know how to go, the question is would I do it? In all honesty I can't answer that. I would ask Jane to be involved for the simple reason I don't want her to come home to find me dead. On the other hand, its not fair to her to take care of me when my condition deteriorates. In all honesty I don't want to ever get to that point. Would I rather be dead then to be where my grandfather was, yes I would. 

Billy Idol-"Eyes Without a Face"

I'm not there yet, so my mind is still open. When the time comes I'll talk about with Jane, but not until then. I want to spend the time I have without this specter hanging over us.I'm selfish and I want this time to be as carefree as possible.

I love the Pet Shop Boys, then and now

Pet Shop Boys-"West End Girls"

Tomorrow I have a few errands to run, and then after work Jane and I are going to through our bookcase and donating some books to the People's Library in New York. The Operation Wall Street Library has been destroyed by the police. These books were literally thrown in the trash and ruined. When some books were recovered they threw them in the trash again. We thought mailing them our books would be a good way of supporting the movement.

Imogen Heap-Hide and Seek

Take care, thanks for reading and G'nite

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

Walking on a High Wire

This is insane. How could I go from such a low anxiety level to such a high one the second I wake up is beyond me. 


Mood 5.0
Anxiety 7.5


My anxiety was so bad that when I woke up I wasn't able to get out from under the covers to the toilet. 


"A lot of people think that 'Shout' is just another song about primal scream theory, continuing the themes of the first album. It is actually more concerned with political protest. It came out in 1984 when a lot of people were still worried about the aftermath of The Cold War and it was basically an encouragement to protest."—Roland Orzabal

On that note I'm dedicating this song to Operation Wall Street.

High Wire by Men at Work

I swear this is my theme song lately.

Seriously, this song captures how I've been feeling lately. I constantly feel like I'm on this little wire and I have to be careful not to fall off.

Cruel Summer by Bananarama

The song's title says it all. Not been a good year. 

On the other hand, last night went very well. I had a long talk with J and it seems as if she is also in it for the long haul. I never thought this would happen to me and its a wonderful feeling. Scary but wonderful.

Take a Chance on Me - Abba

Its nice to have someone willing to take a chance on me.

I never thought I'd feel this way. I swore I never would.

Scary, but not in a bad way, in a way where I am in unknown 

territory, which isn't always a bad thing.

Mood 6.0

Anxiety 5.0

Ah the age of Disco and very early childhood memories.

On my way out the door just having fun here with my music.

A woman on one of the HD boards I belong suggested we post photos of our loved ones smiling. Although I don't have any photos to share here in California, it has lifted my mood to see everyone else's photos.

Mood 6.5

Anxiety 3.0 

I'm very tired this evening so going to sign off. 

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An Experiment, Disneyland Ghosts, White Lipps and a real live pier!

I'm going to be starting an experiment this week. Actually, I will be starting now. My post last night from Trish's book gave me the idea. I'm going to start scoring my moods before and after listening to music. For example, my mood was a four when I first woke up. Less then ten minutes later it jumped to a six and a half simply by listening to some Bee Gees, even before I washed my face.

This probably doesn't seem much to you, but when I'm not even able to get enjoyment out of reading a book I know there's a problem. As you might remember, I used to work in a library. I love books. Outside of Trish's book, I've almost completely stopped reading. There is no pay-off. Outside of sport scores, I don't pick up a newspaper.

 Martin Rushent's  production of Pete Shelley's catchy tune "Homosapien"

Sh*t  She's white! 

I saw this incarnation of the Dapper Dans at Disneyland several times.

 It was worth the money simply to hear them sing in harmony.

A real talent rarely heard these days. My opinion - If you're local get an annual passport so you can leave Disney's California Adventure park when you get bored. If you aren't from the area, buy the multi-day pass and spend all the time in Disneyland Park Proper unless you like thrill rides. Stay at the nearby Super 8 and take the money saved on your hotel to spend an additional day at the park. I've never had problems with loud guests there and its about fifty dollar plus tax.

I read at the time this song was influenced by Primal Scream Therapy. All I know is when I want to shout in anger this video goes to the top of the pile:

along with this one...

influenced by Carl Jung's theory of "Synchronicity"

"Sometimes we'd just sit there and she wouldn't say anything and I wouldn't say anything and you could try to work out what was going on in her head but I think its something we don't understand. Not yet, anyway."

The wonderful thing in this video is its not afraid to tackle the issue of of family and patient head on. Its shown as a good thing, not a relationship to run away from. I had the chance to run this by Penny W's daughter @meekodev this morning. Her mother was a first Generation Huntington's Disease patient (genetic mutation) so they missed the diagnosis until the very end.  Penny, like her daughter, had worked in a library for many years (That's where I met Meeks in fact). Anyway I asked her if I was the only one seeing this video as a positive message and she actually agreed with me. She told me it captured their relationship the last few months when her Mum reverted to the delusion her good friend and roommate was her own dead mother, Meeks grandmother. 

In the end we both agreed this video should get wider release as an educational tool for families to show them how important these memories are to both the parents/grandparents/siblings as well as their survivors.

Now that my mind is on Penny, this was the song she sang to her daughter, her daughter played back to her on her last day and it was also sung at her Celebration of Life by an opera singer. She gave it a flavor that could be any relationship whether it be friend, child or lover. That, I'll never forget hearing.

One more for the road, mainly because although I am not a big fan of the song the story behind the video is hilarious and I need hilarious. 

This is The Human League in 1984 on Dick Clark's show here in the States. As you'll see he had the late Laura Branigan introduce THL. The reasons I find this video so utterly funny is

• Branigan mentions this is their first appearance on American Television . Notice that not a word was said about any past bookings. That's because they literally walked off the Soul Train set two years before. Their manager Bob Fast had said they didn't need or want dancers as they had "the girls" but he wasn't heeded. Since they always do live rehearsals they noticed the dancers on the floor immediately. 
• Jo Anne's Sunglasses (stage right)
• The wind is blowing their voice back in their faces. Oops. 
• They are dancing on a piece of wood. Don't ask me why I find its funny but I do.
• Phil's perm
• The clothes are too small. Its more obvious in one of the other songs where the lead singer is wearing a girl's one quarter length armed t-shirt. Also in the other video his sunglasses keep falling down. It was another post on YouTube asking to see this piece of "history" that alerted me to it in fact.

I swear, You can't get this from Central Casting. I just hope they didn't market this to the Clark show as California Hip.

I've been to this area on a number of occasions. I'd love to know the bill for Clark's security, and I'm not talking about protecting the band but their equipment if you get my drift.

Okay, waking up the other side of the room with my laughter so I really need to finish this up!

I'd say this experiment worked today, don't you? Mood = 7.5/10

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