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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Testing and driving

Mood 2.5
Anxiety 5.0

Let's just say my mood is low enough I don't want to be alone.

It is starting to look like the time to give up my driving licence. I don't use it very much anymore for starters. In all honesty, I'm fearful to get behind the wheel most of the time. What good is that?

I still have it, and will keep it around the house for emergencies but outside driving to the hospital I guess I simply shouldn't drive anymore.  Even when I make plans most days I end up on a taxi or public transport. So off it will go into J's wallet tonight.

I don't know what is happening lately but I just want to cry and cry.

Maybe its the licence thing, I used to adore to drive. It was a relaxing activity, dating back to my years in Sheffield. Maybe its just my depression, goodness I was so depressed earlier I fell asleep in the middle of the night leaning on our living room table, not the most comfortable of places.

Holy Cow you can actually make out the lyrics in this version!

Manfred Mann's Blinded by the Light

There is only one thing that sounds decent to me right now, but its not really an option. That's a drink. I would die for a good Absinthe but it would do the same for me. 

Huntington's versus Alcoholism? That's a race I don't want to watch, thank you very much.

Bob Fosse's Cabaret has several excellent songs. Here are two of them as our Double Feature. First up is one of the most romantic scenes portrayed in a film. It simply consists of two  ordinary lovers doing ordinary things. It doesn't try to be anything special, so it becomes gorgeous. That is Fosse's gift.

Click through to watch ....

Here is one of the scariest scenes I've seen in a film. There is no blood or guts. There is  no implied blood or guts. Yet Fosse has all of us know exactly what the people symbolize, and that is the death of eight million people.

Again, click through....Come on now...click through. It's Fosse so its worth it. Would I lie to you?

Okay, I wouldn't lie to you, but she might... The Eurthymics 

There is so much to catch up on today. Even though I'm seriously depressed I'm finally recovering from the antibiotics that knocked all the energy from me.

First, I woke up to this interesting blog on being tested. I can't find the link now for the sake of me, but if my memory comes back I'll insert it for you. [Edited on Nov. 7, 2011, 08:27 P.M. Link is Here. I really recommend you take some time to read it] As you probably don't know (as only one person outside of my house has been informed) I finally went in, put the cash down and did the whole genetic counseling thing along with the blood draw. I asked J to go with me for moral support, which she was kind enough to do, in handfuls.

First, since this draw was done at a Center of Excellence they put A LOT of weight on the physical symptoms. It meant less than nothing to them that I had been on anti-depressants starting at age 25 after running across a freeway for example. This becomes important later.

After they spent time explaining to us (J came with me for the simple fact I was too scared to do this alone) where the affected Htt Gene is located on Chromosome 4  and so on. It was then that I realized most of this information she was hearing for the first time. I never deliberately tried to hide any information from her, but who wants to hear about the genetics of someone else's illness. I felt she would find it boring but just the opposite. She wanted to know about it. Everything about it.  Each and every pamphlet that wasn't nailed down was in her folder by the end of the two hour session.

J looked as if she was researching for her new career

as a Paperback Writer!

So we go in for the blood draw and in a little over a month, and a second visit, I came back for the results. They won't tell you you're CAG repeats when they tell you the result. Since I have been diagnosed based on symptoms, I don't need to know if its in my genes. That's a bit obvious. I need to know what my CAG repeats are, as they CAN give an inclination to the speed my HD can move among other things. They finally admit that if I call when I get home and still wish to know they will share it at that time.

Six weeks later we drove back down. Sure enough, based on my CAG repeats I have Huntington's Disease.So here we are driving home and I've this piece of paper in my hands that states I do for a fact have HD. Its first real "proof" I've ever seen of my HD on paper. A third of the way back to Santa Barbara in Malibu it hits me like a ton of bricks and I start bawling. We pulled up and got down on the sand to watch some surfers. By then we were both cold and hungry. After struggling to get up and about, I managed to gather a menu and ordered a Malibu Priced burger, chocolate shake and really enjoyed it.

 And no, they still won't tell me what the repeats are. Once we make the drive home I call as I enter our house. This is when I get shock number 2. My CAG repeats are over 150. That's JHD range! I asked the doctor on the telephone about this (while trying to get the speaker phone itself to work so J can hear) and he had several working theories. The first is that I got it from father and checked off the incorrect box. We both knew that was not true. Second, since my mother's family preferred to keep these things quiet.they may have encouraged her to hide some of her psychological symptoms from my father when they dated. If that is the case, she could have a higher CAG repeats as she died before genetic testing was available.

However, they didn't consider this during her pre-symptomatic period time (remember this was a Centre of Excellence and they really  emphasis the physical symptoms). They have nearly completely ignored my anxiety and depression that left me bed ridden, caused me to drop out of school after my O levels for menial  labor  and caused me to run onto an busy motorway all by age twenty-five. It wasn't until I later left for the states and received a second chance at a new medication (Paxil) for depression & anxiety followed by obtaining a Bachelor's Degree in Library Science that I was able to begin to get my life on track.

Never seen so much talent in one video

and that includes all of the charity videos.

Johnny Cash - "God's Going to Cut Them Down"

Third and finally, with a CAG this high, I should most likely be dead, or in much worse condition than I am. The only thing I can guess, and this is truly a guess on my part, is that when I go from bad to worse, it always has been a very large jump. For example, I can tell you now that this next progression that has just started will most likely be primarily physical symptoms. When I drink I can already feel the liquid catch and try to go down the wrong way several times daily. Then the circular walking issue that started six months ago, and the issues where my typing words go on repeat. Plus of course the OCD that has been getting gradually worse and more controlling. 

Unlike my teenage years I can now enjoy both 

Heaven 17 and Human League. 

In Sheffield you had to take a side between the two bands.

Somebody wants to curl up here at midnight. I started the Melatonin (thank you Melatonin Mice for your service) tonight and feel it starting to work so I'm going to head off with those two pleasant thoughts.

I didn't know this even had a video

Paul Young - "Everytime You Go Away"

Mood 6.0

Anxiety 2.5

G'nite and sleep well

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