Feeling Under Pressure

Good Afternoon Boys and Girls,


The clock just hit twelve noon as I sat down to type my first few letters here. Its good to have a new, fresh start after yesterday.


Did I sound whiney or what? I probably did because I was so tired of being sick and tired. One thing many people don't understand is that since Huntington's Disease affects the brain it also affects our thinking processes. We know its busted, that's the frustration. Yet we still want it to work right, as we often know what right is. So we fight it inside our brains.


Like me. Yesterday. I knew it isn't right to be so upset about walking three blocks and being inside a shop for 15 minutes. Yet I was petrified to go. Petrified as being on the upside down loop on a roller-coaster. I knew that the fear wasn't in proportion to the action, but that didn't help at all. It simply adds to the frustration.

You know that stupid feeling you get when you leave the house and forgot to check the coffee pot? You know you unplugged it, yet... that little voice is saying "Did you check it? Are you sure its unplugged?" Magnify that by 15 and you get an idea where I was yesterday every time I got up to leave the house.


This went on for nine hours! It took that long for me to throw Sparks on and get outside the house. Then one foot in front of the other and twenty-five minutes later I'm done and I'm home safe. Exhausted but safe.


Then comes the next day. Here I am. I want to go out one block. Yet again the fear is taking over, I can feel it in the back of my kneecaps. My legs are already pulled up in a protective angle. WTH?


All over what? The fact I need to go outside to smoke? You got it! So here we go all over again.

Joni Mitchell - "Circle Game"

Its days like yesterday and today when it doesn't seem so bad to know that some day I'm going to be 6 feet under. I'm not suicidal. don't get me wrong. I only mean that it will be nice not fighting myself.

Stop the Merry-Go-'Round. I want to get off!

The Eagles-Hotel California

So now I'm back home, and do I feel better? Hell no. Now I need to get out of the bedroom to the kitchen and that's now too much. So I'm going to relax, try to make the bed around the sleeping cat and really try to find something cheerful.


Frankie Goes to Hollywood will be our Triple feature today with three cover tunes from their brilliant album Welcome to the Pleasuredome. There isn't one bad tune on this album.


And before you ask - The answer is Yes, I did have a "Relax" T-Shirt and Yes, I knew what it meant. As long as the folks didn't know I was safe.  ;-)

Frankie Goes To Hollywood-"San Jose"

Frankie takes on Bruce Springsteen's "Born to Run"

"Ferry Cross The Mersey" with brilliant visuals

Every time the music stops my head starts whirring and I feel the empty walls. Strange. 

Paul Oakenfold feat. Matt Goss - "Firefly"

Sophie Ellis Bextor-"Murder on the Dancefloor"
This is just a "fun" song.

I was reading on my Facebook earlier a friend talk about Queen  (Queen, Cash and Cooke) and it got me thinking about what musical geniuses they were. 

Queen-"Flash"

Queen-"Under Pressure" feat. David Bowie
Gotta love those visuals
R.I.P. Freddie Mercury

I'm throwing on one more by Frankie simply because I can't get it out of my head today. Although a heavy Christmas release, I first heard this as the last cut on the Pleasuredome CD (or was it on Peel). Either way, it is one of the most beautiful love songs I've heard in my 40 plus years on the face of this earth. 

Frankie Goes to Hollywood-"Power of Love"
Sit back, relax and forget about the camels for a few minutes.
Just listen to the lyrics.

On that note I'm going to leave you. The cat finally stopped making me pay for waking her up after making the bed, in other words after an hour of demanding payment in petting she fell asleep. 

This leaves me with several chores around the home to finish before I go out to a friend's house later tonight. So off to do the dishes and jump in the shower, while I can.

Now, if I only owned the BBC... ;)

G'Evening.

Catch Paul Ware on Facebook or Twitter

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

Catch Paul Ware on Facebook or Twitter