Repeats, releasing anger and the 12 hour blog entry

Mood 6 of 10
Anxiety upon waking 8 of 10


Several brief topics here. First is the issue of repeats in HD patients, not CAG repeats but word repeats. 


I find myself typing the same word or word pair twice at least a couple times in a blog entry. This isn't new, but something that I'm much more aware of then when my typing consisted of short emails, data input, Facebook statuses, and URLs. Anyone have experience with this or heard of this? I wouldn't care except I don't catch it until a second or third proof-read, and have to go in and edit the entry. Its just a pain in the a$$ and just one more reason to try the version of Dragon Dictate J bought me last week.

Stuck on Repeat by Little Boots

I've made several decisions that are unavoidable, or at least sitting in the background. First, a friend of mine M. who is HD at-risk wants to go to a support group. This friend doesn't currently have a car and I offered to take her. She tried to back out but my car needs the mileage so current plans are on going. She keeps going "No, really I didn't want YOU to take me" because she knows I'm really uncomfortable with attending myself but then I'm telling myself  "Really, I need a reason to get out of town" which is partly true. I also want a trial run to see if I can even get to the door.


Only problem, I didn't think it through until I typed this. I don't want to go myself. I'm not ready for this. I have nightmares of being in a room of people that are all suicidal like my Mum. The times I don't wake up, in my dream I come back from smoking and everyone else in the room is dead from self-inflicted gun wounds. Yeah, I know that's a nightmare and not real blah blah blah but I wake up feeling its real. 


That's a demon I'm just not able to face yet. Its my private demon. I am scared that when I walk in the room I'll be seeing myself a few years down the road. I'm not ready for that. Will I ever be?

This song has made me cry for most of my life. Let me today.

Yeah, its one country song in how many days? Gonna come and kill me over it?

I don't know why, but have an idea its because it talks about what Mothers want their children to be in the future. I could be really off though. 


An anger song: 

Sometimes even guys need to cry. That includes me. 

"Daddy didn't give attention 

To the fact that mommy didn't care
King Jeremy the wicked
Ruled his world"

This song brings on so many feelings, anger toward my Mum for being the most important person in my father's life (what's so important about open house night at your school, son???) , obvious anger at HD for leaving us to find her dead, anger for giving me this Motherf'cking disease and all the other stuff I'm working out in therapy. Oh, yeah that thing about risking passing this POS onto any kid I have and not wanting to put any other adult into a non-equal relationship with me. But besides that, hey nothing to be upset about. Really.

More anger music- I can feel my system getting it out.

The End- The Doors

One of the best comments I've ever seen on YouTube is under this video. 

Its referencing the Operation Wall Street protests.

"The protestors[sic] on Wall Street are saying, 

"No more! WE will no longer just be bricks in your damned Corporate walls.

" Stand up, hear the music and take action against the rising Tyranny.

 "Hey, Teacher, leave them kids alone!!""~jeff62rey

I never knew this next one was about the Vietnam War, seriously. 

I've been discovering that era has some great anger music.

The Rolling Stones - Paint it Black

Well, its now 8:30 pm and I started this entry twelve hours ago. I did way too much the last few days and will be going out to distribute Amy Ahearn fliers tomorrow so I don't have a choice but to be rested up. 

I just don't have any drive today, so I'm going to sign off with some Blondie and Pretenders.

Okay, J is literally starting to walk me to our bed so I better get off the computer. Have a good evening.

Catch Paul Ware on Facebook or Twitter

Two Holidays and Housemartins...

Mood 5.5 of 10
Monday is going to suck. My leg went out from under me in the soda aisle so I'm going to be making appoints for my General Practitioner and Neurologist tomorrow. On top of my right leg leg kicking in bed my jaw is grinding until it cracks. I get OCD about the jaw making it near impossible to stop. If it doesn't  reach a certain amount of numbness in the joint, I feel the need to continue grinding. The good news is my back pain is nearly gone since I reduced the pillows I sleep on, so I think they were the cause. 


Its a double holiday here in North America and I don't recognize either of them. The first is Canadian Thanksgiving.  And you guessed it, I have a song cued up. From South Park the parents are blaming Canada for societies ills.

Blame Canada- South Park Bigger, Longer & Uncut Cast

Since I don't consider conquering Native Americans a reason to have a day off, I'm choosing Savages from the Disney animated film Pocahontas. Not  only does this song deal with the blind hatred and bigotry of both Jamestown and the Native American tribe, but it also confronts outright hatred. It was a big step for a company that is based pleasing parents who purchase tickets and videos for their children. 

What do I know though?  I only buy their Mickey Mouse 50 year old Classic cartoons, Silly Symphonies and Oswald the Lucky Rabbit DVDs.

Savages and bigotry on both sides of the conflict

"Savages" from Pocahontas (Disney 1995)

This song is for a dear friend of mine. She was a competitive figure skater and was looking forward to train other students once our rink here in Goleta opens up. She is now showing symptoms of HD and she feels her hopes are dashed as she has the talent to coach others up to the National Level. When I hear this, I feel the love of skating she holds in her soul. I only hope she will begin to realize simply because one has symptoms of HD does not mean she needs to put her life on hold. If she does what makes her feel positive and productive, that can be more healthy than most treatments combined in my opinion.

Melissa Manchester-Through The Eyes Of Love 

(Theme from Ice Castles)

Way too much Chick music tonight. Let's spin those turntables.

First up is another single from 

The Human League's Credo 

Never Let Me Go Official Video

First single with one of the girls singing lead, and Joanne pulls it off.

Journey-Faithfully

Another song I wore shoe leather down while spending hours on the floor dancing to was:

Kim Wilde's-Kids in America

Madonna-Vogue

Great song, fascinating back story. This song was heavily influenced by the New York 

Gay Club scene. Among the major players were the Club Kids and Michael Alig, a promoter.

They brought the scene from end of Studio 54 into the age of Celebutantes. One of their main influences was Australian Leigh Bowery.

James St. James covers it well in his book Party Monster (originally Disco Bloodbath),

the story of Michael Alig and his roommate "Freeze" who  killed a third Club Kid, Angel, over drugs.

 The book was made into both a documentary and feature film titled Party Monster. Macaulay Culkin of Home Alone fame captured Alig perfectly. 

The Dream Academy Life in A Northern Town 

I'll leave you with two from one of my favorite 80's bands, The Housemartins.

 First up we have Happy Hour

and then Flag Day

Hope you slept well...

mood: 6.5 of 10

Catch Paul Ware on Facebook or Twitter

Ahearn story, More Depression,poetry and other news

First up, a new article on Amy Ahearn is here with more details. Please read, share and the closer you live to Norwalk or Cerritos (auto square!) the better. I'm an hour north but will have a few copies made up to post in high traffic areas. 


Next up, I'm exhausted. I'm beyond exhausted. I'm sick to my gut and was only able to keep soup down last night. I felt terrible as my girlfriend (as Facebook nicely says "It's Complicated") had made a nice dinner. I felt just awful. Then today before the plumber came back I made it to my dad's and to the bank to get my current living will notarized. Now I need to xerox it and mail it to the California Secretary of State. I recently discovered in California  you don't need to be a citizen to take advantage of this service. For ten dollars I'll have an Advance Directive that "moves around the state" with me, that is peace of mind. 

This is the Future, a band made up of Martyn Ware and Ian Curtis Marsh of Heaven 17 before they added a vocalist to become The Human League. Ware and Marsh left several years later, when Philip Oakey took the The League's name, large debts to Virgin Records and added Sue Anne Sulley and Joanne Catherall to cover for the now lack of Ware's higher tone backing vocals. I really like The Future's sound. 

I went down for my nap after the plumber left and woke up early, it was 5 p.m. but felt like I'd slept so late I missed dinner. What scared the crap out of me was before I'd even opened my eyes I was thinking to myself "Enough of this, I give up." Its times like this I am so very thankful I'm not living alone. I immediately told her what I was thinking and she's brushing it up to the remnants of my old carb heavy diet combined with lack of nutrition the last two days. I hope she's right, but I know who to call if I need professional help which is half the battle. 

Then I drank some Gatorade to be safe until I ate dinner. I've been in a bit, okay a lot, of pain the last few days as well and the pain meds I take upset my stomach. I wasn't the brightest bulb on the block when I refused to take my anti-nausea pill. Its in the family of anti-psychotics as most of them are, and make me uncomfortable. Tales of things which may come in the future so-to-speak have a tendency to spook me. As a consequence my anti-depressant and mood-stabilizers came up at night. Next time I'm taking Naproxen instead of the narcotic. This is a second time since January I've had trouble with a narcotic pain killer. 

For all I know the depression could be a blood sugar issue or med withdrawal. Just in case I  need to make an appointment Monday to see the doctor about blood work.

. Berlin- The Metro

While waiting for the bus (I didn't feel safe to drive today) I was reading an interesting piece in Trish Dainton's book Curse in Verse & Much More Worse (pg 92) today that really struck home. According to a prominent HD researcher the unknown part of the brain that enjoys and appreciates music does not turn off in the degeneration of Huntington's Disease.

 I think the premise of this blog is proof of this!

Catch Paul Ware on Facebook or Twitter

Pan Am, Meekodev and lack of cable

Yesterday was uneventful so I didn't  blog about it. Today appears to be more of the same. Outside of going to the store and watching Conrad Murray's bald spot growing, its been very pedestrian. The one change is that I am back on my high carb diet. It consists of six top ramen daily. That alone puts my calorie count over 3,000. I also enjoy sugar soda and I haven't cut back on that. I understand this is not a healthy diet, but I also understand how important it is to get the weight back on my body. Even before HD entered my life I had problems keeping weight on, much less gaining weight. Sure it will clog my arteries but realistically the HD is likely to get me first. Being the proper weight, or slightly above it, gives me a nice buffer when I take ill.

------Music break-----

------Is it just me or did Joy Division suck when they became New Order?----

In addition, I really need to get to the grocers. I will take a walk and pick up a few items later, however I do need to get a lot of items at Costco once my anxiety leaves me. That is not today. I walked to the nearby shopping center and didn't get past the first store. My anxiety went from 5 to 7 on a 10 point scale. By the time I got home I was sweating, my arms were plastered to my side and my hands sweating and closed up tight. I made it home and managed to get dinner down me. That's better than yesterday when I lost my appetite over my anxiety.


Other things I did today included watching several Frontline episodes and I just started a promising documentary on Guantanamo Bay I hope to finish before falling asleep. Netflix, Hulu Plus, Amazon Prime and streaming websites in general. I don't have cable as its so expensive and the only time I watched it was the world cup and Olympics. Today I finally saw Pan Am. It was a cute show and I'm already looking forward to next week. Its set in 1963 and took that fact very seriously from costumes, music to the political climate. 

Tomorrow Amazon is delivering Credo, the new Human League album on my door so expect a thorough review from me. I also have a friend who is the biggest Human League fan coming over for a listening party and I'm trying to convince her to do a guest column and review of the album here as well. It will be interesting as we have very different opinions on music, although we generally like different bands, THL is one of the few we share. Her taste in music is also much more broad.

I was really glad to see that Wall of Sound Records gave them a decent budget for a video. The video really gets me in the mood to go out clubbing which I haven't done in too long. I don't drink anymore with all my meds, but I still love to people watch. Another thing I'll say about this single and that is instead of using AutoTune I love the way they threw the girls' voices in a vocoder. 


Here's another artist that refuses to use autotune.

Not a big fan of either artist but in this song they hit every note perfectly. It was a great match. I first saw this video after my friend recommended it, and she knows I'm not a Eminem fan. As for Rihanna I have never heard a song of hers I could stand, but again she is really good in this and her voice is so melodic. 

Now this is music! 

Kraftwerk's Autobahn

Just got finished a Facebook chat with my friend and she's willing to review the album AND do a guest post. I'm looking forward to MeekoDev's input here on my blog.

And with that, its bedtime for me. 

I'm Paul Ware and you can reach me on Facebook or follow my Twitter account