Right Now

I'm half asleep but there are several things that excited me tonight. The first is this new song by Sheffield native Hiem. I like to promote local electronic music so I was honoured when Hiem hit me up in IM to notify me their  new song, which goes on sale today, features Philip Oakey. Here it is for your listening pleasure:

Hiem and Phil Oakey-"2AM"

Also today I was listening to a lot of early Human League and Heaven 17.

The Human League-"Black Hit of Space"

Heaven 17-"Geisha Boys and Temple Girls"

Speaking of Heaven 17, I found a rare clip of the Red Hot Chili Peppers performing a cover of one of their songs. So I twitted it with a link to Heaven 17 member Martyn Ware (formally of Human League) at the end so it would show up in his feed if he hadn't seen it. 

Red Hot Chili Peppers-"We Don't Need No Facist Groove Thang"

I don't know if he'd seen it before but he must have liked it because he twitted the link with a thank you to me. I know its dumb, but I've been a fan of his since I was literally ten years old. To get the digital equivalent of an autograph is still cool, no matter how old I am.

February is Rare Disease Month. Huntington's Disease falls into that catagory so many people are wearing blue on their daily clothes to show support. My wife actually put on blue nail polish. Every time someone asks her about it, there is a chance for Jane to educate them about Huntington's, as well as put a face with the disease.

Joy Division-"Atmosphere"

As part of Grand Round's recognizing Rare Disease Month, I was asked to pick out the best in Medical Blogging on 28 February of this year. I'll be giving you more information the closer we get. This is very important because it will bring more recognition of HD to the general medical community.   

Van Halen-"Right Now"

I went off on a friend's Facebook Wall this morning. I didn't realize how upset I am that there isn't much support for those of us who currently suffer from HD. I blasted the HDSA for lack of support. What is there right now that  helps our quality of life? Nothing except older medicines that treat the symptoms. There is only one drug that is targeted toward HD patients and it only helps chorea symptoms. It does nothing to slow or stop the disease. 

So many people have gone to the so-called "Centers of Excellence". Some get good treatment but there are so many like me who don't. We are treated by doctor's not familiar with HD, who only count the physical symptoms. There is nothing for us NOW. Its time to do something, and thank goodness there are people starting to do that, like We Have a Face

I think that is it, so I'm going back to the BBC to keep an ear on Syria. 

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.

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Wedding songs and ...Parenthood?

I finally got some some sleep, or I could say I crashed and burned. By nine pm I was knee deep in sleep. It was nice!


My sleep cycle readjusted, and I woke up bright and early. The downside is that my telephone is still sitting at 61% charged. Oh well, so is life. Just another excuse to stay in bed and read.

Band Aid-"Do They Know its Christmas"

I remember this record. I bought it, brought it home and put it on my turntable looking at the sleeve. I was surprised at the intricate design with so little time to design it. Overall, it was a nice little package.

David Bowie & Bing Crosby - "Little Drummer Boy/Peace on Earth"

Later today is a Christmas Party. I left an open open RSVP with the host. As much as I love this particular group and the party- the larger the group, the worse my physical symptoms lately. Its something I know I should be confronting but I'm not necessarily ready to do that.

Van Halen-"Right Now"

I love this song. Its on my list of empowering music. It reminds me that I can be here doing what I need to for myself or some where else. I want to be here, where I am,  "Right Now".

The next three songs are the current contenders for our wedding. If you have a favorite, let me know which one and why in the comments.

John Denver-"Follow Me"

I had forgotten this one until Jane brought it up when we discussing music. I don't know where I was exposed to this Denver song, but it was soon after my arrival in America. All I know is that in my mind I had always told myself that when I find the woman that's in this song I'll know she's the one. When I met Jane...you got it, she was the woman in this song. I didn't tell her this until three years ago as I didn't want to scare her away LOL.

Next...

Stevie Nicks & Don Henley-"Leather & Lace" 

Its offbeat, but so are we. Its also speaks of a strong woman with her own life separate from her lover, and a man who is not afraid to show to her his emotions. It also has a silly, literal meaning for us. When we first started dating, she was renting a house with two other girlfriends. We now own that house and the two former roommates will be her matrons of honor. I literally "walked into your house, and knew I'd never want to leave"

This is the current taker for first place:

Noel Paul Stookey - "The Wedding Song"

Yes, it has some religious references but I don't have a problem with them. With my spiritual uncertainty at most they it will always represent a snapshot of my life at the time we were married. If I spiritually move in any direction I see myself moving toward the spiritual side not the radical atheist side. Jane has always been a spiritual (not religious) person and really loves this song. Also if we chose this song and either of us move away from that point of view before the ceremony we can always revisit our choice at that time.

On another note, before I play one last Christmas song, yesterday evening Jane and I had another discussion. She wanted to revisit the issue of having children. 

No real problem here. I've had a vasectomy and we both know the chances of having that reversed. 


Did I tell you she had done her homework?


Yeap, she brings to the table a pile of information on pre-implantation genetic diagnosis-in vitro fertilization treatments, and the fact her health plan covers this procedure. That's a mouthful, huh? What PGD-IVF consists of is conceiving embryos in a petri dish and testing the embryos for Huntington's first, then only implanting the ones that have tested negative. 


Also, in IVF they can use a little needle to extract the sperm (OUCH!), so having a vasectomy doesn't stand in the way of the procedure. 


Now, actually I don't have any problem with this, well outside of the needle part. Its just, well, I never thought that I could be a father. 

Paul McCartney will be our double feature today.

Paul McCartney-"Put it There"

Last time I played this on my blog it was

 about my Godson, as I thought 

that was the closest I'd ever be to having a child.

Have a dreamed about it? Actually yes I have. After Jane and I last talked about this topic I had several dreams about being a dad. Its something I'd love to be, but its just that this has always been a bottom-of-the-bucket-list-sort-of dream, you know? Now its one tiny, well more than tiny,  step closer to becoming a reality. 


I told her to go ahead and start what she needs to on her end, I'm good to go on mine. Her  mouth dropped open. I leaned over and closed it. She hugged me and then nearly passed out. She really thought there was a good chance I was going to say no go. I told her that she doesn't need to second guess me, if she thinks I'll say yes, she's probably right. And then I told her if she hadn't already made the appointment I'd  give her ten bucks because I know her that well. She admitted she had, that it was Monday and that's when I told her we aren't getting married because we don't know each other, after all. 

Paul McCartney-"Maybe I'm Amazed"

John Lennon-"Woman"

To to be a sneak I slipped this in her IPod alarm clock this morning. 

Here are two Christmas songs to lead you out this afternoon. They are as different as can be.

A Cold War favourite
Weird Al-"Christmas at Ground Zero"

Kings College, Cambridge - "We Three Kings"

Hope you have a good Sunday.

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

Now that I own the BBC...

Sparks-"Now that I own the BBC"

If your only glimpse into my life is this blog, then you probably aren't aware that this year has been a lost worse compared to most.  I don't know what exactly is going on but I'm begining to think it just might be that right now my life feels a bit empty. I'm not working, I had the HD Genetic test, and of course my unexpected CAG repeats 

I saw my shrink Friday for two hours. I had called him Wednesday to see if he could fit me in this week. He heard my voice and said "my office, now, stat" The funny/odd part of it is that the "emergency" he heard in my voice was actually me trying not to tell him about the engagement until I saw him in the office.

John Lennon-"Woman"

So I get there, pour my cup of tea, open up People Magazine and promptly spill the hot Earl Grey all over my lap. No, I'm not kidding. 

You don't want to know how bad it hurt. Just trust me on this one.

Van Halen-"Jump"

That's Eddie on Keys

After two hours of talk, he upped my my antidepressant, mood stabilizer and Haldol. He's concerned that my mood isn't congruent. Gee, don't know what would give him that idea. He's also seriously concerned over some of the Huntington's Disease affects, specifically mild shaking, OCD, and depression/anxiety. I had forgotten last year the holiday stress was really awful too.

My mood is driving me crazy still. I'm so happy to be engaged but the next minute I feel lonely. What I'm really surprised about is the fact that I'm actually cheerful to have plans to be married. I never ever ever would have seen this in my future. I'm more likely to open a Chinese Fortune Cookie that says "This is iyour unlucky decade."

Last thought for the night: Jane and I spent a lot of time talking. Bringing children came up and I let her know that my mind might be open to the possibility. My only concern is bringing up a child who would grow up without a father and a fifty percent chance of a 150 CAG repeat. Then Jane's rational voice pops in and says "but its still only a 50% chance"

John Lennon-"Starting Over"

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