Monday, 6 February 2012

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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