Tuesday, 28 February 2012

Grand Rounds

First, I need make an apology. This entry was due to be published on the 28 February 2012. Due to technological and physical circumstances (I had finished publishing it on my phone driving down to Los Angeles) it was incorrectly saved as a draft. Another kind member alerted me to this fact and I now have the laptop to currently publish this.

Without much notice another terminally ill friend of mine had been hospitalized without knowledge. His wife and my family tracked him down and he is now with all of us as he finishes his life journey.

So off to Ground Rounds it is. I must admit I didn't expect to be reediting it with two six year old twins and my best friend all cramped into a bed, but whatever works, right?

There were so many good choices this week I'm going to start with this gem that came  across my twitter.

The Kinks-"Lola"
Note, this song was chosen because it is actually a favourite of the my female friend described below.

Gender Identity is not a Disorder by Philip Hickey, Ph.D. 

"The problem with gender identity disorder is that it makes no distinction between the child who expresses a yearning to be of the opposite gender simply because these kinds of utterances have been reinforced, and the child who has perhaps some genuine biological anomaly.  As with all DSM “diagnoses,” if you emit the behavior, you’ve got the illness.  And of course if you’ve got the illness, then you need to be treated!"

I chooce this piece because I do have a friend who had sexual reassignment surgery. He went from a very unhappy man to a very productive female member of society. Hickey does bring up important fact though about when it becomes a disorder for small children to begin hormone and other medical treatment. I highly recommend this thought provoking piece. 

U2 ft. Johnny Cash -"The Wanderer"

This next article from Colorado Health Insurance Insider is very interesting on many fronts. This program promised many good things, but as the article mentions 

"the Colorado health benefits exchange “…will not be connected to the long-troubled Colorado Benefits Management System, which handles food assistance and Medicaid.”  I’m not sure what ” not connected” means here… whether the exchange will provide no enrollment material for people who qualify for public assistance, or whether some other program will stand in for the Colorado Benefits Management System in order to make the exchange interoperable (or integrated) with Colorado’s public benefits programs."

I know that this is a case I will be following closely and thank Louise and The Colorado Insurance Insider for bringing it to my attention.

Having had to personally experience as a client of both well run as well as broken down benefit services this may be the deal breaker in the Colorado program. In addition if it is another agency will it stand in the way making it harder for those  in need to get the help and benefits by having to visit another agency?

On one final note, some of you may be aware February 29 is Rare Gene Disease Day. My disorder, Huntington's Disease is covered under this umbrella. If you would like to know more, at the top of my blog banner is a link that will share a bit more information. 

Again, thank everyone at Grand Rounds for allowing me this opportunity as well as understanding during this stressful time in my life.

Depeche Mode-"Blasphemous Rumours (live)"

Sunday, 12 February 2012

Up All Night

I managed seven hours of sleep last night. I'm still yawning but feeling better than I did yesterday when I was running on only two hours of sleep and a migraine headache. The two days before I was running on six and two hours of sleep.

Lionel Richie-"All Night Long"

So I was on YouTube this morning when it recommended "I Need Your Loving" by the Human League. I made the mistake of clicking on the link. Two minutes into it reminded me why I have only played Crash once when it put it on my phone. I mean, it really doesn't get any worse than this. It was funny in a sick sort of way, like watching a car crash. Let me just say it was so bad I don't want to contaminate my blog.

Seriously, it reminded me of why the band pulled out of the sessions leaving the producers Jimmy Jam and Terry Lewis to finish the album without them. I mean, they had to finish it with session musicians because the band walked out. 

Need I Say More? 

The Human League-"Circus of Death"

Today I am able to fight my headache. I have knots on both sides of the base of my skull. The pain is radiating to the top of my head on both sides. That's why I haven't been online much of the last few days. I should have known I was sicker than I had thought when people on Twitter noticed my absence and were concerned.

Simple Minds-"All The Things She Said"

I don't know what caused this migraine but its an extremely vicious one that just keeps coming back. I finally talked to my psychiatrist about it last night and he called in some medication (I don't have a primary care doctor yet). It was after pharmacy hours so I can't pick it up until tomorrow as all the ones around here are closed on Sunday. At least I know an end is in sight.

Today's Double Feature, the late great Whitney Houston
Whitney Houston - "I Wanna Dance With Somebody"

I'm still in shock over Whitney Houston's death. Although not a big fan of her music, I always liked her voice. I share many memories of her with my sister who loved Whitney. I bought my sister the first two albums by Whitney when she was a kid.

Whitney Houston-"I Will Always Love You"

My sister had this 45. One day she came home and proceeded to play it over and over again. I finally snapped and tore it off the family stereo, proceeded to stomp on it and then snap it in both directions. I've never seen vinyl shards like that day. As a big brother I then felt bad so two days later I bought her the entire "The Bodyguard" soundtrack. All was forgiven and I no longer heard this one song over and over again (I had stopped counting at 20 the day of the record destruction)

Although I have a lot of musical respect for Whitney, I still much prefer Dolly Parton's original recording of this gem. 

Dolly Parton-"I Will Always Love You"

"Mine is only one of the millions of hearts broken over the death of Whitney Houston, I will always be grateful and in awe of the wonderful performance she did on my song and I can truly say from the bottom of my heart, 'Whitney, I will always love you. You will be missed.'"  Dolly Parton

I've been reading near constantly. Its the only activity that is helping pass through the pain, and it helps me to escape. When I'm able I have been playing Depeche Mode or Human League. 

Depeche Mode-"Master and Servant"

My choices have been eclectic at best. My choices by Depeche have been very down the middle of their catalogue while my choices of Human League are the exact opposite. I've been playing music from the earliest and most recent CDs while ignoring their more famous albums altogether. Its rather odd.

The Human League-"Night People"

Credo is more trance than anything, and lately I've really been enjoying this style of music.

Paul Oakenfold-"Delerium Silence"

Oakenfold has always been my favourite trance artist & DJ.The man is brilliant. Also I don't feel so old when I listen to his music. He's six years older than me and rocks the house, so I see hope for me yet.

Berlin-"The Metro (extended)"

My ear today has been on bands that are fronted by women. From Berlin and The Motels to Bananarama and The Go-Gos. There were quite a few women in bands back then. Add in others in duos like Allison Moyet and Annie Lennox to really round out a good afternoon of musical choices. 

The Motels-"Suddenly Last Summer"

This song by The Motels always brings back strong memories of my last carefree summer. It was released right before I went completely into SynthPop and was listening to a lot of American pop music. In fact, I can list all the British musicians I enjoyed on one hand. 

U2-"The Refugee"

I did not get a true appreciation for U2 until I was an adult. Looking back, their early music was too heavy for me to understand. Same way with Depeche Mode. I liked their first album Speak and Spell, the rest of their music had to wait until I matured.Now I will travel half way across America to see either of these bands live. Like Peter Gabriel, they know how to rock the house down. 

On that note, I'm going to close with a live version from each of these folks. Put your headphones on, turn the volume up high. These artists are going to take you to places you thought you'd never go to. 


Peter Gabriel from the This Way Up Tour 1987
"Lay Your Hands on Me"

Depeche Mode on Touring The Angel 2006
"Enjoy The Silence"

U2 on The Joshua Tree tour
"Trip Through Your Wires"

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.

Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.

Wednesday, 8 February 2012

Blasphemous Rumors

Depression 7
Anxiety 3

Johnny Cash-"God's Gonna Cut You Down"

Most of yesterday is a blur. A migraine set in and the pain was controlling me. I was constantly drinking coffee, which is why at 6 am I am still awake. 

Depeche Mode - "Blasphemous Rumors"

When I don't feel good there is something soothing in David Gahan's voice. Maybe it is just that it reminds my body of times when life was so much easier, I don't know, All I know is my body and mind react to it. This is by far my favourite song of Depeche Mode. How true I find the lyrics. Come on, God would have to be twisted to allow so many people get sick with diseases like Huntington's which kills by destroying one's sense of self.

I think that God has a sick sense of humour
And when I die I expect to find him laughing.

Yes I know its not the most popular view, but it is mine.

Hiem and Phil Oakey-"2AM"

I can't stop playing this great song. I blogged it last time, but here it is again. You can purchase the awesome 12" CD here. If you read this blog you probably know I don't generally listen to much current music but this song has been on repeat whenever my head let me listen to music.

Bryan Ferry-"Taxi"

Something about Bryan Ferry's voice is so calming when I'm having a day where my nerves are everywhere. I feel that type of day coming on. I'm so stressed and feel out of control. The coffee and HD are not always good partners. They play off each other if I drink too much, and I had over 8 coffee mugs full yesterday. 

Blondie-"Heart of Glass"

If you are looking for a great stereo recording, this isn't it. Its mono and limited in range. This actually gives this version a feel of vinyl which is how this song was recorded to sound. I love Debra Harry, she also has a lift-the-spirits vibe to her. 

Depression 5
Anxiety 3

Well, the sun is rising, its a brand new day. I'm going to go into with a positive attitude. Its important for me to do that when possible. Its one of the few things I have control  over. Music is so very important to maintaining this attitude. 

Juice Newton-"Angel in The Morning"

G'Morning from Sunny California

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.

Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.

Tuesday, 7 February 2012

Sad News on the Breast Cancer Front

I am sad to report two well loved bloggers have passed away from breast cancer. @Whymommy and @CCChronicles left the world yesterday at too young an age. Something needs to be done to stop this monster. 

Susan aka Whymommy

Rachel aka CCChronicles

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.

Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.

Rare Disease Blog Hop

Saturday, 4 February 2012

Will I?

Before I say anything else, I want to thank everyone for their kind words the last couple of weeks. They mean more than you know.

I've been so quiet lately simply because I don't want to talk. Its a symptom of my depression from Huntington's Disease, but more than that I've just been contemplative.  One thing I have been doing more of is reading. The Kindle has really reopened the world of books to me.

Howard Jones-"Things Can Only Get Better"

On top of the lack of initiative is a splitting headache and a malaise I haven't been able to track down and life hasn't been the cheeriest this week.

The good news is my cat is doing better. Once I brought home the money in case I would have to take her to the vet and she started eating, grooming herself, using her box, and even playing with her sister again. If I didn't know better I'd think just the fact she knows she has an out has brought her comfort. It wouldn't surprise me. She's a very smart cookie.

Human League-"Blind Youth"

Lately I've had early Human League running through my head. "Blind Youth" and "Empire State Human" aren't the most melodic songs to be stuck on repeat but this last week I haven't been able to shake them. 

The Human League-"Empire State Human"

Adding Heaven 17's Temptation to my mental trio and you could say my head's been in a Martyn Ware state of mind.

Heaven 17-"Temptation (Original Demo)"

Between the Namenda and my Kindle I've found myself spending most of my days reading again. Its driving Jane up the wall because I'm so quiet again she's having to adjust. 

Bronski Beat and Marc Almond-"I Feel Love"

When I'm not reading we've been taking advantage of the new couch and having the telly hooked up to Netflix and DVD players. We've been watching a movie together most evenings this past week.

Fellow Sheffield United fan P. d. Heaton 
The Housemartins-"Flag Day"

The Housemartins-"Get Up Off Our Knees"

One thing I did manage to accomplish this week was setting up a blog for my wife. She had decided she didn't want full read/write privileges here as she doesn't read my blog on a regular basis (she feels more comfortable giving me space to write my thoughts without her having to intrude by reading them.) Then I moved her posts from here onto her blog, so all of her writing will be in one place.

The odd thing is this week I just haven't been on the computer that much. Facebook is checked once a day, I'll send a couple tweets on my phone, and that's about it. 

Tracy Chapman-"Fast Car"

In all honesty, I've been future tripping a lot. The problem with future tripping is that when you have Huntington's there isn't much in the future. Things my mind have been focusing on include how I will die, when I will die, and my relationship with others at the time of my death.

Simple Minds-"Alive and Kicking"

I'm not doing this in a depressed sort of way, but more of a factual sort of way. My therapist said its because I'm in the final stage of facing my HD: acceptance. For obvious reasons this has made me introspective.

Depeche Mode-"Enjoy The Silence"

This isn't something I can talk about. My wife wouldn't understand because she's not in my body, I don't feel comfortable talking about it with friends, and to be honest there isn't much to talk about. Where I am is more of a state of being than a  set of thoughts.

The Cars-"Drive"

My mum has also been on my mind. I wonder about the afterlife, if there is one, and if I will ever see her again. Sometimes lately I just miss her. I want to hear her laugh, see her smile, and be there for her when she cries. This is my way of saying "Dammit, sometimes I just miss her." 

Its times like this that I loathe HD.

Mike and The Mechanics-"The Living Years"

At the same time I wonder about my wife and our child: how much will I be able to see of their lives, what and how will they see mine, what will we have the chance to experience together?

Rent Motion Picture Cast-"Will I"

These thoughts are actually liberating. Its as if they were being held back by a mental.wall, and now that its  down everything is rushing out like water behind a dam. When they stop running it actually feels cleansing. 

Because no matter how hard we look life is just a bunch of
Small Circles
The Rainmakers-"Small Circles"

G'Nite now.

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.

Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.