The life of a man suffering from Huntington's Disease, a genetic and fatal illness. Every child of a HD parent has a 50 % chance of suffering from this fatal degenerative neurological illness.
This is the story of one such person.
Over this Spring, my wife and our family are going home to Sheffield. It will be an experience as it always is. For as many years as I have lived in Santa Barbara, I'll always be a Sheffield boy at heart.
The Human League- "Blind Youth"
What you see in this video is literally where I grew up. From the concrete jungle mixed with buildings hundreds of years old to the almost cold feeling that conveys to the musical sounds that came from my childhood era Sheffield is very unique. In fact, this video literally makes me homesick for the better days of my life.
Some cities are simply more unique than others. I currently live in the American Rivera and it is as unique as well. If not such a contrast, I don't think I'd be here for so many years.
Godley and Creme-"Cry"
The main reason behind my trip is that my little sister tested positive for Huntington's Disease. Its time for big brother to step up to the plate.
Another reason for this trip on Spring Break is to take our oldest children to see where their father is laid to rest in North Ireland. Yes, after a year it is time for us to visit the Belfast Child.
Simple Minds-"Belfast Child"
His mother will be coming along for the journey, having chosen to remain here in the States to help raise her grandchildren. This trip will be a sort of homecoming. For Corrine, for my children, and for me.
U2 - "A Sort of Homecoming"
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I can't believe I'm home already. Its been two days here,. and all is well. Actually it isn't. Yesterday I went to the mail box only to discover the Feds decided they didn't like my deferment on my student loans so they're deducting it from my disability check starting-this month! As if that wasn't bad enough, I get to the pharmacy and when I didn't pick up my meds last month, they shelved them. Then they forgot to put my refill back in the computer. That means I don't have my Haldol until I get in to see my doctor next week. Not good. This med controls my aggravation level, helps with my Lyrica to control my moods swings, and by its natural sedative effect controls my shaking with my Klonopin.
Roman Sidorov-"Sedative"
Dahy's twins are currently staying with us. They are rambunctious and filled with energy constantly, just like their father. They're wonderful children and its nice to have them around when they aren't in school. It also makes it harder for me to drink because one of my steadfast rules has always been that I don't drink around children. Even in my worst when I was climbing up freeways hoping a car would run over me, even then I wouldn't drink around my sister or any other children. I can't count the times I dropped my little sister off at the neighbours just so I could get loaded. Its a lot like the way Dahy would drop off the twins at my home when they were babies, now that I think about it.
The Cars-"Drive"
Right now I'm having a real Huntington's Disease moment. As I was proofreading the last paragraph I noticed that very single time I'd use a pronoun relating to myself, I had just left it out. Oops. That really needs to fixed dontcha think.
On a more cheerful note, because I really don't feel that down in the dumps even if it seems like it, Depeche Mode is back in the studio. Yeah! Now if we can just drag Human League back there as well I would be really happy.
The band had nearly fallen apart from problems on the Devotional tour (including Martin Gore's alcoholic seizures, Andy Fletcher's near nervous breakdown which forced him to leave the tour and David Gahan's heroin, cocaine and alcohol addiction) and this was their one chance to prove they could come back together.When MTV offered to feature them on The Singles Tour they knew they would have to prove they were still around. In the middle of this performance you can see on their faces that the music and audience began to click. It is one of those great times in musical history.
If you ever want to do a PSA on drugs, it should star this band. This was Depeche Mode's due or die moment.
Depeche Mode-"Enjoy The Music @Cologne (live)"
That song starting me thinking of other do or die moments. Here's another. It was what finally brought U2 fame and fortune. Live Aid:
U2-"Bad (live"
Live Aid
While this is playing I'll fill you in a bit on everything else that's been going on in my life. The Twins are getting comfortable here. We had a hard afternoon yesterday. The Twins had noticed my shaking that the Haldol usually smooths out. They wanted to know what was wrong. I explained it in very basic terms leaving myself open to questions. DJ hit me right off with "Are you going to die from this?" I think he asked this because his father died from being sick. I told DJ it would be a long time from now. Then he hit the ground in a temper tantrum while yelling that this is what his father had said. I didn't know 7 year old's even had temper tantrums but this one sure did. I got on the floor and rolled over to him, putting my head, face up, under his. He had to stop throwing the tantrum because he didn't want to hurt me. Then I simply asked him if I looked like his father, he had to admit I didn't. Then I tickled him until he smiled. That seemed to resolve the issue for now.
I do want to take a minute to thank everyone on my Facebook who took the time to answer my question about talking to the kids about HD yesterday. The information I got was extremely helpful when talking to them.
Here is a great single from Credo, The Human League's latest album.
The Human League-"Never Let Me Go"
Just a minute ago I went looking for my Facebook/Twitter code on some older posts. Among them I found the two pages I had written the first night I was sitting at Dahy's bedside over at the medical center. I published that post, and an hour later pulled both pages of it off. Its so sad and filled with my emotion that I'm still a bit shaken from reading it. Someday I'll publish it.
Here is one of his favourite songs.
Muddy Waters="Baby, Please Don't Go"
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Today there is going to more music than text. I am at the point where I'm at a loss for words. Hard to belief but yes, its true.
Depeche Mode-"Personal Jesus"
Although not the biggest fan of this song myself (I think underrated songs like "Clean" get overlooked), this version is very unique with strong American Blues roots. I wish I had found this before today.
Blood, Sweat & Tears-"And When I Die (Live)"
Late last evening we drove up to the Valley to stay with Dave's family for a few days. Although there are always snafus when being forced to settle an estate, this one has become extremely complicated in a short period of time. Items such as the car, which were willed to Ms. K in a community property estate, has an odd contract which is meant to prevent the original owner from reselling at a markup. Consequence is the manufacturer may have first right to purchase the car back since she was not on the deed (for liability reasons).
Yesterday morning I had a visit to my doctor to remove one of two chest tubes from my pneumonia. By the time I was home I was so exhausted I couldn't walk to the mailbox. Yet an hour later my wife and I were in a rental car on our way to Culver City.
This was just the beginning on an extremely stressful day. It appears that sometime around the middle of the night Saturday, Dahy had been released from medical detox. It must have been amicable as he left with what appears to be a prorated check from the facility. From there, he managed to enter another town without his vehicle (which was still in the original parking place when Jane and I found it yesterday night.) He deposited the check, made a sizable withdrawal at a busy ATM location and from there disappeared.
U2 featuring Johnny Cash-"The Wanderer"
Sometime within the next 48 hours he was received and admitted as a John Doe into a major medical facility outside of Los Angeles. He was not able to speak not think independently. Since he had no identification on him, the hospital did not know he was a hospice patient and he was placed in the ICU. (Some of his identifying information including his wallet (minus the cash), watch and wedding ring were located by Jane inside the Lexus. Our thinking is that Dahy thought it was safer there than wherever he went himself.) Once admitted to the facility was suffering from a few separate medical conditions including the pneumonia he had transferred to me. Yes, it had attacked his ravaged immune system again.
Joni Mitchell-"Circle Games"
Then the next evening a nurse came in that knew him from a previous lifetime ago. Specifically she recognized his face and tattoos (yes, your mother warned you to be careful what you put on your body-it does follow you for the rest of you life). To be exact she remembered small facial scar and a tattoo that had among other choice letters included the full F word. She managed an early morning call at his former employer in the Los Angeles area who as it happened had purchased the company he currently was working for on a contractual basis. They called Ms. K and notified her of her husband's positive location. Once she had determined it was him, she called Jane and I. With the twins, it would not make sense for her to come down to the area to drive him home. Against my better judgement, I agreed we would pick up Dahy and the Lexis. Big mistake.
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.
"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 thebehavior, 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.
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.
Enjoy.
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"
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First, don't bring up the Sheffield United loss to Charlton. We don't discuss that in my house.
Lately I have been up most nights, and getting a few hours of sleep in the early morning. I'm averaging five hours a day and am dragging all the time.
Depeche Mode-"What's Your Name?"
Being a fan of the Beach Boys and Jan & Dean
I really love the way Vince Clarke
captured that carefree vibe and vocals.
I think this is due my lack of activity. There just isn't that much that interests me which I can do right now. For example, I generally go to the shopping centre several times a week. Its nearby and I can pick up a few items and bring them home. I also need to go out to buy my smokes. I purposely only purchase a pack at a time so that I am forced out of the house, if it were, by my nicotine addiction.
Human League-"Path of Least Resistance"
This title speaks for itself.
Currently I can't enter stores. They use florescent lighting and those are known seizure triggers. Until I can safely reintroduce them to my life the stores are out. Until three days ago all back-lit devices were out. That included my telephone and all of the apps that were installed on it. It included both my original mp3 player and my Droid. All music had to be played via my laptop, which had been introduced to me the day of my last seizure. Two days ago I got back my Kindle. As you know that is the only device I can read with for any period of time if I want to understand what I'm reading. Oh, and yesterday I got the TV back.
U2--"Ultraviolet (Live in Sheffield)"
But the thing is this. even when I want to go shopping at ten in the evening and cant get my groceries there is still a lot I can do. So why am I focusing on the negative?
The reason I'm doing this is two fold. First, the negative is much more visible for its the most obvious right now. I WAS just denied a trip to the store. I was NOT just given a game of chess on the computer, knitting in front of the home theare setup I installed the speakers for last night, listening to the entire Human League and Depeche Mode catalogs or sitting at the computer blogging. So of course I'm going to be more focused on the negative. The second reason is that since I have a tendency towards depression, I'm more focused om the negative. It just makes things mentally easier.
Johnny Mercer & The Pied Pipers-"Ac-Cent-Tchu-Ate The Positive"
To this day when I think of Johnny Mercer my brain goes back to "Midnight in the Garden of Good and Evil", one of the best books I have ever read (quite enjoyed the motion picture as well). If I could only recommend one book this would be near the top of that list.
Yesterday I was listening to Radio Sheffield and they had an hour of country music on. So on that note today's double feature is going to be Johnny Cash.
Johnny Cash-"God's Gonna Cut You Down"
This video always seems to get mixed
reviews. Its still one of my all time faves though.
Johnny Cash-"I Won't Back Down"
This is one of my Anti-HD theme songs.
Guess what Huntington's Disease?
I won't back down.
Whenever I play Cash, its like Depeche Mode, almost impossible to pick just two. If you are one of the few not familar with Johnny Cash I highly recommend you put his name into YouTube and give yourself at least an hour of uninterrupted time to enjoy this American legend.
Waylon Jennings & Willie Nelson-"Mama's Don't Let Your Babies Grow Up To Be Cowboys"
This song brings back so many memories. It was released when I was about 8
and played on the radio. My Mum used to sing it around our home.
I always think of her when I hear this song, even though for a period
of time, I lived always moving around.
Human League-"Life On My Own"
Perhaps simply because my life is concentrated on what I can't do right now, this song is moving me more emotionally than it usually does. I'm also homesick. I really need to get to Sheffield. I find myself calling Peter, my brother, more than usual as well as looking at videos that feature the city.
Just a few days ago I was talking with @OccupySheffield and a friend about the interesting way Sheffield is a concrete jungle while still having historical buildings. Here is an example, featuring the old Salvation Army Citadel.
Photo from @OccupySheffield
To the left you see a building in total contrast
to the Citadel. I love this area of the city.
That is one reason I love the Blind Youth video so much and feature it here probably more than any other. I should have known how homesick I was when I had a dream about the building featured in this video a few months ago.
If you remember at one point I was planning to visit but then life took a turn, with a marriage and planned ceremony. Soon thereafter my wife became pregnant. I still need to visit, and we are making tentative plans to fly in a week before our wedding ceremony and spend some time with my nieces and nephews. Then we'll all fly to California together.
Human League-"Interface"
More photos of Sheffield
Since I'm obviously in the mood to post multiple videos by various artists today here are the Pet Shop Boys, and as this plays I'll get back to discussing Sheffield.
Pet Shop Boys-"Always On My Mind"
If I had my way, I'd be on a flight next week. Its just not an option for me. My wife hasn't been feeling well, having a bout of morning sickness the last few days. Although I do seem to be drain on her I just can't see getting up and leaving. No matter what, my first obligation is to her right now.
Pet Shop Boys-"West End Girls (Dance Mix)"
This is very different from the standard we are used
to hearing, give it a try and see what you think.
While I was writing this I got a call from my shrink. It seems my test results are in. I'm more that a bit nervous as the last time I was tested it was so stressful. I haven't told Jane yet and don't know if I will until its time for me to leave. He's going to fit me in at 12:30 during his lunch. Its so hard waiting. I'm going to leave this open blog post open until I return.
Speaking of testing, my sister has decided to go ahead and test. Once I find out the date she will be getting the results I'll be flying out to London for the day to be with her as I had promised. I don't want her to feel alone if she receives a positive result. I want her to have someone with her so she knows there is life after a positive result. If she has a negative one, I want to be there to take her out for a celebratory dinner.
[update=
Tears for Fears-"Shout"
I just returned from the doctors. My test results including the Southern Blot came back. It appears this lab also had my strain read too high, but unlike the first test they automatically sent it out for the blot. My CAG came back at 52. Its much higher than I had hoped but considering the age when I first began to show serious psychiatric symptoms it shouldn't come as much of a surprise. For those interested in the CAG age range, here is a chart.
CAG Repeat to Mean Onset Age
Thank you all for continuing on this journey with me. ~Paul]
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Very interesting take combining live performance with sampling.
Still going with the this doesn't feel like I control my body this morning. It just sits wrong. Every time I try to lay down on my side it just inches away. If this keeps up I'll be off edge of the bed in a few minutes.
In the meantime, I'm reading an interesting article from The New York Times on the homes of Mexican drug lords. For those of us that are interested in Urban Exploring, this article and photographic essay is a must see.
Duran Duran-"The Reflex"
And this, boys and girls,, is why John Taylor ended up in rehab.
U2-"Bad"
Live Aid, the day America finally realized
what we already knew:
That U2 was to be a musical force to be reckoned with
One of the people on my Twitter feed is a giant fan of Big Country. Its because of her that I went out searching for a good live performance video to put here.
Here is the late Stuart Adamson fronting and playing some mean guitar in an early Rock and Roll concert in Russia.
I may joke around sometimes about substance abuse but make no mistakes. It kills. Stuart Adamson died as a result of an alcoholic suicide attempt in 2001. He left behind two children and a wife.
Big Country-"In a Big Country"
And of course, any time I can push Tony Hadley, lead singer of Spandau Ballet and patron of the HDA, you know I will. So here's Tony at Live Aid.
Spandau Ballet-"Only When You Leave"
This next one still gives me chills to this day. I can feel them run all the way down my legs.This was one of those "Where were you" moments of my life. I can still see the floor under my knees in front of the television when watching this. The house stood still. My father, who had been putting up with my brother and my crap all day, shut up. Queen came on, and Freddie started singing. My brother and I were suddenly quiet. Then my Father's voice came from behind us, replying to Freddie singing "You made us think we could fly" with a quiet "Yes, you did"
Queen-"Bohemian Rhapsody/Radio Ga Ga"
Have a good night.
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.
