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.
2011 is coming to an end, and through it all I must admit its been a pretty darn good year for me. Here's a brief rundown of the past year both in my personal life as well as major stories.
Got married
My brother visits during a stopover at LAX
HDBuzz-A Huntington's Disease (HD) news wire comes online
James Bond composer John Barry dies
today's double feature-the late Stuart Adamson & Big Country
Big Country-"Big Country"
Big Country-"Fields of Fire"
Joined Facebook and Twitter to expand my HD knowledge and support
With support of my wife I underwent Genetic Testing for HD to discover my CAG count only to be told its in the range of Juvenile HD.
My friend loses her mother to HD, I attend my first non-family HD funeral service
After a lot of thought, I stop driving
R.E.M.- "Its The End of The World"
I start this blog
Arab Spring Revolutions - Governments fall in Tunisia, Egypt and Libya
Operation Wall Street and other localized Occupy Protests
Police tear gas non-threatening protest at UC Berkeley
NYPD destroy the books in the Occupy Wall Street library
I support Occupy Santa Barbara by donating protest materials, Occupy Wall Street by donating books
Human League releases Credo, their first album in 10 years
The Human League-"Night People"
Something about the Kindle is bringing back my ability to comprehend reading, a mental treasure I have missed.
Our kitten celebrates her first birthday by becoming more playful
MeekoDev and I see Paul Simon in concert-one of the best shows of our lives
My wife and I start the process to have a HD gene-negative child
The Dream Academy-"Life in a Northern Town"
2011 DEATHS
Liz Taylor, Amy Winehouse, Anne Francis, Christopher Hitchens, Steve Jobs topped the list
565 troops killed in Iraq-46 of them from the UK
An additional 46 UK troops were killed in Afghanistan
I was awake all night (its currently 8:00 a.m.) It must be something in the air because both of us were up most of the night. As my wife was dressing she overheard my computer running a Netflix documentary. She looked at me like I was the man on the moon for watching a docu on My Lai until I fall asleep. You mean most people don't do this? Now she tells me. It must be the librarian in me.
Of course, if I had these pajamas *click on pic to order*
I bet you I'd be sleeping like this:
But heh, things could be worse. I ended up watching this music video
Depeche Mode-"Personal Jesus"
And this one
Depeche Mode-"Just Can't Get Enough"
Speaking of Depeche Mode when I used to throw a second hard drive in computers I'd always hum this song:
Depeche Mode-"Master and Servant"
When I wasn't listening to them I was reading this blog by the brilliant and thought provoking Stella:: (haha! I linked to The Beatles "Baby You're a Rich Man" so you can't accuse me of posting it too often). Seriously for a minute, her point about being gene-positive and seeing her father is something unique in Huntington's and something those unaffected by HD should read to get insight into our minds. Please take a minute to read it.
That blog and this video:
Living With HD-Introducing Carol, Stage 3
Put this song back in my head :(
Elvis Costello-"Veronica"
My name is Paul Ware and I'm asking you to do something to work toward finding a cure to HD before its too late for Stella and me. Its already too late for Carol.
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.
I'm back from our honeymoon, getting used to my Kindle while I subscribe to two Facebook feeds that review and link to free books at Amazon (Pixel of Ink & EReader News Today) .along with a third that alerts me to Amazon's Free Paid Android App of the Day. These keep me busy.
The free paid apps are pretty good ones. Yesterday was a DreamWorks game based on the Puss-in-Boots character and today it was Monopoly. I also found a free app that turns my Droid into a FM radio. I really recommend Tunein Radio.
Now before we go any further I want to let you know I'll get some photos we took, up later in the week.
Jane started the hormone shots for the PGD-IVF four nights ago so in ten to thirteen days if all goes well they will transfer two embryos. I can't believe how quick this process is. Then we'll have to wait two weeks to see if either of them attached to her uterine wall. I have already crossed my fingers. I never thought I'd say this but both of us really want this baby. In fact, I've already bought a couple toys for the nursery!
I have terrible anxiety again today. Its so bad I can't get off the bed to use the bathroom. I took my PRN and it hasn't touched it so I just took a second dose. Its time to remove caffeine from my diet which sucks as I love my morning coffee.
Human League-"One Man In My Heart"
After doing some research and communication with other people who have HD I have decided I will not be getting the feeding tube. The risk of aspiration is not reduced and in some cases can even go up. I don't know what my doctors were thinking when it was recommended I get it to avoid aspiration pneumonia when science says the opposite.
This was been something I had major concerns about. Once I had the tube placed my end of life decisions would have been limited. Now I can continue on without having my whole life and personal values turned upside down. No more fears of being kept alive when the only thing between me and the natural progression of life and death is a plastic tube.
Our triple feature tonight is The Animals
"
The Animals-:"Don't Let Me Be Misunderstood"
The Animals-"House of The Rising Sun"
Doesn't the man introducing this look like Willy Wonka?
The Animals-"When I Was Young"
So Jane and I broke open the Cuisinart. Its time for my food to be cut into smaller pieces that I can control and prevent from going down the wrong way. I also thicken my liquid. Its even in my Hawaiian Punch on my bedside table.
All I care about is that I don't die from breathing in food. I want to be a father to my child.
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.
Its my honeymoon and I've been locked in bed all day. What gives?
Before I left I amped up all my medication. This is a very hard time of year and I didn't want anything to get in the way of my honeymoon. I did pretty good until earlier today, the 23rd
The Pregnant Everly Brothers-"Common People"
Local Sheffield Band
I woke up this morning with my mood dropping quickly. I was depressed with a capital D. The first thing I did was get some food down me. By the time we were done eating my mood wasn't getting better but in fact I was near tears. I excused myself and left to go back to our hotel room which had been serving several purposes including rest stop so I didn't burn out from pushing myself too hard during the day.
Mormon Tabernacle Choir - "Do you Hear What I Hear"
So here I am at the Grand Californian smack dab inside a Disneyland Park and I can't get out of the bathroom.Actually, I choose not to leave it. My wife doesn't need to see me cry on our honeymoon.
Christmas at the Grand Californian 2009
(Thanks to Mice Age for the photograph)
Tonight's Double Feature: Andrea Borceli
Gloria in Excelsis Deo-Andrea Borcelli
After being able to dry the tears I left to enter our room again. By then Jane was reading my Kindle so I picked up my telephone and got on Twitter.
Andrea Borceli-"Handel's Hallelujah (Sacred Arias)"
After half an hour just laying on the bed doing our own things and enjoying the quiet company of each other, my depression turned into my gut like a nasty skeleton key into paralyzing anxiety. I crawled onto the bed, laid down on my side and stayed there frozen.
It took two doses of Xanax before the anxiety subsided to a controlled state. At that point I was able to read. Yes, it took that much medication for me to be able to put two sentences together.
Cranberries-"Little Drummer Boy"
This went on throughout the evening. I'd be able to dose enough to get a specific task completed before I would freak out again. The anxiety didn't break until 1 am, four hours ago.
The good news is that it did break, and we have a few more days to enjoy each other's company before its back to the old grind. Let me tell you, though, I really wish Huntington's had decided to take a holiday.
Amy Winehouse-"I saw Mummy Kissing Santa Claus"
Merry Christmas
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.
As those of you who have been following my blog probably know, this holiday season has been extremely tough on me. I don't know what one thing it has been, but everything has piled on top of everything else until I felt like I was suffocating.
Finally, Jane called in late to work this morning and sat down to talk with me. If this sounds like it started as a parent to child talk, that's exactly how I felt. Then she just looked at me over our matching bowls of cheerios and asked me what has been so upsetting. I told her that I don't know, but I feel like everything, and nothing. That everything just seems to be piling up lately, and each thing seems to be bigger than the last thing I've moved off my plate. She finally asked me if I still had the marriage licence in the drawer where I had put it last week when it came in the mail. I told her I did.
Then she said she needed to go to work, and that she would see me at the Register at 4:30.
Yeah, why not?
I may not do many things spur-of-the-moment anymore due to my HD, that's okay. My wife seems to be doing enough for both of us.
Jane, thank you for marrying me.
Noel Paul Stookey-"The Wedding Song
Since I'm not sure about internet access at the Disneyland Resort (and its fireplace) , nor do I know if I'll care about the internet access, Merry Christmas.
Woke up in the middle of the night here after a few tossed and turned hours. Don't know if I'm that under-slept or just overextended but I'm wired out. My mood is irritable, but a scary irritable. I don't know this person and that scares me. If I had my way I'd be crying in a ball right now. I don't know what that's about.
Human League-"Things That Dreams Are Made Of (Kiss Sell Out Mix)"
I picked this out on purpose. I'm looking for a few cold, hard songs tonight. I'm going to my usual sources, The Future (pre-Oakey & Girls Human League) and the Human League. The simple reason is I can pull blindly electronic songs from this catalog.
I have no emotions. Its not that my mood is dead. That implies there is some feeling. I don't even have that. I have fear and emotional deadness. I feel completely out of control, yet since there is nothing to be in control of, I'm not scared of this state.
The Human League-"Sound of The Crowd"
So what is my fear of? Its of the fact I've never felt this way. I've read about people with HD getting to this point, and then I start crying. Even while crying, I still don't feel any emotion. Don't ask me, I don't know.
The Future-"Dancevision"
Before I went to sleep I dropped by my Twitter Account. Someone asked me how my day was. Instead of thanking them for caring (it was obvious from their question they were referring to my blog, to do that and remember it later to ask me is a nice thing.) I said "oh, that didn't turn out and I wrote a whole entry on it.. I looked down, shocked at my callousness and thanked them for asking. I was ashamed of myself, yet I could feel this disconnect from the human race.
Human League-"Seconds"
Did this even have an American Release? I don't think it did.
From "Dare"
Well, I'm going back asleep. Have shopping and mailing to do tomorrow as a Secret Santa. Thank you for reading. I may not feel better from writing this but at least I feel a member of the human race again, albeit one with a nasty disease that's attacking my emotions in one sweep.
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.
"Where R U?" asked my phone silently this morning, its Text Message Screen flashing briefly while I was in my bathroom. On the other end of the line was my neighbour and friend who lives down my street. He was going to drive me to the out of town gathering. The back of my mind had confused 6:15 to 6:50 am. My neighbour had driven my darkened house but not called me. If he had, at least he would have received my just awakened voice or my voice behind running water. The house was darkened in the front, but not the back bathroom where I was. My phone is on ringer but text messages have only vibrated since I first bought it. Since I hate hearing the same sound several times a day when a text message comes through I've always left it in this default. Today was the first time where it would have mattered whether it rang out loud or not.
Paul McCartney rarity-"I'll Give You a Ring"
Had a friend who owned the rare clear Japanese Yellow
12" vinyl disk. B-side of "Take It Away".
So when I went by his house at 6:50 he was gone. I called, got his machine left a message as I walked home. I drank the rest of my coffee, downloaded a couple free Kindle Books for my Android (my Nook App is still acting up, not allowing new downloads days at time) and my eyes hit my lunch bag. You see, last night at 9:00 pm my friend told me the time he was coming and that I needed to brownbag a lunch. Unlike the usual gatherings, they weren't serving lunch. I didn't have time nor the food to put together that quickly so I hit the deli service at the local supermarket and proceeded to make a nice deli sandwich with fixings for the long day. I had been eyeing that lunch since I made it.
The Carpenters-"Rainy Days and Mondays"
I felt like crap. Here I was, didn't know why but my ride had taken off, and I was stuck at home with my lunch next to me on my bed. On went the computer. I got on Twitter, noticed Greg Mitchell, one of my current favorite Non-fiction author,'s book on the Death Penalty was free on the Kindle for one day only. I quickly downloaded it. Then I picked up my phone, opened the book and started to feel sorry for myself this cold and lonely morning where I'm already really tired from the long day ahead with little sleep.
The Beatles-"For No One"
So I proceeded to drink another cup of coffee while I waited for my friend's return call. When it came later this morning, he was almost at the destination and let me know I had called when he was already in Los Angeles County. "I wouldn't have been if you called all along" I mumbled but only loud enough for myself to hear. After hanging up and barely avoiding the guilt trip in his voice I wasn't happy. How dare he try to pin this on me by saying he drove by my house slowly and it seemed darkened. It wasn't until after this call that I noticed the text message blinking. "Where R U?" It asked at 6:22 am. "On the toilet," I replied to myself as I saw the time stamp on the message.
The Bee Gees-"You Should be Dancing"
Well, that call followed by the discovery of a text message brought me to awareness of my friend's actions, only not. What I had become aware of was the fact we both may be in the wrong. I can live with that. So the next big question was what to do with my new caffeine fueled day ? The answer was staring me right in my face. I had Mitchell's new book and my sack lunch. Let 'er rip open!
Cher-"If I Could Turn Back Time"
Now that my lunch is near finished, my book being charged, and my Pepsi half gone I'm ready to curl up for a nap. I may be loaded to the gills with caffeine but my full tummy, sleepless night, and good book were exhausting enough, in a good way, to relax me. So pajama time it is. I may just get some sleep. And if I don't? Then book time again it is. There are worse things around & its nice to be able to read fairly well again. That was one symptom of my HD that slightly "improved" when I stopped taking my old mood stabilizer. You know what else? When I was walking back home earlier this morning I realized how write my fiancee was about wanting me to stay home today. I really am not ready to be gone for a whole day on an out of town adventure. That would be pushing my recovery a bit much. Hopefully next time I'll realize this before I make the plans to go.
[SPACE] The Final Frontier...
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. Just don't text me expecting a drop my hands reply.
I was invited to an out of town meeting tomorrow and I'm going to attend. I haven't told my fiancee yet and I know she's going to raise hell.
This is how I'd see it if the shoe was on the other foot. I'd be really hurt. Here I was taking care of her and as soon as she feels half decent she's willing to run off at the first minute, forget how my concerns, since her only concern is that she wants to have a good time.
Roykopp - Happy Up Here
Looking at it that way I'm feeling really bad about my decision to go. On one hand I really just want to get out of the house, even if it means leaving early and getting home late. I'm willing to take precautionary measures including drinking Gatorade in place of soda, a lunch I can chew in small controlled bites so I don't swallow it the wrong way, and isolating myself away from the others including meal time.
Okay...Time to pull out those scales of judgement.
So the question is...Is this an acceptable risk? The off top answer is no. There is no positive. Then the only positive is what I term the mental health factor. So lets weigh that in. What opportunities does this activity give me that I don't get with others? People interaction is good, as is brain activity. I can get both with other activities but this group, which is a workshop for non-profit board I serve on, is a good way for me to get both at the same time, and a really high combination of both.
Now on the scales the answer is "I'll ask my fiancee what she thinks is a good idea" and hope she doesn't kill me with one of my own heavy books LOL.
First Half of today's Double Feature
Mormon Tabernacle Choir-"Gloria"
And another Christmas Favorite:
Mormon Tabernacle Choir-"Hallelujah"
Next up, Monday I have to make an appointment for a swallowing test; I'm not looking forward to this, nor the therapy that I'm sure will follow. After all of this, most likely I'm looking at a feeding tube down the way a bit.
Elvis Presley-"Silent Night"
I've never been a fan of artificial nutrition. In fact my current advance directive has "No feeding tube" or its cousin in three separate places. I've always assumed by the time I would need it my mind would be fairly blown and my body was obviously following it closely. At that point to deny me a food tube would be a form of passive euthanasia. Well, now it appears that my HD is taking another tact, continuing to hit my emotional mind but also my GI tract. Meanwhile I've started the DNA analysis at the IVF clinic and my fiancee has her mind on our upcoming marriage.
Gene Autry-"Rudolf The Red Nosed Reindeer"
So my question to put on the judgement scale is 'Should I tell her about my concerns and feelings or continue to act that everything is going fine, hoping the wedge between us isn't too deep.
This one seems answer itself. I need to tell her. If I don't she will notice I'm holding back from her. I've never been good at that. Its a guy thing. Women can always notice this and pry it out. Its not a question of if, but when. If I want it to be on my terms I'm going to have to tell her. The key is to remember I've put her through a lot, I don't need to make this a whole 'nother issue entirely. Add it to my concerns about pneumonia or something.
Annie Lennox-"God Rest Ye Merry Gentlemen"
Okay, lately I've been enjoying listening to Roald Dahl. Tonight I'm listening to The BFG. Dahl is one author that's constantly good on the audio-books I've heard. The other is Fleming (Ian Fleming). Its odd as both authors are associated with James Bond. Fleming for writing the original set of novels and Dahl for writing the script for the film Live and Let Die
Well, last night I posted my blog entry and went out for a smoke before heading off to a very early bedtime. I was questioning a certain paragraph and whether I should have included it during that walk. Figuring I was blowing it out of proportion never entered this OCD mind. So although no one pointed it out to me its still haunting me through today for more than the bad two and a half of sentences it really is. I scanned the entry earlier to try and fix the typos in spacing, which by nature won't go away, and "it clutched my mind." It really won't die. Now I know its a stupid OCD thought at this point and so it won't be erased.
J. Giles Band-"Freeze Frame"
Unlike Linda Ronstadt and Glen Campbell I knew these men were American. This was a big breakthrough for me, musically. I was aware that my taste in music was becoming more expansive than I had first realized. Interestingly left and right new music was surrounding me in England. It was a wonderful time to be a preteen.
Juice Newton-"Angel of The Morning"
I had a full day today after a strong night of sleep followed by a nightmare. After waking I had a couple cups of coffee and then made lunch, showered and got dressed. After dinner I went out to my book club. It was a nice Friday. While there tonight I had half can of Dr. Pepper. That was the dumbest think I could have done. With my swallowing issues, caffeinated soda is not what I should be drinking. I know that so why did I do it? The action felt like those of a small child. If Mummy and Daddy say I shouldn't do something then I want to do it. If I know I shouldn't be drinking that can then I want it twice as badly.
David Naughton-"I'm a Pepper"
I think I'm also tired of being told what I can or can't do. I can't eat certain foods, I have to be careful when I do eat now so my food doesn't go the wrong way again, I've got the marriage and all that legally entails (including probably losing my income as 'we' will make too much to keep my disability payments), start turning my study into the baby room aaaand okay, end of whine now (but not before I complain that the family cat bit my hand so much last night it looks like The Exorcist).
From Airplane-"Jive Talk"
"Honey" "Yes Dear?" "Will you take me to see Airplane tonight?" "But we saw it last week." "If its finances than I'll go to a matinee" "That isn't the issue dear, I've just seen it so many times".
Yeap for another week Mum dragged him off to the movie theater. Why? Because of her anxiety Mum rarely wanted to leave the house. If she wanted to enter a crowded cinema well then, let her go! Still I wasn't allowed to go, they thought this film was too adult oriented for this little boy. I only saw a handful of films with them, the Sean Connery Bond film Never Saw Never Again being one that I easily remember.
Never Say Never Again Trailer from Mi6 Forum
Just watching that brought back a flood memories of my parents and me. Really great memories of being surrounded around them. I'm going to leave on the thought of holding onto my Dad's hand while Mum grabs my arm softly in hers. A time when I felt carefree in this world, when I was still young and thought everyone aged naturally and I'd have parents for what seemed to be forever. And in a world that I'd never heard of HD.
Please forgive for being all around the place. I'm trying to get sleep and rest while I can and then gather enough energy to repeat the cycles. My life's been this was since I came home. I'haven't done much outside of change my clothing and watch the last few days, then its rinse and eat.
I see little elfin tracks on Jane's side of the bed and it makes me feel really good that somehow over the last months I can sleep with her that close to me.Sometimes I'll even wake up with a washed face. It makes me feel, well, appreciative.
This pneumonia really took me out for a month. First part of November through the middle of December. It just would go in hiding for a bit and then come out again.
Al Stewart-"Year of the Cat"
I really don't like that I got this sick and need to prevent it from happening again. That means its time for the nasty swallowing test. I didn't think I'd have to do it until much later on my disease progression but clearly for me this is not going to be the case. I can't put it off because to do so may just kill me and after the last month I've realized that this is not an easy way to go.
In one of her latest blog entries she writes eloquently about her last day of "not knowing" and all of her feelings. It brought back memories of being tested down at the medical centre earlier this year. If you haven't read the long version, I went down to get my CAG Repeats. I'd already been diagnosed with HD several years by then but like a mad scientist I wanted these little numbers that would say so much about my remaining quality of life. . There is a point when two much information sends my mind off the rails. For me, having the blood draw before I was symptomatic would have been one of them. I couldn't do. The other was during the process of obtaining my CAG repeats. That day, sitting on the Malibu Beach with my first official positive genetic test in m my hands, I was an emotional mess. Even though I knew what the paper said and had read it in the office it was a OMG moment when my whole world seemed to change and it was never going to come back to my pre-tested mental state no matter what the result.
Chrissie Hynde-"Angel of the Morning"
with Cheesy Abba Graphics
It fell onto my girlfriend's lap on the beach to try to get the pieces picked up. I can't blame the testing centre they can only work with what I presented them with and looking back there wasn't much I gave them to work with. My profile screams "closed minded Brit" or as Jane later described one tester "She seemed shocked a self described British librarian aide could step off the paper into her office."
Elton John, Billy Joel - "Piano Man"
Yet that's exactly what I did. From that point onward it was me versus them.I'll be damned if I choose to work with them in their treatment of me. I basically gave them the therapeutic middle finger, There was a period of time when I dreamed that the lab found me so hard to work with that they wished I canceled my upcoming visits. This war got personal, quickly.
Human League-TOTP -1981-"Love Action"
There is only one loser in an initiative like this.
The Huntington's Disease patient loses
Every single time.
"I believe, I believe what the old man said
Though I know that there’s no lord above
know I believe in love
I believe
I believe in me, I believe in you
And you in truth though I lie a lot
I feel the pain from the push and shove
No matter what you put me through
I’ll still believe in love"
Techno Trance - "Tainted Love"
It is so easy. with diseases of of the mind, to let them them take control of you. This is something we need to be constantly aware of. I know for myself, it can grab me for days before I realize what is happening.Then I have to have to back up and repeat my actions with the appropriate actions and frame of thought. This sounds like it takes a lot of energy and it does. That's why its so important that I do it right the first time.
Sometimes it can be as simple as saying, as I did yesterday to someone, "I don't think today is a good decision making day for me."
As for today, I'm actually feeling well enough to go out briefly to the store and grab some soda. I'm completely out of my drink and want to buy some more. Then I'll bathe if I have the energy and eat before going back to sleep.
I'm working to learn to take care of myself and pace myself yet not to take it too easy. Its a hard road to follow. It is one that last two weeks have taught me are life and death for me.
Depeche Mode-"People are People"
I'm climbing briefly out of the trenches here for a trip down memory lane. My one and only man-crush David Garen. My poor father, if I knew the heart attack I was giving him.
