Tuesday, 31 January 2012

Letting Go

I'm sitting here with my cat next to me sleeping. She's sixteen years old, with arthritis and early dementia. She has let me know she's getting ready to go.

Real Life-"Send Me An Angel"

She spent all of today on the heating pad and could barely lift her head. Tonight she got up to eat some wet food, groomed herself and used her box. Then she fell back asleep. Her eyes have lost their sparkle. 

Howard Jones-"No One Is To Blame"

I've had my baby almost my entire life in the States. I got her my first year here and she has seen more changes in me than anybody. She's survived three apartments before my house, as well as two girlfriends before my wife. 

She saw me long before I started showing symptoms of Huntington's, and when I was a lot less stable in my personal life. She saw me stop drinking and finish my education. 

A twist on the Double Feature:
Today I'll be playing the same song by
both songwriters.
First up Terry Hall with Fun Boy Three
with the 1982 hit song in the UK where it went to number 7
Fun Boy Three-"Our Lips Are Sealed"

While they were in the studio, co-songwriter Jane Wiedlan and company
were having a hit over the pond in the US. 
All the way to number 15 it was:
The Go Gos-"Our Lips Are Sealed"

This is one song that always takes me back to a softer, easier time. When I was a young boy and had a carefree life, no real responsibilities and both of my parents were there to support me. A time when I hadn't heard of Huntington's Disease and life seemed like it would go on forever.

Falco-"Rock Me Amadeus (Symphonic)
Does this man have a stage presence or what?
I never knew before tonight. 
The mix of electronics and the orchestra is amazing.

This is another song I associate with carefree times. I went to the club and this was always playing, It was crazy to be dancing to the American version of a song in German by an Austrian but we sure rocked the house along with Falco and Amadeus. 

Eurythmics-"Love Is a Stranger"

I think a large part of my early grieving is that when my cat goes I will have lost the last tie to the period in my life when I was quite a bit irresponsible, when the world was at my feet. By letting go of her, I'm letting go of that part of my life to an extent.

Pet Shop Boys-"Opportunities(Let's Make A Lot of Money)"

There is video footage of them performing this song live. It is only the second live performance I'm aware of in which the keyboardist uses the Fairlight CMI. That was a very expensive piece so most bands did not tour with it. The only other place I'm aware of that I've seen it live was The Cars' performance at Live Aid.

This last song really encapsulates how I'm feeling these last few days. I'll leave you with Depeche Mode.

The Rumour
This is a mini-movie made to Depeche Mode's Blasphemous  Rumours
"I don't want to start any blasphemous Rumours
But I think God has a sick sense of humour
And when I die I expect to find him laughing"

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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Sunday, 29 January 2012

Being a Big Brother

[Sis: when I told you I'd have this up by morning, I meant yours, not mine. The sun is getting ready to shine here. Time got away from me while listening to Chapin. Sorry 'bout that.]

These songs were picked as they are some of my little sister's favourites. In case you can't tell, she is a fan of 70's guitar rock the same way I'm a fan of 80s synthpop.

Cat Stevens-"Morning Has Broken"

My sister called me at 9 in the evening my time. Its five in the morning in Sheffield so when I see her number on my caller ID I pick my phone up while I'm putting my butt back down. 

It turns out she had a horrible nightmare and needed to talk. She thought I'd be a better ear than her friends on this particular subject. 

Gordon Lightfoot-"The Wreck of the Edmund Fitzgerald"

She had dreamed that she had tested positive for Huntington's Disease.

And she was scared. 

Because it might be true.

Arlo Guthrie-"City of New Orleans"

Like my sister, as the son of a parent with Huntington's Disease Arlo had a fifty percent chance of dying from it.. Luckily for him, he did not inherit the gene.

Gordon Lightfoot-"Sundown"

Did you know Gordon wrote this 
about his then-girlfriend Cathy Smith? 
The same Cathy Smith that later gave
John Belushi the Speedball that killed him?
I had no idea they were an item.
You can bet Gordon was lucky he dodged that bullet. 
Sis, these are the important things
 you need me around to tell you.

So we talked about things the way brother and sister do late into the night when we're scared of things that go bump. Things as wide ranged as my wife's pregnancy to the Occupy Oakland protests earlier in the day ("I thought you said they had freedom of speech?" she rhetorically asked me) which turned into a conversation about the press laws in England. 

Today's Double Feature is the late, great Harry Chapin
Harry Chapin-"Taxi"

Harry Chapin-"Cat's In The Cradle"

Then we started talking about the lack of ethics the press have in the UK. She wanted to know how the press avoided that here in the states. I told her they don't avoid it, but the difference is that reporters will use these tools against each other or even  against their own publication, as we saw here in Santa Barbara with the News-Press. Knowing this, I don't think even Star Magazine's ownership would dare attempt to hide something like the UK's phone hacking scandal. 

"Weird Al" Yankovic-"Midnight Star"
By the time I notice the 80's sound feel to
Weird Al there's a problem.
I've been playing far
too many "hits from the '70's"

By the time we were discussing the Scottish independence referendum our yawns were falling over each other. It was time for both of us to call it a night.

Manfred Mann's Earth Band-"Blinded By The Light"
This is a video I've been saving for months now,
waiting for just the right moment to share.
You see, its rare 
 you can actually hear the lyrics.
*Cymbal Crash*

So Sis, next time: don't wait to call.
Trouble Me
10,000 Maniacs

Friday, 27 January 2012


I'm tired of...

leaving the door unlocked

forgetting to feed the cat

not being able to bite into a hamburger

misplacing my phone because I forgot where I put it down

making typos because my fingers are shaking and not noticing them when I proofread

having to put a book down because I can't keep the thoughts past two sentences

being unable to express my love to my wife

curling up from fear and anxiety

knocking my glass of juice over

realizing when my mother committed suicide she wasn't as insane as we'd always believed

jumping a mile when my mobile vibrates

crying at the drop of a hat

wondering halfway through a movie "how did I get to this point in the plot?"

not knowing what letter comes after "L" in the word halfway

relying on others to get to people, places and things

using cliches because they are easier to remember than thinking of the next word of a thought.

I'm tired of... 

Huntington's Disease


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Journey of Life

The heat wave has extended to today. In fact, its actually warmer today currently at 77 degrees. Yesterday both Jane and I were in horrible moods from it so today we are remaining inside in the coldest part of the house.

Talking Heads-"Burning Down Te House"

Its three in the morning and our house is filled with laughter. My wife found a really funny radio host who is going on about Michelle Duaggar. Despite the heat, there has been so much laughter in our house tonight. Jane took a nap, she gets tired easily right now, and then when we woke up its just a bunch of fun. First I watched the Charlie Sheen Roast simply to enjoy something where I can't think.

Here comes today's Double Feature-Thomas Dolby
Thomas Dolby-"Hyperactive(12")"

I'm really noticing a difference when I  don't take my Namenda. When I don't take it,  I can barely read. Someone asked a few days ago if I noticed a difference. At that time I said I didn't know. After missing a day I can say that I really do notice a positive change. 

Thomas Dolby-"She Blinded Me With Science"

Since I'm not able to read well and this heats puts me in such an awful mood I decided to watch the dumbest comedy I could find. That would be Charlie Sheen's Roast which is available on Netflix streaming. I surprised myself by laughing through most of it.

One thing about Huntington's is it can make your emotions basic and in your face. I was very irritated earlier today, and that often turns into anger. That's why I turned on that show. I can't make my mood, but once its there I can do things like watch that show to try and mute it or even switch it to a more positive mood.

Harry Nillsson-"Everybody's Talking (full movie version)"

As someone with HD, I now have mild chorea. It can become visible when I'm walking if I'm having a bad day. Then everybody is either looking at me or turning their eyes to avoid me. I hate that. 

My symptoms haven't been getting any worse but lately I've just been feeling like I'm a burden on others. Even things that are part of my normal life are now affected by HD. From having to shave with an electric razor to cutting up my food so I don't choke I really am feeling the reminder of my eventual death in nearly everything I do.

the best part of Star Wars:
John Williams-"Star Wars Theme"

When I get this introspective my wife reminds me that I'm still independent and that she loves me the way I am. Still at times I don't feel like I'm the same human being as the normal healthy people around e. I feel separate and different. 

Orchestral Manoeuvres In The Dark-"If You Leave"

Sometimes I feel so lousy lately that the only thing that makes me look to the future is our baby. My therapist says its not depression but introspection. She said that I'm finally facing my HD head on, and not hiding and pretending its better than it is. She said that alone can not only cause the introspection but acceptance. 

Simple Minds-"Alive and Kicking"

She talked about the steps of dealing with death. According to my therapist I'm going through these five steps, and by accepting my death I'm also accepting my illness. According to her I've been in denial for many years. I don't know if I did stay in denial all that time but I do know I'm learning a lot about myself any illness from the point of view inside my brain. This is an interesting theory, and I can see how she got me here. Its so weird to accepting what is wrong with me instead of pretending it doesn't exist and all is well.

Another one I played was "oh, I had X symptom but it really isn't that bad". Now I am working on just being able to admit it and go on. 

Sparks-"No.1 Song in Heaven"

Another point that I'm realizing is that by accepting my death I'm also accepting my life. Now I can see Jane's pregnancy is such a gift. Its something that I look forward to. Now I have the mental junk out of the way so I spend time thinking about my future. I can sit down and really enjoy something just for the sake of enjoying it. It doesn't have to have any other reason to be done, but my action is just there for the sake of it. If I'm listening to music maybe, just maybe, it can be for the simple fact I find enjoyment in it. There doesn't have to be a higher meaning. 

So here we go, I'm choosing this song because when I hear it I think of my life. From my birth until my death its the long way home-I'm here for the journey, and I am letting go to enjoy every minute. 

SuperTramp-"Long Way Home"

I'm going to get some sleep, and I hope we continue to cross paths on this journey.

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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Thursday, 26 January 2012


Congrats to Liverpool for showing Manchester United where to put it. Liverpool is headed off to Wenbley for the Carling Cup now, and MUFC is left licking their wounds. Its about time!

The closest American equivalent to this bitter rivalry is the Yankees and Red Sox- times ten.

Donna Summer - "I Feel Love"

Yesterday was very crazy From dealing with the test results to errands to a seizure it was just insane. 

Last night after coming home from a walk, I proceeded to enter the bedroom, made it halfway onto the bed before I had the seizure. It was set off by a street light. The light was nearly dead and flickering very fast. So clearly now I know flickering lights are not my friends. It was most likely the energy saver bulb that set off the seizure in the bathroom. I'll be seeing the neurologist next week but he told me on the telephone today to just hold still and avoid these lights. 

Yeah Doc. Really I don't mind hanging out inside my house or on the street before dark.

Joy Division-""Atmosphere"

The seizure threw me into such a deep sleep that I wasn't able to get more rest in when bedtime came around. I finally fell asleep at 6 am, only to wake up four hours later.

The Human League-"Rock 'n' Roll "

Today was a very long day. I woke up far too early and couldn't get back to sleep. Ever since then I've been on the run. I had to go out three times, which wasn't a problem except I kept forgetting an item, so I'd have to go home to get it and leave again. On the third try a woman with bone cancer fell out of her wheelchair almost at my feel. The poor doll, another man and I helped her back into her chair, made a call to her husband and waited until he arrived to take her to get the bump on the head looked at. 

Human League="Open Your Heart"

Well, its three at night, I'm finally getting sleepy and I'm also getting that strong double vision again. Maybe someday I'll find out what that's about. Until then...a total random song for my friend Larry:

Beach Boys-"Surfing USA"

I'm Paul Ware and I'm still here kicking up the sand.

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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Tuesday, 24 January 2012

Testing in Sheffield

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.


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]

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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Sunday, 22 January 2012

Strangle The Disease

Well, its another Sunday so its my day to post. This last week has been very interesting. I am now on my three month break from work. I had not expected to become pregnant my first round of PGD/IVF so I took some leave to relieve my stress level. Now that I'm going to have the baby I only hope monrning sickness won't distrub me during thiese months.

My husband has come home from his stay in the hospital. Several months ago he had also been hospitalized for pneumonia. That took three stays before it was properly diagnoised and treated. As a consequence I made sure they felt his seizure medication level was stable before releasing him.

It was not so easy. He wasn't home for 24 hours when he had another seizure. I was not happy but he raised his medication dose and has been seizure free since. That has been a relief.

We have another issue that is causing us stress. Paul's primary care doctor was arrested. Not only did the government take all the patient files but they also took the computers. My husband now has to find another primary care physician to take him on. This is hard to do without being able to show a recent medical history. All my husband has are his prescription bottles.

Monday I will be making some calls to see who can fit him in. Its hard when you are dealing with a chronic illness like Huntington's Disease. Many doctor's do not want to see a patient that often for maintance treatment. They want to accept your insurance money monthly and see you once a year for a cold. That's what I liked so much in Paul's former doctor. When the hospital first released him after a twelve hour emergency room visit, Paul's fever spiked. I called the doctor to let him know I would need insurance approval for another visit as my husband's temperature was at 104. Dr. D met us in the hosptial parking lot and he went in with us to make sure Paul was treated properly and not released again.

Yes, I will be making the calls. One of my husband's HD symptoms is a lack of inititive. He doesn't have get up and go. Part of this is from his anxiety. Another part is just the part of his brain that tells us we need to start doing something is now diseased. It is hard to get him to do something, but once he starts there is no stopping him.

Here is another example. I have literally seen him just staring at the computer because the inititive to open up his Kindle to read it is simply not there. He wants to read, he knows the book and page he is on, but he will not open it to start. If I turn it on and place it in his lap he starts reading like a madman. This is because the part of our brain that tells us we need to go from the thought of doing something to actually doing it has been attacked by HD.

So often it is simply easier for me to get up and do what needs to be done. It pains me deeply and I feel as if I'm taking away his independence. At times like this I remind myself I'm not doing it, it is the disease.

This has become worse with his phenobarbital. He simply is too tired to do these things. To make it worse, he is currently to limit his activites and stimulii until we determine what sets off his seizures. He has reintroduced his telephone's web browser, his computer and now the television. He is not to go out to see a movie, enter an establishment that uses florencent lights and many other limitations. I have had to replace our energy saver bulbs with traditional iredencent lights. Somedays I feel as if I have done everything. That is what a full time caregiver does, and I am on that road.

Sometimes it feels as if it will never end. Yesterday I went over to visit my parents. Between working extra hours, the IVF hormones playing games with my emotions, and taking care of Paul I  haven't spent the time with them I would like. So last night we played catch-up. It was wonderful and I didn't leave until 11 at night. When I arrived home my husband as in a very depressed state. I did not feel comfortable with him feeling this way and so I began to talk to him. He told me about an incident his in late teens that still haunts him. Until last night I had not known the details.

After laying next to him (and his laptop) I could not comfortably rest.  I offered to be a lending ear and we talked until three a.m. He asked me for help looking at some information on the internet and I culled through over fifty links on the internet for what I felt was best to introduce this incident. It was only then that I felt safe to sleep.

After a long night at my parents I would have treasured the ability to come home and sleep. That was simply not to be. When this happens I want to take that disease in my little hands and strangle it to death. Make it go away. Bring back the  peace we should have in our home. At the same time, I know I should be thankful for all that HD has not done to him. He can still type on his computer, and talk and eat.

For this time we have together I am eternally grateful.


I was up all night, but able to get a six hour nap in today. I woke up to an empty house at five in the afternoon as my wife had gone to her parents for the evening. After playing several hours of Depeche Mode I  settled on a documentary on the Hillsborough Tragedy. For those that don't know, on the 15 April 1989 96 Liverpool F.C. fans died when the South Yorkshire police did such a poor job of crowd control that fans were pushed through a gate to their deaths.

Paul McCartney, Holly Johnson & others-"Ferry Cross The Mercy (Hillsborough Appeal)"

The tragedy occurred in my home city of Sheffield, when I was 19. Watching this documentary has brought back a lot of hard feelings I've hidden through the years, and they are all coming out tonight. When I'm home. Alone.
Shankley Gates, Liverpool, Merseyside

Knowing family friends who were police that day (and later blamed for the disaster), and others who were fans of Sheffield Wednesday which plays at Hillsborough, and others still that served in other various helping capacities really brought this mess home to me. 

King Edward Hospital, Sheffield, South Yorkshire

I was employed at a hospital and although I wasn't on shift that day I went in to work, knowing they would need any set of trained working hands they could get. I went to my superior and asked to send me where I needed to go. That's what I remember most about Hillsborough. It brought out the best, and worst, in mankind.

Northern General Hospital  A&E, Sheffield, South Yorkshire

Instead of bringing in people who were going to have minor surgery that day I was attempting to help sort some of the 700 wounded (most of whom never appeared at hospital). Telling family members that no, I hadn't seen their loved ones and direct them to the makeshift morgue/triage area at the gymnasium. Recognizing these family members as they kept coming back and calling hour after hour hoping for a different answer. By far we dealt with more distraught family members than actual victims. All the while I hadn't yet dealt with my own feelings of my mum's illness and death I was trying to help others deal with theirs. 

Fans pulling up fans as the gate to the pitch is opened

Looking at the clock its now 11:30 in the evening, Jane's home and tucked and I am feeling all of this like it is yesterday. My emotions are extremely raw as a consequence of having Huntington's which makes it hard for me to sort through and process my feelings. Often I use other's experiences as a guide to how I should behave and feel, tonight I don't have that. What do I ask, Jane how do feel when thinking about your feelings when you dealt with hundreds of families looking for their loved ones? Chances are she hasn't.

My psychiatrist tells me I suffer from four issues these days, in no particular order: post-traumatic stress disorder from discovering mum in combination with dealing with Hillsborough, survivors guilt over these tragedies, Huntington's Disease, and clinical depression/anxiety. Of these, the survivor's guilt can be helped through talk therapy.  Huntington's Disease,  Anxiety & Depression can be medicated and PTSD can hopefully be helped through Cognitive Therapy. 

Is it any wonder that I suffer from insomnia, have attachment issues and other mental health issues? Its days like today when I am so grateful I have Jane in my life.  It takes a special person that can put up with all of these issues.
Hillsborough - The  Documentary pt. 1/6

Special thanks goes to Jane Rudd Ware for going through the myriad of links to find the ones that would be most informational to outsiders to the tragedy. 

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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