Late night questions

Its four thirty in the morning, I can't sleep and thoughts are racing through me head at lightening speed. I'm trying to get them written out so hopefully they'll go away. I know sometimes it helps. I may or may not publish this, either way it won't be my main blog entry.


My mind won't settle. If its not tripping on my mum its tripping on a dear woman I know through facebook. She suffers from JHD (Juvenile Huntington's Disease) and its been very hard for her the last few days. Finally today she had to be taken to the hospital for her symptoms. Those that don't know JHD  causes different and more severe symptoms than HD. Luckily they were able to pull her out of the event but it took two hours and she had to be poked in a main vein to get her treated. 

Pain-Eleanor Rigby 

Warning-Goth/Metal

I saw a video today of a local Occupy Protest. In this video was a woman receiving a citation and another man. Both of them I know personally from outside the Occupy movement. It upset me to see them looking at possible arrest for doing nothing but meeting in the daylight in a public park. Sometimes I get so angry at this crap. These are as good of people as you'll ever see. So society craps on them for giving a $hit? This video brings all the news I've seen and heard about people abused by police to a new light, now that people I know are affected. Does that make me selfish or human?

Hair Chorus-"Walking In Space"

Third, I have my godson's gift packaged and ready to mail off to the UK today. Only problem is I don't want any contact with his mother after what she told Jane yesterday. Would you? Yet I don't want him to pay. This particular gift is very personal however, and I don't want to give Kris any ammunition for the future.

Paul McCartney-"Put It There"

I chose this song because of the nature of my relationship to Kris's son. I don't have to be his father to have that type of relationship. My long distance mobile phone bill is living proof of that. Yet he's worth every cent and I'd do it all again in a heartbeat. In fact, he's already on our wedding invite short list. Ah, screw her and the horse she rode in on, he's getting the gift.

Fourth, as I've mentioned before I'm having a crisis of faith, or should I say non-faith. I'm thinking one thing rationally but my heart is questioning. I actually prayed for someone today. To whom did I pray I couldn't tell you but I still did it. That's something I haven't done since a year after Mum's death. It was a surreal experience but on the other hand knowing I'm not alone would be a nice thing too.

George Harrison - "My Sweet Lord"

Finally, this whole suicide thing is sitting on me. When does it stop being selfish and start becoming fair game? Or does it ever? Is it selfish to want to avoid an extremely long, protracted illness in which your brain breaks down until you can't control your body and you either suffer a heart attack or die of pneumonia? Oh wait, there's a third door, you can refuse a feeding tube and starve to death. Yeah, what a choice. Of course, if you are lucky, your brain has now broken down so much you aren't aware of your impending death any longer. Your emaciated body will welcome it. If there is a God, does this send you to hell? If so, that isn't a very loving god is it? Where does my will fit into all of this? 

Elvis Costello-Veronica

Do I have a right to chose NOT to end up like Veronica?

A friend brought up a good point tonight. Doesn't Jane have the right to know what I'm thinking or does she have to wait until my fear and depression get the best of me? If I really, truly love her aren't I obligated to share these thoughts with her so also has time to process her feeling? I think my friend is right. So this opens up a whole can of worms, such as when and where? How much detail? If I don't tell her, does that mean I don't trust her? Isn't trust an integral part of a relationship? 

Paul McCartney-Figure of Eight

which is exactly where my thinking is taking me tonight.

Crap, I'm starting to cry again. Enough of this, I don't even know what I'm crying over. I can't even tell if its a good cry or if I'm crying over something sad. I just know the feeling of warm tears running down my face. 

Please, I'm so tired of all this......Someone make it stop.Well, that's not entirely true. I haven't really been the same since I received my test results. Lets be honest, no one who gets HD at my age expects a CAG repeat around 150. Its not supposed to happen and it scares the crap out of me. Also it seems like lately my symptoms are just running rampant, and I know my doctors are concerned the way they are so drastically changing and raising my medications. That scares me too.

Well, I'm going to try to leave you on a positive note. I found this at @GregMitch's daily blog. 

"Video from the #occupy bat signal crew. Inside look at this 

series of inspirational video projections on the side 

of the Verizon building on November 17th."

G'morning

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option.

Jack Skellington, JHD and the Power of Love

Still here, still sick as crap. I feel on fire, my chest hurts from coughing so much and I don't even care that I'm not at home right now

J went home for a few hours this afternoon. She looks exhausted and she's not going to sleep very well here. So here I am sitting in the hospital with a bunch of good matured nurses in brightly colored costumes. My roommate and I watched the film The Nightmare Before Christmas, the Tim Burton Halloween themed claymation musical.

"What's This?" 

The Soundtrack from The Nightmare Before Christmas

J came sometime after the film and I woke up surprised to see her back here. She said something about not being able to sleep, and I understand that, remembering all too well when she was  on a cruise once.  That was a cruise, with nothing to worry about. Well, except those pesky ships known as the Titanic and Lusitania but they were flukes, right?

Titanic-The Sequel

Can I only imagine what life would be like if our roles were reversed the last few days? I'd be freaking out. I don't do deal well with things in my life being out of control.

The wink wink nod nod J is getting from the nurses when she asked when she must leave isn't helping my mind quiet down. She asks once and I feel it in the air like one feels the heat off a burning stove. I never thought I'd say this but I hate being alone. The only thing I hate more is not making the decision myself. Like I said, I'm a control freak in some ways. I hate having to change my routine. I hate being scared. I also hate feeling confused with a million pairs of eyes on me.

[insert here]I talked to my Neuro prior to dinner time and asked him if they were aware of this tendency of mine to be OCD. He said he had notified them of that portion of my medical condition. That's likely where I got that impression they are giving me a bit of leeway as long as I don't abuse the visiting privileges. It would make sense, as my RN's job would be easier as well. [end insert]

Oh, back to watching the film. Suddenly I started smiling broadly ear to ear, and my twenty something roommate asked what I was smiling about. I told him I was thinking of a friend of mine, Jan. Jan's daughter Keely had loved that movie. I met Jan online through Facebook's HD Community.


 Last year, Keely spent her last Halloween dressed as her favorite movie character, Jack Skellington. You see, she was dying of Juvenile Huntington's Disease.

To put it in basic terms JHD is HD on steroids. I have several people who suffer from JHD on my Facebook and they are my true heroes.


Off to sleep here, I'm feeling wretched.

Please take a few minutes and educate yourself on this rare version of HD. Highlights are mine. You can learn more at the reference link at the bottom.

What is JHD?*

Juvenile Huntington’s disease is a Neurological degenerative terminal brain disease…JHD refers to Huntington’s  disease that has an age of symptom onset ranging from infancy to 20years of age.

JHD  takes away all of a child’s abilities over time, so for a child it makes it hard for them to do simple things like go outside to play with their friends on the playground or even blow out their birthday candles. There are many milestones that these kids might never experience.
There is NO CURE.
Please help us find one.

Children who develop symptoms at a young age have a variation of differences in the disease progression than that of adult onset. Often the disease progresses more aggressively and their lifetime is anticipated to be anywhere between 3 to 10 years once diagnosis has been made ,However this does not always hold truth for all cases. Symptoms may come and go and the age of development and presentation of symptoms, combined with the lack of professional experience with these kids might be factors in untimely or miss diagnosis and lack of understanding the child’s full needs.  This can contribute too many difficulties for family and professionals caring for these children.

Only an estimated ten percent of people at risk for Huntington’s Disease develop the juvenile form, but it’s hard to get accurate numbers.  There’s so many more then that!! The younger the onset, the faster the progression. Which makes it harder for family, friends and even doctors to cope with.

A huge question might be when should we be concerned that my child might have JHD? Due to the variability and the truth that children  are developing and growing, and many other factors, the best answer would likely be “when there is an obvious change”, particularly one that is impacting the child’s quality of life. There is approximately a 40% chance that someone who develops JHD will develop epilepsy. Some ways to tell if someone may have JHD are if they have a decline in school, behavior issues, personality changes ,impulsiveness, memory loss, difficulty with comprehension, balance  or movement difficulties. The list could be quite long.

A significant question might be when should we test the child? This has been a controversial question. The response will vary dependent upon who you speak with. NO one wants to give a child a terminal diagnosis. A diagnosis is a quite serious step, keep in mind, diagnosed or undiagnosed if someone is symptomatic their genetics will not change. Taking the time to be sure everyone in the immediate family is as prepared as they can be is likely invaluable, while weighing the child’s care and needs for treatment in this process also. An experienced genetics and or pediatric neurology team is important in assisting the family along with involving a social worker with the HDSA.

It’s always important to not place expectations on a child with JHD, adapting their world to them, vs. adapting them to the world.  Keeping in mind that all changes are not necessarily permanent, a child may be unable to walk one day and then the following day walk again as if there had never been an issue. MOST IMPORTANTLY to keep in mind that just because the child is terminally ill with a degenerative condition DOES NOT mean there is no HOPE or that nothing can help. Diagnosis is a new beginning NOT an end.

Children with JHD are quite special young people with invaluable lessons to teach anyone who’s life has been touched by these kids.

*Source "Jhdkids.com What is is JHD?"   

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Madonna, Giorgio Moroder, mood swings and falling flat on my face in love

Mood 6.5

Good afternoon all. I'm having a really good day here. I had a chance to sleep in today and it felt good. When I woke up I feel like I do on Sundays. It was nice. I had my coffee and some late breakfast, a meal I've been neglecting lately. Then I headed off to the Shrink. More on that visit later. Still have a bit of anxiety but nothing like it was yesterday. 

I woke up to check my Facebook and saw this brilliant Huntington's Disease/Juvenile Huntington's Disease video by Brett Thomas. I'm passing it on and asking you to please  consider doing so yourself. Without educating the general public about Huntington's Disease people are misdiagnosed while their symptoms go untreated properly. This is unfair to those suffering from HD/JHD as well as those that care for them.

Huntinton's disease & JHD Awareness Video. from Brett Thomas on Vimeo.

Okay now on to some music. This first video you are either going to love or hate. Its a remix of Human League's Being Boiled. DJ Gcr has sampled a lot of other tracks in here. I dig it, but am interested in other people's visions when I listen to music.

Everybody Dance Now. 

I hope this entry doesn't seem fractured but I'm literally going back and forth between Old Grey Whistle Test on BBC2 and my videos for this blog. Bob Harris is interviewing Debbie Harry of Blondie.

I just love her hair in this performance. S-E-X-Y

She wouldn't have to worry about me pushing her aside.\

Errr... Back to the blog here. Sorry about that deviation boys and girls. She still warrant's today's double feature.

At this rate, this blog is  never going to be finished. Trevor Nelson's Soul Show is on now. My music here may be inspired by that. Here is the 80's classic by the Commodore's Nightshift

I rarely do dedications, but I would feel remiss if I didn't dedicate this 

to all the nurses at Hallamshire Hospital. Especially thinking of

those who worked the nightshift on the neuro floor when I 

was hospitalized. 

For those who don't know, I was the patient from hell. I didn't want to be on the neurological floor (who does), I had horrible memories from when  my mother was in the hospital, I knew what may be coming down the pipeline (brain degeneration until I die) and so I didn't sleep until utterly exhausted. I saw something more in every test ordered and how dare you make me take a sleeping tablet. How did I know that is really what is in that tablet? I remembered all the tablets they gave my mum. Thanks but I'll  pass. 

Imagine if I'd been admitted for something HD related.  I wasn't. I was there for a seizure from a high fever at age 14. They wanted to rule out a  few other conditions along with JHD which was done without genetic testing as it hadn't come into existence yet.

So night nurses, I thank you all. That was almost 30 years ago but I still remember my care there.

To explain it another way, this is what I thought was happening to me. I really saw the rest of my life ready to explode from within.

I'm not exaggerating. This is how I felt. 

Would you have wanted to be my night nurse?

I didn't think so.

Let's lighten up a bit here. I seriously do not want to go to sleep in a funk tonight,

Mood 4.0

The Seventies had some decent music.

Great actors in a great film. Its wonderful when your mood is in the tank...

Like mine is, right now.

DID I TELL YOU YET HOW MUCH I F'ING HATE THIS? I hate going from a good mood to a crappy one in the bat of an eye. IT SUCKS.

Thank you.

Now give me some Moroder and I might feel better.

Giorgio-you say? This is Kenny Loggins.

Actually Boys and Girls, Loggins was 3rd choice to sing this song

after Bryan Adams and Toto.

Although wildly associated with Disco music of the 1970's Moroder has won 3 Oscars 

• 1978 Best Original Score for Alan Parker's Midnight Express
• 1983 Best Song "Flashdance...What a Feeling"
• 1986 Best Song "Take My Breath Away" from Top Gun

Over the years he has collaborated with artists as diverse as Donna Summer (producing "I Feel Love"), Freddie Mercury (Soundtrack to "Metropolis") , Sparks (producing two albums No 1 in Heaven, and Terminal Jive), and Phillip Oakey ("Together in Electric Dreams" and Giorgio Moroder & Phillip Oakey)

Now that you know more than you ever wanted to about one of my musical heroes here is Berlin with a non-Moroder tune.

Berlin's Metro - extended version

Okay, this is seriously bad. I am coming back from a two hour anxiety attack that ended but the underlying depression is still here. 

Mood 5.0

Anxiety 8.0

Just took my night meds. After the first two nights, the Namenda isn't sedative at all. So that leaves me with having to sleep on Impramine and Lyrica. Those together aren't sedative enough. This is causing me to take Xanax to sleep. Xanax is a as-needed medication, I'm not supposed to take it to sleep. 

Which brings me to my visit with the shrink today. You know, when my day was still going pretty well? Well it went...well. I didn't tell him I'm taking the Xanax to sleep but did tell him I had stopped taking the Haldol after a couple days because it was making me lethargic and possibly making some other symptoms come out, specifically night kicking and during the day leg jerking.

 In fact, it was while I was on the Haldol that I fell down in soda aisle in the grocery store. Not too fun, let me tell you.

He wasn't happy at all about this but agreed to a trial of one week to see how continue to do without it. 

This interesting article was posted by a follower on Twitter Power From the People-Human Batteries.  

You know you're now an internet addict when...your girlfriend crawls into bed early with her book while you  finish up your blog. 

Mood 6.0 and raising

Anxiety 4.5 and lowering (I usually live in the 3s. I'm rarely anxiety free). I need to drop to three to sleep.

My understanding of this song is in burned in my heart.

This Tracy Chapman song resonates to me on so many different levels. It reminds me of leaving school after my O levels (now GCSE) to help my father take care of my Mum. I always wanted to run away from home and just keep driving. After her suicide that is exactly what I did, I took what little savings I had from my job, my life insurance policy and ran to America. I've never looked back. I visit home when I can, and I still vote but those are my only ties now with Britain. Oh, I also support the UK's Huntington's Disease Association financially with donations.

This is a sad song from a very sad movie.

Madonna's Live to Tell from At Close Range

If you haven't seen At Close Range run, don't walk, to the nearest video rental store. It is based on a true story and involves a troubled family including a father who is a burglar for a living. The premise sounds lame but it's actually a great character study. Christopher Walken, Sean Penn and Chris Penn all give staring performances.

On another level this song reminds me of how those of us with HD hide it. We hide it among ourselves and from the world. Often we deny it even when the symptoms are all there. In fact, some studies have shown that in fact denial can actually be a mental manifestation of the disease.

I love this song. It shows to me that Parker was able to get

a fabulous performance out of Madonna as Evita.

One thing I learned from this song is not to look down. If I do I'm only looking at the past and what good is that? I need to look toward the future and make my  own plans. that is one reason to this day I adore Electronica music. Its future moving my its nature.

Nope, I have no Irish Blood in me that I'm aware of 

however a friend of mine had a grandmother who sang

this song to her. Once it was played for me several times

it became a song with deep meaning for me.

For those of you who don't know the Spanish Lady is Death.

I've been thinking of death a lot lately. Most likely as I still have to make copies of my notarized living will and mail it off to the state so they have a copy. Its such a reminder to me that I won't be living a life of normal length, and that is fearful.

This album cut is just so moving. It reminds me that no matter

how low our opinions are of ourselves there are others

who care about us.

This is what true prayer should be, 

prayer for others and not ourselves.

This is one of the big issues I have with life in America

People are taught that they can do and be anything

yet you go through other parts of the country and its a

good dinner if you have beans and rice. 

Now I'm starting to relax. The backrub I'm getting as I type isn't hurting so I'm going to end with a couple love songs.

As you all know by now, this is the ultimate love song for the relationship

I have right now. I really feel that I won't be walking out the door.

In fact, I'm on the mortgage papers and own half of our house

I'll do it for you

J, You know I would

J, I love you.
I really do.
I hope I can spend the rest of my life with you
and tonight I'm finally going to tell  you that.

Mood 8

Anxiety 1.5

G'nite everyone.

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