Starting Over

Considering all that's happened lately, I feel absolutely normal.  I've been so busy feeling like a person with HD  that I was beginning to forget what its like to feel like a normal person. With all of these "normal people changes" happening in my life, its making me feel more like the average person on the street.

The Beatler-"Baby You're a Rich Man"

Jane finally signed up on Facebook yesterday. That means I can't walk by her humming "fool on the hill" any longer. Its also why I chose this song. If you've seen The Social Network, you know why. If you haven't seen it, run don't walk, over to your computer and log into your Netflix Account. and put Social Network  at the top of your queue. Its a really good movie.

In all seriousness though, I did post this on her FB wall at noon: *duck*

"The Social Network"

There is a photo circulating around the Occupy movement of Occupy Los Angeles. You know the old saying a picture is worth a thousand words? This one is worth two thousand. 

When I posted this photograph, several people pointed out the similarities between this situation and Kent State (as well as the Isla Vista riots). So I think its as good a reason as any to play this powerful song:

Crosby, Stills, Nash and Young - "Ohio"

Back to the Facebook thing, at first I was really concerned that Jane would be breathing down my neck, but then I reminded myself we are both adults. I asked her if it would be an issue if I blocked my blog posts from her. She asked if I could actually do that. I told her that yes, you can choose who can and can't see any post. Then she said that after the issue a long time ago where I had been upset over the fact she had read my tweets behind my back she would never do anything like that again, and the fact I can actually block her from seeing my Facebook blog posts made her feel better.

The Beatles-"Get Back"

On another note, Sunday night we talked some more about parenthood. 

By this afternoon, I've already gone to see the fertility doctor, as Jane had made appointments for both of us "just in case".  Outside of the threat of the "scary needle" it wasn't bad at all. Now all we have to do is wait to make sure this is what we both want to do. I know this is what I want, but it will be weeks to wait for the procedure. 

We also have the wedding to tend to first (how dare we!) , as well as taking quite a bit of time to make triple sure this is what we both want to do. We both agree that the worst thing is going through the process and then regretting it later. 

Neil Diamond-"Hello Again"

Last night we listened to The HD View online radio show. The subject was obtaining disability and it set both of us talking about the symptoms of Huntington's Disease and what the government looks for when people apply for SSI and SSD. Its sick that you have to suffer from physical symptoms before you are eligible for government assistance. Looking back now, I was very lucky that I was able to get on SSD for my Depression. It would have taken me forever to get on it for HD.

This weekend I began a nasty cough with a rattle so I'm going to lay down and if it doesn't get better by tomorrow I'll hit the Walk-in clinic.

Have a great evening, and eat anything more healthy than the Taco Bell I had for dinner.

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

Wedding songs and ...Parenthood?

I finally got some some sleep, or I could say I crashed and burned. By nine pm I was knee deep in sleep. It was nice!


My sleep cycle readjusted, and I woke up bright and early. The downside is that my telephone is still sitting at 61% charged. Oh well, so is life. Just another excuse to stay in bed and read.

Band Aid-"Do They Know its Christmas"

I remember this record. I bought it, brought it home and put it on my turntable looking at the sleeve. I was surprised at the intricate design with so little time to design it. Overall, it was a nice little package.

David Bowie & Bing Crosby - "Little Drummer Boy/Peace on Earth"

Later today is a Christmas Party. I left an open open RSVP with the host. As much as I love this particular group and the party- the larger the group, the worse my physical symptoms lately. Its something I know I should be confronting but I'm not necessarily ready to do that.

Van Halen-"Right Now"

I love this song. Its on my list of empowering music. It reminds me that I can be here doing what I need to for myself or some where else. I want to be here, where I am,  "Right Now".

The next three songs are the current contenders for our wedding. If you have a favorite, let me know which one and why in the comments.

John Denver-"Follow Me"

I had forgotten this one until Jane brought it up when we discussing music. I don't know where I was exposed to this Denver song, but it was soon after my arrival in America. All I know is that in my mind I had always told myself that when I find the woman that's in this song I'll know she's the one. When I met Jane...you got it, she was the woman in this song. I didn't tell her this until three years ago as I didn't want to scare her away LOL.

Next...

Stevie Nicks & Don Henley-"Leather & Lace" 

Its offbeat, but so are we. Its also speaks of a strong woman with her own life separate from her lover, and a man who is not afraid to show to her his emotions. It also has a silly, literal meaning for us. When we first started dating, she was renting a house with two other girlfriends. We now own that house and the two former roommates will be her matrons of honor. I literally "walked into your house, and knew I'd never want to leave"

This is the current taker for first place:

Noel Paul Stookey - "The Wedding Song"

Yes, it has some religious references but I don't have a problem with them. With my spiritual uncertainty at most they it will always represent a snapshot of my life at the time we were married. If I spiritually move in any direction I see myself moving toward the spiritual side not the radical atheist side. Jane has always been a spiritual (not religious) person and really loves this song. Also if we chose this song and either of us move away from that point of view before the ceremony we can always revisit our choice at that time.

On another note, before I play one last Christmas song, yesterday evening Jane and I had another discussion. She wanted to revisit the issue of having children. 

No real problem here. I've had a vasectomy and we both know the chances of having that reversed. 


Did I tell you she had done her homework?


Yeap, she brings to the table a pile of information on pre-implantation genetic diagnosis-in vitro fertilization treatments, and the fact her health plan covers this procedure. That's a mouthful, huh? What PGD-IVF consists of is conceiving embryos in a petri dish and testing the embryos for Huntington's first, then only implanting the ones that have tested negative. 


Also, in IVF they can use a little needle to extract the sperm (OUCH!), so having a vasectomy doesn't stand in the way of the procedure. 


Now, actually I don't have any problem with this, well outside of the needle part. Its just, well, I never thought that I could be a father. 

Paul McCartney will be our double feature today.

Paul McCartney-"Put it There"

Last time I played this on my blog it was

 about my Godson, as I thought 

that was the closest I'd ever be to having a child.

Have a dreamed about it? Actually yes I have. After Jane and I last talked about this topic I had several dreams about being a dad. Its something I'd love to be, but its just that this has always been a bottom-of-the-bucket-list-sort-of dream, you know? Now its one tiny, well more than tiny,  step closer to becoming a reality. 


I told her to go ahead and start what she needs to on her end, I'm good to go on mine. Her  mouth dropped open. I leaned over and closed it. She hugged me and then nearly passed out. She really thought there was a good chance I was going to say no go. I told her that she doesn't need to second guess me, if she thinks I'll say yes, she's probably right. And then I told her if she hadn't already made the appointment I'd  give her ten bucks because I know her that well. She admitted she had, that it was Monday and that's when I told her we aren't getting married because we don't know each other, after all. 

Paul McCartney-"Maybe I'm Amazed"

John Lennon-"Woman"

To to be a sneak I slipped this in her IPod alarm clock this morning. 

Here are two Christmas songs to lead you out this afternoon. They are as different as can be.

A Cold War favourite
Weird Al-"Christmas at Ground Zero"

Kings College, Cambridge - "We Three Kings"

Hope you have a good Sunday.

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

Day 3 No Night Sleep

This is the third day I haven't been able to sleep. Yesterday I was up until 9:00 a.m. and then slept until 1:00. Last night, up all night, and two nights ago the same with a three hour nap. What's going on?

Nina Simone-"Don't Let Me Be Misunderstood"

I was turned on to Nina by a friend who adored soul.

I've never been the same since the first day I listened to 

records with him.

At first I brushed it up to stopping my mood stabilizer but all over my Facebook and Twitter people are complaining of lack of sleep at night. Is there more to it? 

Credence Clearwater Revival - "Bad Moon Rising"

The first two nights we had high winds. Winds so high they literally blew headphones off my body and down to only God-Knows-Where. Less than 100 miles from me the San Gabriel Valley is expected to be without power until at least Monday.  Could it be these winds put me on edge making it hard to sleep?

Here's today's double feature, Arlo Guthrie.

Arlo Guthrie-"City of New Orleans"

Some of you may not know that Arlo is "one of us", meaning he lived under the specter of Huntington's Disease. Arlo's father was the well known folk musician 'Woody' Guthrie, who suffered from before dying of the disorder. This made Arlo an at-risk individual. To this day it would not surprise me to find out that he is one of those funding the private organization working to find a cure of HD.

Whenever I question my motives, I remind myself of how Arlo lives his life and I remind myself that I don't have to let this disease force me to live with a black cloud over my head all the time.

All 15 minutes of 

Arlo Guthrie-"Alice's Restaurant Live at Farm Aid '05"

My main problem with the lack of sleep is that it brings out two of my symptoms almost right away. The first is my depression. The second is my leg jerking. If I don't sleep for one night, the next day I'll be laying down and "jerk" out from my kneecaps. Sitting in a chair and "jerk" Its not pleasant at all, and it makes napping twice as hard. 

William S. Burroughs-"A Thanksgiving Prayer"

I spent a year with a friend's family on Thanksgiving so I wouldn't have to spend the American holiday alone. When this came on the television it was time for silence as their 65 year old grandfather watched it as some would stop to watch a televised orchestra play a well liked tune. It was clear where @MeekoDev got her sense of taste and culture.  

Red Hot Chili Peppers-"Under The Bridge"

I think these symptoms are more aggravating to me because as I'm getting my life settled at its new state and enjoying my new routine this comes through and reminds me that I'm not a normal person with a normal routine. It throws me off. The good thing in this is that I am seeing that there is so much left in my regular  routine that can be interrupted. Also, now that I know these symptoms, I can recognize it for what it is and go on.

Paul Young-"(Wherever I Lay My Hat) That's My Home"

A year ago I would have sworn this is my theme song.

Its nice to have grown enough to say it no longer is.

Well, I'm going to leave you now. See you tomorrow.

You figure out why.

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

Smoking

I'm a smoker. Its something that I've readily admitted the entire time I've blogged. I grew up in a smoking household, my mother and her father smoked until they died from complications due to Huntington's Disease. My grandmother smoked a single cigarette from 40 until she turned 50. Then she quit completely.

I quit for a few years, and promptly started up again after a nasty relationship break-up. Soon thereafter I began to show physical signs of my Huntington's. I've made several good attempts to quit. Quitting is for my sake as well as the sake of Jane but not only do I find that one of the few things I really enjoy has been taken away, my depression and shakes seem to become worse. I've asked my neuro about this, and he thinks (off the record) smoking does make a difference. My psychiatrist says in his opinion it doesn't. 

Thompson Twins-"Doctor, Doctor"

That being said my own smoking has gone down from a pack and half to three to four cigarettes a day. Any higher and its just not worth it to me & any farther down and my depression alone swings past the tipping point to "don't get out of bed without serious prompting."  This last time, Jane actually handed me a pack of cigarettes after I was in bed for two weeks. I also don't smoke in the home but outside, so the house doesn't smell up. 

Still, while I still can I'm considering trying the gum one last time at a piece and a half three times a day. That would give the benefit and 'rush' from smoking while still getting myself off the actual cigarette while I still can. 

So what do the experts have to say? Their opinions are also mixed. 

From Beth-Israel Deaconess Medical Center's Home Safety for Huntington's Disease webpage:

If the person with Huntington's disease 

smokes, remember that it may be one of his few pleasures. Taking cigarettes away could cause agitation and extreme emotional upset. Instead, consider the following tips to keep smoking from becoming such a fire hazard in the home:

• Do not allow smoking in bed, which should be a rule for all members of the household.
• Look at the places where the person tends to smoke. Remove anything that could catch fire easily, such as newspapers, magazines, boxes, dried flowers, or leaves.
• Make sure that the floor and furniture are flame-resistant.
• If your loved one smokes outside, make sure it is in a low-risk area, away from dried wood, leaves, flowers, or flammable chemicals.
• Use ashtrays that are large, stable, and fireproof. Make sure the ashtrays are placed in an area where they cannot be easily knocked onto the floor. An ashtray attached to a floor stand might be a better alternative.
• Cigarette holders can help the person hold the cigarette without it burning down to their fingertips.

Talking Heads-"Burning Down the House"

Excerpted from A Caregiver's Handbook for Advanced-Stage Huntington's Disease by Jim Pollard (pg 42). 

**I've bolded the portions pertainting to helping to quit smoking.**

Half jokingly and half seriously, physicians who are experts in caring for people with HD have referred to HD as "one of the smoking diseases." Certainly a very large portion of people with HD smoke cigarettes. People with HD often view it as "one of the last pleasures I have left." Smoking becomes symbolic of independence.

Smokers and their caregivers are faced with a number of problems. Some folks with HD have an altered sense of hot and cold. Their fingers are often burned lighting cigarettes or smoking them down to the butt. Impaired judgement can make them unaware of the danger of burns to clothing, ashtray fires, or lighting the cigarettes of friends who are themselves unsafe smokers. The movement disorder makes it unsafe to use and dispose of matches and lighters. Impulse control problems may drive them to take another person's lit cigarette right out of his mouth.

The unsafe smoker doesn't want to hear your suggestion to quit or your offer of more supervision. Caregivers are often caught in a power struggle. If the unsafe smoker has a lengthy spell of illness or hospitalization that precludes his smoking, use it as an opportunity to encourage him to cut down or quit smoking. Although this may put the caregiver in a patronizing position to the unsafe smoker, it may reduce or eliminate unnecessary risk of burns and fire.

Caregiver Tips Regarding Smoking

• Take seriously the smoker's emotional need to smoke.
• Discuss the use of nicotine patches.
• Build a reward system to encourage him to quit.
• Use large ashtrays that are solid, sturdy, and untippable.
• Limit smoking to a well-protected area.
• Purchase nonflammable clothing, furniture, and floor covering.
• If necessary, have the smoker wear asbestos vest. Install extra smoke detectors.
• Use a "smoker's robot." It holds a cigarette to prevent ashes and embers from being dropped.

Soon I'll be updating with even more sources, but here is a very interesting discussion by carers(caregivers)  on dealing with the smoking issue with their loved ones.at the Huntington's Disease Lighthouse. 

Take care and "Top of the mornin' to you"

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

Morning All

After playing "Space Age Love Song" by Flock of Seagulls I've been stuck with their other song, "I Ran" in my head. So for the sake that I can get that piece of crap out of my head here it is. 

A Flock of Seagulls-"I Ran"

I'm cutting back on my Twitter time today. I found myself justifying my use by deflecting. Wrong way to go, Paul. It was like the time I said I'm not an alcoholic while I justified my drinking by switching from Beer to Bachardi (Yeap, I did that one).  That means I have to make sure I don't slide over to Facebook.  

I'm the king of parallel addictions. I was actually reading that alcoholism and drug addiction have a higher rate in Huntington's Disease patients. If true, it would not  shock me. In my case I was drinking when a late teen and then just kept drinking until I had tried to take my life. Since then I've maintained some good sobriety. 

I do know that as an HD patient I'm going to loose a parent, which to the average person is a known stressor. I'm also suffering from compulsive thoughts and actions which I take medication for. I'm also planning on starting a new type of therapy for this and we'll see how that works next week.

craigslist tv: Drinking Buddy

I love this show. As someone commented it should be on those ads where they justify the existence of the internet.

Men Without Hats-"Safety Dance": 

I'm having troubles sleeping since I stopped the Lyrica. That was a powerful knock out drug and my body misses it. Right now I'm wishing my eyes were closed and I was dreaming of this little village.

Nena-"99 Luft Baloons"

My whole body is screaming to sleep but I can't cross the line to the nice sleepy clouds 

Eddy Grant-"Electric Avenue"

Eddy puts me in the mood to watch some Ross Kemp in Jamaica. If you haven't seen him I highly recommend it for good entertainment. 

 Falco-"Rock Me Amadeus"

This is one of those songs that good speakers were bought for. 

Kim Carnes-"Bette Davis Eyes"

Sleep, come to me. I'm calm enough now DAMMIT! 

I'm really not going to get this, am I? Its time for me to settle down with my phone and read a book on the Kindle. 

Morning all!

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

Calm after the storm

Getting tired. Very very tired. It feels like that all the time lately and its probably very true. I have been doing a lot of things that a month ago I wasn't doing. I was just laying in bed, reading my little live away. Now, yawn, yawn, I'm actually doing something. Granted it might not be a lot but it is deferentially something more than what I have been doing in the past.

Kraftwerk-"The Robots"

I'm yawning myself to sleep here. Don't have it in me to keep going but I do.  Jane finally got on my case yesterday when she came home and I was still typing away on my telephone at the dinner table (not during meal time, mind you). She was asking if I was on Facebook. I wasn't, I was on Twitter but no need to mince words. I denied that I was on Facebook. I wasn't. I was on Twitter.

The Beatles-"Baby's in Black"

Twitter was actually not my vice until a few months ago.  I rarely used the computer outside of gaming. I never used the internet for much of anything outside of looking for a library book for someone else. There was no need for me to have a Facebook account. I did have one that I promptly lost over three years ago. I opened it about the same time as I had a MySpace account. No use for that either. Now I am so addicted to twitter that I can't go without my Droid. Never mind that I have four Twitter Apps for it now, only one that I use on a regular basis. It was okay for me to use Twitter because it was only short 140 character messages. No harm, no foul. 

The Beatles-:"Baby's in Black"

Now I have someone crying "Foul" and I need to know what to do with it. I can admit she's right, I have been a little compulsive lately. That is true, and so I'm not lying. She'll probably be glad to know I'm listening to her and acknowledged her opinion instead of barking down at her lately. With the high level of stress in our house, I don't need to contribute by adding more fuel to the fire. The home life is finally calmed down after the storm that was October and now we've in the anticipation of the Holidays. Take it easy Paul, and keep the household calm. We don't need to start any storms here. 

Flock of Seagulls-"Space Age Love Song"

Its really nice that things are going more smoothly. I must admit I don't know what to do with it though. I'm used to dealing with ten little storms a day. I feel like I did when I first started this blog and that is living day by day in a calm manner. Its nice to be there again.

Modern English-"I Melt With You"

One last thing. We were talking about the wedding and it looks like the Botanic Gardens is the venue. Its beautiful and I'm looking forward to it. That is the key. We want a ceremony we remember as nice and calm, not something we need to look at pictures of to think "We really looked happy that day." That's crap. Its not about how we looked. Its a day for us to enjoy and have fond memories of, its not a ceremony for us to put on, like a play, to please the other people there. 

Camera Obscura-"French Navy"

Hope you also had a nice day!

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