Easter Monday

I hope this blog post finds you well. This year for Easter I actually had plans. My children's First Confession was that morning, their Palm Sunday and our Easter.

Ted Neeley-"Gethsemane"

Their father had bought the outfits for them to wear during his last night at home. He hung up the clothes, gave each of his kids a kiss and went off to work. Somewhere in there he managed to drop a note into each of their pockets.


My wife was getting their clothes ready when she found the piece of paper in DJ's pocket. She opened it, read it, put it back and started sobbing. Its been that kind of weekend.

OMD-"If You Leave"

It was a nice day. It may sound sad, but its really not. Its been a time of healing. We are starting to enjoy each other's company and feel like a family. In fact, Easter afternoon we were invited to a friend's house for a BBQ. This is the first time all four of us were invited to do something together.

Somehow last night before this happened I was listening to music when this song came on. DJ fell in love right away, so to not include it would be a crime.

Paul McCartney-"Put It There"

After a while I sat near the stereo and played Music For the Masses followed by Songs of Faith and Devotion. Jane asked me several times to turn it off before the kids started singing Strangelove at school. I thought she was over reacting until this morning. I heard DJ sing "Common Nation" while getting dressed. Its a good thing I put those headphones on before he learned a worse set of words.

DJ has the most beautiful voice. This is the first time I ever heard it. He is the more quiet of the twins, so it was a shock for him to open up by singing as he did. Music runs in that family. I hope he chooses to do something with it.

Jane agrees with me, and we have decided to consider voice lessons. At the least it hopefully will give him an outlet to release his feelings. It couldn't hurt, could it? It might even help him crawl out of his shell a little.

Sasha on the other hand has been very willing to say what is on her mind. As I went in to read them a story last night she just looked up at me and told me she misses her Daddy. I told her that I did too, and we talked about him back and forth, sharing stories. 

Depeche Mode (Devotional Tour)-"Condemnation"

Finally, my friend Stella is going to Brattleboro Retreat tomorrow for help with her depression. Stella was recently diagnosed with Huntington's Disease after her positive HD gene test last year. She is understandably nervous about her stay there and I will be keeping her in my thoughts. I'd appreciate it if you would do the same.

So Stella, this song is going out to you.

The Beatles-"Baby, You're a Rich Man"

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

Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.

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.

Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.

Good Mornin'

Its 4:30 a.m. and for the life of me I can't sleep. It isn't helping matters that my wife will be under a general anesthetic in less than three hours for her egg retrieval and I'll be having a local right after so they can needle me to get around the fact I had a vasectomy. 

Add  that I'm sleeping in the living room to keep my wife away from my cold  and you are hearing from a very cranky Paul.

The Human League-"Don't You Want Me" (unmix)

I made my own name for this odd song as the main song is the demo for DYWM. It was recorded before the girls joined. Then suddenly you hear Susan's voice in her verse only to cut back to Oakey's voice as it appeared in the single, with the girls in the chorus. I don't know what to make of this but a couple thoughts come to mind. First, thank god for Martin Rushent or we'd have Crap instead of Dare and second, this fan actually makes a reasonable remix.

Pet Shop Boys-"Always On My Mind"

That was a very 80's cover. I love Joss Ackland in the back seat. He plays the part so well. Then of course you have the strong Fairlight CMI in this song. I'm rare but I was never a big fan of the CMI compared to Synclavier. Here it does exactly what is needed.

Its OMD for the double feature this morning

Orchestral Manoeuvres In The Dark - "So in Love"

I'm in a serious OMD mood lately. Sometimes they just have this synthpop sound that also calms my nerves.

Orchestral Manoeuvres In The Dark-"Enola Gay"

I like the Fine Young Cannibals, and their cover of this Elvis song won't disappoint. He's not an easy act to follow either.


There was one copy on YouTube, and it wouldn't embed. I downloaded and the uploaded with permissions to embed so you can hear it. Enjoy!

Fine Young Cannibals-"Suspicious Mind"

I'm starting to get tired. I hope to get a few winks tonight. I just checked on Jane and she's sleeping like a baby. I'm sending this next song to her. In fact, I actually reprogrammed her alarm to play this in the morning. I want her to know I realize how special I feel about the PGD/IVF process.

Thompson Twins-"You Take Me Up"

Should I ask you to dance? (dance boy, dance boy)

If I promise romance would you come for the ride?

I know what it means to work hard on machines

Do you believe in love, one that lasts for all time?...

You take me up, (oh hoh)

You take me up to the higher ground

You take me up so high

Now I never want to come back down

I'm finally getting tired. Its time to put on my dancing shoes and dance my way out of here...

Dead or Alive-"Lover Come Back to Me (extended version)"

Before I forget the HDA (the UK equivalent to HDSA) is now on Twitter. They asked me to spread the word so I am. Please do the same. They are really good people that do a lot for both HD folks and their caregivers.

Good Morning 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. The comments section is fine too.

Catching Up

I had a nice, quiet but enjoyable New Year's last night. I had been invited to a friends birthday party but decided to stay at home with Jane. I'm glad, it was a nice enjoyable evening.


Today's music is curtosy of 80sMusicGirl. She played these 80s songs last night.

Swing Out Sister-"Breakout"

I'm starting to settle down to the married life. I must say I enjoy it. Although I didn't think it would change me, I was wrong. Suddenly I feel safer. Our relationship is so much more stable. Its almost as if we are able to read each others mind more so than before if that makes sense.

ABC-"Be Near Me"

This morning I woke up too early so I only got four hours sleep. I don't feel tired though so I'm making breakfast while I type. I'm back on a diet to gain weight. I'm not as thin as I was a year ago but I need to gain extra weight so when I get chorea later I'll have the calories to burn. 

Go West-"King of Wishful Thinking"

One thing I've been flirtiing with is my ability to become a citizen in three years. If my Huntington's Disease doesn't make it so I don't have the brain power to take the citizenship test, I likely will prepare myself so I can vote at that time.

People ask me why I want to become a citizen as I will have to give up my right to vote in England. I'm simply here for so long that I see some policies I don't like. It would be nice to have a very small influence on them. 

Prince-"Let's Go Crazy"

When this song came out my little sister teased me that this is my theme song. This one is for her. She's thinking about having the test for Huntington's Disease. Since our mother had it, all her children have a one in two chance to carry the gene. If she tests positive for having the gene she will eventually get HD. I've told her I'll fly out and support her when she goes in to hear the result. I remember when I went in to have my results announced I was thankful Jane was there, even if I already knew I had HD. I had the test so I'd know my CAG repeat count. As I've mentioned it is the area of JHD. I was thankful that she was standing there while I was on the phone. I don't know how I'd have managed that otherwise.

The Go-Gos-"Vacation"

I'm reading a lot more since I got my Kindle. Something about it makes it easier for me to comprehend what I'm reading. I'm not sure if its the font or spacing or something I'm completely unaware of, but its nice to have the old habit back. The book I'm currently reading is Blown For Good-Behind The Iron Curtain of Scientology by Marc Headley. I've wanted to read this since my reading first went down the tube. At 50% completed I must say it was worth the wait. Headly takes you inside the Int Base, the intitution where not only are the "Church's" movies are made but also the home of leader David Miscavige.I highly recommend this book.

Orchestral Manoeuvres In The Dark - "If You Leave"

My wife and I have one week to go until she will be ready for her doctor to remove her eggs for fertilization. We are like little children waiting for Christmas to open our gifts.The IVF drugs are making her moody, but not half as bad as expected. 

Simple Minds-Don't You Forget About Me"

Well, I'm caught up. Thank you for reading. I hope the rest of your day treats you well.

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.