Sex, Drugs, and Rock 'N' Roll

Waking up this morning I started listening to music as I often do. Then came an OCD movement I've had for  almost 10 years but it was before anyone saw other signs of HD. It happened yesterday too. I'm currently lying on the covers in my bed and having to move my legs up and down to the beat of music. Then my mind wants to take a break and I have to knock my knees together and rub them while doing the up and down movements. Its making it hard to type this blog while my lower body is doing its little dance. I'm doing it whether music's on or not, That's the first thing I tested. If its a trigger I need to know.  Oh well, somehow I'll manage as I knock/rub to Blondie here. Its headphone time, play it loud with lots of bass.

Official video for Blondie's Call Me from American Gigolo 

This must be my lucky week, look what I found: a remix of Call Me by no other than Giorgio Moroder, one of my favorite producers. Between this and the old BBC2 video Trish showed me that I posted yesterday (only their second TV performance) I am near heaven right now. 

12" version of Call Me including new versions

Remixed by Georgio Moroder

I checked my email last night (after putting it off for four days) and found Meeko's excellent review of new The Human League album Credo I promised you a while ago. It is worth the wait with a track by track analysis. She also apologized for the delay explaining that she has been away from the internet quite a bit. In her defense, she sent it early four days ago. Considering that she's still dealing with her mother (and my friend) Penny' West's death from Huntington's Disease I completely understand. 


She also wrote this (I have her permission to reprint the contents)
>>>You posted a girlie song for me on your blog. If you think I will let this one go you are so wrong. /signed "through the eyes of love" <<<

Another Girlie Girl Song For @MeekoDev

That's what you get!

This email reads as if she's going to tease me now. It'll be worth it though, because if she heard the song then she also read what I said about her. (Third song down) Besides, we are always teasing each other.

We're all adults here, or so I assume. If not, you can go down to the cartoon video. I'm going to talk about something that I don't come across a lot when reading about early stage Huntington's that I do think needs to be talked about. 

This morning I woke up quite late, and would probably have slept past 1 pm if J hadn't started snuggling against my neck. It felt very calming and sweet and a just great way to wake up after a horrible day yesterday.

t doesn't take a genius to figure out what happened once I woke up. I'm bringing this up for a reason though. Lately I've been feeling, among other things, less of a regular person. It doesn't help that other people are treating me in a different way (my reference yesterday to HD Paul is but one example). The primary literature and pamphlets I've found on the topic of sexual relations have to do with patients whose symptoms cause them to be cruel and sexually abusive. 

I'm not saying this doesn't happen, sadly its fairly common with people suffering from HD. Still, there is a middle ground between the importance of feeling loved and being impulse driven.


Even the wonderful HDA FactSheet on Sexual Problems spends over half of the sheet discussing ending a sexual relationship along with other negative problems with the HD patient like sexual impulse control.

Take a Chance on Me - ABBA

To quote from the first half of the HDA piece on sexual problems:


One of the features of HD is the lessening of normal inhibitions. This
is also true of sexual behaviour and some sufferers become sexually
over-active. In an acute form it may mean that these persons will
solicit a number of other people but much more commonly they make
extra demands on their partners. These demands may be quite
inappropriate as to the time and place, and can be very exhausting
for the partner either in meeting them or standing the consequences
of refusal (p 2)
.
Then people like my shrink wonder why I push people away from me. What if I start doing something like this and hurt the person I care the most about? Duh Doc.

If it is at all possible the couple should try to discuss their problems
between themselves, or with the help of a counsellor, so that they can
understand each other’s feelings. Extra attention and affection may
reduce the need for actual intercourse, although some people have
found that this has the opposite effect and any physical contact is
misinterpreted. As said before, a person with Huntington’s disease
may need a great deal of reassurance and may easily feel rejected. A
caring and affectionate attitude should help, together with an
acknowledgement of some of the feelings the sufferer may have (p 3).


Underlining is mine. This passage reflects how I feel as I write this section. I am sure many other people with chronic and/or terminal illnesses feel the same way whether it be chronic læukemia, ALS or Huntington's Disease.

Hello World! We HD positive peps are human just like you and we have human needs too!!! 


We still like to be touched and told that we are special to you. We don't like to have to wait until we show a symptom of our illness to warrant some of this.


Thanks J for letting me know I'm more than a disease to you, even if only for an hour. It means more than you will ever know.
.

Another issue is that when you care for us its not the same type of alone time. During this type of alone time we may feel you are taking care of the illness not the person. I know that I feel indebted to you for these actions. 


On the other hand I appreciate small things such as when you bring the newspaper on the bed Sunday mornings just like you used to do  before I got sick. If you don't fight me for the news section, I know you aren't seeing me the same way you used to.


By the way, a romantic kiss once in a blue moon is more special than you probably know as well. 


I know its hard sometimes to be carer and lover. I saw my dad do the juggling act, but now I realize why he felt it was so  important.

There have been so many times I thought J stayed with me for the simple reason that she would have trouble living with herself if she left me. I honestly think that if she  leaves on holiday alone she'll see the trap she's in and stay away. Most of me thinks that's one of the smartest things she'd ever do. A bit self-centred, aren't I?

The Monkees - Last Train to Clarksville

Yet I remember times trying to convince Mum that wasn't the reason my own father stayed with her. There were times my older brother and I heard them make love through the wall. I would be relieved because I knew that the next few days she wouldn't think my father was going to leave her and pepper me with questions a child shouldn't be asked by a parent, at any age. 

Well for her (and as I've written before here, it appears for me also) psychiatric symptoms are the more prominent symptoms in the early and mid stages of HD. That may includes paranoia, but mine is so mild at best my friends laugh and tell me if that's paranoia they also suffer from it. "Its nothing like your mother's,"  people who never met her tell me.  At least, in their eyes I'm not paranoid yet. Or so I try to reassure myself. What I'm trying to say is its hard to trust yourself when it comes to paranoia.

I remember enough French from Comprehensive

to realize the subtitles are funny as hell.

Speaking of these symptoms, I was able to talk to my GP (family doctor) on the telephone today and she told me she spoke with my shrink after I left the office. That's normal as she is the main person for my care. All my other doctors circle around her.


They both agree they want me to consider starting a very low dose of Haloperidol (Haldol) for the nausea among other things. I think there appears to be an underlying condition they aren't willing to talk about with me until my appointment with my neuro  in about six weeks and my GP much sooner. I think they want the neuro to discuss it with me since I'm refusing to even take the anti-nausea drugs in the family. I'm going to let it sit for the night, and just keep taking Ginger which for the second night is keeping my nausea away. I'll make a call to my shrink's office first thing in the morning. Watch, the other symptom is paranoia (That's a joke).

Cars (vocals late Ben Orr) - Drive

You'd think one of the three would tell me why they think I need an anti-psychotic before I blindly take it but so far noooo.....

Although I hate neuroleptics, after the past month my mental health is nothing to fool with, no ifs-ands-or-buts. If they admit they recommended it, I'll start it. Also, my Neuro started me on Namenda. I have two monthly starter packs because I've been putting it off and my he keeps giving them to me. There haven't been any studies on it one way or another regarding HD directly but now that I have been having very slight problems with cognitive thinking its probably best to start. To be honest, he's been pushing it on me for over 8 months but I've been resistant to taking more meds. Between prescriptions and supplements I take enough thank you very much!

My mother loved this song. Very strange to be in the UK  and have Linda spilling out the window. It wasn't your normal English home. My Dad would play Paul Simon and New York Broadway Theater musicals. How they raised a son who loves Trance and SynthPop I'll never know. 


Still, after all these years this song moves me. 


"Mum, see me waving? I'm playing your song!"

Graceland by Paul Simon

I'm going to try and convince my father to fly out to America if I pay for us to go to Graceland. I've never been there and would like to go just for the kitsch factor alone. In fact, I'm going to email him this video as soon as I'm done writing this blog to whet his appetite. Paul Simon with pictures of Graceland, how can I go wrong with this video? Now that I think about it, I'm going to start saving up to buy some aeroplane tickets for his birthday. 


Worst case scenario: I use the money on another gift. 


Graceland is far from being  on my "bucket list" but it should have been. I want to do this both while I can fully comprehend it & while my Dad is still well enough to enjoy it, which may be only a few years. The main reason its on my list is that I want the chance to see my Dad that happy.

Fish Heads 

I still have my old Apple Classic Computer here. Last month I finally started getting around to turning it into an MacAquarium and then the King of Depression with the Queen of Anxiety hit and I left half of the interior still intact. So tonight  I finished cleaning out the motherboard and most of the electronics. Tomorrow I'll test it for any water leaks and start filling them with epoxy. Before long I'll have some fish in the new tank and it will be an awesome aquarium. I'm really looking forward to the finished product. There are so many ways to customize this, from placement and type of heater to the design in the back if any and so on. Its a really fun project. Its like model building but you get a real usable product from your results.

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BBC2, Human League and oh no, I'm falling in love

As they say on Chan4 tl;dr

If you don't understand that, then don't worry. Read ahead!

Look at this gem Trish Dainton of Curse in Verse & Much More Worse found! Its only a video I've wanted to see since I was 13 years old.  I'm so excited to share this with you. Its one of the Human League's second television appearances and their first after signing with Virgin Records. They performed two songs, including Empire State Human, shown here on BBC2's Mainstream.

Just for this, I'm going to push your book again tonight Trish.  Again, Curse in Verse & Much More Worse is a book of poetry by a woman who was the carer of her husband Steve who died of Huntington's Disease earlier this year. The book is a combination of prose as well as her poems in which she places herself in both the roles of a person with HD as well as a Carer. It is a very good book for anyone who is either taking care of a person who suffers from a terminal illness or their carer. I can't recommend it highly enough. You can buy it in the UK at Amazon as well as in the US by clicking the title above.

Please forgive the first part of this blog as the internet is down so I'm posting on my mobile.

Last night was crazy and I felt violated.


Yesterday I did too much and got stressed out. It can happen to the best of us. I also took Naprosin for my back which ate through my gut and codeine which made me dizzy. No fun. So I get sick in the bathroom and J decides it must be some Huntington's thing. As if I can't get normal sick,right? Its one of those times when I think she sees the disease and not the person, you know?

This is the kicker and what royally pissed me off. She f'cking posted on my Twitter account! WTF? So here I am in the bathroom, willing to take the Visteril for my naseau which I never do and she's on MY Twitter account asking for help. Yeah, she doesn't want me to take the Vistaril because it can cause random movements but that's her issue. Yeah I normally don't like those drugs but last night I didn't have a choice.

So here I am, on my hands and knees over the porcelain king and I blew up. I haven't been this upset in years.

My blog and Twitter are my personal space and just because I wasn't able to lock my computer down doesn't mean I should be worried about someone in my house using it.

I know she has feelings for me and is worried but that gives her zero right to go into my space. That's a whole other issue. Still, unless she passed away I'd NEVER EVER go through  her address book, Twitter,  or Facebook. Its just wrong.

Let me tell you if I wasn't sick I'd have taken my laptop and Droid to a hotel for a couple days. Instead, when she relaxes after class I'll explain that for me its a private thing. As mad as I was then, now I realize she's not a mind-reader.

I went to see my shrink this morning and told him everything that has happened the last week.  The last previous weeks'  my mood swings were severe enough I went on a mood stabilizer, which feels like its starting to work. Still I felt it was important to make sure that isn't the underlying cause so I ran everything I could remember from the week to him. There was a lot of stuff. Sometimes we don't realize it while we're in the midst of it.

In fact, I finally told him about this blog (and he promised all on his own not to look for or read it). It even came up that I am more open here than anywhere else. He asked if I would give him an example and I told him about yesterday's post about my mum. His mouth nearly dropped open as its not something I've been able to really talk about with him, even after two years. He asked who reads it and I told him as far as I know no one I've met personally, maybe one person I know as she's on my Twitter and I post entries there.

Doc said its okay and I'm not weird to want to keep it that way. I only know one person in real life on my Twitter account and they're the reason for my Twitter addiction. So I blocked J.

Its not personal but as I told my doc I want to be open here, not worrying what X person is going to say about Y statement. I also don't want it used against me.

I needed to go out soon to fill my anti-depressant and make copies of my Living Will and posters about Amy Ahearn. I was going to distribute them today with my friend but all these psychiatric drugs (Xanax, Tofranil and Lyrica) are making me so very tired on top of the Vistaril last night. I have fallen asleep three times today. Then again I slept like crap the  whole week. The police & sheriff stations will have to wait until tomorrow. Of all people to understand the importance of medicating the psychiatric side of Huntington's it is Amy's sister. Sadly, Amy is like me in terms of suffering from those types symptoms, only worse. I will get the copies made today.

Sometimes at home I feel like three people. And I've heard all these quotes with my own ears. There's Paul the normal guy who J and most of society wants to be around. He's a normal guy looking for a normal job. "Poor boy hasn't found the right woman yet to settle down with and have kids but give him time...in fact I have just the woman in mind..." 

Second, there's the guy who's mom was "cookoo" and even though we don't say anything to his face we are careful around him. We all hope he doesn't end up like her. 

Then there's the HD Paul (note the HD comes before the name). Its this third one they're all worried about right now. His personality is a bit different to those close to him and people don't want to see the HD part of it. They don't like it when he goes out to show posters to strangers of a missing woman just because she has Huntington's Disease and he realizes it could have been him that went off missing. Come on folks! He's giving money to help find a cure for HD, and how do we really know his mother had it at all anyway? Or his other relatives before her? He "only has large involuntary movements right now, not fine ones."

"I know," someone else said , "I saw the large tremors so it can't be HD, Paul. And while I have you here, we all know the mumbling is just being lazy. I hate how you've been doing that lately. Don't you care enough about me to even talk clearly all the time? I think it could be all those meds, do you have to take them all?"

I want to scream "If I could go without all these meds don't you think I would? This isn't exactly fun!" but I just keep quiet. I know its not the meds causing the mumbling and that my mother never had minor tremors nor  dancing. I also know that she died early on in progression and had already fallen often enough she was in a wheelchair most of the time. I know that she suffered from extreme depression and anxiety like I do and those along with dementia were her primary symptoms. I know the results of her brain scan look just like the ones of HD patients in the  documentaries. I know that's what the radiologist in his report said without using the words "HD". I know that generations before all died of things such as pneumonia, suicide or dementia. It doesn't take a genius to figure out what was going on.

I hope that if I disappeared my older brother back in the UK would make sure there was a police officer in charge of my missing persons case and that the officer understood why a person with HD might run away due to false thinking. I hope the HD community would come together to help him, as they are Amy's sister Margie.  

You know what else I hope? I hope someone will bother to be troubled, just a little, and make sure I'm okay and comfortable. We did that for Mum and without those memories I don't want to think of how I'd feel now. I'm not asking for the world on a plate here, just someone making sure I have medical insurance and I'm in a bed that is comfortable.

What I don't hope for is someone to be tending to my every need. Look, only once have I had a relationship that was serious enough I would even consider marriage. My shrink says that I push people away before they can become that close. Perhaps he's right. I don't know.  I do know that it would make sense after seeing what happened to my father once my mother died from her own hand due to her HD. I know I don't want to put anyone through that.

Its as the couple sang at the end of La Vie Boheme (Third video down at the link) "No one's perfect, I've got baggage."  "Life's too short babe, time is flying, I'm looking for baggage that goes with mine."  Well, I haven't found anyone who's baggage goes with mine yet. I haven't ever led anyone to believe that their's does because chances are there isn't anyone who's baggage will match mine. In fact I've always gone the other way as I've said above. Sorta like Neil in this song.

I'm playing this next song because my anti-D and mood stabilizers are starting to work tonight putting me in a better mood. I took some time to explain to J how I felt about the Twitter thing and she had no idea. "They call it the WORLD Wide Web for a reason, Honey" is actually how she worded it. In fact she apologized and is sitting here on her side of the bed reading her book while I finish this on my laptop. The book is one of my late friend Penny's: Mark Bowden of Black Hawk Down's newer book Guests of the Ayatollah: The Iran Hostage Crisis: The First Battle in America's War with Militant Islam. I'm going to curl up in a few minutes myself.


First I want to end with a few words from my Doc today. He asked me if I didn't have any feelings for J why the hell was I so wrapped up around her and cared what she though and said. Why was she able to influence my attitude so much? So I did I lot of thinking between the lines here in this entry today.

I know it sounds weird after all my ramblings but I really had some things I needed to think about today. You see, I think I might be falling in love. This isn't supposed to happen. Not to me, not now.

Is love so fragile...
And the heart so hollow
Shatter with words...
Impossible to follow
You're saying I'm fragile... I try not to be
I search only... for something I can't see

I have my own life... and I am stronger
Than you know
But I carry this feeling
When you walked into my house
That you won't be walking out the door
Still I carry this feeling
When you walked into my house
That you won't be walking out the door

Lovers forever... face to face
My city or mountains
Stay with me stay
I need you to love me
I need you today
Give to me your leather...
Take from me... my lace

You in the moonlight
With your sleepy eyes
Could you ever love a man like me
And you were right
When I walked into your house
I knew I'd never want to leave
Sometimes I'm a strong man
Sometimes cold and scared
And sometimes I cry
But that time I saw you
I knew with you to light my nights
Somehow I'd get by
First time I saw you
I knew with you to light my nights
Somehow I would get by

Lovers forever... face to face
My city or mountains
Stay with me stay
I need you to love me
I need you today
Give to me your leather...
Take from me... my lace

Lovers forever... face to face
My city or mountains
Stay with me stay
I need you to love me
I need you to stay
Give to me your leather
Take from me... my lace
Take from me... my lace
Take from me... my lace

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