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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