The life of a man suffering from Huntington's Disease, a genetic and fatal illness. Every child of a HD parent has a 50 % chance of suffering from this fatal degenerative neurological illness.
This is the story of one such person.
Lately my insomnia has come back with a passion. To sleep I need to take enough Xanax to knock myself out. Sleeping pills won't touch it, so after the twins go off to school for the day Dad goes back to sleep if he's lucky. If not, he yawns, moves slowly through the day and deals with a semi-depression state from lack of energy. Not even enough get up and go to watch a movie. Other than that, life is good. I'm eagerly awaiting March 26th, when the new Depeche Mode album is do out. Its also the date of the much awaited David Bowie record. This will be interesting.
Depeche Mode-"Heaven'
Word on the street is that this single is not representative of the album. This is a shame. I really like Heaven. It also captures the theme of the album title "Delta Machine".
We'll see soon enough. This is the second cut as played back in October.
Depeche Mode-"Angel"
As a fan of blues fusion from Elvis to Simon and now the SoulSavers this is specifically what I want to hear. When I hear the world Delta in an album title that is exactly what I expect in the music too.
Paul Simon-"Graceland"
Notice the first line.
Now back to my insomnia, a lot has been going on with some dear friends and I'm sure this has been an influence. Two friends of mine are second generation HD at-risk. Their father had the gene with out any prior family history. Stella tested positive last year, and like me suffers from near debilitating mental symptoms including depression and agoraphobia. Her sister Jan just was tested last month. She tested negative for the HD gene.
Another friend who also only learned a couple years ago that HD is in her family is also now feeling a need to get tested as her anxiety and depression are worsening, these were also her mother's first symptoms. She can barely leave her room,when medicated. I want to be there for her during the testing process but I just don't have it in me right now. She understands, I can't say I would.
Elton John-"Circle of Life"
A fourth friend is waiting for test results himself. He had a malignant tumor removed four years ago. It now has spread. He is awaiting the results of his bone scan. If it has moved there, his plans are to enter hospice care. He's allergic to the primary medication to treat this cancer.
This song goes out to him, he knows why.
Elton John-"Pinball Wizard"
So hear I am listening to to BBC 6 Music weekend, getting ready to watch an action movie or documentary. Maybe the documentary will help me sleep? However if I can't sleep the action film will keep me entertained.
Action film followed by documentary it will be.
Goodnite now,
Paul
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.
I came home from the hospital after spending a couple days in there for pneumonia.
The entire stay was complicated. I went into the Emergency Room at two in the morning, only to check out at noon. I wasn't feeling well, and thought I was coming down with my annual bronchitis. Only I wasn't. I had come down with walking pneumonia. Not so good. They give me a bag of IV antibiotics and then I'm welcome to leave. The doctor's directions are to return if my fever tops 102 degrees. My memory at this point is fuzzy, but I do know the time before my fever goes to 103 is about an hour and that it goes up a whole degree on the drive p. J was so upset at the hospital releasing me that she has my GP meet her in the ER before she will drop me by again. Her valid argument is that he knows enough basic medicine than to release me again, and she's right. He checks me in under his name. I breathe knowing I'll getting better medical care for the night.
Suddenly I realize that I'm expecting something many people in the United States don't have: reasonable health care. This should to be a basic human right. B A S I C. Okay, I'll rant about that on another day
Chose this song because I'm feeling blue but as soon as I started watching this song I realized how much I have to be grateful for. Beautiful piece by Elton, as usual.
Once I get over this pneumonia (and the sooner the better) I'm looking forward to being joining the Occupy Santa Barbara movement and actually protest with them, moving from simple support to full support. After spending some time with a friend who had been one step from homelessness twenty years ago due to mass job layoffs in her line of business, it has made me feel that this is very important.
I've been doing a lot of thinking lately, with all this time on my hands. I've been thinking about spiritual matters. I'm back to the basic "is there a god" mental puzzle.
So tired of being in bed, and the medicine has knocked the wind out of me. Its hard to read as the letters are swimming in front of me, although I do have the movies to go along with Easy Riders, Raging Bulls, and Robert Evans' The Kid Stays in the Picture.
I could watch those. If I get off my butt enough to do it. I have no get up and go. It could be from being sick or HD related depression. My money is on the latter. I would really like to see David O. Russell's Three Kings (Yeah the guy's an a$$hole but its a brilliant film).
One thing that really s*cks, at least for me, about HD is that like many chronic illnesses, once you get something else you it aggravates the chronic condition. So in my case not only do I have pneumonia but I've had trouble making sure all my liquids go down the right pipe and my words are spoken clearly. My depression, memory and anxiety have all gone through the roof. The only good part of this is that I know what the new symptoms of HD will be ahead of time. For example, a couple of years ago I took ill with a nasty flu. This brought out a new HD symptom, missing keys on the keyboard. For example instead of "T" I will hit the letter key to the left of it, the "R" key. When the flu went away I stopped hitting the left key.
Then a few months later, sure enough, suddenly I started hitting the letter key to the left next to one I want to type on a regular basis.
The woman in this video looks like she walked right off the Pan-Am set!
This time when I started to get pneumonia, I began to repeat words when I typed them. Sometimes I would proofread them several days in a row before I noticed.
Before I log off (its midnight and several naps later I never did see that movie) I need to get some sleep for the night after my two hour nap, I wanted to share a wonderful experience I had with another HD FaceBooker. This person sent me a message in chat about 8pm and we ended up chatting for a couple hours. For those couple of hours, I didn't feel alone in this HD universe. There was someone else out there who understood where I was coming from.
It was this person's birthday but I was the one who received the gift. Thank you.
As I sign off here is an example how tired I've been feeling. It takes me three days to get this entry written, and I still don't have the energy to add more than four songs. I want too, I just don't have the energy. However, I'm taking the advice of a fellow author. In basic English. if I think I'm pushing myself, there is s good chance I am.
Now I've got all the new music on my Droid, haven't listened to it, either. It takes a lot less energy to listen to it, so I'm making a date with some good albums Sunday when I wake up. If I strayed away from Facebook Chat, then I forgot its even open (You have to love those HD memory issues).
My right shoulder started shaking and it actually woke up J, which is a first. I'm going to let her try to relax it so she can go back to sleep.
I haven't been sleeping well lately. I spent over 24 hours in a medicated sleep. I wake up every four hours with anxiety and pain, take medication and fall back asleep half an hour later. Evidently my sleep isn't very productive as J says I'm tossing, turning and jerking. All I know is that after three cups of coffee I'm still yawning.
First I want to play Round and Round by Spandau Ballet.
The lead singer of Spandau Ballet, Tony Hadley, is a patron of the HDA.
This next song has been playing around in my head for several days. Perhaps its because its on one of my tabs on Chrome and my computer has been crashing. Every time I start it up, this song comes on. Then again, I've also been watching an interview and performances by Human League on the old Australian show Countdown and this is one of the songs they lip sync.
The Human League - Love Action
The reason I've loved this song for so many years is that its a man talking about feelings and failures in love. At one point he even talks about curling up and crying.
These are feelings we do go through but here in America you never dare admit failure. Its one thing I really don't like about the culture here. They invented the entire "Keep up with the Joneses" phenomenon.
I found this gem in a great playlist of the entire Human League portions of this show that showed up in my email. It starts with this performance of Love Action, a couple short interview sections and then Open Your Heart and ends with a hilarious version of Don't You Want Me in which Philip turns away from the mic halfway though the chorus to laugh. Strangely although he's in the same clothes, the other members aren't which leads me to believe it was recorded/aired on a different day.
On second thought, I'm going to put this version of DYWM up here. Its music comic gold.
To quote what I wrote on Facebook:
Sorry but I can't help cracking up when Philip and Susan turn around to laugh. At 2:20 he doesn't even give a crap and turns away halfway through the chorus. When the camera cuts away the keyboardist is smirking too. Got to love live television.
Early Human League song Black Hit Of Space (1980)
You can see the soon-to-be members of Heaven 17 here in the background, The reel-to-reel at the
bottom is their electronic substitute for drums.
The Paul Simon Concert went really well. I am so glad I had the chance to go. He was on top of his game and in the intimate venue like the bowl it came off really well.
The Sound of Silence at Ground Zero, NYC
Speaking of Paul Simon, He was on the Johnny Walker Show today on Radio2. It was a replay of a show from May. It was perfect timing for me :) You can hear the entire show "You Can Call Me Paul" for 7 days online.
I called my shrink today. I am going in Wednesday but I'm just not feeling good. My OCD is coming out like crazy. I can't leave the house for a cigarette without freaking out thinking the coffee pot is still plugged in. Get out of my car and "Oh $hit, did I lock the door?" You get the picture. Its not too pleasant.
I also mentioned that on top of the OCD my anxiety is now constantly through the roof. It takes so much Xanax to get rid of the anxiety I end up asleep. Its easier to sleep then let my thoughts run wild. Right now there is no in-between. Eventually anxiety took over so strongly it helped set off a headache. What started the headache was I was reading on the laptop by my side of the bed and fell asleep. Sure enough, like what has happened before, my neck jerked, waking me straight up.
Choosing this song simply because I love it.
I really feel John's Words.
Right now this is how I'm living and enjoying every minute of it.
Yeap, I think its time to go back on the Haldol. I was seriously hoping to avoid having to start it again. There is no getting around it though. I'm not sleeping until I'm beyond exhausted, small things are giving me a rise that is fully out of proportion, and I'm OCDing like crazy. The SSRI's for OCD have never worked on my depression so to go on one of those would be trading off an antidepressant for an OCD medication, and that is not a trade-off I can afford. To make a long story short, he agreed with me and actually had the guts to tell me he was wondering how long it would be until I would 'fess up to him that I needed it. Live and learn I say.
Julian Lennon-Too Late for Goodbyes
One thing I've noticed lately is that the more text I have in my blogs, the higher my depression level. It may not be higher on the scale, but the longer the depression the more introspective I become. When that happens I write more here on this blog.
An old Saturday Night Live Skit. This
is a compilation of four Deep Thoughts by Jack Handy
And with that I'm going to finish this pizza and then sleep.
However, first I want to thank J for putting up with the mood swings and all the rest of these Huntington's Disease mental games I've been going through. J, I love you. As in really, really love you. As in I wouldn't b*tch if I ended spending the rest of my life with you. This one's for you.
Thank you to all the musicians featured here tonight who lifted my mood up.
Songs a bit heavy but so is my mood. Woke up with serious anxiety again today. Took some of my anxiety medication and waiting now for it to work. I know what is causing the anxiety so that is a good first step to dealing with it.
Here's the old classic from the Pet Shop Boys.
How their music has matured over the years.
Then again, so has London.
Someday I'd like to take a car and drive through the states. I was speaking recently with a man who had done just that. It sounded so fun. With my anxiety, if I got too upset I could just lock up inside the car (misuse of the verb to go, I know). It works, just ask Gary Numan.
Here in my car
I feel safest of all I can lock all my doors It's the only way to live In cars
One of the reason's I'm so upset is I let a certain family member bully me around. To cut to the chase this person gets away with all sorts of crap because he's seen as "the healthy one." Without an HD parent everyone always knew he was "safe" to love. They knew if they got attached to him he wouldn't up and kick the bucket. So for years he gets away with all sorts of things. Since he's my age I've always been a good target for him.
Today he posted something anti-Operation Wall Street on his Facebook with the reason of upsetting me (and wrote as much too.) . He knows I'm supporting the local Operation Occupy here to the point of bringing supplies to them.
Well, I've given the bastard too much ink already.
A very old music "video"
Thank you Mary. Between my cup of coffee, Xanax and you my mood has jumped over 6 to a 6.5.
Lets try to move it bit higher before I leave to run errands, shall we?
For its day, this video was (and still is obviously)
extremely racist but this song is so f'cking good.
.
On another note, its really funny that I hadn't heard the Beatles Baby You're a Rich Man for many years, but after playing it a few days ago I now can't go a day without playing it. So here's an encore.
You keep all your money in a big brown bag
Inside a zoo.
What a thing to do.
Depeche Mode People are People
Very experimental for its time, this song uses an sampling synthesizer to obtain different sounds from the world around them. You can hear it clearly in the beginning of the song which is matched brilliantly with the video in my opinion. This was covered in Synth Britannia.
The message from this song is really important. Whether it be a person who is homosexual to a person of a different race or style of dress or with diseases like Huntington's or AIDS "I can't understand what makes a man hate another man, help me understand".
Eternal by Technikal
Hard trance is right. You'll either love it or hate it but nothing in between.
I had to refrain from replying to a comment that stated: "why does all techno music keep the same beat throughout the entire song...." with this answer "Why does pop music keep the same beat through out the song? (See Baby You''re a Rich Man and People are People for examples")
This early afternoon I'm leaving you with Paul Simon and Me and Julio Down by the Schoolyard
This is probably the most fun video I've seen in a long time.
Its really hard to stay down when watching this one.
And Paul Simon brings my mood up to a 7! Alright, time to go run errands. See you tomorrow.
Last night on Twitter I saw a friend post and they mentioned that Paul Simon is coming to town and would I be willing to go? The answer was along the lines of *duh* No brainer. Of course I want to go!
It doesn't get better than Tony Levin, Steve Gadd and the late Richard Tee
as your backup band.
Looking forward to hearing
some of his new players on the 23rd.
The thing is, my friend doesn't have a car, so I drive in return for a ticket, but that's usually when she goes out of town. For example we were going to the Hollywood Bowl in early September but her mother died rather suddenly and unexpected.
Long story short she asked if I'd be willing to go to see Paul Simon with her next Sunday and I said I would. So we are buying our tickets at the Santa Barbara County Bowl Monday. I'm really looking forward to this. As you know, I had just posted Graceland a few days ago here. I'm a big Simon fan. There are some musicians that transcend all boundaries. You can be a fan of Punk, Techno or Heavy Metal and still enjoy Paul Simon. He just has a way....
Look at Gadd's hair here, just too funny.
As for my plans today, I'm going to the store to pick up supplies and then dropping them off at Operation Occupy Santa Barbara. Then I'll be checking up on my friend and trying to get her out of the house.
She's been holing up a bit. I think I know why. She is starting to show symptoms of HD. Its not obvious and one of those things that you wouldn't notice if you haven't been there. She most likely isn't aware of this. All she's probably aware of is that her body is moving differently and people are going to notice. What she probably doesn't realize is that people don't notice because humans by nature are a selfish bunch. Outside of those we share a home with we people don't notice $h*t.
At the end of the day we don't realize that though, what we do think about is how we are perceived by others. Are we seen as drunk or incompetent in some way? Are we seen as different? Do they see us the same way as last week or are we different now? I chose the video "And She Was" because I know that is how I felt when I first began to show visible signs of HD. I kept thinking people were looking at me compared to what they had seen before. What I was compared to what I am.
The way David Byrne keeps saying "And she was" is how I felt, like I have broken record in my head screaming over and over "And he was". Is that why people were still friends with me, based on our past not our present friendships? It took several years before I finally felt comfortable to ask someone if that was why they still spent time with me.
You might imagine my shock when they replied "No, its based on who you are NOW. Your personality hasn't changed, Paul." That was a hard one to swallow because it told me people still liked me for me, and that I was still a friend. It also meant that I needed to continue to keep my half of the friendship up.Finally it means that relationship may change when Huntington's grabs hold of my personality which is a When not an If.
The Friendship Song
In case you didn't guess the person I asked was J. She's one of the few people in my life that I can. and am, totally honest with. Most of the world I hide parts of myself from.
Lately it seems like I'm hiding something from almost everybody. Its frustrating but I just don't want people to know stuff about me. I spend too much time worrying about what they think.
No folks, the album cover doesn't move during the song.
I love the lyrics here. The chorus is so true:
"Everybody needs love and adventure
Everybody needs two or three friends."
Very basic and very true.
I love the message this song sends about technology.
This song always gets me thinking, but more so tonight as I finished rewatching Synth Brittiania. Many of those folks in the music world that embrace technology don't do so on the personal level. They aren't the musicians you'll see with Twitter accounts or Facebook pages. In the case of The Human League for example you find a group Twitter account that is rarely used, a URL that points to a Facebook page run by a fan and an unofficial page that gets information from the group. You don't see any member having a Twitter Account or any other internet access. In fact, lead singer and Synthesizer player Philip Oakey is on the record as being against these forms of tech. We are at the point were technology puts us everywhere, yet we are still nowhere.
Does anyone really care if we just "checked in" to the nearest grocer or electronics shop? Chances are, no one cares. Yet FourSquare is based on the premise that people do care if you are at Starbucks. I just don't get it. Maybe its that I'm too old but I think its basically useless and at most its dangerous by telling people too much info on us.
I either can laugh or cry. I'm choosing laughter on this one. This Namenda is really bringing me to the here and now. A new thing I've noticed today that isn't new at all is that I am in fact slightly "dancing", mainly to the left and then bringing myself back without realizing it. Its leaving a strange pattern on the sidewalk if I watch my feet.
How I know this isn't new is that I had a fall six months ago.I had walked to the left and hit the sidewalk. I wasn't doing well at all that day and had kept walking into this little circle. Now looking back why I didn't realize it for what it was at the time is just idiotic. Instead, it seemed everyone thought I had gotten into a fight but one kind woman. When I'd stop by she shared a story of her tripping at Costco which had given her a similar scrape up.
Dancing Line- Please give
11 minutes to educate yourself on
Huntington's Disease.
I'm wiped out and I didn't do anything today. I did get to the corner store, that was it. Besides that all I did was hang out on Twitter and write this blog. I also watched some music videos.
I don't have the energy to watch a full length movie. Can't imagine getting through it and understanding the plot.
I will be dropping the goods off to the protesters tomorrow, I got a list of what they need today on Twitter. If you are supporting the 99% here is what they needed, I'm sure it doesn't change that much by area.
water
food
first aid
art supplies
headlamps
batteries
pens
paper.
Earlier today I realized that I haven't been very depressed this last week. Something about this med change must have really worked because going in I was extremely bad off. My life's theme song was Elton John's Daniel. Nice bright and cheery, only not.
Now I'm thinking about doing things. Hell, often I end up doing those things too! Somehow, I've managed to try and find things to do. When I write my blog, I find myself putting it off to do other things. Even days like today when I had to put everything on the back burner due to a major loss of energy I recognized it for what it was, loss of energy. I'm not happy about it but i'm accepting it and ready to move on. I'll watch some videos instead. My point is that something is catching my attention. For a while there, you wouldn't have been able to catch it if you stood on your head and sang the entire Sparks catalog backwards.
While listening to Elton John I found this clip. Some people know how to put on a show and some people just put on a show. Meet Elton at New York's Radio City Music Hall performing his hit Levon
Well, I'm going now to give my cat some love. G'nite
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.
