The wheels on the bus go round and round....

There are times I feel like a sap in a malicious GROUNDHOG DAY movie. As I have said in earlier posts, my symptoms come and go. Let's see. What now?

• Swallowing - I am having a slight problem swallowing, just as I had a couple of years ago.
• Tremor - although omnipresent, there are calm times and jiggy times. This is one of the jiggy times. Much of the tremor is not openly apparent, unless one has X-ray vision and can see into my right arm where the trembling muscles are having a wonderful time at my expense.
• Falls - I still bear a large, unattractive scar from my last fall so you'd think that would serve as a reminder to me to pick up my feet when walking. No such luck. I stubbed my toe and went head-over-heels. Fortunately, there was sufficient new snow on the ground to soften the blow and the thick gloves and other winter gear I was wearing protected me. No harm done. Except to my ego.
• Night Twitching - this had dissipated over the past few weeks but it has returned with a fury. All I need do is close my eyes and both legs and arms and sometimes my neck will "twitch". It doesn't last long and is no great bother. It is as if the muscles had stored up excess energy and were enjoying themselves by releasing bulks of that energy at varying times in various body parts.

There are 3 symptoms that never change

• Exhaustion - I wake up tired and I remain tired all day until the evening when it is time to sleep and I can't. I now get by on 5 hours sleep and I need more.
• Slowness - PD slows you down. Yesterday, downtown, I thought I was moving at a reasonable pace but I was passed by a couple of drunks and two elderly gentleman, one of whom was using a cane!
• Finally, there is my voice, or lack thereof. I should have practised my voice lessons. The course I took from the speech therapist was excellent and helped alot. Unfortunately it is up to the victim to practise and I did not. Now I get tired of hearing "Whatzat?" "Pardon me" and the humiliating "Will you speak up a bit, I can't hear a word you are speaking"

Sadly (maybe gladly) I daily cultivate a quiet serenity at a snail's pace while catching the occasional afternoon cat nap or a British TV series on Netflix (see below) . There is something eerily magical about solitude.

Lip Service

The Hour

DEFCON 2

RELAX, myself scolds me, scale readiness back to DEFCON 2. You were prepared for a major battle, but it never appeared. Why? Because you took that extra 1mg of Mirapex in your daily dose and the tremors have gone into hiding. Things will be good until the next time but be ready to move to maximum readiness because you are running out of ammunition. You are already maxed out of amantadine and you are now at 4mg of mirapex - only 4mg per day left in the ammo dump.

That's all true, I respond to myself, but you forget. I am a nuclear power. I still have the bomb. I still have L-dopa. I hope I won't have to use it but the odds are against me. For now I use what I have and get back to a state of semi-normalcy during this cease fire.

"In moments of clarity, I believe we have your number, parkyman. It is only a matter of time."

"GRRRRR Dream on, little dreamer, dream on"

There will come soft rains

We are here as on a darkling plain
Swept with confused alarms of struggle and flight
Where ignorant armies clash by night

The poet, Matthew Arnold, who wrote "Dover Beach", died at the age of 66. I have surpassed him by one year. He died of a heart attack while running to catch a street car. That kind of death is not in my plans. No heart attack for me; so, how shall I go? I hope I have a dignified death because it is possible that my dignity may suffer over the next decade or so. Like the last two lines of "Dover Beach", I am clashing with my enemy, PD, but, alas, my foe is winning at the moment. I have had to increase my dose of mirapex in order to hold the front line and calm the tremor in my right hand. I know I can't win the war, but the occasional victory in a battle would be much appreciated.

If there is anyone out there, some kind of genius, who can help me win the war, give me a call. I will be indebted.

Some of the time I fear I will not live long enough to see a cure and you, you sad genius, will not get your reward. At other times, I am convinced that I will see the day when PD is eradicated. Like everyone else, I will have a rendezvous with death, so get to work but keep in mind,"He that dies pays all debts" (W. Shakespeare).

That Shakespeare was one smart cookie.

There is a touch of irony there.

"Shakespeare"! Get it?

Gimme a break, Plato

Nothing in the affairs of men is worthy of great anxiety

WHO SAID THAT???

You were a very smart philosopher, Plato, but apparently you were never the victim of the shaking palsy. We who have been stricken have our moments of pure anxiety. You would too if you could no longer predict a serene future, relaxing at the lake in your old age. Our futures are clouded by the specter of PD. We know we are losing dopomine producing cells daily and there is nothing we can do about it. We can't even predict the onset of any of the 5 stages because each one of us will be different. I believe I am progressing slowly as the third anniversary of my diagnosis looms over me. I don't feel much worse than I did before diagnosis. I have a positive outlook but there are those moments, when I am alone with my thoughts, it comes to me...ANXIETY. I mean I have a DEGENERATIVE brain disorder, that should allow me be a little anxious now and again. So screw you Plato!

I have been delighting myself about my lack of symptoms then my wife reminded me:

• People can barely hear me
• Every so often my face shows no expression
• every so often I am stooped forward when standing.

Bugger this! I am going to watch "The Killing". That should cheer me up!

A pox on the heads of ......

Amantadine, that powerful, fabulous drug is in short supply. For two months my pharmacy has not had any amantadine and nobody knows what's going on with manufacturer. That is the drug that I believe, controls my tremor. Without amantadine, the shaking palsy would return. Fortunately, there is a place in town that fills its own capsules and I was able to get 300 of them but a 4 per day they won't last that long and then what???

I have an odd sleeping pattern. By 8pm, when I take my last dose of amantadine, I am totally, inhumanely exhausted. All I want to do is sleep so I watch TV to spur on the appearance of Morpheus, but within an hour or so, I find myself wide awake and unable to sleep. Now I know why.

Now listen carefully, my PD brothers and sisters. You should really read the information sheet that that accompanies the drugs. You start to read it and then stop after the first couple sentences. Why stop? For me, I never read it because it lists so many side effects,it scares the bejeezus out of me. Well, the 300 pills I purchased came with a sheet that informed me of only the common side effects including AMANTADINE CAUSES INSOMNIA. Whoa! Insomnia! That can't be good. Hey, maybe that is why I am sleepless after that the 8pm dose. I think that might be the case. Now I will have to screw up my schedule and take the bitter little pill at 6pm or, I can stop taking it or, I can reduce the dosage. Of those 3 choice, I think I will try screwing up my schedule.

I really believe my PD is progressing more slowly than most. As I said in an earlier entry, most of the weird symptoms are gone, leaving only the tremor and exhaustion. But, that's not quite true, I forgot that people can't hear me when I am speaking, that my gait is slowing down and that I am having difficulty rising out of soft sofas. So those symptoms remain as a constant reminder that the disease is still progressing. My wife, (where would I be without her)who is a physiotherapist, has helped me learn new techniques to overcome some of my difficulties. A physiotherapist! Could a person with parkinson's ask for a better caregiver? Judging by the picture below, she has her work cut out for her.

It's a moody Manitoba morning

I compare PD to a game of Snakes and Ladders, the snakes being the symptoms that can be very rude and the ladders are the recovery from those symptoms. My encounter with PD has been a series of suffering and recovering, down the snakes and up the ladders. Fortunately, so far at least, for every snake, there has been a ladder but, unfortunately for every ladder, I have slipped down a snake. Let me count the ways:

1. Trouble swallowing (snake). Lasted about 3 weeks, disappeared and has not returned (ladder)
2. Exhaustion to the nth degree (SN) Yes, but an hour's nap revives me until around bedtime (LA)
3. excessive saliva making me slur and spit out my words (SN) Now excessively dry mouth is my constant companion (due to medication). Thank goodness for Biotene spray / toothpaste, that relieve dry mouth (LA)
4. Inability to find words when speaking (SN)has led me to write out my thoughts wherein I have no inability (LA)
5. Right hand shaking (SN)drugs keep it quiet,

Now for the ladders

1. Amantadine is a great drug for me - works wonders!(LA) The manufacturer has slowed production, making it difficult to obtain(SN)
2. No sense of smell - makes it easier to be around my granddaughter when her diaper needs changing (LA) I can't smell food, flowers, gas, etc. (SN)
3. constipation - yes, believe it or not - I used to suffer from the other end of the "poop" spectrum. Now I can exercise without having to have a bathroom nearby (LA)By the 3rd day, voiding becomes unpleasant to say the least.(SN)

These symptoms come and go and are unpredictable. This appears to be a good thing. I suffered greatly at first, but now, right at this moment, I am feeling quite normal and to boost my normality I have reasoned the following:

• hallucinations outside, early morning, are either caused by darkness and shadows in the moonlight or an overactive imagination.
  
• Hallucinations inside are always out of my right eye and are early in the morning when I am concentrating on the daily crossword. The right eye that was subjected to laser surgery, left many "floaters" -ie - lines and shapes that float around somewhere in the eyeball. I have decided that these floaters fool my mind into seeing microsecond apparitions and they are not hallucinations.

Of course, I can't explain nonexistent barking dogs, or someone walking on my bed, or an astronaut floating beside me, except to conclude I was dreaming.

The best thing about dreams is in that special moment, when you are between asleep and awake; when you don't know the difference between reality and fantasy; when, for just that fleeting second, you believe, without a doubt, that the dream was reality, and it really happened.

That about sums up my preference for dreaming, for unreality that you hope will become real.

In fact, I am thinking about going for my nap, right now, to dream about snakes turning into ladders.

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I see dead people - a critique of a sense of self

Well, I don't really see dead people, but I do see strange people out of the corner of my right eye when I am concentrating, most often in the morning. I haven't had any hallucinations in quite some time but they have come back. The latest ones this past week include a 7ft man standing off to my right, putting on his coat, a little girl dealing cards (again off to my right) and this morning, on my walk, I saw some guy riding a donkey (or it might have been a miniature camel) down the middle of the street.. Just a trick of the dark, I assured myself, but it kept on coming until I was about 20 feet away, when it disappeared. Am I dreaming? Are my eyes playing tricks? Do I have a hyper-active imagination? Are they hallucinations? Or maybe I have mad cow disease.

I am no medico. I am just a normal guy and I have no idea what causes me to see things. They don't bother me because I know they are not real and I never get lonely.

I am definitely not crazy. I think it is just another of PD's little gifts, either alone or with the help of my medications. And don't label me as being delusional, (defined as a belief held with strong conviction despite superior evidence to the contrary) because I am not. Or maybe that certainty is in itself delusional. Maybe I am delusional, but it leads me to a higher calling. That great American humorist, Ambrose Bierce, once commented that any man who could analyze his own delusions was a philosopher.

Yes, that is what I am, a PWD (a philosopher with delusions). I have to be; PWP have to be philosophical and perhaps delusional to maintain a strong sense of their futures. To me, my hallucinations are the shadows in Plato's cave, just a part of my non-reality.

This little catharsis has led me to a conclusion----I have an infinite capacity for self delusion---- ----I am, without a Platonicall doubt, a delusional philosopher.