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Tuesday 29 July 2014

“Doubt … is an illness that comes from knowledge and leads to madness.”

PD IS DRIVING ME CRAZY. It's the exhaustion. It is like an albatross on my shoulders wearing me down. I can't nap because then I can't sleep at night, even with drugs. Exhaustion and, oh yes, my work are moving me toward the bliss of insanity. There is just too much of both. I feel like I am juggling elephants. One of them has to go and, since I have no control over exhaustion, my victim will be my work. I am going to retire. Mind you, I said that in June, then July and now I have work through September....so stand by.

Parkinson's is an insidious condition. It hits you everywhere. Some of my symptoms have been periodic but I have several that seem content to stay; eg, tremor in right hand, dry mouth, dry eyes, a voice like a little girl suffering from a serious cold (why o why did I not take the voice therapy seriously), a tendency to mumble, vivid dreams (some of which I enjoy), a loss of smell and a slight loss of balance when standing or turning. I am not complaining, there are more people in far worse condition. Consider this poor chap in the fourth video. Thank God for medication. I hope I never get that bad. I expect to be dead before reaching that point and the PD drugs do work well on me. I am not afraid. I am just going crazy, that's all.

“Mad Hatter: “Why is a raven like a writing-desk?”
“Have you guessed the riddle yet?” the Hatter said, turning to Alice again.
“No, I give it up,” Alice replied: “What’s the answer?”
“I haven’t the slightest idea,” said the Hatter” (Lewis Carroll)

Thursday 17 July 2014

Don't tell me to follow my dreams, I will catch up with them another day.

That old adage "follow your dreams" bounces around in my skull. I think if I followed some of my dreams I would end up endlessly singing, "one flew east, one flew west and one flew over the cuckoo's nest". Some of my dreams, as I have droned on about earlier, are virtual reality, bone-chilling happenings. Here is the latest.

It is a very hot prairie day. I am in my yard, on the grass, looking at the deck. I see a wasp crawl into a small hole at the foot of the deck. I begin to wonder if they have taken up residence. I get a small stick and drive it into the hole. I hear a tumultuous buzzing noise and the wasps storm out from the hole and start to sting me. I begin to run. These are not your ordinary wasps. These wasps are organized. I think maybe they have radar as they follow my every step. I am getting woozy when, like magic, a piece of canvas appears and I dive under it, safe from the wasps for the time being. But, they are hovering like helicopters and I know they are waiting for me and they are very patient

In reality, and by that I mean, in real life, my body let loose with a full body twitch and I dove under the covers, safe from my dream. The next day, my wife said something to the effect "You practically jumped off the bed last night." The joys of PD.

Walking tip for PWP - march as if you were in the military. I find that if I concentrate on my arm movement, my legs have to follow suit. Consequently, my stide length gets larger and my feet then naturally begin the "heel - toe" regime. Walking is good for PWP. My tremor all but disappears when I walk. But a caveat...do it when there is nobody watching, you can look a little silly. But don't give up. Keep on keeping....(you know the rest) The watch words for PWP are: exercise and then exercise some more, no matter how much you despise it.

"When it comes to eating the right food and exercising daily, there is no waiting until tomorrow to begin. Tomorrow is a disease" (author unknown)

Wednesday 9 July 2014

I'm so exhausted and yet I feel like I'll never sleep again (Maya Banks)

"Fatigue is one of the most common symptoms experienced by people with Parkinson’s. Various studies have indicated that at least 50% of people with Parkinson’s are affected by fatigue, and it is frequently one of the most disabling symptoms.
"

I have visited the National Art Gallery in Ottawa several times and one painting that I really enjoy is "Voice of Fire", painted by Barnett Newman. It was acquired by the Gallery for 1.8 million dollars. A red stripe and 2 blue stripes. I know, I know. Anybody could do the same for a lot less than the 1.8 million dollars it cost. But isn't it beguiling. I mean what was Newman thinking when he painted this? What is its meaning?


Not very impressive, is it? But wait until you see it housed at the end of a gallery that looks to have been built specifically for it. The "painting" rises 18 feet (8 feet wide) and seems to burst out of the floor. It is interesting, but I don't know why I like it....I just do and frankly, I don't care why. Some questions don't have answers..

I was reminded of the "Voice of Fire" while on my early morning walk on the beach a couple of days ago. On the horizon was the top 1/4 of the round orange ball of the sun. As I watched, over a period of 10 or so minutes, more and more of the ball escaped the lake until it exploded out of the water in all its orange perfectness. It was amazing and I wondered if the same mechanism as is active in Barnett Newman's painting evoked the same awe in me.....well, to a point anyway. Let's not get carried away.

But this little essay has little to do with paintings or sunrises, it has to do with fatigue. Exhaustion, to be precise. Nobody can give me a realistic interpretation of Voice of Fire and nor can they adequately describe the sunrise I saw. I challenge you to define "exhaustion" so that a listener gets a feel for its reality.

About 50% of PD victims suffer "exhaustion" to the nth degree or as I wrote earlier, it is exhaustion at a cellular level.

Doctors often describe more than one type of fatigue in Parkinson’s:
  • muscle or Peripheral fatigue - the loss of strength with repeated muscle contraction or activity. This type of fatigue is frequently reported as a sense of weakness, and probably earned the disease its original name “paralysis agitans” (‘paralysis’ referring to weakness and ‘agitans’ referring to the associated Tremor). Muscle fatigue is usually called ‘peripheral fatigue’ by specialists and some studies have shown that people with Parkinson’s who experience it noticed an improvement when taking levodopa or other dopaminergic medications
  • central fatigue - this involves an inability to cope with physical and mental tasks which require self motivation. This type of fatigue does not seem to respond as well to levodopa and dopaminergic medications as peripheral fatigue
  • mental fatigue – a difficulty in initiating and sustaining mental tasks of any type
  • physical fatigue – a difficulty in carrying out physical activities.

Oddly, I don't fit into any of those categories and yet I wake up tired. Fatigue is my Anti-Tonto, constantly at my side, but no kemo sabe to me. My wife thinks I work too much and should retire completely. And I would except, I might go crazy with nothing to do. I would end up watching TV all day.

I can't quit. I would rather die from exhaustion than from boredom. So I will keep working and filling the little spare time I have with paintings and sunrises until I fall into one of those cateqories and get too tired to enjoy wasting the time I have left.

Am I already wasting time with this blog in a vain attempt to explain my situation?

Do popes poop in the woods? I think not.

block quote are from European Parkinson's Disease Association

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