“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)

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)

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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Aging....What a ludicrous concept

I am feeling old these days. I just had my 68th birthday and I am rounding 3rd and heading for home. What have I got left? 15 maybe 20 years. I would love to see my first great grandchild but it ain't gonna happen.

Growing old is a pain, a mandatory, but entirely legal, form of punishment we all face, even though most of us are innocent of any crime. Growing old with PD just adds to the excitement. Old age is a sanctuary for every back pain, headache, arthritis, etc.....you know, all those miseries that were not present in your youth. Growing old with PD just amplifies that catalog of human woes, by logarithmic proportions.

One of the biggest problems of aging with PD is that, for now anyway, I am experiencing a very slight loss of balance. When I stand or turn suddenly, just for a second, I feel a fleeting loss of control. That's a feeling that you paid for in your twenties when a 6 pack of beer cost $1.65 and oblivion was the objective. Not anymore. It's become my own personal windigo

This momentary loss of balance caused me to bring out the ol' bosu ball and I went at it for 30 minutes this morning, working up quite a sweat but also reassuring myself that I should be able to remain vertical for a few years yet.

Yes, growing old and worse, growing older saddled with PD, is a ship wreck. It's a joke played on us by the gods. I just have one question of those malevolent deities. You wrinkled my face, turned my skin into tissue, slowed me down, gave me mysterious growths that my dermatologist calls "the barnacles of life". And then, just for kicks you gave me PD to contend with. But I ask you, why? Oh why, o why? did you have to take my hair??!

A house is not a home - a tale about homes, children and laughter

We moved!

My wife and I lived in the same home for 40 years and raised 3 great kids. It was and always will be "home" to me. I thought they would have to carry me out in a box, but PD was making taking the stairs a little scary and we knew it would only get worse. So we moved into a newly renovated bungalow and who knows, it might become a home someday but for now, it is just an amazing house.

My grandchildren have taken to the new house. The two boys first head to the fridge and then to the basement where the Wii machine awaits. The girl is less excited but eventually she joins her cousins. They are great to have around. They make me laugh and a home needs laughter.

The latest laugh came via my granddaughter who is not yet three. For the purposes of this tale, she shall assume the alias of "Brenna".

The scene

My daughter stops to get gas. The owner of the gas station, who is a Sikh and is wearing his turban, looks into the car. Brenna thrusts her pointed finger at him and says, "I DON'T LIKE PIRATES!".

My embarrassed daughter explains to Brenna that he is wearing a turban as that is part of his religion. She tells Brenna he is not a pirate, he is wearing a turban to which Brenna responds "Actually mommy, some people call turbans pirate hats.

I can never get enough of those 3 kids. They lighten my burden.

As for the PD, it remains on the brink of the stage 2 abyss but I was able to walk 2 miles twice last night so my incident at the lake may have been a one-off thing, much like many of the symptoms I have written about. Symptoms that hit me hard but went away and have not returned.

One can only hope.

My body wants 11 dollar bills. I've only got 10

I think I am still at stage one of the five stages but my body seems eager to move on

Stage one:
During this initial phase of the disease, a patient usually experiences mild symptoms. These symptoms may inconvenience the day-to-day tasks the patient would otherwise complete with ease. Typically these symptoms will include the presence of tremors or experiencing shaking in one of the limbs.

Also during stage one, friends and family can usually detect changes in the Parkinson's patient including poor posture, loss of balance, and abnormal facial expressions.

Let's see

• tremor in my right hand and the occasional shake in my left. My right hand, or parts thereof can be brutally jumpy. Fortunately, it currently can be controlled by drugs, but not always. I was at a piano recital for one of my grandsons when two fingers started violently tapping. My son asked me if I could stop them. I was trying to so using my mind, when my 5 year old grandson sitting beside me grabbed the two miscreant fingers, stopping them immediately. "There!" he muttered quietly.
• poor posture. Yep, when I am standing, I tend to roll my shoulders forward and I have to fight to resist that urge. When I walk, I bend forward at the waist a couple of degrees.
• loss of balance? That is becoming my middle name. After my abbreviated walk last week, I have not walked any distance since. Instead, I have been a demon on the stationary bike. No fear of falling there; however, yesterday I went up to my cottage and decided to take a long bike ride. I was a little unsteady at first, but finished 4 miles without incident. Unfortunately there was a slight balancing problem and I have a feeling that my future will one day forbid the use of bicycles.
• I don't have an abnormal facial expression, probably because my normal facial expression is somewhat morbid already.

Nevertheless, I am standing on the edge of the abyss of stage two. I don't want to jump, but it is inevitable. I promise myself to keep fighting my body's desire to make the leap.

Mark Twain once said "Get a bicycle. You won't regret it, if you live."

Ok, that's what I will do. I will continue to pedal even if I fall off and hurt myself. Hopefully I will survive those falls, with little damage, so I can keep on pedalling to slow my inexorable march into the abyss.

Sunday may belong to the Lord, but Saturday, May 31st, belonged to the devil

Saturday, May 31, 2014

My wife and I are at the cottage. I am rested and feeling pretty good. My wife is occupied with those things that occupies wives.

I decide to do my 3 mile walk.

I start off down the street, jog across the highway and head north, walking in the ditches in case I fall. There is a spring in my step. I am happy and enthusiastic. At the one mile mark(approximately), I gingerly cross over the creek by way of the "Use at your own Risk" footbridge. It is old and scarred with repairs here and there. It bounces and sways as I cross. Now, when I think about it, that rickety old bridge may have foreshadowed things to come. I am beginning to tire but I shake it off and continue, past the marina and tennis courts, dismissing the dollop of doubt that is occuping my thoughts. I am heading toward the town "center". Approaching the town's boardwalk, I feel something is amiss. Something is not right. My legs are not working like they should be, as they have always done, never abandoning me, even when I punished them with 12 mile runs. They are starting to feel weak and rubbery.

Evil forces are at work here.

"It's only my imagination," I tell myself, aware of my tendency toward hypochondria .

But then I start to slow down.

I have always been a fast walker / runner and in my past life, I would have had a difficult time walking this slowly. I continue another 100m and not only am I walking slower, I am beginning to weave, much like I did in my halcyon days of over-drinking. My stride is turning into a shuffle and I do not find this the slightest bit amusing. In fact, I am worried. I cannot lengthen my stride or in anyway control my speed. I think anybody watching will brand me a sot.

I push on. Try as I might, I cannot speed up and the weaving is becoming more pronounced. Still 3/4 of a mile from the cottage. OCD forces me onward, step by plodding step. It is tortuous. My body is being pulled forward and to the left. I begin to fear a fall. I am 2 blocks from home and afraid to cross the highway. I am just too slow and jogging is out of the question. I picture myself falling in the middle of the road.

I sit down and call my wife on my cell, "Can you pick me up?"

I tell her where I am (at the end of the street) and she says, "I will be right there".

Four minutes later, I am in the cottage, sitting down and the weird feeling I had is disappearing.

I know now I could not have crossed the highway let alone make those 2 blocks!

I am fine after an hour or so, but this is my first encounter with PD that scares me.

Oh well, all's well that ends well (for now) but I ask you, what would we do without wives and cell phones!