I am the Lord of the Dance said he.

I saw, on TV, that somebody was going to research the effects of dancing on the progression of PD. I have heard that it is the best exercise for PWP.

Hhhmmm. I would rather trim my nose hair with a weed wacker than get up and dance.

Of course having 2 left feet has not always the case. In my 20's, young and single, I danced up a storm. A perfect Fred Astaire. I had moves he could only dream of. For some curious reason, rhythm only came to me after the 10th beer. I felt cool and I knew I looked cool. But, sober the next day, reality would arrive and Robert Burns would sneak into my brain:

"O wad some Power the giftie gie us
To see oursels as ithers see us!

But, the DWP (Dancers with parkinson's), tout the benefits of dance. Who am I to argue? Maybe I will give it a shot and try some solo Watusi before going public. That should be sufficient motive to remain stationary. There is a better chance that you will see me being eaten by a shark on the Canadian prairies than you will ever see me dancing; unless, I have imbibed. Concerned for my dignity, I think I will stick to my exercise regime and leave dance to those who have the moves. Anyway, here are 10 reasons why PWP benefit from Dance:

• Dance develops flexibility and instills confidence.
• Dance is first and foremost a stimulating mental activity that connects mind to body.
• Dance breaks isolation.
• Dance invokes imagery in the service of graceful movement
• Dance focuses attention on eyes, ears and touch as tools to assist in movement and balance.
• Dance increases awareness of where all parts of the body are in space.
• Dance tells stories.
• Dance sparks creativity.
• The basis of dance is rhythm.
• The essence of dance is joy

Some of these reasons seem to be a little.....well, you know what. But, if you are "into it", go ahead and dance the night away. You have my permission but, as somebody said, someone watching you who can't hear the music, will think you have gone insane.

By the way, hits have passed the 25,000 mark and I had my first hits this week from Iraq and Ukraine where I hope the troubles are resolved soon. Peace be to you and yours.

I'd rather be a hammer than a nail.....

Went for my walk this morning and encountered 4 teenage skaters, skating down the middle of the street, talking loudly at the speed of light and trying to sound like Charlie Manson. They had no adjectives except the f-word. Come to think of it, the f-word was also used as a verb when one told another to do something that is anatomically impossible. Did I react? No, I put my ear buds in and listened to Billy Joel. I was somewhat nervous, until they passed without showing a scintilla of interest in me. A touch of paranoia, maybe? They were just kids living large. But what were they up to at 5AM?

Paranoia is a symptom of Parkinson's, which should come as no surprise, after all we members of the PD tribe have brains that are not in great shape. But, paranoia can occur in ordinary people too. A good friend of mine recalls walking through a field on a dark, dark night, when she heard a noise behind her. There were teenage boys on the same path. She began to get nervous as they got closer and her paranoia got the best of her. She pulled out a pocket knife and turned quickly. One of the boys saw the knife and yelled "It's a crazy woman with a knife!! RUN!". That story always makes me smile.

Back to Parkinson's delusions. Delusions are very common in people with parkinson's. I read somewhere that 2 out 3 victims will suffer from momentary, but not troubling, hallucinations out of the corner of their eye (see earlier posts - I have had a few). This condition may become more severe with age.

Delusions are usually of a common theme, typically of spousal infidelity. Other themes are often paranoid in nature (such as thinking that people are out to steal from one’s belongings, or to harm or place poison on their food, or substitute their Parkinson medications, etc.) Because they are paranoid in nature, they can be more threatening and more immediate action is often necessary, compared to visual hallucinations (Zahodne and Fernandez 2008a; Zahodne and Fernandez 2008b; Fernandez 2008; Fernandez et al. 2008; Friedman and Fernandez 2000). It is not uncommon that patients actually call 9-1-1 or the police to report a burglary or a plot to hurt them. See Okun article "

As for me, I ain't afraid of no PD. Instead, I am trying to visualize paranoia as a skill, but I don't seem to be developing exemplary credentials. You see, I am a little frightened that I may be wrong.

“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.