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Tuesday 28 April 2015

Life as an ex- pinball wizard

My neurologist, another doctor from Montreal and a genealogical nurse (the last two are conducting the research into caffeine) have all confirmed that exercise and good nutrition are our major weapons in slowing the progression of PD. These 3 medicos work at the Movement Disorder Clinic and know whereof they speak. So get up off the couch and get active. I do 45 - 60 minutes a day 5 days a week; although, sometimes I get carried away and hit 90 minutes.

Speaking of the research project, I received the most thorough physical test you could ask for. Nothing was said, but I think I came out fairly well. Sometimes silence from the medical team is a good thing.

Good news: 26 is considered normal in the mini mental and one paper I read noted 25 to be the lower level of normalcy. I am guessing the team just going to be noting changes using the test, because I don't think it is too useful for any other thing.

Strange news:Ever since I started taking the caffeine pills, I have had much better sleeps. Coincidence? Too early to be anything other than coincidence (7 days). But, you never know.

Bad news: I think the researchers have concluded that my left side is under the influence of PD. I had hoped it would remain in my right side only, but that's not to be. I think they are right (sadly) because I do feel that if it were not for the medication, I would be a human pinball, bouncing from one wall to the kitchen counter, to a living room chair, until my controller gets bored and "tilts" me, bringing the game to an end. You get the picture. It is an utterly foreign feeling, not having control over your body, being slightly "off" when you turn a corner too quickly or stand too quickly. It is hard to describe but you will understand if you remember when you were a kid, someone would spin you around several times and when you tried to walk, you staggered, slightly off balance. That's what I feel like only not quite so intense....yet.

So here I am. Just a silver ball in the pinball machine of life, going where the flippers take me. (Did I mention PD is operating those flippers?

Even on my better days
PD could beat my best.
I used to be a wizard
But... you really know the rest.
He's got crazy consequences
And would love to see me fall...

When he gets his game on
He sure plays a mean pinball

(My apologies to The Who)

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Thursday 23 April 2015

The King Lear effect

“O, let me not be mad, not mad, sweet heaven/ Keep me in temper: I would not be mad!

So said Shakespeare's King Lear in a moment of Lucidity. Well, your majesty, I know how you feel. Yesterday, I was tested to see if I would be a candidate for a research study on the effects of caffeine on parkinson's (I was) and one of the tests was the mini mental; although at the time, I didn't put 2 and 2 together. I had no idea that it was the mini mental until they told me my score out of 30. While driving home,it came to me: DAMN, THEY JUST GAVE ME THE MINI MENTAL and my score was 26 - not good! 27 is the threshold for no cognitive impairment. Had I realized it was the mini mental, I would have taken it more seriously.

For example, they asked me to name as many words in a minute that began with the letter "F". They should choose a different letter because the first word that popped into my mind was "fuck". Have you ever tried to think of f-words when in the back of your mind all you can think of is "f*#k" (I use symbols lest I be called a redneck). I don't think I performed well on that question. Another was drawing a cube with all lines visible. I can do that with my eyes closed, but I didn't recognize the thinking behind the task. I got all the lines correct, which is what I thought they were looking for as some kind of recognition/dexterity test, but I made it more of a rectangular shape rather than a square-sided cube. Esthetically, mine was an improvement.

26! My only consolation is that my father, who had Alzheimer's, scored 7 and proclaimed "They asked me stupid questions so I gave them stupid answers", and an elderly client who was 84 and was sharp as a tack with his score of 23.

I was involved in a law suit concerning the elderly client with the score of 23, and although the results of the mini mental would have strengthened my case, I came to the conclusion that the test results would mean nothing as it was not highly thought of by some experts (although, I can't remember the arguments against it. Is that in itself an indication of impairment?).

By not taking it seriously, I am afraid I might have caused some unreliability in their research results because the next time, I shall be prepared.

In conclusion, if I am to be labelled "mildly cognitively impaired" I will take solace from the writing of Samuel Beckett. Have you ever read Beckett's "Waiting for Godot" about two guys under a tree who are waiting for another man whose name is Godot? I have read it a couple of times to try to discern its meaning, with only minimal success, but I love the language and it is appropriate to this blog as there is reasonable evidence that one of the characters ("Lucky") suffers from parkinson's. But that is not the motivation for this entry; rather, it is motivated by my score of 26, the possibility of dementia and the reality of life. In the words of Estragon, one of the men who are waiting for Godot:

"We are all born mad. Some remain so".

If I am losing my cognitive ability and am heading down the path to madness then let me enjoy the journey because I think there is joy in madness that only a madman knows

Wednesday 22 April 2015

The Beginning

I noticed I could not see the first entry I made. If you want to start at the beginning goto http://wpgchap.blogspot.ca/2011/08/keeping-it-real.html and other posts beginning in August 2011 will be shown in the menu.

Saturday 18 April 2015

The truth is out there and now it's in here

Here are some facts people believe that scare the newly diagnosed:

  1. The only symptom of parkinson's is tremor. Ha - we wish! Parkinson's has a whole menu of symptoms. For me, a loss of the ability to find words is the most devastating. Those of us who suffer from this tend not to talk, lest we look stupid.

    Also high on the list of woes is the loss of the sense of smell. Sometimes it is an advantage, but food no longer has a large impact on the taste buds. Without the smell, it is less tasty. Then there is a lack of sleep, cruel constipation, depression, and the list goes on. I have been lucky and have only encountered three or four that have taken up residence.

  2. You should put off taking the gold star of our weapons, levadopa, because it only works for a few years. Don't be a believer. Material from the Parkinson's Disease Foundation states, quite emphatically, "Levodopa works for decades. Levodopa does not treat all of the symptoms of PD, but it dramatically helps many of the most disabling motor symptoms."

  3. Parkinson's is fatal - Nope wrong again. People might die as a result of complications, such as damage caused by falling, but for most of us, we will die with parkinson's not from parkinson's. You can expect a normal life span.

  4. Take the medication; yes, but that is the only thing helps. Nonsense, take the medication, for sure; but, I have read that exercising regularly, both physically and mentally, is beneficial in slowing the progress of the condition. One study I read had PWP do moderate exercise for one hour per week and those who exercised, did not deteriorate (the only word I can think of) as much as the control group of couch potatoes. Doing crosswords or any mentally challenging game helps as well. I have taken this to heart; especially physical exercise; although perhaps, to extremes. I may have worn out my welcome repeatedly mentioning my exercise regime, but let me just say that walking over 10,000 steps (on average) five out of seven days has got to be good for you.

I could go on but I think I will end today's sermon and say adieu for a few days. I will be back and will describe a few more myths in a future entry.

A bientot. As Lord Byron wrote:

Fare thee well, and if for ever,
Still for ever fare thee well.”

Thursday 16 April 2015

DOMANI

I read in the newspaper that dogs being transported in airplanes have more space than the human cargo in the seats above them. There are rules to ensure the safety and comfort of dogs while humans have to endure a flight cramped in a total lack of comfort with no, or little thought to the fact that exiting a plane in an emergency would be a nightmare.

Well, for a PWP, even premium economy does not offer enough leg room. I am ranting about this because I am about to cross the ocean by air for the first time (I have been there by ship twice) and even on short flights, for example from my city to Minneapolis, a tad over one hour away, it is hard on me. I get quite stiff and my bum hurts to high heaven. And don't get me going on about airplane toilets and having to line up to use them. I get dizzy just thinking about it.

O.K., I've got that off my chest so on to today's topic, "Domani", that mysterious "tomorrow". I have decided not to worry about tomorrow and live my life to the maximum today. Still, I keep hoping for a breakthrough in the quest for a cure for PD. and headlines and stories can still get me excited, such as


BREAKTHROUGH IN STEM CELL RESEARCH IN PARKINSON'S
"Now, a breakthrough study from Lund University in Sweden shows it is possible to get human embryonic stem cells to produce a new generation of dopamine cells that behave like native dopamine cells when transplanted into the brains of rats".

The trouble is, this method and others work well on rats but a human can't get at it until it has been tested to death. I am lucky (here the blogger touches wood)because PD is taking its time devouring me. But I still hope that tomorrow will be the day that......ah forget it, forget about tomorrow. Tomorrow never comes.

Saturday 11 April 2015

Top 10 from last week

  1. Russia 144
  2. Canada 68
  3. United States 52
  4. Switzerland 21
  5. United Kingdom 21
  6. France 19
  7. Croatia 7
  8. Sweden 5
  9. Germany 3
  10. India 2

Friday 10 April 2015

The Parkie Hoedown

I woke up a little later today, about 5am. I wandered around the house being bored so I decided to exercise, even though it was my day off. To shake off the boredom, I lifted weights and worked on the bosu ball. After a half hour, I was high on life and decided to go for a short walk. It turned into 3 miles. Using my trekking poles, I made good time. Feeling pretty smug, I decided to slow down the last 500m or so. Bad idea. As soon as I stopped to check my Fitbit, I knew I was in trouble. I was into full-blown festination, the good ol' parkinson's gate. I was about to pitch forward onto the pavement when I jabbed my poles into the ground and was able to remain upright.

Not much of a story. The only lesson I took from it was I must be moderate in intensity when I exercise.

That won't happen. I become obsessed with pushing myself. It makes me feel good. Sure, I might fall now and then but, if you want the rainbow, you have to put up with the rain, as they say.

By the way, festination is from the latin "festinare" meaning "to hurry".


Beginning to festinate. Once started, it is difficult to stop.

Wednesday 8 April 2015

Don't bother me. I am busy getting crazy

I am not crazy; although I want to be. It is boring not being crazy but then I read about the possibility of dementia down the road apiece. I should be careful what I wish for. I am tempting fate. Actually, I am not all that worried because (a) I am too lucky and (b) I will probably be dead before dementia kicks in.

Most of us PWP will suffer some alteration of our cognitive abilities as we shimmy toward the next world. The degree to which it affects us will vary from mild cognitive impairment to severe cognitive impairment. Some (I hope "most") of us will just deal with our impairment as we deal with gnats. They can be a nuisance but we can work around them.

The most common cognitive problem relates to speech and is characterized as "word finding" inability. Well, if you have been reading my blog, you will know I suffer from this and have found away around it - I have stopped talking or, when I do talk, I find myself using simplified, less spontaneous speech.

Another cognitive change is the problem of maintaining focus. Our ability to problem solve may decline along the way. We will become less able to zero in on a solution when dealing with a complex matter.

Then there is the big "B", bradyphrenia, just a word to describe how quickly PD affects how we process information and respond to it. This slowing down of mental processing affects us both mentally and physically. It has been characterized as feeling as if you can't walk and chew gum simultaneously.

That's all for now. There are a few more PD affects on cognition but I don't want to bum you out.

Aren't you glad you read this!

Of course there is some good that comes with the bad.For example most of us will retain our IQ's. That's one good thing and a second is I have read that Hitler's PD helped bring the war to an end when it did, instead of going on longer.

So far, only my speech has been affected and maybe a little attention deficit, but I have always been that way. I have always thought that I was not being inattentive, it was just that I was attending to something more interesting, and any other thing I was supposed to be attending to was just white noise and ultimately, collateral damage.

Still, a little craziness and chaos just makes life more alive. As Mark Twain wrote, "I became insane, with long intervals of horrible sanity."

I know what you mean Mr. Twain.

Monday 6 April 2015

Absence of Evidence

Absence of evidence is not evidence of absence

I have to remind people that just because I show no outward symptoms does not mean that I don't have PD. I do. I know that because occasionally symptoms do come to the surface. For example, when I open my mouth to talk and I have had a late night, I stumble to find words or, like at a lunch today, I had too much saliva in the back of my throat and had to clear it before I said anything and, of course, if I have forgotten to take my medicine, my right hand takes on a mind of its own. But, it is rare people put 2 and 2 together and come up with a PD diagnosis. Why's that you might ask. Well, it is rare that I forget my meds so people don't see the shaking; clearing the throat can be anything, cold, flu, arrogance; and, as for the inability to speak fluently that just leads people to think I am stupid, and there are times when there might be some truth in that assessment. In any case to look at me would lead you to the conclusion that I don't have parkinson's, but that would be false logic.

This short diatribe is the result of a news item I saw on TV. The news guy was talking to a 13 year old, Winnipeg girl, who has raised $40,000.00 toward finding a cure. She started 4 years ago when her dad was diagnosed. He sat proudly in the background and what did I think?

"Doesn't look like he has parkinson's".

Right! Doesn't look like he has it (absence of evidence) therefore he must not have it (evidence of absence).

I was a victim of an appeal to ignorance. Completely illogical.

"My bad" as they say. "Whoops", as I say. To err is human. As for logic, it has been defined as "The art of thinking and reasoning in strict accordance with the limitations and incapacities of the human misunderstanding."

Ambrose Bierce slays me.

Wednesday 1 April 2015

Just some more black eyed children

I was listening to Coast to Coast last night when some fellow was talking, quite seriously, about the Black Eyed Kids.

Black Eyed Kids(BEK) are pale skinned children between the ages of 6 to 16 who may come to your doorstep and ask to be invited into your home. They seem to be dangerous and evil. They can't enter your house unless invited. You know, like vampires. I haven't seen any BEK myself but we people with parkinson's know they are out there, lurking, ready to make a home invasion. No invitation necessary for our Black Eyed Kids.

Our BEK really are evil and include:

  • Sudden drop in blood pressure when standing, which can cause dizziness and falls.
  • The most evil constipation. Straining to release the bowels can cause a drop in heart rate and higher or lower blood pressure - again dizziness and maybe falls.
  • Exhaustion
  • Exacerbation of PD caused by anxiety and stress.
  • Problems with thinking-not IQ, just slower to make decisions
  • Word finding problems
  • loss of facial expression and
  • the granddaddy of them all, dementia.

Of course not all of these BEK's will be experienced by PWP. As I have said before, this is a designer disease. No two outfits are the same, everybody is different, but I kind of recognize one or two in me. As for the others, I am just not going to invite them in and they won't get in without a fight.

Black Eyed Kids indeed. Just another urban legend unless, that is, they are metaphors. We know all about metaphors; don't we?


"Please let me come in. It won't take long."