Per aspera ad astra

From the May 15th edition of "the guardian weekly" the following:

"Exercising has proved beneficial for many neuro-psychiatric conditions - anxiety, depression, schizophrenia, Alzheimer's and Parkinson's disease. It can also help prevent cognitive decline. 'Physical activity is one of the most powerful factors stimulating brain plasticity, in the cortex in general, and in adult neurogenesis in particular, above all in the region of the hippocampus, which plays a part in memorizing processes,' says Professor Pierre-Marie Lledo, head of the neuroscience department at Institut Pasteur in Paris.

Alright, so I don't know what "brain plasticity", "cortex", "neurogenesis" and especially "hippocampus" mean, but the words are big enough and so smooth sounding, I do believe they lead to the conclusion that PWP should be exercising.

I will refrain from telling you "I told you so" to advise you to rid yourself of your sedentary life style. Just 3 hours a week of moderate exercise (walking, swimming, gardening") or 20 minutes three times a week of intense activity (running, aerobics, squash for example) cuts the risk of premature death by 30%.(from the same article) If it can stall death, think what it can do for PD!

I know exercising is a pain in the ass. I hate every step but I force myself to do it, usually 5-6 days per week, and sometimes 7. I have no fun doing it. I would rather be a couch potato but I know that every miserable step is worth the misery.

Hopefully a won't drop dead pursuant to the Law of Unintended Consequences.

Dreaming & Remembering

I had one of THOSE dreams last night. Virtual reality. I saw 2 people at the end of my bed and one said to the other, "We can charge him with rape." It was so realistic, I sat straight up in bed to proclaim my innocence. Of course, nobody was there!

Sometimes I enjoy the reality of the dreams but at other times, they scare the colour out of me. I become a virtual albino.

Speaking of sex, the drug, mirapex (pramipexole), that I take to remove the hand tremor can have serious side effects that can devastate families. Among the those are:

• greatly increased sexual urges
• compulsive gambling
• compulsive shopping
• sleepiness or trouble sleeping
• constipation
• dry mouth
• increased urge to urinate or increased frequency of urination.

But, the drug works! For me anyway and luckily I have not had any of the side effects other than negative sleep patterns, drymouth and constipation. The latter was welcomed as I suffered from Montezuma's Revenge for some time.

A story out of time

I am flying out to Vancouver to attend my friend's funeral service. If you have come here to learn about PD, you can stop reading now. The following is just a memory of my friend. I can only chuckle at some of our adventures.

This one popped into my mind when I wrote "Montezuma's Revenge" above. It has all the qualities of a good drama with a few laughs thrown in.

When I last met with Brian, he told a story, that I had forgotten (but remembered as he told us), when we stupidly took our unplanned revenge (sort of) on a much bigger opponent

It was a cold winter night and Brian and I were outside shooting with Brian's BB gun. We stood in the shadows of his house and watched as the town tough guy walked by. This fellow is probably a good man now (we all grow up) but back then he was one scary cat. Without thinking of the unintended consequences, I said to Brian "Give me the gun," and he handed me the rifle. By this time, the tough guy had passed without noticing us. I took off my right mitt to free my fingers; raised the gun to my shoulder, aimed and pulled the trigger. I shot him in the back, thinking he wouldn't feel it through his heavy parka. Apparently I was wrong. He stopped, turned around, saw us and grunted a small, but eerily frightening, bellow. I quickly gave the gun back to Brian, who now stood there, mouth agape, with a "not me" look on his face while holding the smoking gun.

The tough guy started slogging through the snow toward us. We looked at each other and Brian yelled "Run". He flung the gun into a snow bank and we ran until the thug gave up.

Oddly, there was never anything said about the incident the next day in school. We kept waiting for the bomb to drop, but he had apparently forgotten or forgiven. No reason was ever given to us for his munificence and our Sleepy Hollow lives went on as usual.

You can see that this story had nothing to do with PD. It contains no metaphors or lessons. It was just a story.

Being Alive and Dead at the same time

I was getting only 3 - 4 hours of sleep each night; now, I am getting 6. Why? What has changed? The only thing different in my life is the pill I am taking for the caffeine study so, either the caffeine or the sugar pill placebo is the cause. Who knows. All I know is that I wake up feeling pretty rested. Too bad it doesn't last long. I am soon exhausted, but in a different way.

The type of exhaustion I am talking about arrives around 2 in the afternoon and it cannot be cured by sleep. It is dangerous and embarrassing.

Yesterday I went to a lecture on three topics (1) the role of the mortgage broker (2) Changes to various Acts (3)the use of a power of attorney in dealing with land. I had to attend as part of my continuing education. It began at 1pm. The panel chairman gave a few remarks which I enjoyed but by the end of his remarks, exhaustion begins to settle into my body. It is as if somebody is filling me up with water - the tiredness begins in my lower legs and starts moving up my body until I am full. About half way into the mortgage broker's presentation, I was all-consumed with exhaustion, fighting to stay awake and I mean that literally. My eyes would momentarily blank out and I would suffer one of those head shakes that everyone suffers when overtired and trying to stay awake. Consequently, I heard nothing about mortgages and what little I did hear, I did not understand. I told myself to go home, but I was worried I might fall asleep at the wheel, so I stayed. I suffered through an interesting discussion on the Acts and just as the speaker was closing, as suddenly as it had come, exhaustion left me. I was wide awake for a particularly interesting and entertaining presentation on powers of attorney. I heard it all and even stayed for the question period.

This mid afternoon tiredness freaks me out. I decided to research the problem and discovered...I had read it all before. However, the best description is still found in the Fox Foundation and bears repeating:

One of Parkinson’s more insidious symptoms is fatigue. This is not your garden variety bone-tired. This is fatigue on a cellular level. Your body is working overtime to accomplish the simplest of tasks: Taking a shower, answering the phone, pouring orange juice. In addition, you may be coping with the combination of possible cognitive problems knows as "Parkinson's apathy". These problems include difficulty initiating projects, inability to follow complex instructions, short-term memory loss and difficulty in switching gears midstream.

Now do you get the picture? My reality is a continuous annoyance!

Life can be a bitch

Sometimes life just gets you down and the "WHY" questions start to fly. The day before yesterday, my best friend from my youth died. Brian had been ill for a few years with an unrecognized illness that never responded to any form of treatment. He spent his last couple of years in and out of hospital. He died peacefully, surrounded by family. He was 68 or maybe he had just reached 69.

Kind of puts PD into perspective, doesn't it?

Brian was one of the most creative persons I knew, with a golden sense of humor. He could make me laugh anytime, anywhere. Like the day we were in the swimming pool and passed the high diving board which bore a sign "Out of Bounds"

"Shouldn't that sign read "Out of Bounce?" Brian said matter-of-factly. His dry sense of humor could reach genius level.

If you came here for info on PD, you should stop reading for what follows is a story that illustrates our friendship.

The Great? Fire of 1961

Alright, I have to admit Brian and I were nerds. We played with science and drama while others our age had other things on their minds. Brian decided he wanted to make a movie showing ships at sea being bombed. We got a large wash basin and filled it with water and that was Brian's ocean. Next we coated model ships with cullodion and put them in the "ocean". We had learned about cullodion in Harvie McGhie's grade 9 science class. Cullodion is highly flammable. Brian lit some rubber tubing and held it over the ships at sea. As the tubing melted, little balls of fire reigned down on the ships setting them a-blaze.

Before I go on, I should tell you we had made fire extinguishers out of pop bottles, because of the danger posed by cullodion. These extinguishers would work in theory, but we had never tested them. Would they work in reality? We were about to find out.

Back to the story.

All was going well. The ships started burning and if we had had a camera, it would have looked like a real battle at sea (well, maybe semi-real). Then all hell broke loose. One of us, I forget who, knocked over the bottle of cullodian and a large puddle, with a viscosity of liquid mercury, was let loose on the basement floor. Brian turned to see what had happened and in doing so accidentally let a drop of melting tubing fall into the puddle and we had a major - minor fire.

"Get the fire extinguishers," Brian yelled.

I grabbed one and threw the other to Brian. We activated them and a small stream of water shot out. They did nothing. I could have peed on the fire and done more damage. Brian and I started laughing and Brian said we should do something about the flames so I stomped on the cullodian fire. The result was little balls of fire squirted out from under my foot and settled all around the room. Fire was everywhere. Now we were in hysterics as we watched the fires burn out. No damage done except for a couple of melted model ships in a washbasin.

Such were the days spent with Brian. He was my best friend and I miss our boyhood adventures. Brian, his bother and mother and father were my second family and they influenced my development and kept me on the straight and narrow.

As a grade 9 teacher during down times, I used to tell stories about my friendship with Brian (and his brother)and have been told many times I should write a book. I would like to. I might. But I doubt I will. It would be too difficult to re-create the youthful joy of those halcyon days. I am content to think I will see Brian on the other side; we will tell stories and laugh our halos off.

Nothing's quite so sure as change

Parkinson's is such a drama queen! Or maybe it is a shrewd tactician. Probably both. As a drama queen, it arrives with a dramatic flair and continues to quack at you with the persistent vigor of iron oxide on an old car. As a tactician, it seems to me that it makes incursions into my body, testing the quality of my defenses and does so in the guise of a particularly malevolent party crasher. I have felt those incursions and somehow they were turned into excursions, some occurring prior to diagnosis and some after. Of course, it has been successful in installing a tremor in me, which is only held at bay by the medication. However, in the past it has tried, and failed, to attack with insolent persistence in the following manners:

• Prior to the emergence of the tremor period - for 3 weeks, I lived on soups and sandwiches. Why? Because I had difficulty swallowing. The doctor ran a few tests, including that one where you swallow some "gunk" and watch on a screen as it goes down your throat and coats your stomach. Very cool! No problems detected and the issue disappeared on its own. Nobody thought of PD and why would they? The good news is that I lost 8 pounds. The bad news is I have since put it all back on, plus a few more.

  Later, during the same period, it became difficult to write on small recipe cards and my signature, which was always clearly written, began to become unreadable. Meds cured that. Nice try PD. I repelled your feeble, but noticeable attacks. I just don't know how I did it and why you disappeared,.

• Arrival of the tremor period - I first noticed the tremor following a hard workout running and swimming. On my way to my car, my right hand started to rapidly tremble. I made a note to myself: "Maybe next time, you should tone it down. Remember you are 64." The tremor disappeared only to re-emerge on a Miami vacation, but only slightly and for a few seconds at a time, also following hard workouts. Then some days into the Miami trip, when taking my picture, my wife commented that my face looked odd, blank; that I never smiled properly, and showed no other expressions. I began to think something was wrong. I was to discover later that my look was the PD mask, but it also disappeared.

  The tremor remained somewhat dormant until the trip from hell (see August 12, 2011) when it became apparent to the public. It was then I decided to go back to the doctor and eventually was diagnosed with early stage PD.

• Early medication period - on a pre-dawn walk, I came upon a puddle. My feet were acting strangely and I was stumbling around. I was determined not to go into the puddle but my feet decided otherwise. It was like some unknown and uninvited force was pulling me into the puddle. I splashed around for a unwanted moment. The only other person awake and outside was working nearby. He saw my confusion and offered to help. I was only a few houses from home so I refused, but for a nanosecond I had trouble moving. My feet did not want to cooperate. I recovered and went on my journey. Again, there has never been a repeat of that performance.

  Another symptom of that period which arose and then disappeared was an abundance of saliva, causing me to slur my words and sound like an idiot. I may still sound like an idiot but it is not due to a sodden mouth.

• Post Diagnosis period - My voice disappeared, almost. I could still speak, but nobody could hear me if they were more than 5 feet away. That problem remains to this day, heightened by the fact that I have difficulty in finding the spoken word. I had that defeated through voice therapy but I let myself down by not keeping up the required practicing. Win some, lose some.

• Post Script - Needless to say, I am locked in battle with my enemy. A true wartime drama. A struggle for supremacy! The drugs are my weapons of choice, as if I had a choice, but so far they have succeedws in holding the advance of the invader as best they can. Eventually PD will win, but until then, it will keep on making stupid mistakes in trying to force other symptoms into my body. Let it try. I have L-dopa on my side, the Arnold Schwarzenegger of PD pills and it is being very effective in my defense.

I know, I know. The Bible says to love thine enemy.

Fat bloody chance!

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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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