Friday, 17 August 2018

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 I hope the blog has been useful and will continue to be of help to all you PWP

Thursday, 16 August 2018

"Ze brain, Ze brain"

apologies to Hervé Villechaize

The Brain, it is just a hunk of gray matter but it is more powerful and mysterious than any supercomputer. It is amazing. It is the god watching over the rest of the body. It controls all the systems; although it does have a few subalterns to take some of the burdens away from the Master. We learn more and more about the brain every year, in an effort to cure neurological problems such as our dark shadow, PD.

I recommend the book "Brain Storms, The race to unlock the mysteries of Parkinson's Disease" by Jon Palfreman. I won't go into the content of the book but, you should read it. It is somewhat uplifting and it is simply a good read by a PWP. It chronicles advancements in the treatment of PD and the search for a cure. There is much talk about, naturally, the brain, and that got me thinking about its complexity, how to keep it healthy and satisfied.

The brain can be helped to be healthy through exercise, nutrition, and thinking. It is like every muscle in the body; it works better in a healthy state To be in best shape, keeping your health requires straining the body's other less glamorous muscles with physical stimulation. The brain is different. It is royalty in the body and requires mental challenges. It might even be infallible.

Bring out the crosswords.

The brain is omniscient but is it infallible?

You can always fool the brain through positive thinking, but the oddest example of fooling the brain is the placebo effect.

Earlier in my journey, I was approved for a clinical trial to see if caffeine had a positive effect on the progress of PD. We were randomly divided into 2 groups, one taking caffeine, the other a placebo. For several weeks, until the project was brought to an end (the data showed no effects, good or bad), I was certain I was becoming less parkie,i.e., tremors at a minimum, stiffness lessened. Brain Storm details a study in which the symptoms of some participants in the placebo group showed less intensity. Each of their brains believed it was beginning down a path for a cure but like them I had fooled myself. What that says about the power of positive thinking in finding a cure for PD would make a good research project. Something like "Can we cure with placebos?" I leave the logic to you. As for me. I have a crossword to finish.

“I am a brain, Watson. The rest of me is a mere appendix.”
― Arthur Conan Doyle, The Adventure of the Mazarin Stone s

Tuesday, 14 August 2018

To tell or not to tell, that is the question.

You have been diagnosed. Do you keep it a secret? I guess it depends on the circumstances; for example, keep it on the down low if revealing your condition would negatively affect your profession.

On the other hand, the disease is not contagious; it does not define you, so, why keep it to your self. I told everyone I knew. I thought they might be interested. Most were not. I now leave it to the person to ask me or, I give them the address of this blog.

One of the little gifts that PD grants us is constipation. Not a pleasant subject, but a perfectly natural process that proper upper classes refuse to discuss. Well, I don't belong in the upper echelons, so here goes.

Prior to learning of PD, I suffered from "runner's diarrhea". In the months before I was diagnosed, loose bowels were often a hardship that interfered with many a race. I read about cough medicine causing constipation, so prior to every run, I dosed myself. I was that desperate! In SouthBeach I was acquainted with every public toilet from 14th Street to the hill in the park.

Once I discovered I had been blessed with PD, I ended my cough medicine regime. PD compaction was all I needed and my runs became uneventful. So for me, PD constipation is a good thing but, until now, I have kept it to myself. I have been told that my toilet habits should not be the topic du jour.

I just broke that rule. Don't tell anybody.

However, I am wont to move onto urine. I don't know about you, but it seems that in the evening, my bladder contains a copious amount of liquid waste and every time I stand, I feel the urgent need to pee. Fortunately, my bedroom is across the hall from the bathroom, so no accidents. I am certain this new condition is PD's mischief. Thank you, PD.

Now I see there is an MJF webinar on the 16th concerning urinary problems and PD. I will have to check that out.

I must arise and go now and go to the WC. Until the next time, good running.

“You hate birthdays yet pee your pants over presents. There is clearly something wrong with you,"
A beautiful Lie by Tara Sivec

Monday, 6 August 2018

Man is, by nature, a social animal. – Aristotle

It is amazing how a time machine can devour the past.

Of course, I am talking metaphorically.

The lesson for today is twofold:

  1. what is a metaphorical time machine? and
  2. What's that got to do with PD?

A time machine exists only in the mind of H.G. Wells. Such a device is not real...or....maybe one is, speaking metaphorically. You don't need all the fancy contraptions envisaged by Wells; all you need is patience; eventually, you, or someone you know will organize a "reunion". Go to it. You will meet older versions of older friends but you will be transported back to your youth and the ages will slip away. Behold! The creation of a time machine.

My time machine occurred this past weekend. I set my ETA for Friday, Saturday, and Sunday. Friday was a meet and greet and I met and greeted people I had not seen for decades. Saturday was a huge success. For the most part, my parkinson's took a nap, allowing me access to normality. Well, sort of. My speech was too soft and I stumbled over words, but my old friends, now in their metaphorical teens, were willing to endure my "vocal patois". Unfortunately. Sunday was a bust. My PD exhaustion won out and I slept like a baby. However, I now had proof that metaphorical time machines really can exist.

But, what do time machines have to do with PD?

All those lousy symptoms we suffer can have an isolating effect on our lives. After all, who wants to be seen in public with one or both hands shaking uncontrollably, feet dragging noticeably, back bent crookedly and voice disappearing quietly. It's embarrassing, isn't it? Thus we prefer to stay in our homes, keeping contact with the outside to a minimum. Well, check this out:

  • Your symptoms are not that noticeable.
  • people who socialize enjoy better physical health
  • Socializing strengthens the immune system
  • Your mood will improve and finally,
  • Your brain will benefit. People who get out of the house and lead active social lives are less prone to dementia

Get off the couch and find or build your own time machine disguised as a reunion(s). Try it. You won't regret it.

"Interacting with other people is crucial to our well-being. Social involvement helps shape our own identity, bolsters perception of our self-worth, and enables our simultaneous involvement as an individual and as part of a collective.

.... In quantifying predictors of quality of life in patients with Parkinson disease (PD), investigators found social isolation was second only to physical mobility as a factor in predicting poorer quality of life outcomes".

UCSF Parkinson's Center. 29/9/2015

Saturday, 4 August 2018

One step back; two forward, but no giant leaps - I am waiting

The rich and famous get PD too.

Neil Diamond, M.J. Fox, Janet Reno, Charles Schulz, Robin Williams, Hitler and now Alan Alda. All of them have or had Parkinson's. You can find more of their financial ilk online. PD doesn't discriminate and in spite of their millions, we all, rich and poor, have the same chance of being cured.

On bad days, I am certain that a cure is beyond researchers' abilities but, they keep making discoveries, taking baby steps in the right direction. Eventually, they will announce a cure.

But, for me, well, I may as well try to catch the wind. I will have a fistful of nothing before we are successful in ridding ourselves of our verdammt parasite. I am just too old and it takes a couple of days before eternity to get a drug to market. You younger PWP will see success at some time in the future.

PD is the fingerprint of a malevolent universe. No two fingerprints are identical and no two PWP sufferers have identical sets of symptoms. So what? Who cares? So the rich & famous also suffer from PD, that in itself offers me no consolation. I neither envy them nor am I glad to see them join the tribe. No schadenfreude in this body. Nope, in here you will just find me with loathsome PD and I am growing tired of his presence. The fact is, in the words of Benjamin Franklin, "Fish and visitors stink in 3 days".

Today, meine freunde, today, I write about Freundschaft and its effect on PWP. Everybody needs a friend whom they can rely on. I am not talking about the run-of-the-mill friendship. I am talking about friends you see 1 or 2 times in decades, but when you come together, the years melt away. You hug them, shake hands and can relive the past with ease. They recognize your limitations and help you out, and for that help we PWP are grateful, even for the small things. Even little things are welcomed such as going out of one's way to get you a glass of wine to holding a chair so you can sit comfortably. We need your help occasionally and my friends, I have had the experience. Thank you.

I wish I did not have PD. I wish I was normal again; although normal is somewhat overrated. At our age/condition, there are no normals. Just ask any person over 70 and especially one with parkinson's. be continued anon.

Wednesday, 25 July 2018

Isn't it rich; isn't it queer?

I am an "army brat" and proud of it.

A "Shilobrat" to be specific. A shilobrat is any person who has lived in CFB Shilo at any time since the base's creation in the 1940's.

My father was a soldier and, like all Canadian soldiers, he would be "posted" frequently, and as he went, so went his family. We were nomads. When asked, "What is your hometown?" I always answer "Shilo" although I only lived there for about 6 years in total. Yes, in three separate postings to Shilo, 4 years was the longest we ever stayed put. All army brats suffered the same disruptions in their lives. Each spring, summer or fall, there would be another moving van on the street, taking away another family.

Sad, don't you think?

Nah, it wasn't so bad. Afterall, you got to see interesting places in Canada, the USA, the UK and other exotic destinations. In our family, travel and crumbling keeps and radiant palaces brought excitement to my parents; for me, not so much.

For example, did you know that the field, famously known as Runnymede, where the Magna Carta was signed is/was just that .... a field. The site of an important step in the development of democracy is (or was in my day) just an ordinary field. After you have seen one field,.... you have seen them all! I had learned of Runnymede in school, but being there was, well, kind of boring.

Let me give you another example; I lived close to Stonehenge, where I and my friends would travel by bike when there was nothing else to do. To us it was just a pile of rocks forming an unusual pattern that added to the ambiances of our imaginations, nothing more.

Yes, when the mystery of famous places becomes commonplace, you are glad you have friends that make life interesting and can lift you out of the doldrums. That is what is special about being an army brat; not the shrines, castles, bomb shelters (it was 10 years after the war), and other places of historical significance. What was special was the friendship of other brats who spent their teens in Shilo and, upon graduating from grade 12, became scattered around the nation. I would not see 99% of them for many years. Then some genius invented the internet.

Our home in the ethernet started with one person, but the group of brats grew quickly. The result was and our inner teenagers returned with a gusto.

Next week, we have planned a reunion of Shilobrats from across Canada. They come to Winnipeg, to relive the past, from Grand Manan Island in eastern Canada to Vancouver Island in the west, each a distance of 1400 miles by air, to reunite in the center of Canada. The brats live in every province in the country. Some, like me, have PD or other life-altering conditions. Talk about support groups! I feel confident that if I ever had the need for support, I have a score of brats to whom I can turn during times of hardship.

Our friendships are the result of having had a soldier for a father. All that moving, changing schools, making new friends, etc, was my life for 18 years and I would not change a moment. This reunion will ignite forgotten times, bringing them back to life by "remember when...." conversations. Once more we will all be 16, full of health and innocence and for me, for once in the past 8 years, Parkinson's will take a back seat, if only for a few hours. I am looking forward to that time machine. It will probably be the last time I see most of them, but that's life.

Now if only I can keep standing (balance is a little off these days) and people are able to hear my disappearing voice, it should be quite a party!

"Every parting gives a foretaste of death, every reunion a hint of the resurrection." Schopenhauer

Thursday, 5 July 2018


Since my last entry shed no light on the placement of the advancement of my condition on whatever scale, and given that I seem to be at sea whenever I walk, I have had to admit to myself that PD is winning and will probably defeat me in the not so distant future.


Well that negative thought just got blown out of the brain and was replaced with veiled positive carnage.

Actually, I reacted to the lack of clarity of the stage of PD in which I find myself by getting out the bike and going for a short jaunt, falling only once at a stop sign. I will try again this weekend. I further added to my inventory of weaponry by dusting off my nordic poles and walking about 2 miles. You should try it. the benefits are quickly realized. Check it out.

A few of the benefits of nordic pole walking

  • uses 90% of the body's muscles
  • burns up to 47% more calories than regular walking
  • increases aerobic effect by up to 25% compared to regular walking
These are just 3 of the many benefits of nordic walking. Google "nordic pole walking". Try it. You will like it.

And it might banish those negative thoughts we all experience.

Once you replace negative thoughts with positive ones, you will start having positive results (Willie Nelson)