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Wednesday 29 March 2017

Not this again!!

I haven't reread all of the entries in my blog. I usually write them and read them once or twice and then I post them. Most entries are just a stream of consciousness, so I only have a vague memory of having written about today's topic in an earlier post, but I must have done so because I firmly believe in it and research confirms it. What I am talking about is The power of positive thinking, today's topic.

My wife is the cause of this lesson. She successfully fought cancer...... God! I can't believe I would ever encounter the word "cancer" when speaking of a loved one.....! When she was going through chemo and radiation. I tried to give her positive feedback. I was certain she would be OK and any negative thought to the contrary was vanquished to the dark parts of my brain. I don't know if I was of any help but the fact is, now she is cancer free and I am confident she will outlive me.

Positive thinking was our theme du jour earlier today. My wife and I were talking about my situation:

  • she asks me how I am doing
  • I am doing fine, a little shaky. I had trouble sleeping and getting out of bed, but I am fine now.
  • She looks serious and we talk about her fear of cancer
  • She tells me she admires the way I am handling PD
  • I am OK (I am watching a hockey game on TV which might account for my lack of conversation)
  • But, she says, you might be wrong
  • No, it is what I really believe. I am going to be OK, I'd rather have PD than cancer.
  • There will be a cure for PD in the not too distant future
  • She nods her head and says that is quite possible; they seem to have new drugs all the time
  • There is no doubt. I am right
  • I gently conclude with a proclamation of certainty. I am positive that PD won't advance quickly and a cure or slow down drug is in the offing.
The conversation ends when the Jets score and she walks away remarking on my short attention span. I hope she has some positivity about her success in her perverse dalliance with the BIG C.

How did I get so positive? By following these rules.

  • I believe my entire life will be good. It has been for the past 71 years so why would it change now.
  • I try not to let any negativity get me down. When any negative thought appears in my brain, I analyze it until it gives in and surrenders
  • I believe I can predict the future and it is so bright, "I have to wear shades"
  • I am convinced that if I fell into a bucket of shit, I would come out smelling like roses
You can do it too. As I have probably said in the past, keep your face toward the sun and you won't see your shadow. You do have a future and the day will come, sooner, not later, when some unknown scientist will rid the world of PD.

Good riddance, I say.

Monday 20 March 2017

We are such stuff as our dreams are made on...Shakespeare

The one good thing that has come to me from the darkness of PD is the virtual reality dream. Other than that, there is nothing appealing about the disease. It is trying to break me down and thinks that these weird dreams will speed me to its desired goal and get me to my destiny more quickly.

Not going to happen!

My strength is the fact that I love these dreams, as strange as they are. Last night's was a beauty.

SCENE ONE: I am a searcher, looking for someone or something. I am doing my best but it is hard in this snow. I see three big buildings, all of which are dormitories. There are no other buildings so, when the three suddenly appear, stark and dark in the winter snow, they look quite ominous.

I enter the dream, stage right, and start toward the first building. The hair on the back of my neck stands up and I shudder silently. The problem is, the closer I get to the building, the farther away the building seems to be. I remember that curious puzzle where a man shoots an arrow at a tree. During its flight, the arrow is half way to the tree. Then it is a quarter of the way, followed by and eighth, sixteenth, etc, so that the arrow never hits the tree. It is always half the distance from the point it just left. I smile and spit on the snow and say aloud, "If nothing else, I will get there. No matter what the puzzle concludes. It is not reality" and I look back at my footprints in the snow. I notice smaller prints inside of my prints. I check it out, but there is nobody here, there, or anywhere; just endless snow and those three buildings.

SCENE TWO: I am in the first building and have been confronted by an old girlfriend, I don't really recognize her. She could be anybody. She makes me nervous, a little frightened. She is dressed in a black uniform, as are all her minions that have suddenly appeared behind her. An army of black jackets. There is a crest on her jacket. It is this crest that causes me to shudder, for in large print are the words, "Golf Club", and below the crest is an embroidered patch, "I am the leader". She comes toward me. I feel a cold rush of air. I stand my ground; determined not to let her get to me. She whispers in my ear and I start running out of building, headed toward the second building, but the snow is deep. My legs feel heavy and I am breathing through my mouth, loud gasps for air. I feel a hand on my back. It is caressing me, up and down, and it soothes me.

I wake up. It is my wife doing the soothing. She has experienced my VR dreams in the past. She asks me if I was fighting or running in this one. She had been awakened by my breathing. I tell her I was running and within a couple of minutes I am asleep again, never to find out who the girl was; why I was afraid of "Golf Club; or what it was she said to make me run.

An action-packed dream and convincingly life-like; so much so, I can remember it perfectly.

Edgar Allan Poe wrote, "all that we see or seem, is but a dream within a dream", or something like that. Is my life a dream within a dream or am I a searcher dreaming that I am a blogger with PD, writing about a searcher? Are vivid dreams caused by the disease or by the medication taken to control the disease's symptoms?

Who knows? who cares?.......Gotta love a good dream!

Thursday 16 March 2017

Garbage in Garbage out

Boy! Initially I tried them all. Supplements touted to slow the advancement of PD. There were testimonials of doctors, long distance runners, researchers, and on and on, testifying to the efficacy of the product being advertised. They all failed in their promises. Finally, I concluded there were no natural remedies and we were lucky to have dopamine agonists and L-Dopa to control the symptoms.

But now, I see just a little glimmer of hope in the possibility that the drug nilotinib, used in the treatment of cancer, may be able to slow down and perhaps halt the progression of the "disease". You can judge for yourself. Go to

https://flipboard.com/@flipboard/flip.it%2Fa8sG89-cancer-drug-that-might-slow-parkinsons-/f-9c15992646%2Fnpr.org

and read all about it. It is very convincing when researchers describe the drug as a garbage disposal mechanism that apparently appears to clean up the toxic proteins that accumulate in our brains. Imagine that, a garbage man we treat with all the glory we can muster as it goes around ridding us of the pollution that has collected in the corners of our minds

There really are people out there who are discovering the complexity and magic of the human brain. Shocking, but true.

Tuesday 14 March 2017

Some Statistics

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Audience

Time cannot erase my memories, just my ability to recount them

I have been deprived of my eloquence and I am ill at ease with myself. Once upon a time, I was filled with confidence and could easily converse with others. No more. Now, I cling to the maxim that well-timed silence is more eloquent than articulation.

I see a bad moon arising when my inability to converse will be spotlighted.

I am very honoured to have been invited to a high school reunion. Not my high school, but one that my junior high and elementary students attended, once they left me.

In my second year of teaching, I taught a wildly enthusiastic grade 6 class. What a year! We made 2 movies, captured creatures in the summer ditches and........ just generally enjoyed each other. I spent 7 years in that school and each year was a repeat of that first year. That was 4 decades ago and to have them remember me now.....well, that is truly an honour.

I have looked at the facebooks of each former student and I am shocked at the adult faces looking back at me. And they have children too!!! I have to face it, I am an old man. I don't recognize most of those adult faces. I remember them as young teenagers, not as grown-ups. As Dr. Seuss said, "When did it get so late so soon?"

Now, about that bad moon.

PD has robbed me of my ability to communicate. I talk only to family and close friends and even then I stumble over my words. I am hoping I won't have a vicious attack at the reunion. I want to remain in the high esteem of my former students.

PD has set me up for a semi-solitary life:

  • my voice makes it hard for people to hear me.
  • people have difficulty understanding me, particularly if the setting is noisy
  • the clarity of of my voice is dubious
  • people ask me to repeat myself because I am speaking too softly
  • I am burdened with a word finding problem when I speak.

Funny how that works! I can't find the words when I speak, but they flow easily when I write. I guess you can't have every thing. I am so looking forward to this reunion. Wish me luck.

“How did it get so late so soon?
It's night before it's afternoon.
December is here before it's June.
My goodness how the time has flewn.
How did it get so late so soon?”

― Dr. Seuss

Silence - the whiner has left the desktop.

Friday 10 March 2017

The Loodleladdle within me

What is a loodleladdle, you must be asking yourself. A loodleladdle is the spirit of a dead settler that haunts the area around Waggle Springs on the Assiniboine River, or at least that is what I was told. I never really believed that legend but, one day, a friend and I decided to camp at Waggle Springs, near the rotting logs that were once the loodleladdle's cabin. We went on our bikes, our backpacks filled with clothing and food. He brought along a .22 caliber rifle and ammunition. You know, just in case.

We set up the tent, laid out our sleeping bags and spent the day exploring the woods and shooting the .22 at non-existent spectres. As night fell, we sat by the fire, eating, joking and insulting nature with locker room banter. Just before 11pm, the topic of the Loodleladdle came up. My buddy told me facts I didn't know. To this day, I say that he was trying to scare me with tales of a malevolent ghost of a bad guy who was killed many years before and now haunted the area around his decaying cabin.

Well..... he succeeded.

"I'm going home," I told him.

Naturally, he started in on me with boyish insults, followed by attempts to convince me to stay; but, my mind was made up. I gathered my gear and headed for home. The old dirt road to Waggle Springs, rose and fell and in the pitch black night, I rode as fast as I could, bouncing up and down on the seat, giving myself saddle sores but otherwise, I made it home without incident. My friend stayed the night and forever after he kept to himself the topic of my cowardliness. This is the first time I have admitted my craven act,

Unfortunately , I think the Loodleladdle inserted himself into me that night. We became as one, and I now carry the curse of the loodleladdle. He is determined to make my life miserable. The signs are there. Shortly after my frenzied breakout from Waggle Springs, I was bewitched and bedevilled with a backache that has lasted 50-odd years. A couple of decades later, years after my midnight ride, I agonized for six months under the spell of a spinal stenosis; very painful. Excruciatingly so. Next arrived the highlite of my list of things I wished to avoid. My anti-bucket list so to speak. Seven years ago, I was diagnosed with parkinson's and now I have a pinched nerve, (or so they tell me). All of these conditions are, without a doubt, disturbing my suburban routine. I shudder to think that perhaps the Loodleladdle came with me on that furious ride home with the intent of making life difficult. Can there be any other explanation?

Why he chose me is a mystery.

But now onto reality. I wonder if the cause of the new pain in my back is a symptom of PD. I know many doctors will tell the patient that pain is not a part of PD.

Do I take them at their word?

Not a chance.

The first result of a google search took me to the webpage of "The National Parkinson's Foundation" where I found an article by Jackie Hunt Christensen, in which she talks about Parkinson's and pain. She begins the article, Does Parkinson's Hurt, with the following:

If you are like most people who have Parkinson’s, one of your major complaints is probably pain. Fortunately, there are steps you can take to reduce its impact on your life. Existing treatment options, including both pharmacological and non-pharmacological, can prevent it from interfering with your daily activities.

While many family doctors and even some neurologists will tell you that Parkinson’s disease does not hurt, most people with the disease will probably disagree. In fact, pain might have been one of the early symptoms that, when combined with other signs, first compelled you to see a doctor. Chances are, if you did not experience pain as an early symptom, it will show up later, as your disease progresses. Usually, it occurs or is worse on the side of your body that is most affected by Parkinson’s.

What are the chances? PD or something else? Probably only a pinched nerve is culprit. With fingers crossed, I will have to wait and see. I am certain, in a Blair Witch sort of way, it is not the loodleladdle giving me grief. That's for sure. The loodleladdle is a ghost and as I have never seen a ghost, VOILA, I conclude that I don't believe in them. They are just the stuff of nightmares. Ain't no ghost going to scare me!

But, you know, as I have said in past entries, I have never seen an 80 foot great white shark either.

Doesn't mean it doesn't exist!

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Tuesday 7 March 2017

A carousel of time

The doctor thinks I have a pinched nerve in my shoulder, hence the pain. I think he is right. The moment that nerve "fires?", the pain is excruciating, momentarily attacking at around the same level of discomfort as a spinal stenosis problem. At least with a spinal stenosis you can free yourself of the agony by learning how to sit, pain free. Unfortunately, I have yet to learn which motions cause the nerve to let loose. The pain is a sudden, electrical burning that is totally unpredictable in its onset. It lasts seconds, but it enough to cause me to stumble with a yelp.

Oh well, it is just another burden for my catalog of woes. I will try to distract myself with my latest interest, i.e. an interest in the concept of HOPE; not the kind of hope as in "I hope the Jets win tonight" but; rather, something deeper, more to do with your subconscious mind than your conscious mind. It is hope veiled with emotion.

My mother was 96 when she died. She still was totally rational and still taking medication that could prolong her life, but because all her sisters were dead, and husband and good friends had died, She was frank in announcing, each time we chatted, that she would welcome death.

After our chats, I wondered if her brain, was conflicted, with a "winner" takes all" kind of spat. It seemed too me it was a contest between her minds, as to whether she should take her pills in order to live (Conscience mind)or to stop her meds and die (subconscious mind ). In her own words, while still taking meds, she asked the universe, "Why can't I die? My sisters are dead as are my friends and your dad is waiting for me." Hope involves emotion. They are inextricably connected. Her future was clouded by emotion and life after death. She now hoped there would be an afterlife. She became emotional when we first talked about it as a possibility. Her subconscious mind became her consciousness. There was no way she was going to give up hope of life after death.

My mother's hope for death to take her was eventually satisfied. She and I had had several discussions on the topic of the after-life, satisfying moments for each of us. A decision was made. She was going to die. It was inevitable. In her sub conscience, she knew her fate. She stopped her meds (except for pain)and shortly after, she went on to the next level of our existence.

Hope can have several meanings. My definition of hope as a state of mind that, no matter what happens, you confidently expect the desired outcome to occur.

If that definition is not clear to you consciously, look for it. You will find it hidden in your subconscious mind somewhere. You will feel it like a zephyr, scratching at your pant legs, tickling your timing, creating chaos. I trust you will join me in my world where pessimism is not permitted

I know, you complain that my mother's story was a sad story, but get on with showing how all that has anything to do with Parkinson's.

In my world, we swim in a sea of hope, so allow me, on behalf of all PWP, to say we all hope they find a cure for PD. Researchers have told us the cure is certain, probably within the next decade. I hope it happens in my time and, if not, I hope to die a dignified death.

If you hope for a vibrant future, free from PD, it can become a certainty.

Ponder the concept of "Hope" and make your definition a positive one. As cancer patience say:

Thrive, don't just Survive

Friday 3 March 2017

Home is where the fart is (Hemingway)

Do you, as a PWP, suddenly discover, post diagnosis, that your bowels are joining the ongoing war to make your life miserable. Constipation and Flatulence are two major point men in the war with parkinson's.

You are what you eat and I like to eat whatever is placed before me.

Wrong strategy my friend. Sometimes my rear end sounds like an intermittent fog horn, while other times it is so blocked up, I swear the air turns blue with my groans of dissatisfaction .

You too, right? And you want to know how to stop this misery. Me too. So I looked it up and here are my findings*.

These are good for PWP:

  • Diet rich in antioxidants which apparently helps to reduce the negative effect of free radicals in the brain, including dopamine producing cells
  • Foods that reduce constipation include vegtables, high fibre foods, fruit
  • Vitamin E foods like olive oil, some nuts, asparagus, mangoes
  • Foods rich in vitamin C such as citrus fruits, coconuts, figs, spinach and melons

These should be avoided as they tend to produce flatulence:

  • legumes such as peas and beans
  • cabbage, Brussels sprouts, etc
  • carbonated drinks
  • coffee or tea
  • too much protein which inhibit the effectiveness of L-dopa (note that some portions of protein may benefit PD, but that is a discussion with your neurologist)

That's a short summary. You should take notice and plan a diet; and I will do so also..... when it has been reliably ascertained that hell has frozen over. I like my cokes and Brussels sprouts, etc and I can put up with a little constipation and I simply try to avoid people when flatulence is in play. I mean, What's it matter to me anyway? PD has robbed me of my sense of smell and I am learning to control the volume of the flatus (Low E).

In the words of Hemingway:

“Home is where the heart is, home is where the fart is.
Come let us fart in the home.
There is no art in a fart.
Still a fart may not be artless.
Let us fart and artless fart in the home.”
― Ernest Hemingway

*information on food gleaned from "Botanical Online"

Thursday 2 March 2017

Just another sore loser

Well, it is the last time I self-diagnose (see yesterdays entry). Nothing to do with parkinson's or rotators et al. I do have some aches on the left side of my torso, but the sudden, burning pain, in the right shoulder, is a pinched nerve. I have been advised to rest.

I am good at that, so "rest" it is. I still use treadmill and stationary bike, but weights are out. Hence my bourgeoning waist.

If I could, I would lose weight, but the truth is, I hate losing.