My days..... no......years with PD

         THE MOAN ZONE---PARKINSON'S (confined to a  Wheelchair)

 

Before I get into some of my parky incidents, I would like to clear up a couple of things:

 

FIRST   The name Parkinson's Disease is a misnomer.  PD is not a disease, PWP are at war with our brains which have decided we don't need all those pesky  dopamine producing neurons.  and so it goes.  By the time symptoms appear, 80% of the dopamine producing neurons are gone  and you might begin to tremor.

 

 I prefer PD's original title, THE SHAKING PALSEY. It has more pizzazz and is more sinister, more parky-like

 

SECOND nobody dies from PD.  They die with PD.  PD might be an accessory.  PD weakens the body making it the body susceptible to deadly diseases. 

 

 

FINALLY,  PD is not curable,  not a the moment,  however just recently MCGILL University announced the discovery of a new molecule that might prevent PD in young onset  PD and could ultimately lead to the cure of  all PD.   In the meantime, researchers think  age appropriate aerobic exercise at least 3 times a week may slow down the advancement of the disease.  Get out there and exercise.i've had PD for 20 years during which i was an exercise freak.  All that exercise helped as one by one symptoms disappeared.   Except for the past 1.5 years unable to walk    

 

 

 

A PLETHORA OF SUPPLEMENTS

 

If you have just been diagnosed, you will scour the internet looking for help.  You are wasting your time.  No supplement has a positive effect on PD.    There is one that offered some relief before modern medicine.   It is called mecena purienss.  It contains 15% dopamine, but it is not worth the trouble.  I know.    I tried it.

 

WHAT ARE THE ODDS OF SOMEONE GETTING PD

 

A man who was 65 asked what the odds of him getting PD.  My reply  " You don't have to worry,  Your chances of being kicked to death by a duck are more likely than you getting PD I thought his was a good analogy, to support my assurance that he was not realistically  at risk of becoming a PD victim.  Then I met this guy   Show  DUCK-( see picture of karate duck)Now that is one savage looking bird.  If confronted, calm it with a song.  Everybody "Be kind to our web-footed friends...'

 

The fact remains there are only about 100,000 PLWP in Canada,  less than 1%   of Canadians.

 

So your chances of joining us with PD are slim to none; although researchers gathering data on similarities of PWP might conclude your chances are increased if:

         you have red hair

         you are male

         you are over 60

          have a close relative with PD

         you have had a traumatic head injury      

         you are a junkie

         you are Amish

 

They also might conclude you are less likely if you have black hair and use caffeine and alcohol regularly.

MY DIAGNOSES And so my life continues, but now it is all under the cloud of PD.

In January 2010, I challenged myself to swim a mile.  I succeeded and my right hand started shaking when I finished. I decided   that my swimming effort had  caused the tremor.  After a minute it went away and did not reappear until March.  My wife and I were in Miami Beach, on a walk    when the offending  hand started a perfectly rhythmic tremor

 My wife a physiotherapist wanted to take my picture.

  "Stop messing around and smile", she said.

 "I am smiling," I said."

" No you're not."  She grabbed my hand.  It stepped moving.  She snapped a photo and said, rather curtly I thought,.  "Look at this photo."

It was true.  I looked like that prehistoric caveman who popped up when his glacier grave melted.   I later learned my look was the  Parkinson look.  I remembered George Forman   and Mohammed Ali being interviewed for the movie "When We Were Kings".  Forman was animated.  Ali was totally expressionless . He had the PD mask.

 

My wife suggested I see a doctor and gave me mouth exercises,  (demonstrate).  I think they have  chased the mask away.

A few weeks later, I found myself sitting on an examining table in a well-known neurologist’s office.  He said, "Put your hands face up on your lap and count backwards from 100 by 7's .

 

That was easy but by the end  of the count, my right hand  was jumping around like some demented jumping bean.

 

"Early stage Parkinson’s," the doctor said. You can get a second opinion if you want but I am confident in my diagnosis. 

 

SECOND OPINION

 

Being an apostle to that time honored maxim TRUST BUT VERIFY, I got a second opinion.  I explained to the new neuro that for the previous 4 years  I felt totally exhausted, suffered sleep disturbances, lost my sense of smell, my voice was disappearing and I had  difficulty swallowing.

 

"It's Parkinson's," he said and referred me to the movement disorder clinic. .  It was 2011.   I had been a victim for 5 years.

The neuro prescribed 3 Pills, amantadine, mirapex (pramipexole) and levodopa. (You may have increased sexual urges, unusual urges to gamble, or other intense urges while taking Mirapex. ...)

 

Michael Fox once said that PD was the best thing to happen to him.  I am afraid I can't agree with him.  PD stinks!  I am going to reference a couple of PD scenarios that prove my point.  The first is PD hallucinations followed by PD falls.

 

 

 

BAD DREAMS AND HALLUCINATIONS

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Psychosis can be a frightening word that many people simply don’t understand. But what does it really mean? In   Parkinson’s disease (PD), what your doctor calls psychos is a disconnect between brain and body.   Neuros report it as  Parkinson's disease associated psychosis.  It  usually starts with mild symptoms "." Psychosis can vary from severe confusion (disordered thinking) to seeing things that aren’t there (hallucinations) to believing things that are not true (delusions). I will talk about the first two, the dictionary's definition of "delusions" is "Donaid Trump"  NOW THERE IS A DELUDED MAN!

 

There are actual times when I think my dreams and reality are one and the same.  I know what a bad dream is  because we parkies are frequent sufferers.  They don 't bother me.  On the other hand, hallucinations can occupy my consciousness, some for some time. With me, they occur when   I am awake and I truly believe them to be real.

In the early stages of PD, my  hallucinations were short, somewhat startling, but manageable, 

 

 

Early hallucinations consisted of presence hallucinations (someone is in room with you) and auditory hallucinations (sounds only you can hear)

 

 For example, it is early in the morning and I am sitting on the sofa in the living room reading from my Kobo reader. Out of the corner of my eye, I notice a tall man standing at one end of the sofa. He seems to be cleaning his glasses.  I look and there is nothing there.

 

It is near the hour when I usually fall asleep and I am lying in bed watching TV. Again from the corner of my eye I see a woman in a red dress moving by the side of the bed. I look in her direction - nothing.

 

This one actually scared me.  My wife is away and I am alone.  I am awakened by the sound of dogs growling ferociously on the other side of my bedroom door. I think my daughter is visiting with her animals. It is 4:30AM and I wonder what the problem is that she should be here this early. The dogs stop growling. I get up and I open the door. No dogs! My daughter is no doubt asleep in her bed in her home.

 

Once you can deal with these non-upsetting  visions ,you can find the humor in them.  For instance, I was hospitalized overnight and  I see my wife  speaking to a doctor then they come to my bed.  The doctor holds our his hand.

 

"I'm Doctor Seuss.'' he says.

 

"Here we go again." I say aloud.  'Another  halluc....'

 

My wife intervenes to tell me that is his real name and we all laugh.

 

I almost welcome these short snappers.  They make life interesting.....

Nonetheless, the major hallucinations have little or no humor involved, I don't know what brings them on. The air seems to thicken, background noise are muffled or disappear, you can competently  continue what you were doing but you are hyper-aware of the subject of your unreal reality.

 

Here is scenario from 2012 that occasionally creeps me out.   I say "scenario" because it actually happened while I was actually mowing the lawn.  I hasten to add, for me it was, at that moment in time, my reality even though it wasn't real

 

I am going to read my blog entry from the day it happened. I called it 

THE THING

Summer is hot here my town and the heat can bring out all kinds if weird looking insects that haunt the grass. One pass with a lawn mower and I can be shrouded in mosquitos but today is too hot for them.  As they say, only mad dogs and Englishmen  go out in the midday sun but not to mow the lawn.  Nevertheless, I am mowing. the lawn. I see a slight movement under the oak tree. I think it is tissue moving in a breeze.  As I get closer, I realize it is something alive. The best I can describe it is, a white opaque, sausage-like object about five inches long, and two in height, pliable, with the shape of a small cube inside at either end of the white sausage. Both ends are moving. Each cube is twitching independently. It is in my way, so I push the mower over it, thinking I can puree the thing but, when I look back, it is untouched. The twitching is more pronounced. Some force makes me run over it a second time. I push hard as I pass over it. I look back and I can see raw meat on the top of the front cube. I had cut the front cube open and now it was no longer moving. I must have killed it. I continue cutting the grass and when I return to the spot where the thing was supposed to be, it is gone! 

I keep on cutting, my spirit growing weary with a touch of melancholy. I don't do things like that. I don't kill things. Sure, I squash mosquitos but that's their fault. I'm not into death. I certainly don't go around killing cubes.  I wonder where it went.

I had a quantifiable dosage of guilt for a day or two and confessed to my wife. Her response was an undramatic. "Just a dream."

I know that, but it was my dream and it felt real to me.

 

WINNIPEG POLICE - THE GOOD GUYS

What do you do when your home is invaded and you know you are prone to craziness?  You have a choice....either call a cop or a shrink. 

 I am alone in the house and asleep when a noise in the living room wakes me up and I find two people sitting together on my sofa.. One is a man in Goth makeup. The other is a beautiful woman.   She resembles my daughter. They both are staring at me. I try to talk to them but they continue to stare. I demand that they leave the house, but they continue to stare.  I go and get a ski pole from the bedroom. Their stare is relentless.  I hit the woman with the ski pole. She doesn't budge. I threaten to call the police. This gets the man's attention but the woman just sits and stares. She refuses to leave.  The goth says, "I'm going" and he goes into the back yard. I say to the woman, "You better get out of here too. The police will be coming". I call 911 and the operator sends the police. I go out to the backyard to tell the goth  and he says "let's go back in". We return and there are other people there. The woman keeps staring but now she has two more friends with her, a  man and a woman. They are also friends of mine. They are staring. The man is my oldest friend. I say "where is Hazel?" (his mom). He says "I don't know" and then clams up. I tell them all to "get out!."  

At that point the police arrive. I tell them I have Parkinson's Disease. They begin to question me. The female police person gets on her radio and heads outside. The male officer is obviously experienced. He asks me my birthdate and other personal questions. The female officer returns, speaks   quietly to her partner but I hear her say ,"He's clean, just one speeding ticket". That was my record.

 

Somehow the people who were staring at me had gotten into the back yard. I say, "let's go look in the back yard". The  police hesitate and I go out alone and I see the "starers".  I  tell them "the police are here". At that moment I see a police   cadet band. They climb over the fence and start to play. They move toward us and I think they must be background noise for a police arrest. They disappear when the male police officer comes out. He tells the "starers" to leave. They all do except the women. The boyfriend is on one side of the fence and she is on the other. When the police return, the woman is suddenly not there anymore. I look over the fence and the woman has joined her boyfriend on the other side of the fence and they are talking to the police.

 

I can see the neighbours watching.  What kind of nutcase are we harboring? they must  be thinking.

 

I go into the house to watch through the window. I turn around and the police are inside. They ask me some other questions and then they go.

 

I curse the system that allows people to break into one's house without consequence. I hear the police officer make a telephone call to my eldest son and then I zone out. When I come out of it, my daughter-in-law is speaking on the phone. The police say to her "we are leaving. He will be OK. He is just a little confused". I am somewhat angry that they should write me off as a little confused. I say to them "I thought I made myself perfectly clear". They laugh and say, "You were anything but". 

 

My daughter-in-law helps to calm me down and the next thing I know I am lying on the couch talking to her. It suddenly becomes clear to me that I am stoned from the Parkinson's Disease and maybe the drugs I take. I say to my daughter-in-law, " I think that was a hallucination" but only half believing. In minutes all of my children come and I fall asleep.

 

The two stories are true. I know because I was the main character in both. I would prefer to never encounter another because I'm not absolutely sure we aren't all living in a hallucination now.  Raise your hand if you are an illusion.

FALLS

Falls are very common to PWP.  The mechanisms of the body that control our sense of balance react slowly or not at  all.  The lack of balance leads to minor or major falls. Today I will deal with a bizarre type of falling called festination and my experience with the phenomenon.

I have had a few falls but until this day, none like this,

 I started out at 4:30 AM and after 20 minutes, I felt like I was leaning too far forward and my footsteps were just enough to counter a possible fall.

Now, I know walking (running) is just a form of controlled forward falling, but normally one can stop whenever one wants to, just by putting one foot in front after another. 

 But this,...... this was      altogether different.

In spite of my desire to try to walk upright, I continually bent  forward, called the Parkinson’s gait, and my feet began to act on their own. My strides became shorter and shorter and I had to walk faster and faster to keep from falling forward. 

At one point, I had to break into an ugly little jog to remain on my feet. I grabbed at a pole, the kind of plastic pole that sticks up from a fire hydrant covered by snow, but I couldn't stop moving.  I circled the hydrant like a man possessed. Fortunately, there were no spectators, it being so early in the morning, for they'd have thought me to a drunk or a lunatic.  When I finally stopped my orbit of the hydrant, I rested for a couple of minutes and began a slow walk home, without success. Again I was bent forward and my walking steps turned into the devil's jog until finally, after crossing a road, I pitched face-forward into the snow, where I remained for several minutes before getting up and going to a nearby bus stop where there was a bench to give me some relief. Again, fortunately there was no audience. 

 

I was still a half mile from home, I'd forgotten my cell phone; otherwise, I would have called my wife (who was home sick) or one of my kids, to pick me up.  I chose a slow shuffle to the NEXT bus stop and its welcoming bench, rested and then home.

However, even in the house the effort required to prevent falling while removing my heavy winter clothing made balancing on a bosu ball seem simple - a piece of cake - as "they" say.  

I was fine after a few minutes of relaxation reading the morning paper. Nobody was awake to see me, which was good, because I 

 

 

 

must have looked like Bram Stoker's description of the Count.... deathly     

pale, just like a waxen image, and the red eyes glared with the horrible vindictive look which I knew so well....And vindictive I must have looked, for I have an aversion to not being in control, an

not being able to walk properly . I tend to blame it on PDI remember a saying by Confucius to the effect that our greatest accomplishment is not in our falling but in our getting up every time we fall, or something like that. You get the picture .,

 

 

 

 

 

WHAT HAVE I LEARNED FOR SURE            

*                 The risk of developing PD is directly proportional to age

*                 In the USA, a person is diagnosed with PD every 9                                                         minutes.  As the population ages, so will the incidence          
                   of PD

*                  PD is second only to Alzheimer’s as a degenerative                                                        neurological condition.  In North  America, the number                                                 of PLWP outnumbers the combined total of victims of                                                       muscular dystrophy, multiple sclerotia and Lou Gehrig’s                                                   disease.

*                     PLWP should not waste money on lottery tickets.  For                                                        us, if it were not for bad luck we might not have any                                                              luck at all  spending money on lotteries would just be a                                                        tax on parky stupidity,. I know.  Here is my probable                                                             losing ticket .

*                     PD is a designer disease.  It is different for everybody

 *                    the youngest person to suffer from Parkinson’s                                                                   symptoms was 3years old

*                     there is a high incidence of PD on Guam, among some                                                        Amish and among gypsies in Bulgaria

*                 more men are afflicted than women except in Japan                                                         where the reverse is true

*                 Early treatment was the ingestion of worms and ants

*                 Treatment in the middle ages was with myrrh                                                                   frankincense and frogs
 

 

 

SOME FAMOUS VICTIMS

 

Pierre Eliot Trudeau, Michael J. Fox, Muhammed Ali, Janet Reno, Charles M Schulz, Linda Ronstadt, Billy Graham, Brett Favre, Ozzy Osbourne, Alan Alda, Robin Williams (Lewy bodies), Johnny Cash    

and the curious case of Adolph Hitler -Did PD help win the war?

 

THE TRUTH IS OUT THERE

The truth is you don't know what is going to happen tomorrow.(Eminem)If you want to hear God laugh, tell Him your plans.

So there I was, going happily through life. Retired (well, sort of), great family, nice home & cottage, annual trip to South Miami Beach. Had it all and then, out of the blue, my right hand starts doing the chacha on its own volition and the next thing I know, an old doctor tells me he is confident I am in the early stage of Parkinson's.  And so my life continues, but now it is all under the cloud of PD. 

 

If you look into my eyes looking for my fear for the future, you won't find any.  I have no fear of PD or even death...It may be the fear you think you see in my eyes......Well... it may be your own looking back at you.  

Relax, there are no murderous ducks in Manitoba  Karate Duck next entry

donald trump

From my explorations

democrats win the Presidency

mark my words

WHAT IS RIGHT WITH KAMALA

 compared to the Donald.......EVERYTHING

What is wrong with Biden?

 It was difficult to watch! an obviously frail President trying not to blow his chances by coming across as lacking the brain cells needed to guide the USA through hard times to come.

He failed!

His face an almost parkie mask, did not help his mission, nor did his word finding difficulties.  However, the most troubling of  his apparent lack of cognition arose when, in the middle of a paragraph, he forgot what he was talking about!

My conclusion:  The president ls a PWP!!

WHAT'S ANOTHER WORD FOR "THESAURIS" (steven Wright)

 Les anciens knew about it and gave it a name..... (are you ready for it?)....the "!!SOUL" (cue Marvin Gaye).  What is "soul"?

Who knows?  Is it necessary to describe it?  Thinking logically I begin with a Law of Thermodynamics ie; "energy can neither be created nor destroyed".  Energy can only change.   Our bodies are full of energy.

You guessed it .  I call that energy my soul and it is just as important to life as is the heart or brain.

At the start, you drift into unconsciousness.

Your heart has stopped beating; your brain no longer gives a damn and shuts down, and your soul says sayanora.

You are dead!

And what of your energy now?  Remember, it can neither be created nor destroyed.

It can change and it has.  It is now a part of the energy o f the universe.

Is that just another name for "God"?

Could be.........

boundaries which divide life from death are, at best shadowy and  vague.  Who shall say where the one ends and where the other begins?  (EdgarA Poe)

What's left

OK...Your heart stopped beating just before the brain made it official and stopped producing brain waves. The man in the white coat looks at the wall clock and while pulling off one bloodied rubber glove, says

T.O.D 14:34

HUH!!!!

What about the "you know what?"

Nonsense!  The surgeon is not a believer and as he turns to wash his hands, the 3rd part of our puzzle leaves the body.  The patient is now well and truly dead

I have to go.  More to come next entry.  In the meantime, have a laugh

            Grim reaper says to Saint Peter at the pearly gates,  "I'm Death."

           Saint Peter responds, "No problem.  I can speak louder."