The Remarkable Mr. H

Every so often you meet a hero. They wear no golden greaves nor ride silver steeds but look very much the common man with uncommon ideas. That is my kind of hero. Take it from this chap:

“My own heroes are the dreamers, those men and women who tried to make the world a better place than when they found it, whether in small ways or great ones. Some succeeded, some failed, most had mixed results... but it is the effort that's heroic, as I see it. Win or lose, I admire those who fight the good fight”(George Martin)

Sound familiar?

For those of us at U-turn Parkison's, we are well aware of someone who fits the bill. He won beaucoup dinero with his son in The Amazing Race CANADA

The remarkable Mister H. has Parkinson's but he decided to fight the unfightable, to rejoice in pyrrhic victories while waiting for a cure. He persevered and founded U-turn Parkinson's and ,

He wrote a book, rated 5 out of 5 stars by Amazon

And he had PD all that time!

You can't do any better than 5 out of 5 stars. The book is well written, interesting and easy to read. Its audience should not be restricted to PD people. It should be read by everybody for it contains an important message, a way of life, maybe a life-Changer.  The message is brought to life through the struggles of the author and his son in the Amazing Race. The Race is much harder than you see of T.V. The book is available at Amazon.

LINKS

1.  Tim's homepage  Author, nurse, speaker, founder, renaissance man

George Chuvalo Tough

I watched the grainy figures on the tv.  Black and white as seen through the translucences of gauze.  Muhammud Ali up against George Chuvalo, Canadian champ, and the toughest opponent Ali ever beat.  It was brutality and beauty but in the end, Ali won.

I always think of that fight.  Chuvelo was being pummelled but he stayed upright and got in a few hits that rocked Ali.  

I am a member of U-turn Parkinson's boxing club, a Rock Steady Boxing affiliate.

But this has little to do with real boxing.  We don't hit each other; rather, we are taught a combination of hits and our opponent is the heavy bag.  I learned there is a certain beauty to the sport, a delicate dance if you will.  The class also features resistance training, stretching - you know, all the things that studies show can slow the progress of the disease and in some cases, reverse it.

We do it because it gives us a sense of control over a  "disease" that has been described as uncontrollable.

But there is more to it than that.  I also go for the company of my fellow victims.  At U-turn Parkinson's, there is a lightness in the air.  We try our best for our leader and her squad of dedicated volunteers but the dominant emotion is laughter.

The members of the class accepted me and we bonded quickly.  We share our stories, our setbacks and celebrate our triumphs.  Above all, we encourage one another.

In short, we are a family.

We are George Chuvalo, up against a formidable opponent but, like George, we will never give up.

After the fight, Ali went to a hospital; Chuvalo took his wife out for drinks.

Rock Steady Boxing at U-Turn Parkinson's, open house

U-TURN PARKINSON'S BOXING FOR PEOPLE LIVING WITH PARKINSON'S 

 OPEN HOUSE

WHEN

• SATURDAY, APRIL 27, 2019 FROM 1100 hrs to 1300 hrs

     WHERE

•    
                            SERRATUS MOVEMENT CENTRE

• 55 Henlow Bay, Winnipeg Manitoba  Rock Steady Boxing participants attest, and academic institutions, such as University of Indianapolis and Butler University, are reporting and documenting the improved quality of life among RSB boxers. Discovery of a cure may be many years away but in the last seven years, there is evidence that progress can be made through the RSB program. In addition to happiness and fun, benefits can include improved mental focus and mood, reduced stress, walking better, and learning how to fall better and get up and down safely after a fall. More at U-turn Parkinson's, Winnipeg. We are family.

  
  

• 
  

An error in judgment

Now and in the 60's, I exist(ed) with delusions of reality.  For some comrades that existence was a cop-out, just an excuse for avoiding participation in the 1960's drug culture.   Sure, sometimes I caved and took a hit, but I never got any refinement of my being, no higher level insight. Nothing.  All I got was a sore throat.

 The fact is, drugs and I were never compatible.

So, why did I drop acid in the gloaming of the 70's?

My self-analysis leads me to the conclusion I was trying to impress a young lady who was a virgin user as well.  My friends and I met her at a hotel bar and I was immediately disgusted by her crude  table manners,  I watched her as she stuffed an oversized hamburger into her cavernous mouth, juices squirting out in every direction,

"Are you stoned?" she asked in a thoughtful way.

Eureka!  That's it!  I was stoned.  She wasn't a pig;  She was very pretty and  even better, she wanted some of our stuff.  That was OK with us, as you can imagine,

Unfortunately, not all trips are good.  The drug played havoc with her mind so we drove her home.  We later found out she had had a very psychedelic night and her father was looking for revenge.

For me, it was an evening of color, melting televisions,  bloody knives and
strange sounds and I got scared, mumbling about losing my mind and losing my teaching job.   Fear knotted my stomach as I watched my friend sink into a large,  oversized chair.  He was becoming part of the chair.

'RELAX" a calming voice drifted out of the dark. " It is just a drug.   It will leave your body and by morning it will be gone and you will be right."

HMM. hmm, made sense.  After 8 long hours, I began to relax.   I wish I could have enjoyed the trip but I resolved "Never again!........at least not knowingly.

Jump ahead.  Now I am in the gloaming of my time on earth, my children are all grown, the oldest being forty.  His father in law has MS and for years has been on medical marijuana.  As a gift for his loyalty, he was given 2 candies which he turned over to my son and his wife.  They brought them for me   to remind me of the 60's.   They were two purple raspberry-looking treats with a gummie bear texture.

"Now, these can be quite powerful," my son explained.  "Eat only quarters at a time ."  With that, they continued their journey to their cabin.  I put the candies on a shelf. I forgot about them, at least i forgot about the seriousness of my son's warning.   I mean, how strong could they be, especially for a veteran of an 8-hour freakout on LSD,

I ate them both.

When my wife came home, I suggested we go to garage sales and she readily agreed.  Off we went, stopping at our first one moments later and were in luck, there was another sale across the street.  Less driving.  More time to look around. I was looking for a DVD player and old movies.  There were none.  I approached the first homeowner and in a high-class deep voice, with all the sophistication I could muster, I said, "I am looking for a record player and records.  Do you have any?"

" Sorry, I do not," she said while backing away from me,

"Next time?"  I said.  She replied with a twisted smile.  What was her problem?

My wife suggested we cross the street,  I went but stopped at the garage opening, feeling a little dizzy.  ''Let's go.  I can't see anything of interest."

My wife glanced into the garage."OK", she said while grabbing my arm when I stumbled making the turn,  She walked me back to the car and on the way, I saw my left leg about a meter away from me, walking by itself,  I got into the car, still unaware of my problem but smiling at my illusion.

My wife had one more sale to go to.  Fortunately, I stayed in the car watching the bizarre bugs fly into the windshield killing themselves, and then watching them lift their squashed bodies from the glass and fly away.

 I knew that was not a reality.  What was the matter with me?  It came to me in a moment of lucidity.

The candies!

I was stoned!

My wife returned.  I explained what I thought was happening.  She agreed and we drove to our cottage.  As soon as we got in the door, I hit the bed and remained in a fetal position for the next few hours until my sanity returned.  During the time I "slept" I half noticed my son saying something.  His mother had called him and he rushed over,  worrying about my well-being.  I mumbled something that brought him relief and he laughed.  When sanity returned he told me that I had said, "Why do people pay to feel like this?

I don't know the answer but I remember Jim Morrison saying, that drugs are a bet with your mind, or something like that.

 I don't gamble.  I don't take chances.

 “Drug misuse is not a disease, it is a decision, like the decision to step out in front of a moving car. You would call that not a disease but an error of  judgment.” 

                          ― Philip Dick


All was good in the end and I have resolved "NEVER AGAIN"

I know this has nothing to do with PD; although, with marijuana so easily used as a PD medication....well  let's hope it works but if not, this entry might be the canary in the birdcage.

Some chicken! Some neck !

I feel trapped by time, by the unholy trinity known as past, present and future. The past is a collection of moments that were good to me; the present is non-existent and the future is a shroud. For moments each day, I exist in darkness.

Time has a knife to my throat and PD is its greatest fan, urging time to cut my throat slowly and make my last days miserable.

Up to this year I have been able to keep PD chained in a prophet's cage. But now, due to circumstances beyond my control, I am forced to Let my guard down. I have entered stage 3 on the PD Wall of Shame:

In Stage 3 motor symptoms become worse, patients may begin to experience loss of balance leading to falls and movement can become very slow. Although many patients can still live independently they may have difficulty in everyday activities such as eating or dressing.

Yup, that's me to a "T". I never thought PD would get this far, and maybe it hasn't. I am never out of control. Sure I have no sense of smell, my ability to talk coherently has been injured and I do have bouts of "I almost fell there" situations, but I can look at it this way. The average length of time from onset to full PD is 10 years and I have survived quite nicely for 8. I will get through at least 10 more. Drugs still control my symptoms and when I encounter those depressing shadows (I was entering one when I started this entry), I just quote Winston Churchill to myself:

We shall go on to the end. We shall fight in France, we shall fight on the seas and oceans, we shall fight with growing confidence and growing strength in the air, we shall defend our island, whatever the cost may be. We shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender

The war is not over yet, PD, you bastard.

Life in the bat cave

Sometimes the future scares me. I think and worry about outliving my wife, or worse, my kids. I feel lonely when I think of being a widower. Without my wife (who I love dearly) I would be a fish out of water.  My wife is the captain of my ship and I need her until I die.

That is an important consideration for PWP.  Who is going to be your caregiver when you reach that point? For me, that will be my wife and absent her, my 3 children, all of whom live within 5 minutes of me.

Another thing you should be thinking of if you are Canadian is the disability tax credit.  It could be worth a few thousand dollars.  I started filling out the application myself and quickly decided I needed help.  An internet search led me to find an expert in this matter and I settled on Grants International and so far I have no complaints.  Other countries will no doubt have similar programs.

I don't go out much anymore.  I live on the Canadian prairies and the sidewalk and roads are too icy for me.  I have fallen a few times on dry land so snow and ice keep me practically house-bound.  I am reduced to the use of a stationary bike and a treadmill but I still make a point to exercise daily.  Studies have concluded that exercise will slow the progression of PD.  Remember that the next time you think, "Exercise! I will do it tomorrow.  I am going to watch a movie today."



Think carefully about tomorrow, about domani, because sometimes domani never comes.

and the beat goes on

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