Someday I'm going go to murder the bugler

I met my nemesis in battle today and on this occasion, I was the last man standing, battered and bruised 'tis true, but nonetheless, I was standing.

Let me take you back a few hours. It is 2AM, that time in the morning after I have completed my 4 - hour sleep. I will get another hour, interrupted, but it is dicey, broken by the need to urinate. Each time I get out of bed is a drama. I can't just swing my legs off the bed and stand up. That would be too easy. I have to do a half roll to my knees on the floor with my head and arms still on the mattress. Rest a minute or two awaiting the time I am able to use the bed as a support while I overcome the lost energy of the night and will my body into a standing position.

Yesterday, I went through the routine, except my arms were so weak, I lost my support and ended up on the floor. I could not get upright. I struggled for about 5 minutes to right myself and might still be there had I not noticed one of my nordic poles lying on the floor. I managed to pull it to me and use it as an instrument to steady myself by climbing it (hand over hand)to a somewhat bent stance, all the while comparing my situation to that of the old lady in the commercial who falls and mutters something---- I forget exactly what, and I forget what she was promoting; "beef" I think, and somehow the phrase, "and I can't get up" gets worked into the ad. It was amusing at first but soon got old.

That is the only time I have experienced helplessness. Today, I feel strong. Let's hope there is never a repeat of the incident. All I have to say is "Bite me, PD".

When I wake up each morning, I make a choice. In spite of the PD attempts to depress me, I choose the positive over the negative and I shall continue to make that choice until someone, somewhere. finds the cure.

To paraphrase Wayne Gretzky, "90% of how you conquer life's absurdities is mental, while the remaining half is physical."

STATS MARCH 5 TO 11

MARCH 5 to 11

Still averaging 2 new readers a day after all these years.  Thanks everyone

	Mon	Tues	Wed	Thur	Fri	Sat	Sun	Total	Avg
Pageloads	14	14	8	9	21	11	19	96	14
Unique Visits	12	8	7	8	15	10	10	70	10
First Time Visits	6	1	1	0	1	2	2	13	2
Returning Visits	6	7	6	8	14	8	8	57	8

My computer beat me in chess but it was no match for a jab/cross combination

Community: (n) A community is a group of people who can teach us something new, make us laugh even when we are having a bad day and who are there for us when we need a little encouragement.



1. When I was first diagnosed I felt....not much really.  There was no drama.  It was as if the neuro had said to me, "I hate to have to tell you but you have an ingrown toenail."  I knew nothing about PD except that Michael J. Fox, Muhammed Ali and Hitler were PWP and they were doing OK (except for that Hitler guy). Sure my hand tremored from time to time, but hey,  I could handle that.  No problem. But then, I got curious and started researching, only to conclude that having PD was not a good thing.

2. D-day (diagnosis day) + 21.  In my third week, I read that exercise, eating well and social discourse might well slow down the progress of the disease.

3.  Social discourse!!!

4.  I lived in the same house for 40 years and never learned to be social with any of my neighbours.   Social discourse indeed!!!  As soon as it has been reliably ascertained that pigs can fly, then, and only then, will I try to improve my social graces.

5.  You should join a Parkinson's group, somebody offered.  Hmmmm, that's an idea.  But wait!  I just didn't think I needed one and so I quit looking.  I convinced myself I could handle this newest threat to my cushy life on my own.

6.  Then I got a pamphlet for "Rock Steady Boxing" and my curiosity was piqued.  Boxing for PWP. A solitary sport with people who could commiserate with me. Exercise and social discourse - almost a singularity!  I liked the sound of that.

7.  To make this epiphany short and sweet, I joined Rock Steady and there I found a community as I have defined it and I hope to stay in that community for a long time. It will make my journey easier. Take the advice of an 8-year veteran.  Find a group, any PWP group and get involved.  It is part of the "healing process".

The greatness of a community is most accurately measured by the compassionate actions of its members - Coretta Scott King

A treatise on Strength (or how I lost my manhood)

It is a strange feeling when you know your wife is stronger than you. She does CrossFit three times a week. You understand what that means, don't you? It means she gets the equivalent of being kicked in the stomach every day she goes for training ....but she keeps going back for more. She is 69. Yesterday she did 55 squats with 20-pound weights and 55 burpees. She has deadlifted 160 pounds. She is not trying to get muscular; rather, she wants to stay in shape.

CrossFit is her weapon of choice and her joy. It is also her therapist. She always arrives home alive and happy no matter how bad the day has been before her session.

Then there is me!

I used to be quite athletic. I was a decent runner. I was provincial race walk champion in my mid-forties. Then I had to give up running because of falls. Race walking went next because my balance was "iffy". Finally, I tried walking with Nordic Poles. I was good at it and achieved some speed but, after a year or so, that too was a thing of the past. The problem with the poles was, I had trouble stopping unless I ran into a wall or something.

These days I do weight training, chi gong, treadmill and stationary bike but, after the heart scare I was instructed to keep my heart rate under 100 beats per minute. HRUUMPF $#@$#$%%!!!

Well, I still have boxing. I returned after a 3-week absence full of hope only to find that my left arm, the one that had caused the heart scare, was so weak, I couldn't lift 5-pounds above my shoulder and my jab! Well, it was non-existent. I intend to continue because it is also my joy and occasionally, my therapist.

I received a lot of goodwill when I returned. As one instructor said, "Don't worry, it will all come back". That energized me. I appreciate his optimism and will keep on trying to keep going, at least until I am as strong as my wife. I don't know if that will be possible, she is known as the "beast" by crossfitters in her age class.

I blame it all on that all-consuming pain in my ass, the invader known as Parkinson's.

Isn't it time it left me alone!!

I may have to set my wife on it!

BANG, BANG, MAXWELL'S SILVER HAMMER

Am I doomed? Will I become dependent on family members or worse, institutionalized? Will I be confined to a wheelchair and like Ali, barely able to throw out the first ball? Hell no! The night is so bright, I have to wear shades; well except for the "growing old" thing. My future includes an intimate rendezvous with death but until then, I will thrive...... relatively speaking.

My life has been good since being diagnosed. It was perfect prior to DX; but in the darkness of the gym, in the final few minutes of my basketball game, the ref called out "Strike 3!". My right hand began to tremble and my hands grew weak. I had been hit with PD and I had a need to hit back.

"That's too bad," someone said without a hint of compassion. I thought I would get more sympathy; after all, I was about to declare war on my brain and I was gathering my army of sympathizers. Outside of my family, there were only a few really genuine soldiers. Good friends but, what could they do? Drugs kept the enemy quiet, but my brain was, and is, winning the war.

That realization became my "aha!" moment. I was in this battle alone. When I took my first foray, I did so with Invictus carved into my brain:

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

My weapon of choice was exercise and I began a flurry of sweat and strain using weights, isometric training for PWP, stationary bike and treadmill. I do something daily and I believe it has slowed the advance of the enemy. Remember, Ali had lived with PD for about 30 years. With time and the advancement of PD research, we should all get more time than he did to enjoy life.

("Invictus" - Willam Ernest Henley)

P.S. This entry was serious, but I also find humor in our situation, so keep a lookout, I might try to sneak some in. Please laugh.

Also, I really appreciate your comments. Keep them coming.

Time, time, time....See What's become of me

To PWP. As the title suggests, lately I have been thinking about time. What is time? Is it merely a human construct to keep track of the of events in our lives. My thoughts are kept amused by the philosophy of time - For example, the world has standardized a method of measuring the changing of events through an ingenious process involving the sun and moon and other celestial events; but, it is likely that everybody's daily events are different; ergo, when those events belong to an individual, that individual owns all of his time.

The medical profession likes order and with order comes time, but time is not an ordered system and logically time and the two cannot be connected. Time is chaotic. Nevertheless, physicians and medical researchers continue to use some version of an ordered sequence to describe the effect time has on the progression of PD. The most common sequence is a chart describing the 5 stages of Parkinson's. What rubbish! Both time and PD are wrapped in chaos and each PWP owns his or her own time.

We all know we will deteriorate but we also know PD is a designer condition in which advancement of the "disease" cannot be predicted in an accurate manner. It is different for each person. I am in the 8th year of my journey and I know I am not what I used to be, but I refuse to put myself into one of the five stages. I am where I am. I have survived in the past so that part is no longer of any use as a predictor, and I refuse to try and predict my problems into the future. That's not quite true, I predict only positive happenings. In the meantime, all I know with any certainty is that the here and why is now.

PWP will know whereof I speak. We each carry a unique version of the disease; consequently, the medical world which tries to predict the future using standard measures of disability is misguided. They do their best but they have no cure and no proven method of slowing the progression of PD. We PWP are all different, so don't try to pigeon-hole us into 5 stages in an attempt to create certainty out of an entirely chaotic system. We own our own version of the future. It is ours to predict. Make your prediction positive and trust that with time, these professionals will work with chaos and give us a cure. They will help us along our journey as best they can but in the meantime, repeat after me, "My future is mine. I know that PD will continue to run its destruction, but I will not let it beat me."

I intend to die with dignity!

That is today's rant.

Do all those folks have PD. I hope not

How many pageviews have I had.....92,105 

On average how many of those pageviews are from real people?  I don't know but lately, I am averaging 2 - 8 first time visitors every day.

Where do they come from you ask?  From all over the world.  Here are the stats from last week.  The numbers are pagviews.

Russia  251

Canada  59

United States  27

United Kingdom  25

Australia  9

France  5

Ireland  5

South Korea  4

Peru  2

Poland  2

Thanks for reading. 
 I hope I have

been of some interest 
and or help.