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Monday 24 December 2018

A great deal of (un)certainty

And so this is Christmas - 8 years since Dr. Oz predicted a cure for our predicament within 10 years. Best wishes to the tribe for 2019, or 2020 or 2021, etc. A cure is coming but who knows when.

I told you I would describe the cause of my PD, so here goes:

  • Head trauma. I have been concussed three times that I remember.
  • My mother and father had the shaking palsy or essential tremor, or some other shaking disease, ergo, I inherited it.
  • Exposure to toxic materials. As a boy, I would run through clouds of DDT. The chemical fog kept the army base free of mosquitos but it must have wreaked havoc on my brain.
  • I am getting old and old people get PD.
  • I think my brain aged faster than my body.

I hear you. Nobody knows what causes PD; therefore my list may well be correct.

So now it is Christmas Dr. OZ et al, and what will you do?. Just keep your eye on the target and don't keep us waiting for that cure you predicted.

I am growing weary of waiting.

Sunday 23 December 2018

Running out of neuros

Update:       One loyal reader, a somewhat interesting fellow who I have met a few times, solved another conundrum; nobody ever told us army brats why every soldier with the surname "Clark" was called "Nobby" Clark.

Well, thanks to the internet, he found the answer at https://en.wikipedia.org/wiki/Nobby.

Now if I could solve "Dusty" Miller, I might get to sleep at night.

On with the show:  I told you I would give you the history of my time as RSM of the substantia nigra. Here goes.  I first noticed that my sense of smell was not sensitive, even with foul odors.  Friends and family might comment on "that sewage smell" and yet I could not smell anything unless it was a sickly sweet smell.  Now I can't even smell that.  Sadly, I cannot smell the roses but, on the upside, I can't smell feces or vomit either.   I tell you it "sucks " lacking a sense of smell.  I was 64 years old and I no longer could smell.

In mid-2010, I was helping my son make study cards for his psychology course and my handwriting became smaller and tighter toward the end of a sentence.  It almost hurt to try to write  Writing was too onerous.  I quit trying to write more than a couple of words. There would be no cards but thank goodness for the computer and my skill on the keyboard,   I helped make study pages.

Early in 2011, I swam a mile in the pool's training tank and followed that up with a mile run.  I was in great shape, so it surprised me when my right hand started to shake without any input from me.  I thought to myself, 'That workout must have been much harder than usual!" and I put it out of my mind.  A few weeks later, I finished a long run in South Miami Beach.  When walking to lunch with my wife, my right hand started its jig.  My wife grabbed my hand and told me to stop it.  I did and in doing so, I surrendered to her the role of RSM.

After that, my wife took charge and made me see the GP and then, as set out in my 2011 entries, I went into the Parkie system as follows:

       *  GP refers me to a neuro who says no medication yet.  My hand has a mind of its own, but no meds ("you are not a watchmaker after all).  This doctor is at least my age so it is doubtful he can treat me through to the end.  Add to that, I was the first patient on his list that day and he shows up one hour late.  I accept his diagnosis of PD but this was not going to be a productive relationship.   No, I wasn't a watchmaker but, the tremor in my right hand was to the point that I tried to hide my hand out of embarrassment.   No drugs!  


Ptooie!

Time to revisit the GP.

          *  I tell my GP my horror stories and ask him to refer me to a neuro whom I know slightly.  This neuro gives me gold star treatment and puts me on Amantadine, Mirapex, and L-Dopa.  Practically overnight the tremor screeches to a halt and I feel almost normal; however, this neuro says I can stay with him if I want, but, his office is just a "ham and egg "operation and I might be better off at the movement disorder clinic so he sets up an appointment with a neuro who deals exclusively with movement problems.  Neuro #3 increases my L-Dopa by 50%.

             *  An advantage of the movement disorder clinic is it runs research projects and I was chosen for one which looked into the effects of caffeine on PD.  It turns out there are none.  However, the use of amantadine was questioned by the nurse (highly competent).  You see amantadine is an anti-viral drug which, for some reason, has a positive effect on PD.  The nurse remarked "I don't know why amantadine is there.? The research doctor told her it was probably there "for the tremor".  Works for me.

My tremor is tremorless.

Tomorrow: The cause(s) of my PD.

Wednesday 19 December 2018

The mysterious power of the RSM

Growing up on an army base, one gains other-world knowledge that is foreign to the citizens of Civie Street (civilians).  Our lingo is different;  for example, "meathead" is slang for "provost corps".  The provost corps is the military police and more commonly known as "meatheads"(no disrespect intended". ) "PMQ" is "permanent married Quarters".  "Mister" is the formal salutation for a "lieutenant". "Brat" is a person raised by military parents.  Any Brat could probably list the many ranks between "Private" and "General" and yada, yada. yada.

The only uncertainty, never explained to me,  is why every soldier with the surname, "Miller" is nicknamed "Dusty".  

I am getting off track.  What I want to talk about is the RSM, or Regimental Sergent Major.  This is an appointment, rather than a regular rank,  The RSM sees to the welfare of his troops and of the base.  He is an important person.

 Let me describe one I remember.  RSM Lute was built like a boxer.  Often times he wore a red sash across his broad chest, a symbol of his authority.  His mustache was waxed and curled such that each end pointed toward the sky.  Now I am not a religious guy, but this man was God.  And he scared me, so if I saw him,  I made sure he didn't see me.  I have to admit, he ran a good camp.  I wondered how chaotic the base would be if there were no RSM.

Well,  I found out 50 years later when I was diagnosed with PD.  The brain is the C.O. of the body.  The brain appointed the substantia nigra (SN) to be the RSM for the troops in the SN.  Cells in the SN  play a large role in movement.  They produce a chemical called dopamine which helps the brain send & receive messages throughout the body.  For some reason, these special cells start to degenerate and as they do, the amount of dopamine is depleted and any form of movement can be negatively affected. Moreover,  there is nothing the body's RSM can do about it, or so we have been told.

Well, screw the RSM.  I ain't afraid of no RSM.......well.......maybe.

Let's see what role Science play.   I know its target is the fading NS.   Like Brats, scientists have their own lingo.   99% of us would be unable to follow a scientific discussion, but who cares!  All I want to hear and understand is the word, "'CURE".  in any language but, I will not give in to PD.  I will not obsess on finding a cure; rather, I declare and appoint myself to the position of RSM of my body and I will concentrate on my here and now and live for today.

In the next entry I will tell you what happened since my appointment to RSM and how the battle is going.

BTW,  J of Grey Cottage is now in the 21st year since DX and has not gone beyond Stage 1!!!!

Tuesday 11 December 2018

Weapons of choice

I was chatting with three other boxers who were all 2 - 3 years post-diagnosis. We were laughing at how we manage getting out of bed in the mornings, how we put on our pants, pull up socks, avoid stairs, etc. I thought about it after and realized that entering my 9th year, my symptoms, save only for some balance issues, which I can manage, were not unlike those of the PWP entering their 3rd year. How can that be? I think that on average I should be completely dependant on others. What has caused my slow progression? My thoughts are:
  • luck? Maybe. But, this year my good luck has been replaced with bad following a string of good years. Maybe the good just lost interest; however, I cling to the illusion of good luck.
  • positive attitude? Could be. When I encountered J. of Grey Cottage, though this blog, who is a PWP and, at that time had been in stage 1 for 16 years, I decided I would follow J's example. To this day I continue to believe it will take at least 20 years before this disease floors me and by then, I expect medicine will have new and improved methods to fight PD. Maybe even a cure! Most likely, I will be dead.
  • Obsession with exercise? Probably. But just to make sure, I want to add an additional boxing session each week.
  • Divine intervention. Puhleeze! If a God exists, he/she certainly does not have time to deal with my complaints.

In summation, I don't have a clue what has slowed my progress. Nada. Whatever it is, please keep up the good work.

Sunday 9 December 2018

Some statistics

Sources of the top 10 page views for week ending Dec 9





EntryPageviews
Canada
42
United States
38
Ukraine
15
Australia
8
Spain
4
United Kingdom
4
Indonesia
3
Russia
3
India
2
Philippines
2


Pageviews today
11
Pageviews yesterday
28
Pageviews last month
789
Pageviews all time history
100,600

Friday 7 December 2018

Pugilism doesn't hurt

I love boxing. My shoulder only hurts a little and I am now able to jab with a slight amount of pressure. I watch the people who know what they are doing and I try to emulate their moves and I must say, I am doing better. It would be interesting to get in the ring with a peer or preferably someone of lesser ability (I hate to lose). Our classification would have to be "Naive newbies over the age of 70 with aches and pains". Never going to happen. Rock Steady boxing is strictly exercise, but we still get to fight two opponents, the first is PD, and the second, the heavy bag. So far, going into my 9th year since dx, I am holding my own with both.

Real boxing must be a lonely sport. Imagine you are alone in the ring facing another boxer who is legally permitted to pound you into a coma! You have trained, alone, for years to be ready for the moment that the ballet begins. The audience is against you. The air around you is polluted with shouts to your opponent to kill the bum. Your arms feel heavy but you are ready for the dance. The crowd just see two fighters ready to brawl. They don't realize boxing is a beautiful sport. The rhythm of the spectacle is a symphony of combination, jab, cross, hook, and uppercut.

And, it doesn't hurt that win or lose, you will be richer in the wallet for having tried.

Fighting PD can be described as a "lonely fight", like boxing, except PWP use boxing as a weapon. That's is right folks, boxing is beneficial in our fight with PD. A study by the Parkinson’s Foundation found that people with the disease who exercised at least 2½ hours a week experienced slower declines in quality of life than those who didn’t exercise at all. Boxing can improve optimal agility, speed, muscular endurance, accuracy, balance, hand-eye coordination, footwork, and overall strength. It doesn't cure the disease or even slow its rate of progression, but it works on symptoms.

In my case, at 9 years in, I should be in worse shape than I am in presently. Maybe it is good luck, but I like to think I have benefited from 3 decades of exercise and it is never too late to start. Try boxing. Check it out at any Rock Steady Boxing site. You won't be disappointed.