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.

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.

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!!!!

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.

Some statistics

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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.

Free Fairness

I have a tendency to drift off into a world of fairness, as in "Why me? Life isn't fair." Then, I realize that the definition of "fairness" is not mine to own. Fairness is determined by outside forces, climate, vulnerability, custom, culture, susceptibility and perhaps even God (if a deity exists in your catalog of woes). Bad things can happen to good people. The universe is not interested in your doubts and fears and is indifferent in determining your future, fair or unfair. We live, we die, and there is little we can do to change the inevitable. Between the alpha and the omega we exist in a battle between the good and the bad things that determine that existence.

What a bleak picture! It is dark and depressing and fortunately, I don't occupy it very often, but a little angst every so often helps to write poetry and poetry is my sanctum sanctorum

For example, I was wallowing in self-pity when i wrote this poem, my vision of life. When I was finished writing, I liked the result. I had my poetic-high and I was ready to take on the world.

There is a gate with no fence
But it's shut tight and locked
So I stand on the outside and wait
My life is a thread cocooning the lock
But the clock in the yard's running late

And that clock has its hands on the gate.

How is it, given our prognosis, that not all PWP suffer from depression! Some do, others do not.

Depression can be a fact of life for some PWP. It can be depression brought on by being tagged with PD or the clinical depression that, for some PWP, is a symptom of PD. I have never been depressed (touch wood) but I have seen it and it ain't pretty. The advice of the experts is to exercise. Pull yourself up by the bootstraps and suffer the joy of running, weight training, walking, swimming. You know the drill.

Good advice, but what if you are barefoot?

I attended a lecture a few decades ago in which the lecturer, a distinguished professor from Syracuse, advised that if you have a need to exercise, but would rather be sedentary, drink a bottle of coke. Your blood sugar will shoot up and when it does, within a half hour, get moving and that liquid motivator will last beyond your blood-sugar-high.

I imagine there are better ways of obtaining the energy to get moving, but they won't taste as good.

Whatever is your motivator/motivation, just do it; exercise, then exercise some more and heed the words of Socrates who wrote:

It is a shame for a man to grow old without seeing the beauty and strength of which his body is capable

Take ownership of your body and keep it tuned up and you will be amazed at how it responds, but don't bother complaining that you don't deserve having PD. ("It is so unfair"). You may as well be howling at the moon.

Raise your hands if you like exercising

I don't like it too much. In fact, I hate the thought of it but always makes me feel better when I am done, but nevertheless, I was going to cut back, then I read the following, reposted by a fellow PWP in his blog, Parkinson's in the PEG:

Results showed that habitual exercisers had an increased release of dopamine compared with sedentary patients. They also had greater activation of ventral striatum during the MRI reward task. Their apathy and bradykinesia scores were also lower than sedentary patients.

These results suggest that exercise is associated with improved motor and non-motor functions in Parkinson’s patients, which is likely linked to exercise-enhanced dopamine release.

“Although it appears that exercise plays a role in the clinical outcome of subjects with PD, future randomized control trials are needed to determine the cause-effect relationship between exercise and enhanced DA [dopamine] release, response to anticipation of reward, and clinical outcomes,” the researchers wrote. “Future studies should also investigate other potential mechanisms of benefit from exercise,” they added.

I immediately went for the treadmill and bicycle (30+6 minutes) followed by 10 minutes of Gi-Gong then 15 minutes of chair stretching and finally weights and medicine ball until I could not take more.

I am back sweat pack! Thanks Gary.

AND THE BLOG GOES ON

TADA!

drum roll please

100,038 PAGE VIEWS

Now, I know that doesn't mean 100,038 visitors, but I still say that represents a lot of people reading the blog.  I hope it has been of some use to you.  I intend to keep writing.

Time, time, time, see what's become of me??

Putting on socks is turmoil; Pulling up pants is taxing and those first steps in the morning are tragic.

This is my daybreak routine.

Even getting out of bed is a comedy of errors. Once up, I do about 20 minutes of stretching, enough to help me remain upright, followed by a half hour on the bike or treadmill.

You long-time readers will recognize a significant decrease in the amount of exercise; almost cut in half.

There are reasons for this dilution.

1. I hurt my shoulder in boxing and I had to cut out weights and take it very easy while jabbing.
2. I had to stop walking, with or without poles, due to balance issues
3. I liked not being able to exercise. You see, I am bit OC and had I tried to keep up the usual routine, I eventually would have burned out and quit altogther
4. I am a young 72, but not that young! I feel 25 but, unfortunately, the time-tide rules. The past as a percentage of your life grows while the future gets smaller and smaller until it disappears. I am not 25 and my future is destined to bring me down, every muscle weakened by its passage. I am weaker now than last year!
5. What do you expect? I have the shaking palsy!

But, while I sound depressed, I am not. My symptoms are far less onerous compared to what they should be entering my 9th year since diagnosis.

Time, like the fog*, comes on little cat feet and is quietly and quickly passing us by.

Time is really just the passage of events and PWP should make their events positive and memorable.

Lesson learned. Positive thinking and a little exercise is what keeps me going but I may face a future event that will test me and my principles greatly. You will know if it happens.

Stay tuned.

*Carl Sandberg, "Fog"

please help me, I'm falling'

I flew to Toronto and back and on both flights I was twitchy inside and I must have been outside as well. How do I know? I know because someone offered to help me each way. I accepted with thanks.

I feel unbalanced and slow and it must show. I find that humans will go out of their way to lend a hand to the weak, helping lift a bag into a shuttle bus, helping to lift a bag into the overhead and offering their seat to the obviously tired and aging man.

I am frequently off balance. No falls yet, touch wood; but, I must take special care when using stairs (up & down). A handrail is an absolute necessity.

I had a vivid dream last night, I was speedskating on the 400m track. I was on the back 200 and I could feel my speed. The wind on my face was cold and real and the sound of the skate blades cutting the ice provided the music for the night. I awoke disappointed.

I have now seen 2 videos wherein a person exhibiting the worst symptoms of PD has seen those symptoms disappear when

1. riding a bike
   
2. skating
   
3. dancing.

These can't be coincidences. There must be an answer to the question "why?" The dragons in the fairytales can be beaten and so can PD. It is only a matter of time.

The will is alive with the sound of building.

What is joy without sorrow? What is success without failure? What is a win without a loss? What is health without illness? You have to experience each if you are to appreciate the other. There is always going to be suffering. It’s how you look at your suffering, how you deal with it, that will define you. ¹

I don't know Mr. Twain. Sometimes I wander off the true and narrow path to enlightenment, but does one need to have both; to have one, you must have the other. Must life be balanced?

I remember a time when I suffered only joy, success, good health, and, if I do say for myself; I was a winner, But now..... now I know sorrow. I have not won anything for some time. I am out of balance. I am suffering the hanky without the panky; the holus without the bolus.

But this current setback is momentarily purely metaphysical. For some pessimists, the future of PWP is certain. We will end up requiring round-the-clock care, unable to be independent and perhaps with dementia.

How bleak is that!

I refuse to accept that fate. I am at war with PD. Unfortunately, at the moment, I seem to be failing. My defenses are breaking down. I am losing the battle for my sense of balance. Literally! There is some mysterious force trying to tip me over. Usually backwards.

I have had this shadow following me for nigh-on nine years and I refuse to let it upset me (get it?). With effort, I can forestall it until researchers find some way to stave it off completely . Trust me. The day will arrive when our weapons will be nuclear and the last battle will reveal us to be the winners with a legacy of joy, success and good health. These days of weary doubt and complications will just be fading memories.

Every PWP should decree their individual secular jihad; like Churchill:

We shall defend our health, 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 ².

Life need not be zero-sum game in a perfect yin-yang ballet. With our will and our scientists, we shall fight on to the end. We will never surrender. The good can and will eventually outweigh the bad.

Zero-sum game, my ass!

Will somebody please hand me my cane?

(1)Mark Twain (2) Winston Churchill (with my apology)

Poetry's a notion

Some of you (well, maybe one or two) have asked me to write some of my poetry in my blog. The poems that have appeared earlier, while the words were original, the tempo and foundation were based on songs. When I re-read my own poetry, I think it is not very good but my son showed me one I had written decades ago. As I remember, it was based on a story I was reading about the sex trade in Denmark. I think this is not bad, Probably the only one worth posting. After this, I shall not inflict myself upon you further.

The Streets of Copenhagen

On the streets of Copenhagen,
Supine, and bathed in red,
I found a woman bleeding
From the thorns around her head

I stroked her hair, then gently
Placed two coins upon her eyes,
A genuflect to try to catch
The screams between her sighs.

If only this were real,
She whimpered in her sleep,
Perhaps we might have had a life
And lived beyond the street.

If only we were lovers
But I knew her soul was dead,
And I was growing kind of weary
Of the nails in our bed.

I stooped to say the right things,
But it came as no surprise,
She was just an empty savior
Full of saccharine and lies.

She wiped her eyes with steel wool.
Her arms stretched out to keep
The shadow that could never mend
The wounds upon our feet.

Lust became confusion,
And demanded to be free;
I told her I forgave her
And she did the same for me.

In the streets of Copenhagen
Where love is found for rent
It doesn't really matter
How your dignity is spent

Stairway to Heaven

Stairway: noun - first used 1767, defined as: one or more flights of stairs usually with landings to pass from one level to another. (Merriam - Webster).

Have you noticed we have an abundance of stairs?

Stairs, Stairs, everywhere there're stairs.
I try to avoid them but I'm gettin' nowhere
Let's replace all stairs
Short ones, long ones, fancy or plain,
If there ain't no elevator, then hear me complain.

Now I have no beef per se with stairs. It is just they scare the crap out of me. Give me an elevator or escalator over a stairway any day of the week. I avoid stairs completely unless they have a sturdy handrail, but then I use them rather reluctantly and only if there is no other option.

If faced with using a handrail-less staircase, I will stay grounded.

I have reached the PD stage where balance is a concern. So much so, that I was unable to ride a bike this past summer. I failed because I couldn't mount the bike. That was humiliating.

An incident today, humbled me even more.

I was out early, walking, using my nordic poles, when I espied a very tiny person, on a very tiny two-wheeled bike, racing down the sidewalk, with his dad in hot pursuit. I stopped and asked the panting father "How old is your little boy?"

He smiled and replied"Three"

"Good Lord!" I chuckled.

"I know!" he said proudly while chasing his kid down the block.

A three-year-old racer! He was three and rode easily. He steered left and right, checking his balance each time. He was having a grand old time. Just out with his dad and making him run. Now, I am 24 times his age and can no longer control my balance enough to even ride a bike!

Oh PD, you bastard! You get closer to victory every day! Why you do me this way!?

Have no fear PWP, the war ain't over yet.

STATS - A SLOW WEEK

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Oh that magic feeling

Saw Paul McCartney a couple of days ago. I had seen him once before - a very memorable concert, but this one, this one "blew my mind" as we used to say. It was, quite simply the best show I have ever seen (and yes, I have seen some good entertainment, eg, Black Sabbath, Led Zepplin, Iron Butterfly, Segovia, etc). At 76 years of age, Paul is still the greatest.

Only one problem. I was so "up" for the show, so into the music and the spectacle, that I subconsciously released the chains that were keeping my PD captive. My hand began to tremble, a long muscle (or nerve - I don't know anatomy) in my forearm began to tighten while my right leg went into spasm.

It was all very weird. It makes me think that my brain must work in concert with my drugs. Somehow the brain seems to assist the drugs in keeping me symptom-free. The music and the performance subdued that part of my brain that keeps tabs on PD and the symptoms escaped. Fortunately, the brain rearrested the escapees once I relaxed in bed at home and let my mind go blank.

Have you ever noticed that the highly intense PWP exhibit the most symptoms. Me neither, I have never noticed that in anybody I know; but, the existence of such people would fit perfectly into my theory that a part of the brain helps keep the symptoms at bay, so, they must be out there. Keep looking. A corollary would add that if you are highly symptomatic, you need to relax, permit the brain to shut down like they do in meditation.

When you meditate, you embrace your problems, your fears, your concerns, and even your anger. Let the body use its natural powers to heal itself (or so I have been told, I was never a fan of meditation, but I am going to start - tomorrow, Wednesday at the latest).

Where there are thoughts, it is distraction:
when there no thoughts, it is meditation*

Join me in my pursuit of nothingness.

*Ramana Maharishi

It seems so easy; so doggon easy

Everybody's talking about it.  "It" being the nervous system and in particular those neurons involved with the production of dopamine.  So let's start with a beginner's look at the neuron pictured here on the right.  A neuron sends and receives messages to/from the brain.

1.  light purple on the left of the cell represents dendrites which, through some kind of magic, pick up messages from other neurons.  The figure to the left shows neurons in action, the space between the neurons is called a synapse.  Chemicals called neurotransmitters allow the message to jump the synapse and pass it on to the next neuron.

2.  The long light blue fiber (you can barely see it in the diagram to the right) is called an axon and it carries the message away from the cell to the axon terminal (light purple the end of the axon) where the message passes through the synapse to the next neuron.  The dark blue bulges along the axon make up the myelin sheath, the purposes of which is to speed up the message along the axon.

3.  In our case, the neurotransmitter that allows the passage of the message through the synapse is dopamine.

4.  In our case, dopamine-producing cells begin to die off and less dopamine is produced and our movements are affected by this lack of dopamine.

So, that's the Cole's Notes version of the working of a neuron.  If I have made mistakes or left out some important point, forgive me.  "Damn it Jim, I am a blogger, not a neurosurgeon. "

Easy right?  Now you know what I know and it doesn't take a genius; although, as Einstein once said:

                  "Everybody is a genius. But if you judge a fish by its ability 
                   to climb a tree, It will live its whole life believing 
                   that it is stupid.

Well, you ain't no fish and nobody's asking you to climb a tree.  The trouble is, the system is a lot more complicated than I have outlined, and I am half way up that damn tree.

Sometimes you can expect mediocrity

I am having writer's block. It is the result of having too much material and not enough energy. My thoughts are my grandson's toys littering the carpet of my metaphysical living room. Yes, such a structure really can exist, albeit in the mind of a guy corrupted by reality.

But let's move on. It is time to clean the clutter that is preventing meaningful discourse, so here are the cole's notes versions of events from the past 6 weeks.

• The reunion: I played a major role in the creation of a reunion of old friends from across Canada. We are old, you understand, in our 60's 70, and 80's; therefore, you can expect to see all types of conditions. I saw people who needed hip replacements through to victims of cancer, but no other PWP were present. I compared PD with the other conditions I saw. Our great disadvantage is our disease cannot be cured, it will continue to have its way with us. Their problems, for the most part, can be fixed, ours, not so much. Was I jealous? Of course I was, but here's the good news. I had forgotten to take my medicine that day and the shaking palsy should have made an appearance, but the excitement of seeing old friends appears to have caused the shaking and the stiffness to disappear for the evening. No meds, no symptoms! Maybe PD is all in our heads

  (Now cut that out. You know what I mean.)

• Boxing continues to overcome my bad days. The boxers and volunteers are very laid back, interesting, nice and normal. I really enjoy the structured workouts, and behold, my left arm is improving. Boxing is good for PWP. It improves my outlook every time. I go home on a natural high and sometimes will ponder the future and realize it is not, as Leonard Cohen said, "murder".
• Another activity for PWP is choir. Thirty or so of us trying to sing and, except for the ladies, failing miserably. But the point of the exercise is to project your voice (like LSVT Loud). There is no requirement for a bonny voice, which is a good thing because we sound like a flock of sick parrots. The noise is truly helpful, and it is also fun, and it doesn't hurt that the other singers seem very nice and down to earth. The instructor has an incredible voice and is full of enthusiasm. As for me, at the conclusion of the session, people could actually hear me when I spoke. I recommend it to any, and every PWP, especially if you are voice-impaired like me.

SING, sing a song

Impairments in breathing and voice are substantial hurdles (in PD)that cause a significant drop in the quality of life.

Voice impairments impact 60-80% of Parkinson's patients. Their voice can become monotone and display less variety in volume; there may also be a reduced vocal intensity and pitch, and a harsh, breathy voice.

Standard Parkinson's treatments do not target these aspects with the same level of success as the motor symptoms. Deep brain stimulation of the subthalamic nucleus, which relieves many of Parkinson's classic symptoms, can, in fact, make voice alterations worse.

....(a study at Ohio State Universiy) consisted of 27 Parkinson's patients who attended group singing sessions either once or twice a week. Before and after the 8-week trial, swallowing measures and voice measures, such as the patient's vocal range and how long they could hold a note, were recorded.

Therapy sessions involved vocal exercises, followed by renditions of popular songs, including "You Are My Sunshine" and "Show Me The Way To Go Home."

The researchers found that, after 2 months of singing, there were significant improvements in pitch duration, vocal loudness and swallow control.
( taken from "Medical New Today article: Singing improves Parkinson's symptoms and Quality of Life by Tim Newman 4/18/15)

Okay, the time has come to expose my voice to the world. Somebody told me I have the voice of a little bird - a flipping parrot!!!

Only 3 hours before showtime. Am I nervous? Not a chance. They have been forewarned.

BTW, I will be signing autographs following the session.

comments

I am still getting the hang of this blog stuff and when I recently searched for comments, I noticed quite a few them deleted.  For some, deletion is what I intended; for others, I did not intend to delete them.  I apologize to legitimate commenters.  I will delete any comment that is in anyway commercial.  All other comments, good or bad, are welcomed.

Gimmie the new age religion

I am not afraid of dying, although I am not looking forward to it. In my philosophy, death is just another part of our journey to who knows where, but it will be interesting being a part of the energy of the universe.

A friend of mine died recently. He lived across the street from me when we were teenagers. I had not seen him in the past 50 years, so maybe "friend" is an exaggeration but still, his death upsets me. At 72, it focuses my thoughts on my future and those of my loved ones. At best, I may have a decade left to make my mark, but this PD thing kind of interferes with any bucket list I may have, or will have, concerning those 10 years.

I don't fear death so much as I fear its prologues: loneliness, decrepitude, pain, debilitation, depression, senility.

Those are the words of Mary Roach who went on to metaphorically describe death - "like a holiday at the Beach". I don't know about that. I do, however, believe we continue to "be" after death, in one form or another, but on a higher plane. I am not particularly religious, but I accept the first law of thermodynamics - energy can neither be created nor destroyed. If that is true, the energy of me will simply change form upon my death and although I won't be able to run a 4-minute mile, I will eagerly become a part of the energy of the universe. Besides, I have never been able to run that fast.

What has all this got to do with PD?

Absolutely nothing, unless you create your own philosophy involving death and PD. I can't decide that for you, but the basis for my philosophy is positive thinking and I continue in my role an eternal optimist. As for you, when you are formulating your own philosophy, keep this in mind:

Science without religion is lame
Religion without science is blind.

Einstein

What's up doc?

Saw my doctor yesterday. He is a good family doctor and I have learned more from him about PD than from my neuro. He confirmed my shoulder problems are caused by a rotator cuff problem and I can expect months of pain. Other than that, I am in perfect health (here I touch wood), but, "Months"!!!

I remember playing hockey in my youth. In those days there were no helmets or face masks....Well, there was a sort of helmet, a large leather patch at the back of the head attached with straps to a smaller patch of leather at the front. I didn't even wear that. This was before Jacques Plante and I took a wicked shot that hit me on the side of the nose and eye. For a while, I took the blue/red/yellow/black shiner like a badge of honor but it took a long time before it disappeared. I was sick of it after a few weeks.

I am sick of shoulder pain. It has worn out its welcome.

We PWP must take care not to blame every ache and pain on PD. We might miss something serious.

Aside from my shoulder pain, things are going better for me. I no longer fight with my sheets and standing from sitting is definitely improved. I remain a perpetual optimist.

Hit me with your best shot, PD. I can take it.

some good stats

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