Cold and it's getting colder

 I believe I have written about my inability to get off the ground.  I tell my brain to put the rest of my body and then.....and then.......nothing.  My body rebels and I can "feel" this rebellion through the absence of any muscular twitching.  I am grounded!

Now my readings have led me the conclusion that I also experience momentary "freezing" upon first standing or changing directions.  I have to be careful.  If I try to take regular steps in these cases I will probably fall so I am reduced a shuffle with momentary freezing between each stuffed step.  Now, I know this is not classic freezing, but surely the classic freezing will eventually arise, just as my momentary hallucinations led to a full-blown lengthy hallucination involving a pair of sympathy police (May 4, 2020).

classic freezing (from Wikipedia)

• Freezing is a common symptom of Parkinson’s disease, but can affect people in many different ways. Often a person freezes while walking, usually when changing direction or walking up a step, feeling as though their foot has become glued to the ground. But freezing can affect other movements, too.

More about freezing anon - maybe domani.

THE EYES HAVE IT

Eyesight - just another muscle in the body, but is it affected by PD?

Yes, it is.

I once asked my optomitrist if PD could affect eye sight. "Not that I know of," was her reply. You can't really blame her. PD was not in her purvue and since so few of us have PD in Canada (1 in 500), people don't view it as an important condition. Besides, PD is a designer disease, so that a symptom arising in one PWP may not be common in the local PD community and unless you are a fan of PD, you probably focus in on shaking hands.

Face it, you are a PWP and you didn't know PD can affect eyesight; so why would my optomitrist?.

I consider myself lucky. Eleven years post diagnosis and I am feeling good. I seem to have had visitations from most of PD's onslaughts, but they usually go away. But my eye sight is definitly changing.

My main problem involves is what the experts call it "convergence insufficiency". My eyes are not able to come together sufficiently as a target draws nearer. It affects my ability to read. I have to keep changing the position of the book to avoid double vision. It is a pain in the ass.

That's all for now. My eyes are tired and dry (both caused by my PD). The eyes are affected by PD in other ways as well. One particularly interesting article on the subject can be found on the website of the American Parkinson's Assocation.

Aphasia is not amusing

There are many causes of aphasia, PD is one of them and the aphasia can be mild to severe, depending on the cause.  It interferes with a victim's ability to communicate.

I think I have a mild case of aphasia.  It causes gaps in my speech. I know what I want to say, but when I open my mouth to speak, I momentarily forget the word I wanted.  Usually, I will make myself search my memory banks looking for simple words of description but it can be embarrassing.  

For example, I might be explaining aphasia this way, "I suffer from oh, what's the word, you know, when you forget a word .........etc"

Mine, I can often disguise.  I can't think of how I do this, but I do.

The softening of the voice is also a symptom of aphasia

Aphasia does not affect intelligence!!! and can be treated with speech therapy.  I take that therapy once a week.  It has helped, but I usually can overcome the softness of my voice by willing myself to speak louder.

Finally, in my case, it has taken away, what used to be, beautiful cursive handwriting. You would not be able to read anything I write down now.  I know because, I can't read it either.

Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written.

A Short History of Movement

 I can't be sure the years are correct, but the chronological order is right-on

2011- diagnosed with PD (this I am sure of)

2012 - had my first fall when I caught the edge of a paving stone on the sidewalk.  lesson learned - pick your fee up fool.

2013 - same as 2012- gave up running - reluctantly

2014 - on our annual trip to Sobe, I walked my usual 3 mile route with Sharron.  We were both acutely aware that I shuffled when I walked and had a tendency to lean forward.

2015 - gave up free style walking but used "ski" poles to aid balance.  I could really get moving using those.

2016 - 2020.  The ski poles were fabulous.  Over time I got slower.  I had no choice because when I stopped my forward motion, some part of my body convinced my brain that I was still moving until I would come to a sudden stop like against a tree or a wall, or some other immovable object.  Gave up "skiing" this past summer.

This past summer also marked the end of my bicycle career.  It seems you need balance to operate these vehicles.

I can still walk, albeit somewhat slowly but I can still find some amusement in my inability to lift my feet.  I was with my family at the beach and I got onto a flotation device at water's edge and was pushed off shore. When we returned, I hopped off about 10 feet from shore and immediately sunk to my ankles in the soft sand.  I was marooned.  I couldn't get my feet moving and required assistance. 

That kind of embarrassment won't happen again.  As usual, I will adjust, even if I have to wear snow shoes.

Still and all, I am in a very good place.  I have no complaints, just solutions. 

That ain't the way to have fun, son; that ain't the way to have fun.

 My mind is barren, a desert of pointless ideas. It has pretty much been that way since my wife died in late 2019.  Fortunately, I am writing a book of poetry and my editor keeps asking for more and I enjoy giving it to him.  However, if he doesn't give an idea, I resort to a sort of stream of consciousness and that leads to satisfaction and I am going to use that technique now to talk about falls by parkies.

The other night I was wearing my Victoria lifeline when I  turned too quickly and found myself falling sideways.  Immediately my lifeline called me to inquire about my state.  I was explaining that the call was automatic and I was OK, when the downstairs neighbour came knocking to find out what the big "thud" was.  I was telling her I had fallen but was unhurt when the front desk showed up, followed by my son (contacted by lifeline).  The rest of the time is lost. I wasn't sure if it was just an hallucination, but my son assured me it was real.

I am becoming an expert on falls.  Here are my suggestions on how to avoid them

1.    Festination - if you feel it coming on, and you will, sit down for a couple of minutes and then walk slowly to your destination.  Don't be confused with "fenestration" or you might defenestrate.

2.  Carry objects in one hand and keep the other hand free and ready to reach out, even to a wall, to get rebalanced.

3.  Turn slowly in a semi circular motion.

4.   Lift up your feet and keep one eye to the ground to avoid even tiny anomalies in the surface . 

 That is today's lesson.  Let's hope I do better in the future.  In the meantime read this:

https://www.theguardian.com/culture/2020/nov/21/michael-j-fox-every-step-now-is-a-frigging-math-problem-so-i-take-it-slow

Festination is a bitch

Today's rant concerns the centre of gravity for the human body.  This is important, so pay attention.  The center of gravity (aka  the center of mass)is that point at which mass is distributed equally.  Where it is on humans who are standing upright, with arms at their sides, you can fairly safely say the COG is located about 10 inches below the belly button. But the position of the COG moves around and its positions are dependent upon posture and the direction of limbs.  Not quite sure you understand this description of it's location?  Well you can figure out its exact position at any time using this equation

                    ∫R3ρ(r⃗ )⋅(r⃗ −r⃗ com)dV=0⃗

I vow never to use this method!

What use is this little package of information. Well, most of us parkies will develop the familiar parkie gait, which leads to a falling sensation.  You move your feet to counteract this feeling.  This gait is characterized by shuffling of the feet and the torso moving down and forward until the COG is located beyond the torso (outside of he body).  This causes the body to move faster and faster toward the COG, culminating in a fall.  If you feel like you're going to festinate, unless you take counter measures, you will festinate, not a fun experience. If you feel it coming on, sit down and the feeling will pass.  That is the solution to festination.

What is festination in Parkinson?

• In Parkinson's disease (PD), festination corresponds to a tendency to speed up when performing repetitive movements. First described in gait (and then in handwriting and speech), festination is one of the most disabling axial symptoms.(free dictionarycom.)

Don't trust your brain

 I am back......but  with a sad observation; emotions can be monsters in your mind and really, can you trust what you see?  I think I told about my encounter with the police resulting from an hallucination.  They were very understanding.  I thought the intruders were actually there.  The police initially searched the house, found nothing and I don't know what their next move would have been had my daughter-in-law not said, "He just said he thinks this must be an hallucination" and the topic turned to PD and PD drugs.  All's well that ends well.

I hadn't intended to bring this up except I have had a couple of hallucinations since and although not as dramatic, neither were they as scary.  I just tell myself:  Just another hallucination, go to sleep, and I do.

So beware your parky brain.  Take care of it but don't trust it. It is under attack and is losing its place as the king. 

Tomorrow, Friday at the latest the topic will be "Falls and PD"

IAIN'TAFRAIDOFNOVIRUS

 Living day-to-day is a luxury.  I know that.  I have PD.  So what!  My wife died at 70 from the big "C".  She missed the virus.  There are people out there with underlying conditions which make them ground Zero for a virus attack and I don't think PD qualifies as one of those conditions so I will just continue as Mr. Cool walking through molasses.

Wait a minute! 

People over 70 are also at risk!

Can't be.  

I am 74. 

Until now.

If anybody asks, I am 69!

the gate

the gate

 

There's a gate with no fence

But it's shut tight and locked

So stand on the outside and wait

my  time is a thread

pursuing the lock

So I rest with my lust on the gate

 

And off in the mist 

A glow in the darkness 

A woman of beauty and grace

her silks flow around her 

ethereal seduction

I doubt she'll remember my face 

 

We had spent time together

Disguised as young lovers​

That drive each other insane

But we did have our moments

Neither surrendered

​Just anger without any pain

 

She comes close beside me 

She whispers so lowly

Then I'm hither and thither and yon 

Make this night last forever

and don't be discouraged

If you find in the morning I'm gone

 

But where would you go

I asked her at midnight

A time when we askers can't wait 

I will just be a moment

She said through her smile

But I have to lock that old gate

 

I wanted to say 

you are liquid  today

Your clothes seem to flow with the rhyme

I was eager to stay

And bathe both your feet

and hopefully watch you bathe mine

 

Perhaps I was anxious

Perhaps I was frightened

perhaps there was no reason to stay

Our worn out romance

had gradually faded

Just gradually faded away

 

​She came back to me at twilight

with a vow to start over

She had her heart on her face

I was righteously scolded

and relentlessly molded

And properly put in my place

 

You think I don't know you

You think you can have me

Well I won't suffer the disgrace

when we broke into pieces

You plied me with poems

But it was time you had to embrace

 

Her voice became softer

Her sighs became stronger

She was certain her decision was right

She threw open the curtains

that remained in between us

and basked in the newly found light   

 

a tear in the fabric

Just growing desire 

She felt she had all it would take

​A rustle of slkens 

to debride the wound

And try to make me go straight

 

In the mist preens a couple

I fidget she trembles 

She's sweating while reading a line

You can lie here beside me

But seek absolution

then I will let you be mine

 

You must write me a poem

About a fence with no gate

and without any circular rhyme

Forget my desire

my lust will recover

you just have to give me more time 

 

the gate #2

the gate

 

There's a gate with no fence

But it's shut tight and locked

So stand on the outside and wait

my  time is a thread cocooning the lock

But the clock has its hand on the gate

 

​In the mist​ shines a figure

​who fiddles and fidgets​ 

​with a key that ​she wears round her neck on a chain

her eyes are the entrance

to thrills I'd forgotten

I release all the moths from my brain

 

​We had spent time together

Disguised as young lovers​

That drive each other insane

But it did have its moments

she didn't surrender

​Just anger without any pain​

 

​Now ​She beckons me, comforts me

grapples my mind

I'm hither and thither and yon 

Make the night last forever

and don't be discouraged

If you find in the morning I'm gone

 

But where would you go

I asked her at midnight

A time when we askers can't wait 

I will just be a moment

She said through her smile

But I have to lock that old gate

 

I ​know she remembered

b​ut we suffered in silence​

Perhaps we got lost in a shroud

we both could remember

​with passion and patience​

​Our thoughts never​ spoken aloud

 

​She arrived in the gloman

The very next day

She​ arrived with a memory trace

when you break me in pieces

It's not your fine poems

It's time that you have to embrace

 

​She flashes me slowly

​With things I desire 

but I know that I must be too late

​it's never tomorrow 

​but she suggests so sincerely 

your poetry just doesn't rate  ​

find me a fence without any gate

Until then you just have to wait 

I want a fence without any gate

 

the gate

 

There is a gate with no fence

But it's shut tight and locked

So stand on the outside and wait

my  time is a thread cocooning the lock

But the clock has its hand on the gate

 

Therein shines a figure 

standing guard with a key

she wears around her neck on a chain

her eyes are the entrance

to thrills I'd forgotten

I release all the moths from my brain

 

She beckons me, comforts me

grapples my mind

I'm hither and thither and yon 

Make the night last forever

and don't be discouraged

If you find in the morning I'm gone

 

But where would you go

I asked her at midnite

A time when askers can't wait 

I will just be a moment

She said through her smile

But I have to lock up that old gate

 

 I waited and waited

but nobody came

Perhaps I was lost in a cloud

She could smell my resistance

from that year long ago 

that neither had spoken aloud

 

Then she came from a place 

where angels reside

She came with a scowl on her face

you mean little to me

so little you see

It's time to get out of my place

 

 

 Normally, she muttered

 I'd have given you this key

 Not now,  you came back too late  

try rereading this missive

though with luck you might find

 There's a fence without any gate

OK DRAFT #10 * At last, I think

While traveling at the speed of dark
I came upon a listener.
I spoke to her of life and things,
But just above a whisper,
For fear she would break my heart,
If all my words should miss her.

my future life was tremulous

True there was no risk

We had spent a thousand nights one day

Writing on my wrist

Forget me not, forget me soon

My thoughts of her persist

and never in my neverland

will ever be dismissed

You see you start with nothing

And the years just rumble past

You win a few & lose a few

you try to make life last

 But I was farthings short and anyway

This die was all but cast

she turned to me and bid me go

I hadn't meant to see her

I'd wandered around aimlessly 

My brain did not deliver

my memory gave her the right 

to deny my right to be there

"What more could you require?" she said

"That life did not provide you?"

A removal of the pablum whey  

Where God had tried to hide you

I very nearly choked on it

While trying to lie beside you

"That was then and then is now

Your life has seen the glory 

The sputnik of the everlast

The spelling of our story

You shouldn't even stoop to ask

But I must say I'm sorry. 

I have to ask you please retire

And leave me slowly molding

My world consists of lonely dreams

And I exist there boldly

I think I've gone quite mad, you  see

I ask your understanding"

But I didn't want to come here

I came here by mistake

I know my future is my past

It's not too hard to take

I will even drop a lusty smile

A smile's not hard to fake 

And anyway my tragedy

Is still keeping me awake

Adieu farewell adieu old friend

My wish  will ever be

glad tidings flow to you and yours

I hope you will agree

you've lived too  long within yourself

please set your spirit free

For life is not a season

or so the shamen say

Deliverance is optional

Pray find another way

to end your isolation

and re-live another day

But frankly I no longer care

For I'm not here to stay

As I rode into the darkness

I had to turn around

I saw her there half quaking

 kneeling on the ground

arms raised in supplication

She spoke but made no sound

I stopped for I was curious

of what she had to say

Listening through waxed paper

her words just minced away 

I heard her voice calling but

I had no need to stay

my wisdom was extraneous

no reason I should stay

She once had shone so brilliantly

And fubarred* up my path

But now so dark and painful

She ne'er deserved my wrath

I had passed her on the straightaway 

And we both had finished last.

But in that fine sub rosa sway

That sweet dismissive siren

Had brightened up my day

*fubar is an adjective which is short for "fucked up

beyond all recognition" I have used is a verb 

because it suits the situation

The War of the micro-world

Well fellow parkies wouldn't you know it!  PD can be affected by an infection.  Don't you feel special?  After all how many people can say they have a degenerative brain disease that can be negatively affected by...well...just about any damn thing.

 

As for infections, in a March, 2020 report from MJFF, Dr. Rachel Dolhun made this statement concerning Covid-19:

 

            We don’t yet know specifics on how the virus might affect 

             a person with PD. But any infection — a urinary tract 

             infection, pneumonia or the flu, for example — can temporarily worsen   

              Parkinson's symptoms.

 

Call out the troops.  We are being invaded!

 Let us therefore brace ourselves to our duties, and so bear ourselves, that if our battle against pathogens should last for a thousand years, men will still say, "This was their finest hour."

The battle against pathogens

I got to wondering, "Does an infection have an effect on PD?"

Answer - It does and in the future, down the road a piece, I will explain it to you.  But, not now.  You see, in my readings I learned much about the immune system.  Logic dictated that I become acquainted with the immune system so I wouldn't be blown away with jargon when it comes to PD and infections.  How does the immune system fight infections in a PWD.  I never got around to that.  I was stymied by another, more fundamental issue.

 "Is there a god?"

I will tackle that subject later.

Let us first look at the immune system from a beginner's viewpoint.  The immune system is our army in the defense of our body.  Invaders, known collectively as pathogens, attack the body, and we counter-attack with some sophisticated weapons which we will use if the invaders breach our first line of defense, the physical barriers whose jobs are to keep pathogens out of our bodies.

The invader must get around the physical defenses, structures and chemicals which block the pathogen's invasion. Our skin is the primary blocker, but there are others; for example, mucus in the nose that keeps the pathogen in place until, for example, you sneeze.  

When a pathogen (virus, bacteria, micro-organisms eg)  finds an opening, it launches an invasion.  Enter the C cells also known as the leukocytes.  There are several types of leukocytes.  They are our army.  Our "grunts" so to speak.

Let's look at a couple of those grunts at work.  Macrophages and neutrophils are the body's sentries/fighters.  The neutrophils patrol in the bloodstream, as do the macrophages but, as I understand it, the neutrophils are restricted to the bloodstream while the macrophage can get out of the stream and move in the spaces between body cells.  When these leukocytes recognize the presence of a pathogen, they move to the entry site sending out a chemical call to arms and other leukocytes join in the battle,  their aim is to destroy the invaders, which, when they succeed, they "eat" the remains of the dead invader.

The next defenders are the lymphocytes, the T-cells and the B-cells.  B-cells produce antibodies, a protein found on the surface of the defending cell which recognizes antigens on the surface of the invader cell(an antigen is a molecule that attracts an immune response). These antibodies bind to the invader's antigen, marking it for destruction by the body's leukocytes.  

T-cells know the structure of the antigens on your own cells.  If a pathogen is successful in entering a cell (as a virus does to take over the cell and use it to make duplicates of itself) the action of the pathogen can cause a change in the host cell's antigen. This change in antigen is recognized by the T-cell and it removes the infected host from the battlefield.

 Read all about it from the dozens of websites online. There is so much more to the immune system, some of it is beyond me. So, I will stop here and lay me down to think a while.  

The Immune system is so complex, I have to ask "could such complexity be the happen-stance result of natural selection?  Does religion have the answer?  I know it will ave AN answer but will I be able to see it, clouded as it is by the various beliefs, or is the nod to religion in Star Wars more likely, more believable?

I dunno.

May the force be with you. 

To Todd, age 5*

Only the dogs are awake 

And you

They from excitement

you from your fears

Which I will cure tomorrow

Wednesday a the latest

*(written 36 years ago) 

Number 1 on the PD Hit Parade.....I 'm Walkin'. Yes Indeed and I'm talking' about you and me...

 I tend to repeat myself; therefore if I have inflicted my words into your existence before, tough luck, read on.  It might not help but can't hurt.

I am often off-balance.  I fall or almost fall, frequently.  I can fall while standing still, walking, or even on my knees.

Standing Still   This is the least likely falling position.  Why?  I stand with my feet shoulder-width apart, near some inanimate object (tree or wall) so that I can reach out for help.  If there is no such nearby object, having my feet apart allows me to control any stutter-step that may develop, mostly sideways but sometimes backward.

Walking  If I walk slowly and deliberately, consciously moving in a heel-toe pattern, I have no problems, but consciously heel-toeing becomes a drag (pun intended) and I begin to shuffle which puts me off balance and I have to watch out for any anomaly in the sidewalk or other surface. 

Walking with support a large number of people in my assisted living complex use walkers and are easily able to walk without incident.  I have not reached that level of uncertainty yet.  Instead, I use nordic walking sticks. which provide plenty of support, if I am moving at glacial speed.  Slow is anathema to me.  I gradually pick up speed until I become the poster boy for part of first law of the Newtonian Law of uniform motion.  Yes indeed folks. Demanding my aging PD body to work beyond its limits results in a body in motion remaing in motion until acted upon by an unbalanced force, like a tree or the ground.

Knees  Don't be lulled into thinking that knees are stable.  They are not.  That mysterious force that pulls you down is present in all situations, including kneeling and I have the black eye as proof.

Our greatest glory is not in never falling, but in rising every time we fall.

Confucius

Dark Rider - A History of a Moment

While traveling at the speed of dark,

I came upon a listener.

I spoke to her of life and things,

But just above a whisper,

For fear she would break my heart,

If all my words should miss her.

My tragic thoughts rode with me 

serene but not forgotten

she reminded me of memories

Sweet love of our begotten

then only did I realize

This rendezvous was wonton

You see you start with nothing

And the years just rumble past

You win a few & lose a few

you try all things to last

 But I was farthings short and anyway

This die was all but cast

she turned to me and bid me go

I hadn't meant to see her

I'd wandered around aimlessly 

My mein did not deliver

our history gave to her the right 

to deny my right to be there

"What more could you require?" she said

"That life did not provide you?"

A removal of the pablum whey  

Where God had tried to hide you

I very nearly choked on it

While trying to lie beside you

"That was then and then is now

Your life has seen the glory 

The sputnik of the everlast

The selling of our story

You shouldn't even stoop to ask

But I must say I'm sorry. 

I have to ask you please retire

And leave me slowly molding

My world consists of broken dreams

And I exist here boldly

I think I've gone quite mad, you  see

I ask your understanding"

But I didn't want to come here

I came here by mistake

I know my future is my past

It's not too hard to take

I will even drop a lusty smile

A smile's not hard to fake 

And anyway my tragedy

Is still keeping me awake

Adieu farewell adieu old friend

My wish  will ever be

glad tidings flow to you and yours

I hope you will agree

you've lived too  long within yourself

please set your spirit free

For life is not a season

or so the shamen say

Deliverance is optional

Pray find another way

to end your isolation

and re-live another day

But frankly I no longer care

For I'm not here to stay

As I rode into the darkness

I hapt to turn around

I saw her there half-naked

 kneeling on the ground

arms raised in supplication

her lips moved but made no sound

I stopped for I was curious

of what she had to say

Listening through waxed paper

her words just minced away 

I heard her voice calling but

I had no need to stay

my wisdom was extraneous

no reason I should stay

That sweet submissive siren

Had brightened up my day

 

BLITZKREIG!!!

My enemy, namely PD, launched a full-frontal attack last weekend.  It is out to get me and, you know what?  Eventually, it may get me.  It will win the war unless I summon my defences and hold fast until some very bright scientist prepares a superweapon and stops its relentless advance.

Although the stories I am about to tell you seem to predict a lonely, harsh future, almost despicable in its serenity, I still cling to hope.  No, hope is not quite the word I am looking for.  Hope implies uncertainty and my future is certain.  I will beat this thing or die in the battle. In the words of Shel Silverstein:

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.” 

The odds may be against a glorious victory,  but I will never stop fighting.  I shall never surrender.  Ours can be a convincing victory.  There will be bumps in the road, but so what!  They're just bumps, if you are aware of your journey and manage to keep your countenance in the midst of humiliation, which you will soon encounter,...with practice you can resist its power punch.

BUMP #1

This bump occurred on this beach:

My son had a floating, rubber platform which I managed to squirm onto.  For a half-hour, I enjoyed the kids boarding and jumping off but, alas,  we had to beach the craft.  I couldn't sit up.  my body defied my brain.  With my son pulling my arms and my 10 year 0ld granddaughter pushing from behind, I managed to stand but not before providing entertainment for the audience on the sand.

Bump #2

The second bump occurred af this beach, a half-hour's drive from Bump #1.  Our cottage has no AC, so I decided to take

the two little ones (5 & 10) to the Beach Mart, a convenience store about one-half mile away.  We were walking so I decided to take a ski pole for balance.  All was well until we stopped to cross a road about 50 feet from the store.  While we waited for a passing car, I dropped my pole and when I went to retrieve it, I started a stutter-step festination, landing on my side and narrowly missing the cement sidewalk, with my head.  With the help of my companions, I managed to stand.  I lost my balance, resulting in a stutter-step forward into the deep ditch that ran beside the road.  There was no getting out and up this time.  My two little companions tried to help but they were no match against gravity.   I struggled and struggled with no luck.  Cars drove by, but nobody stopped until a rather large man got out of his half-ton and stood me upright.  I was grateful but somewhat embarrassed.

These are the things that our enemy enjoys putting us through.  We are weak now but in the future.... we will reign victorious, happy and glorious, long to rei......well, you know the rest.  Stay safe and don' t let the virus get you down

BTW 116,247 PAGE VIEWS TO DATE

I DON'T WANT TO BE A PALLBEARER. I WANT MORE!

The rate of progression for PWP varies from person to person.  Unfortunately, it gets worse over time or maybe it doesn't.  Nobody knows.  It is not predictable.

But face it. Your symptoms - tremor, rigidity, glacial pace walking, and loss of balance are probably going to determine your future.  You can go from mild to debilitating.  If you are lucky, you will be able to manage 20 - 30 years following diagnosis.  If you are really lucky - well, you know.

My reading suggests;

     1.  Parkinson's might be stable for 10 years or so (5 - 10% of cases); or,
     2.  it might lead to severe disability within a few years; or, it might
     3.  go very slowly.  One reader has spent about 17 years in Stage 1.

There is some evidence that the progress of PD will be slow(er) if the first symptom is a tremor.  My first symptom appeared about 20 years ago - the loss of the sense of smell.  I was diagnosed when I developed a tremor in my right hand.  That was 10 years ago.  Now I qualify for all the symptoms listed above.  Fortunately,  my meds keep my problems locked inside my body and people are surprised when they learn I have PD (levodopa-carbidopa, mirapex, amantadine, and a very low dose of quetiapine fumarate),  The latter drug is to control hallucinations.

The best medicine for me is the half-hour I spend exercising each morning.  In fact, I have always believed exercise somehow slows the rate of progression and lately, studies have shown just that, exercise is the best medicine.  So get up off the couch and lift some weights, run, walk, bike, garden, etc.

When I coached athletics,  I told my athletes to imagine themselves winning their event.  Think positively, as I do in my morning workout.   I imagine the time spent exercising as a funeral for PD.  I can see it being lowered into the grave, deflated and defeated and I am positively euphoric.

I ain't afraid of no PD!

To date - 115, 511 page views.  Happy trails to you.

A short babble

What you should do if you are diagnosed with P D

1. Accept it!  It is not cancer nor heart disease or lung disease.  You are not going to die just yet
2.  Read everything you can find about  PD.  It will ease your mind.
3.  Stay away from "vitamins etc"   Sofar only prescribed drugs are effective at controlling the symptoms.  When I say "vitamins". I don't include "real vitamins, eg vitamin B , D, etc.  Those vitamins may or may not help, just stay away from snake oil cures.
4.  Don't believe statements such as----he died from parkinson's----.  You will die with PD, but it won't kill you.  You will probably live a normal life time, albeit a little shakey lifetime
5. get exercising and when you finish, exercise some more, 3 hours per weekExercisecan help slow down the progress of PD
6.  read this blog

CQ10

Wow! It has been over a month since last  I wrote.  I have a couple of things to pontificate on:

1.     I found the following in PD site....Dear friend, CoQ10 is beneficial to Parkinson's patients. I'm taking 100mg as supplements daily. I found myself walking better and talking with confidence. 

     In my >10 years of fighting PD,  I have tried many "cures". including CQ10 and have concluded there are no magic pills.  CQ10 won't hurt you but it will have no effect on PD.  I also found it to be too expensive.  If taking CQ10 is beneficial to you, then you are suffering from some other problem.

2.   There are 11 confirmed virus carriers in my province.  Nobody in the hospital, 300 in total since onset, 7 dead.  I consider these stats to be alarming so please stay away from crowds, wash thoroughly, sanitize, and wear a  mask.  God forbid we see stats like the fools in the south.

3.  Keep the border closed.

The professor has left the desktop.

Stay safe.  

wallflower

First draft of a poem I call "wallflower"

The queen of the shades
lurks in the shadows
lost in her mind and her moods
her yearning torments her
The music is soaring
She stands in her corner and broods

her thoughts are a maze
of one-way turns
She wallows in one and she sighs
she can't understand
the call of the wild
A howling that creeps from her thighs

She enters the circle
and sways to the center
but nobody knows she is there
she picks at her nails
she carefully painted
And runs her hand through her hair

then as if by some magic
her hand is rerouted
he takes her hand by surprise
they move to the music
delaying the darkness
that covers her heart and her eyes

just for a moment
she's caressed by enjoyment
her happiness comes and it fades
she won't let them see
the queen with a smile
she rules the land of the shades

Whatcha you gonna do when they come for you

Have you ever stared into the abyss and all you saw was the abyss staring back at you? You know now it was probably unreal but then you knelt before the god of light riding at the speed of dark, shedding pearls of uncertainty to form a garland of doubt around your neck.

It's a whole other world in here.

PART ONE ....On an all-time high?

This event I am about to relate is mind-bending. It rocked my world. When I took a walk on a yellow-brick road, I came to a fork. I couldn't decide which way to go until I heard the ghost of Yogi Berra, "WHEN YOU COME TO A FORK IN THE ROAD, TAKE it! So I did. I took the fork in the road.

Does anyone here remember the sixties? If you can remember them, the man says you probably weren't there. Do you remember the first time you got high? l mean really high. Not the marijuana type high. That's for sissies. I mean the kind of high in which you really don't know what's going on. what is real or unreal. You know, just an ordinary, superstar scary type of high!

Let me tell you about the first and last time I dated LSD. Some friends and I decided we would try some acid. We met with two dealers known as the Deputy and the Beast. The Deputy was the dealer and The Beast was the enforcer. We purchased some LSD from The deputy, placated the Beast and relocated ourselves to a party in a local frat house. It took a while for the LSD to kick in. but when it did, it scared the hell out of me. I was lying on a couch, watching revelers fill the room with sexual energy, when I reached under the couch and pulled out a long knife covered with blood. I didn't show it around for fear of the consequences. To be safe, I threw the knife deep under the couch.

I was mystified when I later discovered that my bloody knife was, in fact, a rat-tailed comb It was all so real. I believed e knife was real.

The knife was a real part of my unreal reality.

Our world was fraught with things that weren't there and when we got home, the three of us sat around supposedly "enjoying" the LSD; but, I was scared because I was a teacher and I could see, etched on walls of my mind, a headline Teacher takes LSD and fries brain. I was getting upset and I grew very nervous until someone said: "Relax, the drug has got a hold of your brain and it will go away". That made sense. I relaxed and enjoyed the trip. I took the scenic route. The one peppered with snippets of real unreality. I can laugh at it now, or maybe cry, but I never took a trip again and that should say something.

Part Two: Reality is an illusion

A hallucination is a perception in the absence of external stimulus that has qualities of real perception. Hallucinations are vivid, substantial, and are perceived to be located in external objective space.

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 psychosis usually starts with mild symptoms, but these can have a big impact on quality of life. Healthcare providers usually refer to these symptoms as "Parkinson's disease associated psychosis." Psychosis can vary from severe confusion (disordered thinking) to seeing things that aren’t there (hallucinations) to believing things that are not true (delusions),

Back to the future. I am alone in the house and asleep when a noise in the living room wakes me up. I go and find two people sitting in my chairs. One is a man in Goth makeup. The other is a woman who 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 so I go and get a ski pole from the bedroom. Their stare is relentless, so I hit the woman with the ski pole. She doesn't budge, so I threaten to call the police. This gets the man's attention but the woman just sits and stares. She refuses to leave. Gothman says, "I'm going" and he goes into the back yard. I say to the woman, "You better get out of here. The police are coming". I call 911 and the operator sends the police. I go out to the backyard to tell goth man 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 friends with her: a man and a woman. They are friends of mine. They are staring. The man is my oldest grandson. I say "where is Sara?" (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" and 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.

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.

"It is not materialism that is the chief curse of the world, as pastors teach, but idealism. Men get into trouble by taking their visions and hallucinations too seriously."

.
(H.L. Menkin)

Another three bite the dust

My mother used to say, "Bad things happen in threes". If she was right, I have nothing to worry about at all, having just completed my third. You see all my good luck has either abandoned me or maybe never existed.

Threes,fours, fives.....What does it matter!? I appear to be awash with bad luck, awaiting the return of my good luck.

Three bad things! That would just be the end. Here are the latest omens of the devil's work. Now keep in mind, these things are all played out against a background of PD ( heading into my 11th year) FIRST my wife died with cancer. She went very peacefully. That was 7 months ago and I still miss her terribly and I still have that "empty house" feeling. There is a hole in my heart that will never be filled. SECOND about 3 weeks ago I had the worst abdominal pain ever and walked into my bedroom just as an expert on CNN was saying "severe abdominal pain is possibly an early symptom of the virus".

What are the odds?

I brushed it off as a coincidence but when I took my temperature it was 37.2, slightly high, but google ensured me it was within the normal range for some people but it was also in covid-19's range. An hour later it was 36.9.

The next day I had a sore throat for about 3 hours followed by a very slight headache that disappeared when I started doing something.

Did the virus come calling? I don't think so. I think I am a bit of a headcase.

THIRD I looked at my hands yesterday and one knuckle was swollen. "Funny," I said to my son, "I don't remember hurting myself."

I put it out of my mind; that is, until the next day. I awoke to find that every middle knuckle on the fingers of both hands looking red and rough, capped off with swelling and filled with some kind of liquid. Google diagnosed RHEUMATOID ARTHRITIS and after having spoken with my GP, I am 100% certain of the diagnosis.

Bad things come in threes. Right?

Hope so!

Whatsa matter....

.....can't you take it? Over 6 long months of living alone. Fortunately, my kids see or talk to me every day. They take turns. I am a lucky man. I now know why females who look after the household meals find the job taxing. Having to come up with something every day, without becoming predictable, is not easy. I don't know what I will have today. I have to look in my fridge but I think I will know what I will find: bottle of ginger ale, butter, some weiners, old caesar salad, etc, etc. I have got to clean it out. Tonight I will have a frozen meal or MacDonald's. Actually, I think a couple of hotdogs will suffice. Today's advice - don't put bananas in the refrigerator!

Solitude - not for sissies

A CASE FOR SILENCE

I go to my living room, find my favorite chair, take out my iPad and watch Burden of Proof. The house is silent so, along with a glass of lemonade, I delve into my perfect solitude. I do my best daydreaming when surrounded by silence.

The alternative is to swim in loneliness. I miss my wife terribly; although, there are times I feel her presence in the house. No ghost is she; rather, she is a warm and a welcome, subtle ripple in the air. All in my head probably, but still comforting.

Generally, upon my wife's death, I think people felt a miasma of loneliness and despair would fill my future, but it didn't. In the quiet of my situation, I whisper her name and wish her good morning and good night. I am never really alone.

I am glad I am an introvert because I honor silence and aloneness. I can be alone even in a crowded room. I just retreat into myself and live in my bizzaro world where poetry has taken root and rhymes are alive and making a racket; but, I need a little real noise; OK, a lot of noise, in short spurts, to keep from growing old. My grandchildren provide enough clatter to fill that role and I love the fact my entire family is concerned about me, frequently calling or dropping in. That is noise that surpasses my quiet, zen existence. I look forward to their calls and visits. I am incredibly patient, But when the children leave, I am exhausted and I wallow in my solitude. I have no choice. Silence is a part of me.

THE LADY OF SHALOTT AND ME

I did break the curse yesterday. I went to the local Safeway without incident. It was eerie to see the bakery and meat counter closed and even weirder to see the paper towel and toilet paper aisle devoid of product, like some old communist Russian cold war grocery.

A word, if you will, on the virus that is keeping me housebound. I know it will be defeated eventually but it is a struggle. Every evening we check the numbers but they keep rising. My genuine gratitude to our front-line soldiers, the medical heroes

I am getting emotional, almost teary-eyed. Many parkies have hyper-emotions and find themselves weeping at the strangest time. It is a common symptom of PD, just another gem of our condition. I am the worst.

I can get emotional at the sight of linoleum!

A note to our southern neighbours. If you are a fan of Trump

"Remember, democracy never lasts long. It soon wastes, exhausts, and murders itself. There never was a democracy yet that did not commit suicide."

John Quincy Adams

Like some bold seer in a trance, Beholding all his own mischance

The only sounds in the house are the sounds of cars and the occasional person passing by, and I am feeling like the Lady of Shalott.  I am a prisoner in my home, a self-imposed quarantine, 'tis true, but I am still behind metaphorical bars.

With a wall and a half of windows, our living room is full of light.   I can sit and watch life go by, and keep track of the shadows as they creep across the street until they disappear into the evening.  I am The Lady of Shalott.  The lady had a curse and so do I.  My curse is having sentenced myself to self-imposed isolation to avoid the microscopic menaces that could kill me.

I am getting anxious, wanting to go out into the fresh air.

 I intend to soothe my anxiety today.  I am going to leave the house and to hell with the consequences.

Out flew the web and floated wide; 

The mirror crack'd from side to side; 

'The curse is come upon me,' cried 

                                        The Lady of Shalott. 

I ain't afraid of no curse but I can't help thinking, the Lady of Shalott died as a result of having 

unleashed her curse.  Nevertheless, I am going to go to the store, protected by a 6-foot force
field covering me and so, to hell with the curse, I am releasing myself.  

Freedom!

I will apprise you  of the mortality rate tomorrow.........if tomorrow ever comes