I think I am in business. I will post on most Mondays and Fridays. This will be an online journal, a phenomenology of Parkinsons, one man’s attempt to salvage something of use from a slow-moving catastrophe. Thanks to everyone for your interest and support.

          Outing Myself

by Mac Greene

First I outed myself to myself.  That was harder than you might think.  Then my wife and the doctor, and one of my daughters who told all her siblings.  I told the rest of my family and my wife’s family, and my oldest friends.  The management team at work needed to know, in case dementia creeps up on me, or the palsy hits me hard and suddenly.  I had to tell the Poetry Salon, since this will be my main topic for awhile.  Beyond that no one needs to know, because I look just fine.  Except for slowness (bradykinesia) and struggles with stairs which can be written off to normal aging.

I discover a *community of millions of Parkinsons patients and their families and friends.  I flatter myself that my 30 or so poems on this topic might be helpful and interesting.  I set up a Parkinsons blog, the end of privacy on that subject.  I came out to everyone else at work, just in case somebody stumbles onto my blog.  My goal is to come out of the closet, to transform my secret shameful identity into a curious set of medical facts.

 

 

*Two notable examples are the Michael J. Fox Foundation, which is truly magnificent in the range and depth of their support for education and research, and the Parkinson’s Awareness Association of Central Indiana which has created a warm and helpful support network.

January 20, 2019

 

 

 

 Freak

by Mac Greene

Black people get to use the N…word,

a fat man can call himself out.

 

Drooling, guffawing in my sleep, a mask-like face, hallucinations, teeny tiny writing, the Parkinson shuffle.  This is only a partial list, and I don’t even have palsy yet.

 

it’s not PC

to call myself a freak

…how about marvelous?

 

January 20, 2019

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Anosmia, or Olfactory Anesthesia

by Mac Greene

I never had much of a sense of smell,
and now it’s mostly gone,
which comes in handy when plunging the toilet,
visiting a nursing home, or cleaning up vomit.
I don’t miss diesel fumes, oozing dumpsters, or the lobbies of old buildings.
I remember the milky scent of baby’s hair,
the dewy green of a spring morning,
wet dog, wood smoke, jasmine flowers,
each person a unique bouquet grounded in the tang of body,
the steamy, musty camaraderie of a locker room

I grieve for all the smells of my lover,
my wife,
the pungency of sex and sweat, the summer prairie of hair, the magic of perfume.
I remember the thirty roses of our first night,
rose oil from the Rasta man,
yellow and lavender roses so subtle that I barely remember them at all.

September 1, 2013

ODDITIES-2

More about the symptom puzzle.  Most PDers seem to suffer from constipation and apathy, as primary, chronic symptoms.  What?  These symptoms are not even in the same part of the body.  How can they be related?

            I like the image of a hand underwater.  Let’s say that we can see the fingers but not the palm – the fingers seem to be separate and unrelated.  We don’t know what the palm is.  We don’t know the puzzling connections between oddly different PD symptoms.

            Here’s the ODDITY for this week.

            Growing up among the Good Time Charleys, I have a complicated relationship to alcohol.  As most people seem to, as well.  I had finally settled on one glass of wine or a beer at the end of the work day.  Kind of like the cocktail at the end of the day in the 1950’s.  At about the time that PD hit me, I had started Mixology as a new hobby.  I bought some recipe books and various types of hard liquor, sweets and bitters.

            Then about a year into my self-taught mixology, I suddenly lost all tolerance for alcohol.  Two sips of wine knocked me flat.  I threw away beers that were two thirds full.  So now I rarely drink because it is obviously no fun.  All my bottles are gathering dust.  One more thing robbed by PD.

            My neurologist said, “of course!  PD and alcohol hit the same system, neuro-muscular coordination.”  So what did I think?

February 4, 2019

ODDITIES

It is a puzzle to solve.  All these diverse symptoms that seem to have no relationship.  I had night thrashing for years (REM Sleep Disorder.  I consulted an ENT doctor for my fading voice (hypophonia).  But it was micrographia (teeny tiny writing) that let me finish the puzzle and diagnose myself.

I have been slim most of my adult life, mainly through portion control and daily weigh-ins.  A few months ago, I lost 4 pounds in 4 days, without trying.  I looked it up and sure enough, rapid weight loss is not only a symptom but indicates a likelihood of a rapid deterioration.  So I started eating a big cookie whenever I can, and insisting on desserts.  So now my weight is stable.  But is there still some rapid degenerating process beneath the surface?  Nobody knows!

thanks for checking in.  have a happy.

Wow! thank you everybody. I did not expect so much. Guffawing

by Mac Greene

My wife said I was laughing last night.
“All night, guffawing, uproarious,” she said,
like the Good Time Charlies of my childhood,
the Good Time Charlie that I never was.
“Guffawing?”
a hardy laugh, a belly laugh,
a laugh from the deepest part of myself.
This is certainly better than moaning,
better than yelling in my sleep,
better than thrashing myself out of bed,
leaving bruises and bloody scrapes.
I am the guy who laughs too much.
I have to apologize and explain myself.
I am the guy who likes to say,
“sometimes you have to laugh just to keep from crying.”
Let my nightmares dissolve into uproarious laughter.
Let me stand above the great nothingness, and guffaw.

March 3, 2017

thanks

I just had a burst of activity, interest from friends and family as well as others with similar concerns.   part of the burden of a chronic disease in the early stage is the loneliness.  I look ok and can do most of what I have always done so no one has any reason to think otherwise.  so part of my motivation is selfish.  But another part is to validate the experience of others like me who are living in two worlds.

I am meeting with a wordpress consultant next week, so hopefully all the rough edges of this blog will be smoothed down soon, and most importantly I will be able to post poems.

OUTING  First I outed myself to myself.  That was harder than you might think.  Then my wife and the doctor, and one of my daughters who told all her siblings.  I told the rest of my family and my wife’s family, and my oldest friends.  The management team at work needed to know, in case dementia creeps up on me, or the palsy hits me hard and suddenly.  I had to tell the Poetry Salon, since this will be my main topic for awhile.  I thought that no one else needs to know because I look just fine.  Then I discover that there are a few million people with PD.  Setting up this blog is the final out of my outing process.  My goal is to transform a lonely secret identity into a curious set of medical odditiesl

My New Bike

by Mac Greene
has fenders and fat tires.
retro cool to the max!
It’s rad! It’s dope!
My new bike has electric go-power.
When I pedal, it zooms.
I don’t sweat the hills anymore.
Of course, the supermarket has had electric shopping carts for years,
and police still ride Segways in airports.
Now the city has little electric cars
for rent at convenient locations,
and electric scooters on every corner.
Test driving my new bike in the park,
a man rolled by on one little electrical wheel.
I am personally hoping for electric braces
before my post-polio legs get much worse,
and before I get too aged,
I want an electric walker
so I can race around,
like Mercury on his celestial assignments.

January 6, 2019