check it out its not all sad

Miracle

            It had been a bad vacation. 

Yes, I still loved the Island, its beaches and quaint towns, its maze of dirt tracks leading to farmhouses and luxury vacation homes.  I still loved Erica, her energy, generosity and creativity, all the rituals we had built over 39 years.  This year the twins, now young women, would be there, along with their older sister and her husband, and one of Erica’s sisters.

I loved it all.

But driving the 17 hours east from Indianapolis, we had to agree that it was too much for me.  I was easily overwhelmed, with little tolerance for complexity.  This became clear on I70 from Washington PA to the Turnpike, trying to keep 70 mph on mountain curves, through construction, changing lane patterns, flashing lights and barriers, trucks of all kinds.  The RAV kept drifting onto the right rumble strip.  I gripped the steering wheel like a lifeline, in terror of making a misjudgment and killing us.  Except for an hour and a half on the way home, Erica and the twins did all the driving for the rest of the trip.

Then there was my e-bike, an expensive gift with the idea of extending my biking years,  especially on the Island.  We quickly discovered that I was no longer strong enough to handle it in sand.  So the family went biking to the beach, while I went on one of my favorite bike trips around the Down Island towns.  I decided that I deserved cookies from the Scottish Bake House, and swerved an impulsive U-turn into oncoming traffic.  The cookies were great, but I was shaking, I guess I was tired from my long bike ride, because I crashed three times on the dirt track going up the long hill to our cabin.  Just a few scrapes, but the bike stayed in the shed for the rest of our vacation.

                        sand in the gears

                        wild raspberries just out of reach

I was unable to walk more than a painful mile, even with my new trekking sticks.  The family drove me to Long Point but I could not swim or play in the big waves.  Or walk to the pond where every year I look at shorebirds like the Greater Yellowlegs, but especially the swan pair with their new cygnet.

At Sylvia Beach, the highlight of my summer is seeing the Black Skimmers and Ruddy Turnstones, who stay on the bay-side.  I went swimming and needed to be pulled out because I could not keep my balance, even though the surf was about two inches.  I hate sun-bathing. I always get restless and want to do something.  I was telling Erica how sad I was to be unable to walk to the Ruddy Turnstones for the first time in at least 10 years.

As I was talking, I realized that I was looking at three Ruddy Turnstones, in full breeding plumage, bold swatches of orange, black and white.  About twenty feet away, they ran up and down the highwater line for several minutes, turning over small stones. 

                                                                                    traveling at toddler speed

                                                                                    100 miracles per hour

August 31, 2020

GOOD- BYE from Mac Greene

I will no longer be active on my Blog.

 

If you would like my poetry book from the Blog, Birds Still Sing, send me your snail mail address, to mcgreene@yahoo.com.  I will then mail you a hardcopy for free.  No charge, just promise to read it.

I thank all 54 of my followers, family, friends, and fellow travelers on this long and twisty road.

6 months ago I had to quit doing diagnostic interviews with the required 3-4 page reports because

  • I could no longer tolerate complexity or maintain concentration;
  • my right little and ring fingers are a tiny bit spastic at a level that is barely noticeable. These fingers frequently have little tremors so that I spend as much time correcting errors, as I do actually typing.  It’s frustrating, sometimes maddening.  For instance, I have spent nearly twenty minutes on this so far.

Now, writing in general is going the way of work reports.

  • My newest symptom is profound exhaustion and a vague, oppressive pain on the backs of my legs and lower back, called myalgia. I can barely walk a half mile.  Gardening is history.

I look at PD as a mountain composed of a series of plateaus, each one at a lower level of hell.  Think of Dante’s Inferno (the great modern rendition is by Larry Niven and Jerry Pournell).  I am now at the level of failed writers, jabbering incessantly “me, me, I am an undiscovered genius.”  They beg visitors to “read my manuscript, read my poem, get me a New York agent.”

Actually, I am past that yammering level.  I am approaching the level of illiterates and dumb ones.  I am developing an impressive ability to do nothing, to listen to the birds as if they might have the secret solution to this problem.  All of the symptoms of this new level add up to the dementia of Lewy Body Dementia.  I am being whittled down, smaller and less recognizable as ME.  To summarize, I am giving up writing (the Blog and poetry in general) due to spastic fingers; apathy, exhaustion and pain; increasing intolerance for complexity and  poor concentration.

However, I still intend to arrange my life as a sequence of pleasurable activities, primarily volunteering:   driving (I just passed my clinical driving test), warehouse work, etc.  Maybe I will post an update in a few months.

 

June 7, 2020

 

Where have I been?

I think I have been overwhelmed by the magnitude of this pandemic, especially the fact that we can turn off the United States just like throwing one mammoth switch.   The unanimity awes me, that the vast majority of people have thrown themselves into doing what’s right, whether it’s a medical professional on the true front lines, or all of us hunkering voluntarily.  We may forget it in the daily annoyances, but this has always been one of the profound strengths of our society, that when necessary we pull together.

I think I have gotten bored of PD.  It is now just a miserable part of life, a slow moving catastrophe like those stars that have been exploding, silently for a billion years.

Stranger than strange:  while the human world is in the midst of profound destruction and re-creation, THE BIRDS STILL SING.  We are in the midst of that annual miracle.  My yard is full of daffodils (daffa down dillies, silly) and six ducklings followed their mother down my drive.  Once again, the house wrens and Carolina wrens are exuberantly happy for no apparent reason.

                                                           Prayer

by Mac Greene

 

I have become familiar

with that old man in my mirror,

the one with wrinkling hands that shake just a bit.

 

I am in the “use it or lose it” phase.

I don’t ask for help with buttons

or putting on a jacket,

because I am not an invalid.

I drag two garbage bins out to the street

climb ladders, and go up and down

those 16 steps to the second floor.

 

use it or lose it.

 

walking is a unique challenge,

but I never say no

because who knows which time will be the last time?

I agree to the most rugged hikes,

and then walk up the steep part,

baby step by baby step,

my leg and back muscles radiating pain.

 

that’s when she said it,

a mother with three sons,

regular people taking a break:

“we prayed for you.”

they prayed for me?

I felt a rush of fresh air,

a lightening of my burden

and I continued,

baby step by baby step.

 

April 15, 2020

snow showers bird song March

Hello everybody,  i have great fondness for these crows ever since i saw them chase away the coyote.                Hey Rachel and Jay thanks for the virtual dinner date!!

the magnitude of current events makes my complaints feel like pointless whining.  like millions of others my main issue is boredom, feeling useless.  with horror just over the horizon; all the caskets in Italy; all the emptiness, empty streets, empty venues of every type.  i had a dream that i was going through door after door, and each one clanged shut, locked, and i could only go forward, but i didnt know where.  we know that its about to get much worse, but we cannot quite imagine it.  so its an eerie moment when the earth stands still.  (i am going to read up on the Black Plague)

 

The Day the Earth Stood Still, 1951

by Mac Greene

in the movie, the alien visitor

in his flying saucer,

brought a message

of World Peace.

He was greeted with violent paranoia,

and the possibility of love.

 

some things never change,

but this is not an allegory,

or even relevant to 2020,

although the earth is standing still

as an alien virus slows

and stops the entire world.

forget World Peace and a chance at love.

the world is gray today with raucous crows

and the thunderous screeching of tiny frogs.

meanwhile every activity has stopped:

gyms, basketball games, rallies,

theaters, bars, schools, businesses,

yoga classes. lectures, poetry clubs.

and worship in every holy space.

all activity has stopped,

while the alien is murdered,

trying to send his message of peace.

but as I said, that is the wrong story.

in the 2020 version, we beware

as the Titans fight, especially

when the earth stands still.

gray sky, empty roads, vernal screams.

the news updates the body count.

the virus moves in silence.

 

March 16, 2020

 

 

 

Vertigo

VERTIGO

by Mac Greene

 

the world is spinning,

clockwise if you are interested,

not little things, not me alone,

but the entire fundament,

heaven and earth,

and the realm between.

I had heard of vertigo,

in an old black and white movie,

a psychological thriller.

But I never imagined

that I would barely be able to walk

as the ground turned

and twisted below my feet.

I never imagined the nausea

as I stumbled like a drunken sailor,

as I hid my head beneath the pillows

and my bed like a boat

whirled through the universe.

 

MORE HALLUCINATIONS

As I always say, medication has abolished the peripheral hallucinations of burly men in their Russian great coats and beautiful women in red cocktail dresses.  The delusional parasitosis (bugs crawling on my skin) is also much diminished.  But I have never bothered to mention all the little things that continue to crawl through my life.  The shiny brass tacks on the sofa roll to the right and never go anywhere.  The crumb on the kitchen floor has legs like a spider and scrabbles along with that purposeful but somewhat random insect busy-ness.  In fact, any tiny stone or marking may crawl or roll or locomote through my perceptual field.  This is an odd hallucination because the motion looks so real and is so busy, but never actually goes anywhere.

I am bringing this up now, because the perceptual basis for my Vertigo is a huge and all-encompassing variation on the insects walking through my life.  The major difference is that in vertigo I am inside the hallucination which dominates me to the point that I can barely walk and I try to stay in bed under a pillow.  It has happened twice in a week and it has been hard to take notes or type reports with an unsteady visual field.  So, I informed my office manager that I can no longer take referrals that require substantial writing, because the activity of concentrating on little letters and punctuation provokes a feeling akin to vertigo.  By the way, this is an oddball type of dementia, a cognitive malfunction.

Ironically, just last week I was pleased to report that I had plateaued, and could mostly relax and enjoy life.

 

March 13, 2020

HAPPY SPRINGTIME! I am still wrestling with that invisible angel and the peepers are still peeping. I encourage everyone to watch the unfolding of the new season.

       UPDATE on the New Normal

Mac Greene, March 8, 2020

 

       I watched 5 crows chase a coyote out of my yqrd

 

I just had my neurology eval, two years out from my initial diagnosis of Lewy Body Dementia.  Two years ago I thought that I was dying, with a life span of 5 to 7 years, with a gradual, inexorable degeneration, and an individualized package of odd symptoms.  This sardonic view was somewhat ameliorated as I realized that Parkinsons and LBD are a lot like normal aging – but speeded up.  My kids only see me a few times each year and they agree that I have plateaued; I am not visibly degenerated.

I no longer have the ever-present fear of degeneration and death.   The most common causes of death among Parkies are pneumonia secondary to aspiration or falling down the stairs.  In other words they are avoidable – with luck.  We will see whether I can maintain sufficient strength and mental clarity to make it worthwhile to live into my mid-80’s.

 

all the birds are either partnering up or heading north

          I saw 10 Northern Shoveler Ducks on our retention pond

                              these are a few of the miracles

 

Major symptoms 98%  controlled by medications = Hallucinations, Charley Horse Pain, REM Sleep Disorder.

Minor symptoms to live with = anosmia, masked face, problem with stairs, hypophonia (soft voice).

Major symptoms to live with = illegible writing and typing requiring excessive correction, gradual dementia, bradykinesia (slow movement), steady weakening of my legs, aspiration.

 

    cardinals no longer sing above the silent snow

     they sing atop every tall tree, owning the world as they know it

 

At my recent neurological exam, Dr. Joane also agreed that I have plateaued, that functionally  I am doing very well.  With one major exception:  spatial/temporal brain function.  In other words, the ability to orient myself in the physical environment, to drive a car, to engage in the myriad procedures of daily life.

She has referred me for a clinical driving test. I am sure I will pass – because otherwise it will be a devastating collapse of the productive and happy lifestyle that I have created in the last two years…….to be continued……..

 

the cardinals are singing at dawn, nicely contrasted to the silent snow

C O M P L A C E N C Y

by Mac Greene

 

Bravo! for me.

I was afraid that I would never assemble my PD chapbook  I had been generating new material since my diagnosis in March, 2018.  I had been examining and analyzing the effects of PD/Lewy Body on every aspect of my body and mind and social connections, 165 pieces.  For the past year I had been eyeing my first draft, without actually looking at it, feeling overwhelmed.  As I said off and on during that year, my first dementia symptom has been “intolerance for complexity,” and this folder with 165 pieces was bound to be complex.  In addition, incrementally I am having increasing difficulty with the mechanics of writing and typing.  My right fingers, especially the pinky, are getting spastic so my typing is full of unwanted p’s and the o’s and l’s keep banging into each other.  I spend as much time making corrections as I do typing.  Finally, you’ve heard me talk about apathy, and it took me a full year before I had the motivation to do the chapbook.

One afternoon to download and copy 165 documents.

Two or three afternoons to review the documents and try various ways to organize them.

Then a tedious afternoon uploading, copying, and pasting all single documents into one huge document (the chapbook.)

Two weeks to fuss with it, edit, get an overview, make corrections, write the Preface and Table of Contents, etc, etc.

Since the moment I sent it off to the Blue Light Poetry Book Contest on February 13, 2020, I have been proud  but utterly exhausted, for about two weeks now.  I was turned off by the idea of any poetry work.  I thought the well ran dry;  as time passed I was  feeling guilty about no new blog posts.

now i have a new topic   Vertigo   back in the saddle ready to write

try Vertigo as a poem

 

Thanks for your interest and patience.

Hello Everybody,  Happy Spring??

On the one hand, there seem to be almost no birds.  I couldn’t find the crow roost this year.  10,000 crows usually close to downtown.  where are they?  Why are the woods so quiet?  On the other hand, a small crew of Song Sparrows and larger expeditions of robins arrived 6 weeks early.

On the other hand, I had a breakthrough.  After a one year hiatus.  I am back to my final poetry project.  I printed out over 100 poems in my Parkinsons folder.  It seems that i did this over a year ago, but i forgot how much i had done.  now i obviously have much more material.  My goal is to be able to generate a variety of poetry chapbooks to meet the style and interest of different magazines and printers.  So far i am productive but inefficient.  Remember “Intolerance for Cognitive Complexity”?  Dementia does not improve.  But i hope that i have created productive habits and enough simplicity to succeed.  We will see.

12 degrees and i found another dandelion in bloom. i send along my Christmas piece before it gets too stale. they came, they left, then i took the lights down leaving a thunderous silence.

Christmas, 2019

by Mac Greene,

First I checked the jewelry, toys, and art,

gifts bought over the past year.

There were enough and so I wrapped and mailed.

The adult kids with their attendant lovers started showing up,

Chez Mama’s restaurant shifted into gear.

We chopped down our Christmas tree,

erected in the living room, decorated in our traditional ways.

We lit candles for the tree,

but it was also Hanukkah with more candles and the Hebrew blessings.

The evening of Christmas day we had our unwrapping party,

admiring each giver’s thoughtfulness, missing Elaine.

We went to movies and concerts and Hamilton, the Broadway show,

hikes and bikes, games and puzzles,

the magic lightshow at Newfields Museum of Art.

We missed karaoke, a scheduling glitch.

 

And then it was over, everything cleaned and put away,

children and lovers disappeared,

Christmas tree stripped and dragged into the woods.

 

I am left with echoes,

tumbling down stairs, laughing in the living room,

bustling in the kitchen, wine bottles popping,

ghosts all around.                                                                                           January 15, 2020

the Carolina wren continues to celebrate life despite a little taste of winter–towitty toowiddeetoowiddee an otherwise quiet blue jay did its hawk imitation and then slinked away

My Jaunt to NYC,  January 10-13, 2020

by Mac Greene

There are maybe a dozen lines of research into PD and other neuromuscular degenerative diseases.  Medical doctors and PhDs are exploring all sorts of exciting avenues:  symptom treatment, new and repurposed medications, genetic causes and possible treatments, Lewy Body prevention or removal, prevention in general, stopping or mitigating the progression, stem cell treatment to re-establish dopamine production.  Prizes are being offered to individuals and labs.  I want to help with research but I do not want to be in a medication trial.  With the help of the Michael J. Fox Foundation I found two studies at Columbia Presbyterian Medical Center and Columbia University Medical School.  One is specifically for Lewy Body Dementia (my diagnosis) to identify biomarkers for early identification, since we know that some symptoms are up to 10 years prodromal.  The other is a 13,000 population study of Alzheimer’s and other Dementias examining symptom patterns, correlates, and pathways of progression.

I chose NYC because I have two adult children living there, Nathan for about 15 years raising a family in Park Slope, Brooklyn and Ariana recently moved to the Lower East Side with her new husband, Atom.  I love NYC.   I love to walk the streets, feeling that intensity, people watching, marveling at everything.

Solo trips across the country also provide a measure of my slowly declining competence.  My main cognitive deficits so far are intolerance for complexity and poor retention of recently acquired information.  Any city is obviously a complex environment and trip planning by definition requires many details.

My overall strategy is to break the whole trip into chunks, stay habitual, stay calm, ignore irrelevant information, write lots of little lists, let others lead, ask for help, ask for help.

 

Friday, January 10, 2020

5th or 6th chunk is landing at LaGuardia, only to find that the cab line has moved and requires a shuttle bus.  I decide to ask about a shuttle bus to Columbia Presbyterian.  I am directed to the M60 which is convenient to get on but turns out to be a local bus to Harlem across 125th Street.  That was epic!  All the street life, more Puerto Rican and assorted brown people than the Black City of Music and Poetry in American mythology.  I got to see the famed Apollo Theater, with a line for tickets reaching around the block, already at 930am.  I noticed again the New Your preference for black clothing, with people of every ethnicity and social class wearing quilted black winter coats.  When the bus turned south on Morningside, I got off, knowing that in New York taxis are everywhere and they take credit cards.

I found the Medical Center and the address on 168th Street, and the 10th floor and my project coordinator, Kate Smith.  I was pleased to answer hours of questions about my symptoms, finding it nice to be understood.  The Spinal Tap turned out to be a trivial procedure despite its fearsome reputation.  I was able to break my fast by 2:00, in a Puerto Rican deli that was so loud and efficient that I was completely overwhelmed.  So I ordered one of my habitual lunches and sat in a corner.

I took a cab to 34th and Madison, enjoying the bright shiny day; intrigued by the contrast between Harlem and Midtown, excited to see Ari’s office as a Clinical Psychologist, Dr. Moran.  We luxuriated in the cool empathy, the stage for so much anguish and hope.  Then I was privileged to share her daily walk home to 14th Street.  We walked own Park Avenue so we could see the huge sun constructed on the side of a building, and also the Union Square Farmer’s Market said by everyone to be the best in the city.  Atom came home soon, after a day as an Apple Genius on 5th Avenue.  Their apartment is tiny, but definitely a home, full of art and personal mementos, with a kitchen fully equipped for their shared passion of cooking.

At 7:30 they dropped me at the Gotham Gym in Brooklyn, where 11 year old Claire was practicing, 9 yo Zoe was nursing a broken back (just a vertebral growth plate), and Nathan was single parenting because Trich was caring for her mother in California. Friday night, dinner in a family style restaurant, the girls are in bed at 11, and Nathan is exhausted.

 

Dear Reader, you get the picture.  Saturday and Sunday were equally full.  My bradykinesia was more notable to me, everyone else seemed to think that a slow pace was appropriate to family outings.  Excellent ethnic restaurants on Saturday with Ari and Atom, on Sunday with Nathan and the girls.

Monday fasting till blood draw, but I followed their recommendation and brought latte and muffins.  Neuropsychological testing was fun in a way, but I bombed on all of the immediate and short-term memory tests.  I will get a report in 8 weeks.  In the mean time I can still travel independently.  We do not need to pin my name and contact information on my shirt, not yet.