“When are we going to go upstairs and eat?”

“Carl, we don’t go upstairs to eat, we eat here.”

“We always go upstairs and eat.”

“No, we don’t Carl, we don’t have an upstairs, we always eat here on the porch.”

“Yes, we do!  We eat upstairs!”

“Alright, alright.”

 

 

This past January I was going through a cabinet in my home “office” that was full of my old notebooks and journals, and I began to leaf through them.  I am not particularly organized so it’s not always clear if the entries are chronological or not, but in one notebook that contained most of my 2016 first-year Musings notes, I found a page dated April 29.  I am going to assume, therefore, that this was April 29, 2016. Here is a somewhat edited version of that day’s notes:

Yesterday my dad was diagnosed with Parkinson’s Disease. His primary care had suspected he might have the disease and he sent him to a specialist in Salisbury who confirmed the diagnosis.  He was ordered to be put on medication to start treatment.

Since I have had a couple of weeks to process the possibility of this diagnosis, to some degree I am glad that it has been confirmed and possibly the medication will help him.  He has endured changes that have noticeably impacted his activities of daily living and maybe some of those changes can be relieved.

Last week he had my mother ask me over the phone if I wanted his bicycle.  He was told by the doctor he could no longer ride his bicycle. 

I thought that was sad and told him to keep it out there for me to ride when I visited. 

It must be really hard.

I don’t know much about Parkinson’s Disease at this point, but I suppose I will begin to learn. 

I guess only time will tell.

In the meantime, I will learn as my dad goes through this, at least as much as I can.

 

And so began the learning experience.  The journey of watching the life of a once-proud, confident, independent, talented, competent, most of the time charming, and all the time stubborn individual, whose life had impacted so many, begin to implode.

A guy who was known for his physical abilities, his sense of balance, his strength, and his accuracy.  He could cross a log over a stream with ease, he could lean comfortably over the edge of the roof of a building while pulling a roll of tar paper up on the end of a rope; he could climb a rope using only his arm strength, he could drive a 10-penny nail with one swoop of a hammer and cut through a branch with one chop.

“One Chop Mo” they called him in Boy Scouts.

He could ski, ice skate, windsurf, climb a ladder, carry a backpack over miles of the Appalachian Trail, drive a firetruck, fight a fire, and even deliver a baby.

He could build a house, build a fine piece of furniture, build a First Aid building, and build a community-free library.

And he could ride his bicycle.

But not anymore.

 

 

The conversation illustrated above became more common as his disease progressed. But it wasn’t always like that and before reaching the point of incoherent sentences or confusion, as much as I could, I asked questions and wrote things down.

Though some of those conversations reached long into the night and were sometimes blurred and marred by Manhattans and red wine, not to mention the progression of his Parkinson’s, I tried to do the best I could to document his comments.  The Manhattan’s were always good grease for the wheel on his end, but on my end red wine didn’t always allow me to capture those memories as well as I would have liked.

But we had fun.

 

My dad talked a lot about “going home” as his mind began to change.

He always wanted to “go home.”

“Home” to him, in his later Parkinson’s years, was in Oceanport, N.J.

Though he lived in Woolford, on the Eastern Shore of Maryland, and hadn’t lived in Oceanport in thirty years, in his memory, he lived back in the town he was raised in and where he raised his family.

His life was going full circle.

And in his defense, in the house that he built in Oceanport; he did go upstairs to eat.  The kitchen was on the middle floor, or more exactly the third level of the four-level split he built.  If he was in the basement where his workshop lived, or in the “rec” room where his bar was located, he went up the stairs to reach the kitchen and eat.

So in his previous house, the “home” he remembered best as being his home, he went upstairs to eat.

Except for the few years as a child when he lived in the Scandinavian neighborhood of Brooklyn’s Bay Ridge section, my father was born and raised in Oceanport.

My grandfather moved the family to Brooklyn in the 1930s to find work and for three years, my dad lived and attended New York’s public school system in the 2^nd, 3^rd, and 4^th grades.

It’s been a while since we have had the ability to have those conversations when I could learn more about his life.  But interestingly, this past Monday, on his birthday, out of the blue, he shared another story I had not heard before.  You have to understand this was a big deal because most of his speech now is unintelligible.  On Monday, while we celebrated his birthday in the facility where he now lives, he shared the story of another birthday party he had in Brooklyn in 1939 when he turned ten years old.  He said he had just started to play guitar and they played “kissing games.”  He also mentioned that baseball was big back then.

I don’t know where all this came from but I got pretty excited and of course, took notes on my phone.

I have never heard him say anything about playing the guitar, but I definitely believe he played “kissing games.”  I did try to push him a little with some follow-up questions about the Brooklyn Dodgers but at that point, it was over.  The clarity had ceased.

I think he had a great birthday and for me it was awesome.

 

On April 29^th in 2016 I wrote:

“I don’t know much about Parkinson’s Disease at this point, but I suppose I will begin to learn. 

I guess only time will tell.

In the meantime, I will learn as my dad goes through this, at least as much as I can.”

 

It’s now April of 2022.

I am still learning.

Though I probably still don’t know as much about Parkinson’s in the clinical sense as I should,  I do know how it has affected my dad and impacted my mother.

 

My dad once told me “At one time I was the strongest kid in Oceanport.”

I believe he probably was.

That strength is gone now.

And the sense of balance he was once so proud of, gone too.

It’s hard to believe it has only been six years that we have been on this journey.

Yet he still has those days when he amazes me.

So I guess I will keep on learning.

As long as he keeps sharing.

 

Postscript:

I shared his birthday photo on social media and he got many responses and comments.  I read as many of those comments as I could to him while I was with him on Monday and will follow up with the rest the next time I see him.  Thanks to all for helping to make his birthday special.