My dad, clean shaven, lays on the floor looking at the camera while I at approximately age 2 lay leaning up against him. 2-year-old me is looking off to the left with the light of a TV lighting up the picture. The colors are muted and faded as a picture from approximately 1977.
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My Dad and Multiple System Atrophy

Samhain, which falls on October 31st-November 1st, represented both an ending and a beginning to the ancient Celtic people. Often considered the most important festival of the Celtic traditions, the date marked the beginning of winter, the time when the veil between life and death was the thinnest; a time when the ghosts of those who had died that year mingled with the living and traveled to the otherworld.

And so perhaps I was not surprised when my mom texted me the morning of November 1st to say that my dad was in the emergency room. I had spent the night before handing out candy to little ghouls and goblins on the front porch of a home new to us; bought to be closer to my parents.

Several years ago, I don’t exactly know when, my dad started experiencing dizziness. It was a dizziness that never left him. It progressed and over time it became debilitating. His doctors couldn’t find an answer. Over Covid, when restrictions softened a bit, we would visit outside in the fresh air, and his response to how he felt was always about this sensation of dizziness.

In time, his walking became more of a shuffle and he stopped moving his left arm. His expressions, his smile, began to fade. We suspected Parkinson’s before he was officially diagnosed. His arms became bruised from bumping into walls and they never seemed to heal.

It was frustrating to see him in a medical system that couldn’t give us answers. I asked him to see a neurologist I trusted about 90 minutes from where he lived, but the dizziness was really too much for him. The drive, even a 90-minute drive, was so uncomfortable for him and he seemed content with his local neurologist. They were trying Parkinson’s medications (even without a diagnosis) and we saw some improvement of symptoms, although not significant.

Finally, somewhere within early 2022, his neurologist finally gave him a Parkinson’s diagnosis. I was there that day, frustrated with her unwillingness to formally diagnose even while modifying his medications. And so she finally called it what we had been expecting for some time– Parkinson’s– and I pushed to know what medications could help him. Was there anything that could release him for this terrible spinning that he was caught in? He didn’t experience the stereotypical tremor or uncontrollable movements, it was more like his body was rigid and unbalanced and slow.

Christmas of 2022, we began to understand that my dad had lost his ability to learn. He had terrible leg cramps and would pace to relieve some of the stiff and uncomfortable sensations. I bought him a machine used to massage the leg muscles, but even just turning it on and off was too difficult. I couldn’t teach him to strap them to his legs if he couldn’t find the on/off button.

The sensations began to change his perceptions of his body. I remember him standing from dinner once and him telling me that it felt like he was too tall, all the way up at the ceiling. It was a disorienting and uncomfortable place to be; in his body.

In September of 2023, my dad began to decline more quickly. We had seen moments of this over the summer–taking him to breakfast and him wanting to pay the bill before we ordered, constantly standing and asking if it was time to leave, his discomfort in his body, an increase in his napping. Napping was the only time he seemed comfortable and improved how he felt for a short time after he awoke.

At one point he knocked leftover food out of my hands as his body became more out of his control. We thought it was a side effect of a new Parkinson medication. Removing the medication did improve his abilities for a small bit of time, but the return of the decline came quickly.

And then came mid-October. I had begun going to my parent’s doctor appointments consistently with them after moving to be closer in June. I talked to his neurologist about the sudden decline we were seeing at which point, after looking at him, she gave him a new diagnosis.

She called it Shy-Drager Syndrom and described it as a more complicated version of Parkinson’s; one where medication doesn’t help. However, she also said that if we stopped his Parkinson’s medications, Carbidopa-Levodoa, that he would quickly lose his ability to walk.

I know now that Shy-Drager is something far more than a complicated version of Parkinson’s. I immediately started researching but even the links that I found at the time weren’t enough for me to understand exactly what it was. Her lack of explanation didn’t allow us to understand this diagnosis and what we were to expect. Perhaps she didn’t want to tell us what that really meant. Perhaps, with it being considered a rare disease, she just didn’t know.

I am still angry at her, with what I’ve come to learn.

Shy Drager is now called Multi-System Atrophy; a progressive neurological condition that eventually leads to death. In talking to neurologists since, I’ve learned that there is no recovery. There is no medication or physical therapy or way of healing his brain. Had we known, perhaps we could have made different choices in caring for my dad. We did our best with the knowledge we had, but I wish our knowledge had been more complete. My dad’s brain was in the process of shutting down.

In the weeks before the emergency room, I had gone up to play games with my parents; mostly cards but occasionally a board game. My dad’s vision had declined to a degree that he couldn’t read the numbers on the faces of the cards.

We tried to play an old favorite, Othello; a strategy game with black and white tiles. I had to tell him his color before every move and he would forget between picking it up and placing it on the board. I had to show him every possible place he could put a piece. He was frustrated and irritated in his inability to understand. When we finished the game (he won with my mom and I instructing each step), he accused me of cheating by telling him how to play.

This was so different than the dad I knew. His brain couldn’t make sense of the world or the interactions in it. He fought to stay awake when I would visit, but being awake was miserable for him.

On that November 1st, I made my way to our local emergency room to meet my parents. The MRI showed a small brain bleed, what is called a “spontaneous brain bleed”, which had happened in his sleep. When he had woken up that morning, he’d been unable to get out of bed, his arms and legs uncooperative.

Cognitively, I think he was more present with us than he had been in some time. He had never not known who we were before this day, and in those moments at the ER, he knew me and he knew my mom. He understood that they were transferring him to a bigger hospital with a specialty neuroscience ICU depart; lights and sirens.

He cried silently before they took him, with tears on his cheeks and gave me a kiss. I told him I loved him and he told my mom and I that he loved us. We told him we would be following him and would meet him at the hospital in Fresno. My dad never cried–I think I saw him once before, at his own dad’s funeral–so his tears told me how afraid he was. I think he knew that his life was coming to its end.

And while my dad lived for another six and a half weeks and I was with him every day, and while there were moments where I caught glimpses of my dad and who he had been, that moment in the ER was really the last moment of him being in a place of clarity. I’m so grateful I had those moments with him.

By the time we arrived at the ER in Fresno, his brain had begun to swell and he had begun to drift in the sea of transition.

My dad in his 20's with a dark beard and gentle eyes, holding me, his daughter, between the ages of one or two. His eyes are gentle and he's smiling. My hair is red and I am looking surprised at the camera. Photo colors are muted from the 1970's.
My dad and I, somewhere around 1 year old.

Part Two – coming soon – My dad’s time in the hospital, his seizure, his songs, the nights and the days.

Links

Honey – a short story I wrote about life, living, and the process of dying

My dad’s obituary

Tribute to my dad through the Michael J. Fox Foundation

Multiple System Atrophy (MSA) – The Mayo Clinic

https://www.parkinsons.org.uk/information-and-support/dystonia-and-muscle-cramps

https://www.healthline.com/health/shy-drager-syndrome

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One Comment

  1. My husband had PD-5 programme about 4 months ago. Tremors in his hands and jaw are gone. It doesn’t make the Parkinson’s go away but it did give him better quality of life. we got the treatment from abilityhealthcentre dot com

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