Some words of explanation may be necessary to introduce this series of essays. I’ve always wanted to be a writer. People say that I have a way with words, but most will argue that my way is demeaning to the words, not to mention an exercise in futility for both the reader and the writer. I am a word bender, perhaps the last of my kind. I bend and manipulate words not for any greater good, but often solely for my own pleasure. I am a legend in what is left of my own mind. (And even now, I am chuckling to myself about the obscure underlying references in this opening paragraph that are present primarily for my own entertainment.)
That said, for those who make an attempt to read these words, it may be helpful if I provide some of the more immediate backstory without any overt attempt at humor or flowerful language.
The essays, or chapters, that follow are an exercise in creative writing that attempts to simultaneously entertain and enlighten … with an epic tale of an extraordinary journey with Parkinson’s disease … carefully wordcrafted from an artesian wellspring of “playfully pompous prose” ™ … and based on a mostly true story that is interwoven with a tapestry of philosophical meanderings of variable profundity, irrational nonsense, absurdity and the occasional insight that makes you say hmm …
I’m calling it “2021: A Parkinson’s Odyssey (or Oddity)” for several reasons …
Like Homer’s original odyssey, it is epic. “Epic” is a warning label that is affixed to many classic works of literature, which means that the most notable attribute of the narrative is that it is extremely long. In modern internet lingo, we just say “TL;DR” or “too long; didn’t read”.
Sometimes, especially late at night, when I’m trying to get up from the sofa, the inner dialog between my brain and body is like conversing with HAL, the computer in the classic film “2001: A Space Odyssey” .. all I hear is “I’m sorry Dave, I’m afraid I can’t do that.”
And when I think about Space Odyssey, I can’t help but think about how it inspired David Bowie’s “Space Oddity” … “Ground Control to Major Tom … Can you hear me, Major Tom?”
Bottom line … this story is probably more oddity than odyssey …
I feel compelled to share some boring backstory that may assist any neuroscientists in the reading audience to determine whether the essays that follow are the delusions of a damaged mind, or the untapped genius of a yet-to-be discovered visionary. (They say that sanity is bordered by a fine line, but I argue that any such border, if it even exists, is porous.)
Before we get to these boring bits, I know that many of you (myself included) are subconsciously chanting “Don’t Bore Us, Get to the Chorus“. You were promised an intellectual thrill ride … and I don’t want to disappoint. I won’t be offended if you use the link below to jump ahead to the first chapter.
The backstory …
In 2014, I was diagnosed with Parkinson’s disease (PD) at the age of 47.
The diagnosis is not based on a blood test, or a tissue test, or ultrasound, or CT scan, or brain MRI. Oh … they’ll probably give you a brain MRI, but that is to confirm that it isn’t something else. The diagnostic criteria for PD is actually based on clinical observation and a series of tests like how fast and steady you can pinch your thumb and pointer finger together … and the same for tapping your feet on the ground … and stomping your feet. There’s a grip test, getting up from a chair without using hands or arms test, balance test, and a reach out and then touch your finger to your nose test.
And if you have a tremor, they’ll look at the frequency and amplitude to determine whether or not it is Parkinsonian. Tremor is the most frequent symptom that most people associate with Parkinson’s … but having a tremor does not mean that you have PD … a condition known as essential tremor is around 8 times more common.
This is a weird disease on many levels. The most positive thing that you can say about Parkinson’s is that it is generally a disease that you die with, but it’s usually not the disease that kills you.
Over time, the effects of Parkinson’s can be quite overwhelming. Although the actual disease is occurring in the brain, the primary symptoms of the disease are usually related to motor functions and movement … things like tremor, extremely slow and awkward movement and balance issues. There is also a side effect of the medication that tends to develop over time where muscle movement can become uncontrollable.
Those who have the disease do have an increased risk of dementia and mild cognitive impairment. This can sometimes be difficult to detect, because Parkinson’s tends to effect vocal muscles which can make voices softer, so as long as you keep exercising, there’s a good chance that people will just think you’re the strong silent type.
The medications available do not cure the disease or stop the disease from getting worse over time, they exist solely to help control the symptoms of the disease. And, as I mentioned earlier, they have side effects. The primary focus of these meds is to boost a brain chemical (the neurotransmitter dopamine) that is used to send signals to initiate movement. But this same chemical is used in other parts of the brain for other purposes in the so-called “reward pathway” which is involved in motivation, learning … and for … well, for now, let’s just call them primal urges and instincts … so, some side effects might be psychological.
Generally speaking, there is a gradual progression of the disease that greatly impacts your independence. The speed of this progression varies between individuals for reasons that, like the disease itself, are not well understood.
As the disease progresses, the drugs are less able to control the symptoms … and the duration of time that each dose lasts becomes shorter and shorter. The periods when the drugs are working are known as “on periods”, and the in-between time when they are ineffective are known as “off periods”.
6-1/2 years in, I consider myself lucky. My progression has been slow, and so far, life hasn’t changed all that much for me because of PD. As I write this in late December 2020, last week I had a semi-annual checkup with my Neurologist/Movement Disorder Specialist. At one point she commented that I was likely to live a total of 30 to 40 years of my life with Parkinson’s.
That’s a long time. I asked if there was any chance of time off for good behavior, but she said it was more likely that bad behavior might hasten my departure. Parkinson’s is not going to kill me, it’s just a condition that I will die with. That’s great news because when my time comes, I’m counting on the coroner to write-in “death by misadventure” above his signature.
Before the silliness and nonsense engulfs us in this odyssey … and it will, let me say a few more serious things about PD …
When it comes to living well with Parkinson’s, I can’t understate the importance of exercise. For the first 5 years of my PD journey, I embraced exercise with a passion … perhaps too much passion, as over the past year, it seems I’ve struggled with multiple pains and conditions that have forced me to cut back on exercise. When we face these types of challenges, we need to adapt and modify our routines, but keep exercising . The experts tell us this helps the brain generate new neural pathways and reinforce existing ones. But it’s also common sense … PD, especially when you are in an “off period”, is going to present you with situations where your brain can’t make a particular muscle move like it is supposed to … you need to have other muscles in good shape ready to implement plan B or plan C to get you out of a pickle.
It is equally important to exercise your mind. Try to learn something new every day. Take on a challenging project. And I’d encourage you to read. There’s an internet acronym TL;DR which stands for “too long; didn’t read”. When we do read, we tend to scan the headlines and let our mind fill in the details based on our preconceptions. Challenge yourself to try to truly understand the other side of an issue that is contrary to your views. I’m not suggesting you have to change any of your opinions, I’m suggesting you deepen your understanding.
And don’t neglect your creative side! Parkinson’s is all about the neurotransmitter dopamine, and this is where you’ll find it by the bucketload. If all the content that you consume is news and current events, you are not feeding your brain a balanced diet. 2020 has been a horrible year for the creative arts … but one of the great things about the modern Information Age is that there is a treasure trove of content available at our fingertips.
When was the last time you discovered a new favorite song? Hop on Apple Music or Spotify … start with a song that you like … listen to other songs by that artist. Follow the links to related artists. Check to see if the song is a cover, and check out the artist who originally performed it, and even more recent cover versions. Your brain will appreciate this type of effort.
Read a novel, or a series of novels. If you’re already an avid reader, try something different. Read a novel that you’ve already prejudged to be something you wouldn’t enjoy. Read an auto-biography of someone you admire. Read an auto-biography of someone you despise. My daughter had to read Frankenstein for school last month, and I decided to read it along with her. The book actually surprised me, because I thought I already knew the story, but my supposed understanding of the story was based on having watched movies including Mel Brooks’ Young Frankenstein and Abbott & Costello Meet Frankenstein. Apparently those movies took some liberties with the original story.
Deep down, I think I’ve always wanted to be a writer. I have always been able to express my thoughts more clearly in a written form, especially typing into a computer. The backspace key is my friend and ally … the most valuable player on the keyboard … and ellipsis are my crutch … my thoughtful pause.
Which brings us to this current point in time.
In the years following my diagnosis, I’ve written a lot of content about Parkinson’s at my website https://parkinson.fit … I was also writing a weekly newsletter that tried to share interesting Parkinson’s content from around the web. But about 15 months ago, I stopped. Initially, I was recovering from an injury, and I thought I’d just step away for a couple weeks.
I kept telling myself that eventually I would get back to it, as I have a lot of years of dealing with Parkinson’s ahead of me. But, truth be told, there had come a time where I didn’t want to read about Parkinson’s … I didn’t want to write about it … and I didn’t want to talk about it. When the pandemic hit, this was a great excuse to stop going to the exercise classes where I regularly interacted with others who had Parkinson’s.
What happened? What was going through my mind?
There were many thoughts, of course … and ideas too … but I don’t want to be boastful … I’m not trying to brag. When it comes to thoughts and ideas, quality is so much more important than quantity. But what to do with all of these unneeded thoughts and ideas … not to mention the useless information, obscure trivia, and misheard/misunderstood song lyrics? Then it hit me. All thoughts do matter. All ideas do matter. If not to me, they must matter to someone, right? That’s why I am cleaning up the cobwebs in the attic of my mind and transferring a massive dump of cranial activity here to the inter-webs for your perusal and amusement. This will be a self-guided tour … please continue at your leisure … and use the trash cans that are provided and clearly labeled … leave behind only footprints … and an incriminating trail of cookies leaking from your web browser.
In the next installment, we will attempt to simultaneously entertain and enlighten, as we begin an epic tale of an extraordinary Parkinson’s journey … carefully wordcrafted from an artesian wellspring of “playfully pompous prose” ™ … and based on a mostly true story that is interwoven with a tapestry of philosophical meanderings of variable profundity, irrational nonsense, absurdity and the occasional insight that makes you say hmm … presenting “2021: A Parkinson’s Odyssey/Oddity“ …
This oddity of an odyssey is brought to you by the letter P and the number 2 …
and now if you’ll excuse me, I need to see a man about a horse.