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Now, my third installment in my “Reluctant Ascetic” series . . .
Here’s the thing about my version of Parkinson’s Disease – no physician can tell me when, where, or why I came down with it. At first, I thought it was inherited since my oldest brother was diagnosed with it and I suspect that my father and grandfather suffered from it. However, I have none of the known DNA markers that are associated with Parkinson’s. I suppose that exposure to farming pesticides along with a latent genetic predisposition could have triggered it in my family, but I suspect that generational stress is involved.
Studies show increased stress can trigger Parkinson’s. A 2016 study into how epigenetics contributes to stress suggests the experience of enduring chronic stress can be passed down genetically (aka trans-generational stress inheritance) to successive generations. The inherited genes create a resilience or susceptibility to the effects of stress in future generations based upon how our ancestors dealt with their own chronic stress. These studies are speculative at this point, but I can attest that sustained stress makes Parkinson’s worse. Whether it is my own stress or the accumulation of ancestral stress waits to be seen.
My symptoms manifested themselves a couple of years before I was diagnosed. What I thought were middle-aged aches and pains was Old Man Parkinson’s gouging me in the back. It wasn’t until he latched onto my left arm that I went to see my primary care doctor who didn’t know, who referred me to a neurologist who wasn’t sure, who referred me to a movement disorder specialist who told me that he had good news – I didn’t have ALS. I was not aware that ALS was even in the discussion. No one had even mentioned Parkinson’s. Maybe that was his way of delivering bad news. By making it seem not as bad as if I had some other disease. So much was happening in my life at the time of my diagnosis that when I consider the news independent of those other stressful events, I should have been more upset.
The movement disorder specialist told me that I had Young-Onset Parkinson’s Disease. YOPD for short – a lifetime Y membership without a pool or a steam room. To join this rare club, a person must be diagnosed between the ages of 21 and 40 which puts me at the very edge of membership. Very much like my membership in Generation X. I came of age during the 1980’s in contrast to my three much older siblings who were 1960’s Baby Boomers. Who, incidentally, are now the same group of Parkinson’s patients that I encounter whenever I venture into a support group. Which, in true Gen X reaction, I refuse to join. Generation X. Portrayed as a group of slackers in the media, we are tailor-made for an apathy-inducing disease such as Parkinson’s.
Generally, those of us with YOPD have milder symptoms but slightly shorter life expectancies when compared to someone diagnosed later in life. We eventually all have similar symptoms, but as I just mentioned to the excellent Nick Comer-Calder, Parkinson’s requires some of us to be sprinters and others to run a marathon. Many thanks to Nick for asking that question and for his skill in presenting the harsh reality of Parkinson’s with humor.
Another thing about Parkinson’s is perception. Most people think of old shaky people who shuffle along pushing their walkers hoping that they don’t lose a tennis ball. (I played tennis and I kept a can of tennis balls in reserve should I need them for future walker repair.) In kinder words, most people only see the loss of motor control caused by Parkinson’s. Non-motor symptoms such as apathy are not noticed or misinterpreted.
Apathy as it relates to Parkinson’s was defined in this 2022 study as follows: “Characterized by a loss of motivation, decreased activity, reduced enthusiasm, decreased interest, initiative, emotional indifference, and a lack of concern, apathy results in anhedonia (i.e., loss of pleasure).” The study went on to say that apathy was prevalent in 32% of those patients with mild Parkinson’s. The study further suggests that apathy increases as the disease progresses. No wonder almost half of Parkinson’s patients have bouts of depression. Apathy should not be confused with depression even though both can happen simultaneously in Parkinson’s.
How do I reverse apathy? How can I increase motivation, activity, enthusiasm, interest, initiative, and reconnect emotionally, etc. with the ever-depleting amount of dopamine that my brain produces? I can forestall and minimize how apathy impacts my life to a point through diet, exercise, drugs, surgery, and support groups, but ultimately, I cannot change the causes of apathy.
Can I transform apathy into something positive, like an alchemist turning lead into gold? Something that resembles apathy but might be kinder to interact with? Let’s delve back into the ancient Greek concept of apatheia.
Apatheia was defined by the Stoics as the removal of emotion from our reaction to events beyond our control. They believed that this disconnection leads us to wisdom. We are to focus on what is within our control and let go of those things that we cannot control. Those Stoics knew how to state the obvious or had been to an AA meeting. But I agree that it is wise to stop wanting to do something that I am now physically unable to do – like ride my old BSA motorcycle or hike the Big Dismal trail in the nearby national park.
Expanding on the Stoic understanding, the early Christian monastics defined apatheia as a state of equanimity undisturbed by passion that leads us to a pure heart. Outwardly, they followed a prayerfully ascetic lifestyle of solitude, manual labor, frugal diet, and limited sleep. Inwardly, they practiced humility, patience, and being non-judgmental. Excluding manual labor, those of us with Parkinson’s have the outward characteristics down flat. The inward ones are a little harder to control.
Let’s consider humility. I recently watched the new Michael J. Fox documentary Still. While discussing his initial Parkinson’s diagnosis, Fox talked about hiding his symptoms from those outside of his family until his tremors became obvious. He admitted that his stress levels dropped after he made his diagnosis public. I confess to having done the same thing but with a twist. I admitted early on to having Parkinson’s but out of pride, did everything possible to hide the symptoms. Even from my neurologist. Pride robbed from me several years of empathy from colleagues, friends and family. How stupid. How much unnecessary stress I put on myself.
Then there is patience – something that I had little of to begin with, especially with myself. Or being non-judgmental – an internal restraint that is sorely lacking everywhere. I hope that these three mental practices will eventually modify my expectations for the better. At first glance, this all reads like “mindfulness” or some other hippy new age practice (showing my old age with those labels) which proves that even now I am being judgmental.
I can affirm that controlling what I can and letting go of what I cannot has caused my stress level to drop dramatically over the last couple of years. During that time, I contemplated the reality of who I am with Parkinson’s – not who I was or wanted to be without Parkinson’s. As a result, I am in better mental and physical shape than I was two years ago. Just simplifying my responsibilities and expectations revealed how badly stress was hurting my health and returned me to my true Parkinson’s baseline.