A is for Apathy: What I wish I had been told about Parkinson’s disease
My non-consensual relationship with Parkinson’s disease (PD) officially began in June 2016. I was diagnosed by a great doctor who seemed genuinely concerned that he was about to tell me, at 35, that I had an incurable brain disease. He took his time to explain the motor symptoms of PD and I left his office feeling like I understood the changes my body would undergo over time – my tremors would get worse, my muscles more rigid, and my movements slower. Simple. Difficult prognosis, yes; but relatively simple to understand. I honestly wasn’t too bothered, partly because my doctor had also taken the time to discuss the different treatment options, and I felt equipped to handle whatever lay ahead. If only… When I think about it now, I don’t recall him talking about the non-motor symptoms of PD or how drastically they would affect not just me, but everyone around me. Three and a half years into my diagnosis, I am only just beginning to understand how incredibly challenging these non-motor symptoms can get and how ill-prepared I was to deal with them.
The ABCs of PD: A is for Apathy, B is for Brain Fog, C is for Chronic Pain.
Apathy, brain fog, and chronic pain – the trifecta of my most disabling PD symptoms. Give them to me one at a time and I could possibly find a way around them; but all at once? Together, they strive to make a mockery of the “fighter” in me and constantly test the boundaries of my resolve to live my life to its fullest potential. Individually or combined, these symptoms can challenge even the most valiant of warriors.
Apathy, brain fog, and chronic pain only begin to scratch the surface of a long list of PD non-motor symptoms, yet these three symptoms alone are enough to sway the decision-making process of many aspects of my life: they influence my desire and ability to exercise, shower, eat healthy, take my medication, articulate my thoughts, rebut an argument, attend social gatherings, walk my dog, cook, do laundry, write this article, and a host of other things. The seemingly simple act of getting through one’s daily activities requires constantly having to drown out the voices of resistance from these symptoms – Apathy shouts out “Please leave me alone, I’m not interested in doing anything today!”; Brain Fog says “That’s a little complex, don’t you think?”; and Chronic Pain snorts “You might want to think twice before you do that!”. The impact is constant. The impact is iterative. The impact is real… very, very real.
An enemy without a face.
Are people with Parkinson’s well informed about (and adequately prepared for) these invisible symptoms that accompany PD? If not, why aren’t these symptoms getting as much airplay? Is it because non-motor symptoms don’t have a “face”? Is it because we can’t “see” them and, therefore, can’t accurately define or measure them? Are we all ignoring or downplaying their significance because we don’t fully understand them?
My hope is that these rhetorical questions cause all of us who are stakeholders in the PD community (patients, doctors, carers, family members, researchers, etc.) to engage more in open and honest conversations about these non-motor symptoms so that we can all improve our knowledge of how to best deal with them. This is particularly important because these symptoms significantly impact not just the person experiencing them, but practically everyone around them – their spouses, children, extended family, friends, co-workers… everyone. Left unmanaged, the combined effect of PD non-motor symptoms can simultaneously wreak havoc on multiple lives. In my humble opinion, that is a serious topic that deserves a whole lot more attention than it is getting now.
A is for Apathy, B is for Brain Fog, and C is for Chronic Pain. What about D?
Well, D is for Depression… but that is a story for another day.
Omotola Thomas, MSc presented at the 5th World Parkinson Congress in Kyoto. She established ParkinStand, a blog, after being diagnosed with Parkinson's at the age of 35. She uses ParkinStand as a platform to inform, connect with, and encourage anyone affected by or connected to Parkinson’s disease. You can reach out to her via email at omotola.thomas@parkinstand.com or for more information about her or the blog, visit www.parkinstand.com.
Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®