Updated: May 8
For the past several months, I have struggled to find the energy and motivation to write/upload a new blog post. At various points, I strongly considered shutting down the whole site because I wasn’t producing new content. Then about three weeks ago, something reignited within me after I read the Ending Parkinson's Disease book by Dr. Michael Okun, Prof. Todd Sherer, Dr. Ray Dorsey, and Prof. Bas Bloem. The book compelled me to embark on a soul-searching exercise, which inspired the thoughts expressed below.
Slide, thud! Slide, thud!
The left one does the sliding while the right does the thudding.
Like a well-rehearsed dance move, they keep this rhythm going all day long. At first, it was quite annoying, but now that I'm used to it, I find it... still really quite annoying, actually. For the life of me, I can't seem to walk without dragging my left foot or thumping my right.
What the hell is wrong with me?
I remember the first time I asked myself this question, it was about ten years ago when I noticed my fingers twitching. I asked it again a few years later when I lost my sense of smell and my ability to write legibly. Many of you probably already know this, but Parkinson's disease (PD) is the "hell that was wrong with me". To those who may not know, PD is a nasty neurological condition that has a propensity for wreaking havoc and destroying lives. I should know, I have lived with the beast for at least four years (more, if you count the years before I was diagnosed).
I know how disabling chronic pain can be, how heavy the hand of apathy can feel, and how crippling anxiety can get. I have danced with depression and, thankfully, I lived to regret it. I know the difficulties surrounding seemingly simple daily tasks like taking a shower and getting dressed; the cognitive complexities associated with articulating oneself and remembering things; the frustrations that accompany insomnia; and, the affliction that is dystonia.
There is more: I know that as challenging as my symptoms feel today, they are like child's play compared to advanced-stage PD symptoms. I also know that it has been over 200 years since PD was discovered, and there is still no cure; and, I know that many more people are projected to be diagnosed with this disease because it is now the fastest growing neurological condition in the world. I know all of this. I live all of this. Yet, inexplicably, I have settled for a relatively placid approach towards my PD diagnosis and prognosis. I know the important role nutrition plays, however, in the four years since I was diagnosed, I have not made any serious sustainable changes to my diet. I maintain a love/hate, on/off relationship with exercise even though it has been shown to slow down the progression of the disease. Who afforded me the luxury of choice in this matter? Don’t I owe it to myself and my family to give me my body the best shot at wellness, as it fights within the confines of this enforced parasitic relationship?
Sadly, countless others will come after me who also have to fight this battle, but is there anything that can be done to reduce these numbers? The Ending Parkinson's Disease book highlights the links between environmental risk factors for PD (air pollution, the use of pesticides, industrialization, etc.) and the role they continue to play in the rising incidence of PD. As I sit here today, I cannot help but wonder who is going to be a voice for the next generation? Who is going to stand up for them and take the necessary steps to ensure that they no longer have to be exposed to these risk factors? Who is going to say "Not on my watch!"?
My mind continues to soul-search, and I am confronted... no, plagued with more unanswered questions. With all that I know:
Where is my voice? My placard? My courage?
Where is my curiosity? My quest for answers? My contribution towards advancing knowledge of this disease?
Where is my fight? My battle cry? My yearning for freedom?
Where is my anger? My disdain for the hostile invasion of my body? My exasperation with the limitations imposed on me?
What am I waiting for before I act? Who am I waiting for?
What the hell is wrong with me?!
Thank you for taking the time to read this post. If you haven't read the Ending Parkinson's Disease book, I highly recommend doing so. Aside from the knowledge and inspiration you stand to gain, all the proceeds from the book are going to PD charities to fund efforts to end the disease, and I think this is very important to note. Please leave a review of the book on Amazon as this really helps increase its visibility on the platform.
Three things I liked about the book:
1. It provided an easy-to-understand historical context of Parkinson's disease.
2. It highlighted actionable steps towards ending Parkinson's, some of which can be started immediately.
3. It emboldened and empowered me by illuminating the power we (patients and advocates) possess, and the dramatic changes that power can bring about.
I am not done soul-searching, but I am already committed to making adjustments to my lifestyle to optimize my health and wellbeing. I also know that I want to make a contribution (and an impact) towards “ending PD” and I have identified some steps (listed in the book) that I will start taking now. Click here for additional information and helpful resources.
What about you? Have you read the book and did you sign the PACT? Would love to hear your thoughts on it.