Journey With Parkinson’s: Five Days in March that Changed My Life’s Perspective

“To understand the living present, and the promise of the future, it is necessary to remember the past.” Rachel Carson

“Remembering the past gives power to the present.” Fae Myenne Ng

Introduction (NOTE: the Title should really read 5 days in March/1 day in January; but I liked the symmetry of the 5 dates in March):

•On March 11, 2014, I received my diagnosis of Parkinson’s. Thus, this marks the 10th anniversary of having a disease with a name attached to me for the remainder of my days.

•On January 23, 2015, I participated in a Patient Interview about my personal experience with Parkinson’s disease for MS-2 (the 2nd year medical school class was ~170 students) Brain and Behavior Course with Dr. Cheryl McNeil (course director) and Dr. Daniel Roque (my Neurologist).

•On March 9, 2015 (a year after receiving my diagnosis), the first blog post was published, entitled: “I’m Still Here: Life with Parkinson’s” (click here to read it). Little did I know that I would have published 316 posts during the next nine years). Whatever worth the blog has provided to the readers, it helps steer my daily path through the journey we share with Parkinson’s. So thank you for everything, thank you for reading the blog posts..

•On March 27, 2015, I received the first of two tattoos related to Parkinson’s.

•On March 13, 2020, COVID-19 was declared a national emergency. While the threat of death or severe illness has slowly gone away, the pandemic likely was felt by many of you directly; possibly, you know someone who died due to complications of COVID-19. However, the pandemic altered our landscape and how things are viewed today.

•On March 11, 2024, I was interviewed as part of a Physical Therapy (PT) graduate student’s final comp package [interview, she’s teaching a neuroanatomy laboratory for the beginning PT students, and we are writing a review article on “Exercise for Treating Parkinson’s” (that is all I will say because I’m superstitious about talking about work that is not yet accepted for publication, but stay tuned)].

The Story for Each Day Follows Below.

“Those who cannot remember the past are condemned to repeat it without a sense of ironic futility.” Errol Morris

The Parkinson’s Diagnosis: The diagnosis of Parkinson’s is not made by a blood test, it a judgment call eliminating all other disorders. A Movement Disorder Neurologist is trained to figure this out, but for me (like many of you), my road to diagnosis was anything like a straight path. Lots of physicians, tests, no answer, until a Medicine Fellow (MD, being trained in Internal Medicine) suggested I go see a Movement Disorder Specialist (Neurologist). To get there, I wrote 4 of 5 blogs (I should go back and complete. the story):
•Part 1 described the Barium Swallow test (click here for this post);
•Part 2 gave an overview of Magnetic Resonance Imaging (MRI) (click here for this post);
•Part 3 highlighted Polysomnography, which is a sleep study (click here for this post);
•Part 4 presents Electromyography (EMG), which measures nerve/muscle interactions; (click here for this post)
•Part 5 will describe Transradial Cardiac Catheterization and Angiography (this was a cool and frightening experience).

Part of the Note Given to my Neurologist on the Day I Received the Diagnosis of Parkinson’s (March 11, 2014)

What are the major neurological problems? Right-hand general stiffness, and my right shoulder for well over a year.  I have had a swallowing disorder for about two years now.  And shortness of breath or with exertion or exercise and during this exercise period, I also lose my voice.   After having a cardiac catheterization evaluation, this is not related to my heart.   I also feel like my voice is not nearly as strong as it used to be. I am having a hard time now working 12-hour days.   This stiffness in my right side has affected how I get dressed, where I put my wallet now in my other pocket; writing is more complex, and I’m using my left hand for many different things that I never used to do.   I may also have a slight tremor in my right hand it’s not bad, Cold weather exacerbates it.  I feel like I’m walking differently than I used to do.   Friends have said I’ve slowed down, and I’m much stiffer than I used to be. My arms shake when I push myself up from a lying down position.

What are the major questions? Is this Parkinson’s disease or related syndrome? Or is this related to my spinal neck injury? Or is this totally different? Is this treatable? I’ve been waiting to see somebody since September. What is the time-frame for making progress on this issue? I am tired of feeling this way. Are you going to help?

Reconstruct, as well as you can, the story of your illness. About three years ago, I slipped a disc in my lower back.  About two years ago, I developed a swallowing disorder, which is still being worked out by the GI folks.  On my right side, it’s just started in my fingertips and feels like it’s made to my entire arm. I noticed this dysfunction in my arm about a year or so ago and mentioned it to my internist. After reinjuring my neck from a high school tennis injury, the spine Center asked me to get an EMG. I also had an MRI of my neck and worked with the PT in the spine Center to help straighten my cervical spine, hopefully, help my right shoulder, and improve my posture. From my EMG, I learned I have a lot of old sports-related injuries and that, importantly, I do not have ALS.  The shortness of breath was assessed by Cardiology with a stress test, and then Transradial Cardiac Catheterization and Angiography, which my heart was in great shape. My golf game is being affected; my ability to type on a keyboard is terrible, as is my handwriting.  Of course, the question is whether any of these are related to each other or not.  Right-sided arm stiffness does not cause pain, but it affects everything I need to do daily.  In September, my internist recommended me to Dr. _______. She finally got back in touch with me in early January because she could not see new patients, so I had to start over!

What are the major physiological/neurological problems? (Each point below had a short historical/descriptive paragraph and is not included here.)
•stiffness and slowness
•swallowing/drooling
•voice change
•walking changes
•tremor and weakness
•fumbling
•shortness of breath
•tired

My Neurologist, whom I genuinely admire and like a lot, calmly read my detailed 2-page note, underlining frequently. He did a few physical checks on me, looked at me, and calmly said, “I have good news and bad news. The good news is that I can explain everything that has happened to you. The bad news is that you have Parkinson’s disease.” It was described as an idiopathic, non-tremor-dominant form of Parkinson’s. According to some institutions, it would have been called early-onset Parkinson’s. So began an excellent patient/physician link and relationship.

“Progress, far from consisting in change, depends on retentiveness. Those who cannot remember the past are condemned to repeat it.” George Santayana

Patient Interview with the Neurology Block: A popular part of most medical school courses is the personal “Patient Interview.” I had done them from the co-course director aspect but never directly as a patient. I spent most of the rest of 2014 pretending I was normal, hiding behind a facade that I was healthy. I felt terrible; no, I felt uneasy about the situation. To help me better understand, I visited a Neurologist on one of my teaching committees. She made me feel better. She also said she had known of my Parkinson’s for ~3 years, but due to HIPAA regulations, she just hoped I had good care. Then she said, “Frank, why don’t we present you at Patient Day in Neuro? The students really care about you. That way, it’s done; you’ve publically come out about your diagnosis.”

I talked for 5-8 minutes, telling the class about myself and my Parkinson’s. The students then asked me questions for about 45 minutes. One student asked, “Had I considered writing a book about my experience with Parkinson’s disease?” I said, “I was unprepared to write a book, but I could see myself writing a blog.” So be it.

We were changing the medical school curriculum, so I did the interview again in May 2015 (and six more times until 2020). I wrote a blog post about this interview entitled “A Patient’s Tale” (click here to read it). [NOTE: the pictures were taken at the May, 2015 Interview.]

“Gratitude changes your perspective about life. You see the future, experience the present, and remember the past in a dramatically different way.” Erwin McManus

The Blog “Journey with Parkinson’s”: I could write several thousand words describing how I feel about this blog, but I won’t.

I was trained as a protein biochemist who studied the molecular process of how blood clots for over 35 years. Having Parkinson’s now, I have grown close to the brain and its unique ability to function and process. We are controlled by the brain’s capacity to regulate our actions and everything we do, think, and respond to. The motto for the blog is “Where Life Meets Parkinson’s.” The reason for this blog is a simple commitment to Parkinson’s education, research advances, treatment strategies, and personal reflection. Ultimately, I seek to provide support and resources to anyone, either with Parkinson’s or with any neurodegenerative disorder. Thanks again for sharing your opinions of these blogs with me and others; your support is most appreciated.

Below is the top 10 list of read blog posts historically (03/09/2015-03/15/2024):

1. A Comparison of Parkinson’s to Alzheimer’s (click here)
2. Parkinson’s Awareness Month: Quotes About Parkinson’s (click here)
3. Importance of Magnesium in the Brain and Magnesium Threonate is Neuroprotective in a Mouse Model of Parkinson’s (click here)
4. Meditation, Yoga, and Exercise in Parkinson’s (click here)
5. Dopamine Agonist Withdrawal Syndrome (DAWS) in Parkinson’s (click here)
6. The Mask of Parkinson’s (click here)
7. B Vitamins (Folate, B6, B12) Reduce Homocysteine Levels Produced by Carbidopa/Levodopa Therapy (click here)
8. Science Sunday: Ashwagandha and Parkinson’s (click here)
9. 9 Things to Know About Exercise-induced Neuroplasticity in Human Parkinson’s (click here)
10. The Yack on NAC (N-Acetyl-Cysteine) and Parkinson’s (click here)

“The way you remember the past depends upon your hope for the future.” Story Musgrave

The First Tattoo About Parkinson’s: Although for a while, as mentioned above, I kept private about my diagnosis. I did talk to my lab group about my Parkinson’s. During these conversations, we decided I would get a tattoo to commemorate the 1st anniversary. And, of course, since we were science nerds, it had to be a chemical structure of dopamine. And Savannah, from my lab group, accompanied me because she said no one should go alone to get a tattoo; you need support (and then get a beer afterward to celebrate).

“Live in the present, remember the past, and fear not the future, for it doesn’t exist and never shall. There is only now.” Christopher Paolini

The COVID-19 Pandemic: I remember it clearly. We were on vacation at Hilton Head Island (Spring break), and the Federal announcement was made; we were given an extra week to adapt our courses from in-person to online. I accepted the challenge, and the students were pleased with the transition. We got it all done, but it took a while to make these changes.

In reading about the virus and its mode, I felt strongly that anyone with Parkinson’s should be considered at high risk for infection, partly due to the change in lung function through the autonomic nervous system. Early on, additionally, the virus seemed very neurotropic by action; patients losing the sense of smell and the loss of cognitive issues made me wonder about the similarities of symptoms shared by viral infection and Parkinson’s. All I could do was try very hard not to get infected and get a vaccination as soon as it was available.

I had entered the phased-retirement phase of my career, and Scholarship for Parkinson’s was a big part of my changed life. At this time, the relationship between Parkinson’s and COVID-19, if any, was not known. Since 2020 (I retired on June 30, 2022), I have had the privilege of publishing 12 peer-reviewed papers (seven related to Parkinson’s, four related to medical education, and one strategy to manage a laboratory research group). Five of these papers mentioned or were focused on COVID-19, including:

1.     Hribar, C.A., P.H. Cobbold, and F.C. Church. Potential Role of Vitamin D in the Elderly to Resist COVID-19 and to Slow Progression of Parkinson’s Disease. Brain Sciences 10.5 (2020): 284. https://www.mdpi.com/2076-3425/10/5/284

2.     Hall, M.-F.E., and F.C. Church. Exercise for Older Adults Improves the Quality of Life in Parkinson’s Disease and Potentially Enhances the Immune Response to COVID-19. Brain 0Sciences 10.9 (2020): 612.  https://www.mdpi.com/2076-3425/10/9/612

3.     McGreevy, K.M., and F.C. Church. Active Learning: Subtypes, Intra-Exam Comparison, and Student Survey in an Undergraduate Biology Course. Education Sciences 10.7 (2020): 185.  https://www.mdpi.com/2227-7102/10/7/185

4.     Church, F.C., S.T. Cooper, Y.M. Fortenberry, L.N. Glasscock, and R. Hite.  Useful Teaching Strategies in STEMM (Science, Technology, Engineering, Mathematics, and Medicine) Education During the COVID-19 Pandemic.  Education Sciences (2021), 11, no. 11: 752. https://doi.org/10.3390/educsci11110752

5.     Morowitz, J.M., K.B. Pogson, D.A. Roque, and F.C. Church.  Role of SARS-CoV-2 in Modifying Neurodegenerative Processes in Parkinson’s Disease: A Narrative Review. Brain Sciences (2022): 12(5), 536; https://doi.org/10.3390/brainsci12050536

“You have many years to live do things you will be proud to remember when you’re old.” John Brunner

The Physical Therapy Interview: Alex was an undergraduate when she enrolled in my Biology of Blood Diseases course. A few years later, she is in the Physical Therapy program at UNC-Chapel Hill. As most PwP know, we rely on physical therapists often during our time with Parkinson’s. So, I was thrilled when she approached me about doing an interview. She had nine questions; here are three examples:

•”As a physical therapy student and one of your former students, I’m curious to know a little bit about your experience with the disease. What’s the specific type of PD? Which symptoms impact you the most? What treatments and therapies have been helpful?”

•”In what ways do you think your firsthand experience with Parkinson’s enhances your understanding of the disease compared to researchers without personal experience?“

•”This interview of course is mainly to target Physical Therapy (PT) students who will have opportunities to work with Persons with Parkinsons. What advice would you give them, especially if they don’t have personal experience with the condition?“

The interview lasted over an hour because I just kept talking and talking. But I enjoy the interaction with others when we are talking about Parkinson’s and its effect on the mind and body. We were worried we wouldn’t get it to 30 mins; however, now Alex has to edit it to a more manageable size (e.g., 30-40 mins). Hopefully, the information shared with the PT students will allow them to understand that each PwP is different from another, regardless of gender, age, and time with Parkinson’s. The keys are:

• Your resistance.
• Staying positive.
• Your ability to adapt and manage life.
• Changes made by exercise to try to halt progression.

My hope is that Alex will commit a part of her PT career to help PwP and also stay in the academic world regarding PT because she is more than just intelligent; she’s got a spark that just says teacher/mentor/professor.

“Happy is the person who cherishes the precious lessons of the past and lives vigorously in the present.” Jerome Hines

Remembering these Six Days in my World: Not every day of life is memorable, but every day lived is a breath waiting to be exhaled, a thought wanting to be released, and a decision needing to be reached. These days were important and life-changing; they required some thought to process what each day represented—these days revealed themselves as hope, cloaked in reality and an unknown future. The experiences taught me perseverance and the positivity of others who offer their support, wisdom, and assistance. I thank you all. Stay healthy, informed/educated, and live with purpose.

“The past cannot remember the past. The future can’t generate the future. The cutting edge of the instant right here and now is always nothing less than the totality of everything there is.” Robert M. Pirsig

Cover Photo Image by Leonardo Thomas from Pixabay