Journey with Parkinson’s: Let Me Live, Let Me Live Again

“Let me live my life the way I want to.” Jimi Hendrix

“Just let me live my life.” Sergei Polunin

A Belated Anniversary: On March 9, 2025, we celebrated the 10th year of the “Journey With Parkinson’s” blog. Since that opening blog post entitled I’m Still Here: Life with Parkinson’s,” 350 additional blog posts have been published. The blog began as an afterthought from a class meeting with a medical school class. During the first year of my diagnosis, I was keeping it private until I confided with a medical school colleague who was a Neurologist. I took away three things from our conversation. First, she convinced me to come out and start living again. Second, she told me our medical students cared about me, and I would be an ideal patient to present to the class of 180 medical students in their upcoming Neurology block. And three, she had known of my Parkinson’s for about 2-3 years from observing me in medical school committee meetings (HIPAA regulations prevented her from talking to me about it; she only hoped that I was getting good care).

During that first visit with the entire medical school class, I was asked during our 50-min Q&A session, was I planning on writing a book about my experience with Parkinson’s . My initial answer was that I probably did not have enough free-time in my world to write a book about Parkinson’s, but I would consider writing a blog about my experiences, including the science of Parkinson’s. I was thinking, how hard, and how long would it take to write a single blog post? Little did I know, the book would probably have taken less time to complete. But I have no regrets in writing the blog, none at all.

“What is courage? Let me tell you what I think it is. An indefinable quality that makes a man put out that extra something, when it seems there is nothing else to give. I dare you to be better than you are. I dare you to be a thoroughbred.” Herb Brooks

The Effort of Writing: My writing gets done following several routes. First, the planned topic is where I read about an idea, then I describe the topic by writing an outline, and the blog post gets written over time. The majority of the blog posts delivered here have gone this route.

Second, there is the spontaneous expression of a thought. The idea will come into my mind. I will immediately sit at my computer and write. Some of my favorite blog posts were composed in this start-to-finish narrative manner.

Third, I will discover something I have written before (whether it is just an idea or some form of writing), and then compose the blog post after that discovery. The current blog post was composed using this third method. My computer tells me that “Let Me Live, Let Me Live Again” was originally composed and saved in my Notes folder at 12:57 AM on April 4, 2024. The writing for the blog post here began at about 2:00 AM on May 19, 2025. I usually make changes and do a final read-through of the post the next day or so. I had spent the evening doing a bunch of pre-operation material, and I was not able to sleep well thinking about my upcoming surgery.

“Lord, let me live until I die.” Will Rogers

Let Me Live, Let Me Live Again:
As with anyone with Parkinson’s, it has changed me.

At least for me, in some ways, for the better.

I am both self-aware and cognizant of others and their problems.

My empathy has improved because of my Parkinson’s. 

As with anyone with Parkinson’s, my outlook on humanity has been altered.

My frailties are now apparent and on display.

I constantly feel within me a wicked presence known as Parkinson’s.

But I have much left to do in this life.

Let me live.

I have lived for many years.
 At times, life has been challenging.

There were some times of indecision mixed with some days of doubt.

The results were not always perfect, but they were not without effort.

But there was always still much to accomplish in these bones and body of mine.

Let me live.

My professional academic career spanned 40 years, encompassing a single university, medical school, and town.
I have given hundreds of lectures to undergraduate, graduate, and medical students. The collective life forces of the students gave me energy and a reason to keep learning.
I have also submitted numerous research proposals, and over the years, the National Institutes of Health (NIH), American Heart Association, and Komen for the Cure (of Breast Cancer), as well as other research agencies, have funded some of them.
Let me live.

The lab group personnel over the decades of research gave me a spark to keep going when science seemed to struggle.
Their contributions to our science was always more than a name on a desk; it ranged from having “great skill” at the laboratory bench, to having sharp intellect, to a professor commenting about the high-quality writing from a student’s thesis, to “owning their science” after reading my ideas about a project and telling me, “I now understand what you were proposing and this is where I see my story going.”
The lab group generated data that led to published papers and funded grants.
They contributed to our scientific advances in hemostasis and thrombosis, cancer pathobiology, and, briefly, before my retirement, Parkinson’s disease.
I have much left to do, now that my lecturing and science research days are behind me.
Let me live.

Charley Pride had a hit blues song in 1971, entitled ”Let Me Live.”
The last verse goes like this:
“Let me live again, let me live again
Reach into my heart and light the light of love again
Let me see the sun let this darkness end
Take me back into your arms and let me live again.”

I have been retired for several years; it is time to renew my determination to keep going. Now is not the time to give in to that beast housed in my mid-brain named Parkinson’s.
Let me live again.

Having dedicated many years to my academic career, I am now ready to channel my focus with renewed strength.
The new goals will continue studying Parkinson’s.
The next focus can be service-oriented, by helping others live with the disorder.
I will continue to strive for further understanding of Parkinson’s. 
Hopefully, accomplishing these aims will help us and others better navigate the complexities of Parkinson’s.
As one path ends in the forest, a new path emerges, branches out, and leads upward to the sun.
My mind is ready to soar.
Let me live again.

I am wiser than I was before.
The light of new goals can guide me.
This journey is simply taking a different path.
I am prepared to explore new horizons and continue my journey through life.
My mind is still functioning, which is crucial for me to continue.
Let me live again.

“Let me live, love and say it well in good sentences.” Sylvia Plath

Thank you: Thank you for your support these past ten years. It has been an honor and a pleasure to write these blog posts. I am looking forward to the next ten years. However, my hip surgery is scheduled for next week, and I am unsure of how my rehabilitation with the new hip will perform for me in the first two weeks. So, I am taking a few weeks off from writing about Parkinson’s, but not from thinking about Parkinson’s. Stay healthy y’all!

“Let me live in my house by the side of the road, Where the race of men go by; They are good, they are bad; they are weak, they are strong, Wise, foolish,–so am I; Then why should I sit in the scorner’s seat, Or hurl the cynic’s ban? Let me live in my house by the side of the road, And be a friend to man.” Sam Walter Foss

Cover photo credit to Frank C. Church from our recent trip to Bermuda (shown is part of Horseshoe Bay).