The Dopamine Chronicles No. 3 – Flipping the Spread, or: Parkinson’s For Beginners

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The well-intended subterfuge worked for about five years before the condition forced my hand, as it were. Those who saw me on a regular basis began to notice symptoms that were not so subtle anymore, and were kind enough to gently inquire. Again I deflected, feigning ignorance.

Privately, I had been researching neurological conditions for over a year. I didn’t fail to notice that the Michael J. Fox I saw in televised interviews discussing his battle with Parkinson’s Disease looked disconcertingly like the Michael J. Haley I saw when I looked in the mirror each day. By this time, I was convinced that if my doctor told me it was something other than Parkinson’s, she’d be wrong. So, I finally submitted myself for medical evaluation in the summer of 2003 and, after the diagnosis of Parkinson’s confirmed my worst suspicions, I finally came clean with my family, close friends, and professional associates. I was a month shy of my 43rd birthday.

What is Parkinson’s disease?

Parkinson’s disease is a long-term degenerative disorder of the central nervous system that affects the motor system. The symptoms of the disease result from the death of cells in the substantia nigra, the region of the brain that produces dopamine. Dopamine functions as a neurotransmitter, carrying messages from our brains throughout our nervous system, enabling the control of motor functions.

Common symptoms:

Parkinson’s is commonly characterized by uncontrollable shaking and tremors on one end of the spectrum, freezing and the loss of speech and dexterity on the other end. All physical activity is impacted. For example, when I am at my worst, my feet feel like they are planted in cement when I attempt to walk. Minor tasks like tying shoes, buttoning a shirt, handling a wallet are accomplished only after an exhausting effort.

The action I take:

I take levodopa – the enzyme my body no longer makes on its own – four times per day.

What happens in my body:

Levodopa is converted to dopamine via the action of a naturally occurring enzyme called DOPA decarboxylase. This occurs both in the peripheral circulation and in the central nervous system after levodopa has crossed the blood-brain barrier. When this barrier is crossed, the resulting dopamine surges through my central nervous system, unlocking blocked pathways and delivering the brain’s messages. When this chemical process works as designed, it is a glorious, liberating feeling. On my worst/best days, I can transform from depressed and immobile to skipping in elation within a span of 20 seconds. Witnesses to this transformation will look on in astonishment. It’s a beautiful thing when this happens – even though I know the liberty is fleeting (a few hours at best).

The PD Community:

I am so thankful that I was born in the very year that the treatment for Parkinson’s was finally developed to a point that medication was readily available to me when I was diagnosed a dozen years ago. I’m so appreciative of the scientific method and the work of hundreds of researchers the world over. I’m a lucky guy; if I had walked the earth just 20 years earlier I’d be struggling to take each step without the medications that are available to my generation. I am also fortunate that I happen to live in close proximity to the Parkinson’s Institute in Sunnyvale, California, where their teams of scientists are hard at work searching for a cure, as well as a better understanding of the underlying causes of the disease. I participate in every clinical trial I can qualify for in an effort to help them build a larger body of knowledge.

What I have learned:

I’m beginning to realize that living with Parkinson’s must be a little like managing a Major League Baseball team. It’s a long season. Even the best teams are going to have the occasional losing streak. One of the keys to success is to recognize you’re going to have great days when all your moves work to perfection, and, conversely, days when nothing works at all and you get your butt handed to you. The trick is to remain even-keeled mentally and emotionally through both ends of the spectrum of success. Sure, there are going to be days when I’m tempted to flip the post-game spread in frustration, but taking a steady, measured, patient, long view of the season is the most sensible, winning strategy.

Michael Jewel Haley
Michael Jewel Haley is a Bay Area artist, photographer and writer.  He grew up in Redding, and developed his love of movies during Saturday matinees at the Cascade Theater. See samples of his artwork here.
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9 Responses

  1. Avatar Beverly Stafford says:

    I donate to the Focused Ultrasound Foundation. Their trials with all sorts of diseases and syndromes are very encouraging including familial tremor and Parkinson’s, some cancers and tumors, and even uterine fibroids. John Grisham has written a short book titled “Tumor” which is where I first learned about Focused Ultrasound. I regret that I didn’t know about Focused Ultrasound when my Mother contracted/developed Parkinson’s. I would have taken her to Stanford Hospital which is one of the hospitals that has the equipment. Just recently, the procedure has been OKed by Medicare.

    • Michael Jewel Haley Michael Jewel Haley says:

      Hi Beverly. I’m not familiar with the Focus Ultrasound Foundation, but I have been seen many times at the motion disorders clinic at Stanford Hospital. Helen Bronte Stewart has been running the programs there for years.

  2. Avatar Darcie Gore says:

    Michael thank you for sharing your story. Your description of your feet sometimes being ‘planted’ reminds me of a team I met when taking my former service dog through public access training. The team was a man with Parkinson’s and his Great Dane. When he froze the dog would use his body to cue the man’s leg by pushing on the back of the man’s ankle with his head to get the man walking again. The Dane would stand slightly in front of the man to help him get up from sitting position or steady him to sit down. Of course there were a dozen other things the dog could do that most service dogs do,alert to falls, open doors, retrieve dropped items, etc. They were a remarkable team!

    • Avatar Beverly Stafford says:

      Inspiring, Darcie. Thank you.

    • Michael Jewel Haley Michael Jewel Haley says:

      Hi Darcie. Thank you for sharing your story. It’s very interesting how Parkinson’s patients experience symptoms – and receive corresponding treatments – that vary widely on the spectrum. For example, the service dog assistance you described is exact opposite of what works for me when I experience the freezing or imbalance symptoms. What I need in those moments is space – and lots of it! That allows me to resynchronize my internal gears, as it were, to get my legs and arms in motion again. I share my experiences with other PD patients in Physical Therapy classes. We learn coping skills (on many levels) from each other.

  3. Adrienne Jacoby Adrienne Jacoby says:

    Thank you for sharing some very personal insight into your life. You shed a lot of light into a disease of which many know but have little understand. A rare glimpse into the daily struggle and how it really feels from the inside out.
    About your art. My favorite is “A Beautiful Rack”, and I suspect the pun is intended. But I look at”Western Lodge” and I’m right back in the summer in the Indio of my youth in the 1940’s.

    • Steven Towers Steven Towers says:

      The one that made me laugh was an array of colorful circles called “Lawrence Welk on Acid.” The bubble-machine show opener through the eyes of a tripping hippie. “Ah one, an’ ah blue….hey look, man! ::grabbing at air::: I can catch my hand!”

  4. Thank you, Michael, for sharing your story and educating and enlightening us about your personal journey with PD.
    (p.s. since AJ started it, my favorite piece of your encaustic artwork remains “Walk on the Ocean”. Beautiful.)

  5. Avatar Jamie Hannigan says:

    Thank you Michael. And thank you for being part of the trials.

    My favorite piece: Fracture.