The Uncertainty of Parkinson’s

“In these matters the only certainty is that nothing is certain.” Pliny the Elder

“Knowledge is an unending adventure at the edge of uncertainty.” Jacob Bronowski

Précis: There are many motor and non-symptoms in Parkinson’s, which gives us our own individual expression pattern of this chronic neurodegenerative disease. A common thread we share is linked to the eventual and slow progression of this disorder. Described here following a difficult day of exercise (golf) is the presentation of a 5-component daily care (wellness) plan.

“For my part I know nothing with any certainty, but the sight of the stars makes me dream.” Vincent Van Gogh

The Body’s Response to Injury-Infection-Disease: When a wasp stings you, within a second, you feel the immediate, intense pain of the stinger and toxin. If you are allergic to shell-fish, and you inadvertently eat some of it, the immune response (anaphylaxis) is quite sudden and profound. Let’s say you and your family are on a cruise ship holiday, and somehow you are exposed to a debilitating virus (norovirus). Within 6-12 hours, you have an acute gastrointestinal illness as your body responds to the viral attack. These three examples of disease reflect an immediate response/reaction to a foreign substance or the body’s reply to an insult.

Alternatively, you receive a diagnosis described from your symptoms consistent with Parkinson’s. Your response to disease progression will follow a timeline of years-decades. This seemingly indefinite time-frame for Parkinson’s progress is like having a slow-burning fuse of unimaginable length attached to dynamite, which is locked in a safe without a combination. There’s nothing you can do but keep living and keep going; ultimately, fighting the battle of your life against this insidious disorder named Parkinson’s.

“Maturity is the capacity to endure uncertainty.” John Huston Finley

Painting a Picture of Parkinson’s Disease: Each one of us with Parkinson’s is uniquely different from the other person. By that, I mean we express various motor and non-motor related symptoms, the severity of the symptoms varies from person to person, and we exhibit different rates of progression. The commonality for us with Parkinson’s is the reality that we will have some disease progress at some point in our lives.

“There is no such uncertainty as a sure thing.” Robert Burns

An Uncomfortable Thought About Parkinson’s Progression: As described here on several occasions, I genuinely love the game of golf. As Craig Davies and Vince DeSaia write in Golf Anatomy, “The golf swing is one of the most complex movements in all of sport. Almost every joint and muscle in the body is utilized in some capacity during the golf swing.” I enjoy playing golf, but I also really like practicing and hitting golf balls on the driving range. If possible, I try to go daily and hit 100 golf balls/session. I have a theory about the effectiveness and utility of hitting golf balls and our quality-of-life with Parkinson’s; however, this is best discussed elsewhere.

This past weekend, I had one of the worst rounds of golf ever in recent memory. Many aspects of my golf swing were just not working, including poor coordination; stiffness; loss of power; and finally, my mind was unfocused.

Leaving the golf course, after that awful round of golf, I focused solely on the notion of Parkinson’s progression. What was the probability that the way I played golf today was simply a step-up on the ladder of development of my Parkinson’s? Could the slow and always present disorder, inevitably set to proceed, actually jump-forward in trajectory? I imagined the quiet, but steady progression of Parkinson’s somehow quickened its sinister non-penitent pace.

“We demand rigidly defined areas of doubt and uncertainty!” Douglas Adams

The Reality of Living with Parkinson’s Using a Daily Wellness Plan: How one leads their life and deals with the ever-present symptoms of Parkinson’s demands a thorough daily wellness plan. There are already many different lifestyle features that others have used in the past to describe the best-possible wellness plan (in the absence of Parkinson’s). For example, Kenneth H. Cooper says, “There are six components of wellness: proper weight and diet, proper exercise, breaking the smoking habit, control of alcohol, stress management and periodic exams.”  

I wanted a wellness plan that is focused and easy to comprehend. And I wanted to believe that this wellness plan could improve the quality of my life with Parkinson’s. The ultimate end-result would be to have a wellness plan to help slow the progression of my Parkinson’s (with absolutely no proof) . Thus, I distilled my daily list down to 5 critical components, my so-called “Pentad of Parkinson’s Daily Care.”

Exercise and stretching lead the list of elements. There is substantial evidence that strenuous aerobic exercise is neuroprotective. Doing exercise as a part of your daily life should be an essential start of anyone’s wellness plan. NOTE: Check-in with your Neurologist before starting any exercise program.

Sleep (quantity and quality) adds a critical positive element to brain and body health. Unfortunately, many People-with-Parkinson’s (PwP) encounter sleep problems (due to their disorder and therapy). Optimize your sleeping habits/conditions to achieve a better and more extended period of sleep will be of significant benefit to PwP.

•Nutrition and staying well-hydrated are critical components to anyone’s wellness plan, with or without Parkinson’s. You wouldn’t go on a long hike without the appropriate foods and sufficient water/water-based beverages. Likewise, your brain and body need substantial nutrients and adequate hydration to remain fit.

Managing stress may be the hardest wellness component to handle. Stress is detrimental to everyone’s wellness. Stress induces cortisol production, which I am convinced consumes dopamine, leaving the PwP weary and struggling. Managing the triggers that cause stress will make a big difference in your wellness. However, saying it and actually achieving it may be a most challenging task.

Daily medication(s) taken on-time and making sure it is the correct dose are both critical for PwP. I have spent a lot of time (with my Neurologist) optimizing a treatment plan. And I have come to realize that optimizing the amounts and timing of when they are taken really matters. And I also believe in the ability of Complementary and Alternative Medicines (CAM) to positively contribute to quality-of-life for PwP.

Shown below is a diagram depicting this wellness plan with quotes to bolster the description of the five components:

“As far as the laws of mathematics refer to reality, they are not certain, and as far as they are certain, they do not refer to reality.” Albert Einstein

Lessons Learned Through Golf and the Daily Wellness Plan: Since my debacle on the golf course, I’ve played well twice. This disproved my notion of rapid progression of my symptoms, although it did reinforce the usefulness of my daily care plan. Several components of my wellness plan were not well-achieved before my bad-golf day. These included not stretching well beforehand; an abysmal night of sleep; did not stay hydrated; and some stress worked-its-way-in too. Adhering to my simple wellness plan makes a positive difference in my daily living.

“I think it’s much more interesting to live not knowing than to have answers which might be wrong. I have approximate answers, and possible beliefs, and different degrees of uncertainty about different things, but I am not absolutely sure of anything. There are many things I don’t know anything about, such as whether it means anything to ask “Why are we here?” I might think about it a little bit, and if I can’t figure it out then I go on to something else. But I don’t have to know an answer. I don’t feel frightened by not knowing things, by being lost in the mysterious universe without having any purpose – which is the way it really is, as far as I can tell.” Richard P. Feynman

Cover photo credit:

10 Replies to “The Uncertainty of Parkinson’s”

  1. Hi Frank,

    This is a very useful post; a seemingly modest examination of a seemingly ordinary sample of your life, along with the inner narrative.

    Completely recognisable and helpful and companionable.

    I am in New Hampshire (visiting from our home in Australia) at the moment. I will be thinking about you and your golf game when I run the local rail trail in the morning.

    Stay well,

    Barry Deane


  2. Great to  see you’re a golfer. Dr Cooper (depsite his Scottish heritage) thinks golf spoils a good walk. Indeed, most of the time, it’s difficult to walk, especially with PD and particularly in the American summer.

    My Dad gave up driving upon his diagnosis. Hence he couldn’t drive to a course or range.I did check his swing and it seemed the same…. Luckily, his PD seemed to be tremor dominant without the losses of gait/balance etc.

    I’ve run across some groups that “modify” the rules. You’re not headed for the PGA! There was no bunker play. Not because of the sand play with the ball but the difficulty of getting out of the bunker.

    Some lakes that exceed e.g. 200 yards are impossible to drive over, especially from the back tee. The Ladies tee can become the Senior tee – or the save my golf ball budget tee. They have some that float but fishing can be hazardous, as well.

    My Dad used to have a little ruse as his eyesight deteriorated. He would place his foot behind the ball and lean down to check the marks – thereby providing an elevated position for the ball from which to be hit.

    Not the PGA – play for enjoyment.


    1. David I’m just seeing your post from August. Yes I do love golf, it’s an incredible game. In fact I walked 18 holes yesterday while playing golf, that felt goodPlay do you like some of the rules you’ve modified, my golf buddies would not put up with that, at least not yet! Thank you for your continued interest in the blog, I hope you’re doing well?! Frank


  3. Good morning Frank,
    I am a registered nurse and a student FNP. I was researching Parkinson’s disease when I came across your blog. Thank you for sharing your story with the world. I couldn’t stop reading…


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