On and Off: My Parkinson Challenge

By Rona Davis

If you are an honorable member of the P club, you will find here something of yourself. You will also find a lot of me (author's privilege) and some way forward for us all.

I stepped to my girlfriend's apartment, took a deep breath, and smelled the oxtail cooking on the stove. I don't really like this type of stew, but it smelled gorgeous as anything other than industrial pink soap would.

My girlfriend froze to the spot. It was known that I could not smell anything. Only when I told her I smelled laurel leaves and allspice, then she understood I wasn't pulling her leg.

The juries are still out on the question of how, when, and why.

There is a sense to Parkinson's, but sometimes we are all too occupied with our daily hell to notice between the ON and OFF states management and the pain. The research community is in no better shape; neither is the medical community. Modern medicine brought wonders to our species, but when a researcher pitches for a research grant, he must keep it small enough so they will be able to win such a pitch.

In the modern world, we must take a different approach. Gone are the days when a single researcher was shattered as a child when their grandmother went through the stages of Parkinson's disease and then vowed to dedicate their lives to research and to the eradication of Parkinson's. This could be a good holiday season movie (all rights reserved) but not a cure.

Getting rid of Parkinson's disease must take another approach, both scientifically and financially. Such a task must consider industrial interests that are beyond the traditional pharmaceutical companies. The latter may introduce methodic obstacles. Also, the financial backing for such research may not be the traditional pharmaceutical companies but some other player altogether. In the meanwhile, we must keep ourselves functioning, manage our ON and OFF states, and reinvent ourselves every day at a time.

• Language: English
• Publisher: Fulton Books, Inc.
• Release date: Sep 26, 2022
• ISBN: 9798885051477

Book preview

Contents

Disclaimer

Preface

Chapter 1: Diagnosis

Chapter 2: Shouts, Lifts, and Secrets

Chapter 3: How Do You Get Rid of Parkinson’s Disease?

Chapter 4: When We Will Be Able to Get Rid of It

Chapter 5: The Secret Lives of MIDI Dopamine

Chapter 6: Why Me? Why now?

Chapter 7: I Think I Am Walking Funny

Chapter 8: Ignorance Is Bliss

Chapter 9: Walking Backward

Chapter 10: Food

Chapter 11: Levodopa Mon Amour

Chapter 12: Getting Rid of Levodopa

Chapter 13: Pramipexole

Chapter 14: Agonist and Antagonist

Chapter 15: It Smells So Good in Here

Chapter 16: Falling in a Club

Chapter 17: Sex, Gender, and the Task of Reinventing Thyself

Chapter 18: Pilates

Chapter 19: The Parkinson’s Symptoms

Chapter 20: Smoking

Chapter 21: Activities of Daily Living

Chapter 22: Driving

Chapter 23: Dating

Chapter 24: Employment

Chapter 25: Well-Wishers and Aids

Chapter 26: Insurance

Chapter 27: Parkinson’s Stages

Chapter 28: On and Off

Disclaimer

I am forty-nine at this time, eight to ten years diagnosed with Parkinson’s disease. My ideas are mine alone and based on my experience which is, by nature, limited and subjective. On the other hand, I’ve been diagnosed at a very young age, so in a sense I can experience Parkinson’s solo without any third-age symptoms.

For myself, I aim to enjoy life to the fullest possible while paying Parky its tribute and die from cancer like any sane human being at the age of seventy-five to eighty, but that is me.

This is my Parky. There are many like it, but this one is mine.

My Parky is my best friend. It is my life. I must master it as I must master my life.

Without me, my Parky is useless. Without my Parky, I am useless. I must embrace my Parky true.

My Parky and I know that what counts in war is not the rounds we fire, the noise of our burst, nor the smoke we make. We know that it is the hits that count. We will survive.

My Parky is human, even as I, because it is my life. Thus, I will learn it as a brother. I will learn its weaknesses, its strength, its parts, its accessories, its sights and its barrel.

(Inspired by the Rifleman’s Creed, United States Marines Corps)

Preface

While writing this, I realize that it may be not too long until I would not be able to type it myself. Could be a year from now, could be a month, could be ten years that I will only be able to dictate.

Going up the ladder toward stage five, up and down, touching and running away. In some days, the writing just flows out of itself, following an inner uninterrupted beat.

The beat is what’s missing in this disease, the flow of movement; it’s the edge that degenerates. The edge of the flow moves slowly toward the center of the flow until there is none.

These ideas come to me as a single statement. It’s the writing that allows me to unfold this statement and make it linear and comprehensible.

My feet are strong, it’s not the feet’s ability to exercise force, but it’s the brain’s ability to broadcast the beat. This acts as a puzzle for anyone seeing me barely walking and then, for a moment, sees a less automatic like climbing a staircase.

In writing, there is a beat that we carry without paying much attention. It is always there like a recitative playing in the back of the mind when we write. Parky simply shuts it off.

Parky’s biggest effect is to move our simplified activities away from the automatic, inner beat-based rhythm to the aware, and slow active perception. When performing the same activities in an aware mode, I need to exercise more force.

I feel the effect of the strength on my body right now; the thighs are pulsating toward the end of the day, but this is me and my body.

And this book is also me, me and my Parky, having had the initial precursor back in 2009, seeing some of the feathers but not having a clue back in 2011, and being formally introduced in 2013 that have come to see my condition as both a pain in the ass and a trigger for reinventing my life and looking at the bits and pieces that compose the picture I have in my mind.

But Parkinson’s disease is different for everyone; this book describes my own private Parky.

Parkinson’s disease took away a lot of the things I wasn’t aware even existed, barring their absence which is very tangible.

Parkinson’s disease also made me aware of what my body does on its own and what requires emulating the missing inner beat or what I have to do to jump-start when frozen (e.g., I walk normally and then halt to a freeze).

It takes a deliberate action to continue. Normally, it requires a change in walking pattern to budge. I can do the virtual high heels or the frog march, and it will suffice eventually.

Chapter 1

Diagnosis

It is always amazing when you look at all the different types of families. And in families, as in families, there are some basic lines of conflict, cooperation, and competition. Adler once made a wholistic theory about personal traits affected by the person’s position in the family constellation.

Adlerian psychology focuses on people’s efforts to compensate for their self-perceived inferiority to others. These feelings of inferiority may derive from one’s position in the family constellation, particularly if early experiences of humiliation occurred, specific physical conditions or defects existed, or a general lack of social feeling for others was present.

Michael J. Fox played Alex in the TV series Family Ties, which unintentionally demonstrated Adlerian points of conflicts and their resolutions. When it went off the air, MJF was twenty-eight years old.

He was twenty-nine years old when the first Parkinson’s disease symptoms happened.

Looking back, I do not know when it started. Looking back, I could think of several symptoms that started way before. I can even remember that, at some point, I was looking into something I spotted, googled it, and could only find references to Parkinson’s disease, which I ignored since it did not seem relevant at that time.

Who in his right mind would consider Parkinson’s disease symptoms in a healthy thirty-nine years old?

It started when my young brother ran a marathon. I am the elder of four, and he is number three. The Adlerian view would be that I, as the dethroned firstborn, would feel compelled to perform something that would prove my superiority in order to get back my self-esteem.

Human as we are, I decided to start preparing for a triathlon contest. A triathlon is a multi-disciplinary contest that comprises three stages:

swimming for almost a mile or 1.5 kilometers

bike riding twenty-five miles or forty kilometers

running 6.2 miles or ten kilometers

I could do the swimming even now, and I guessed I could be okay with the bicycle ride, but the running bit seemed challenging. I could do a one-mile run in no doubt, but more than that, it was something I had to prepare for.

To prepare for the running, I needed to extend my running range, so I started running on alternating nights just next to home. A routine of making supper, showers, bedtime, and then once they are all tucked in, I would go out for a run, starting with one mile and walking the additional 5.2 miles on the second time and run 1.5 miles and walk the additional 4.7 and so forth.

This is something I can recommend runners as a method of extending your range. Eventually, what happens is that the walking gets a bit shorter and shorter on both ends. You start your run, and after getting around half of the walk, you are rested enough to start running again; therefore, you extend your range until the walking stage becomes irrelevant in a noticeably short time

One thing I did not consider is topography. It is one thing to run on a plateau; quite another is up and down a hill

It so happened that my small town has two hills: hill A and hill B. My house was built on the southwestern slopes of hill B, making the first running an uphill effort and the last a downhill section.

This was, in fact, quite helpful to my range extension method because it was relatively easy to run the last section. It also made most of the run a mixture between uphill and downhill.

section one, uphill B: running extra difficult

section two, downhill B: running relatively easy

section three, uphill A: running more difficult than section one because it’s longer

section four, downhill A: running relatively easy on the hemp but challenging to the