Whoa Nellie

Writing about Parkinson’s is a trickier business than I thought it would be. In my earlier pieces I shared my struggles with this pernicious disease over a fifteen-year period. What did I learn – 

that the future will bring new patterns, further debilitation, and less capacity. These patterns can appear early or late in the process, and may be mild or severe. I have not found a way to prepare for the unexpected, but have considered how I might respond to new challenges.

In March of 2019 I fell and cracked my hip. I had surgery the next day and three pins were inserted to repair the damage. The surgery to stabilize my hip through the use of pins failed, but that wasn’t apparent until several weeks later. During my hospital stay, I developed other illnesses that slowed my recovery and my rehabilitation, and an intended two-day stay at the hospital became an eleven-day siege. 

After I was finally discharged from the hospital, I began my rehab activities. For two weeks, my healing improved and I felt relieved. However, after two weeks the healing process turned worse. I went from using a cane to a walker and from using a walker to a wheelchair. 

The surgeon urged patience After living with constant pain for several weeks, my patience ended and I made an appointment with a physiatrist who ordered a cat scan which revealed that my hip bone was not receiving an adequate blood supply to remain healthy. In short, my hip bone was dying and the pain I experienced was the body informing me that the condition was getting worse. The medical solution was to undergo total hip replacement surgery. Recovery from this surgery was rapid.

 

Between the first and second surgeries, I resisted the work needed to regain my energy and strength. The pain was too great. I remembered a quote of Lincoln’s when asked about a senatorial election he had lost to Stephan Douglas, and it seemed to sum up my mood at the time.  “I feel like the boy who stubbed his toe,” said Lincoln. “It hurts too much to laugh and I’m too big to cry.”

After the second surgery, I had the will to work at improving my walking and I was encouraged by my rapid recovery. The pain had vanished and over a short period of time I was able to discard the wheelchair and walker and now alternate between using a cane and trusting my own body for balance. 

In earlier essays I wrote on this subject I quoted a common observation about people with Parkinson’s. Briefly stated, the comment notes that if you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s. The disease can express itself in many different ways with different people. The same applies to the energy, commitment, and resolve of Parkinson’s patients to undertake initiatives that facilitate living as full a life as possible while enduring a progressive disease. 

Coping mechanisms that previously worked may not be as effective in combating new features. Finding cures has turned out to be elusive. When I was first diagnosed with Parkinson’s, the general sense was that significant medical strides would be made within the next five years. That shibboleth was repeated to me on the tenth anniversary and on the fifteenth, as well. Starting with the Michael J. Foxx Foundation, significant resources have been allocated to finding solutions to this disease. It has proven to be more resistant than anticipated, taken longer, and will require greater resources. 

Breakthroughs in our knowledge about Parkinson’s are occurring. But until we have learned more about this disease and are able to apply that knowledge commercially, we must develop coping mechanisms if we intend to suffer less and lead a fuller life. Each of us must navigate our own way through Parkinson’s to counteract our diminishing internal resources.

I have a “go to” list where I search for comfort, understanding, balance, and strength. The list is flawed, but at least I have a list that works as an ongoing resource for me. I am pleased to share that list with you so you can adopt what works for you, and discard what isn’t helpful.

Be honest with yourself as changes occur so you can modify  behavior accordingly. 

Acknowledge grief, loss and isolation. 
Appreciate joy, pleasure, accomplishments. 
Have an advocate join you at doctor visits and in the hospital. Be clear with all medical issues that your concerns have been heard and are being met to your satisfaction.
Years ago I experienced a storyteller by the name of Brother Blue. He believed we all hold on to our personal stories, don’t share them, and keep them so private we hide who we are from others. Brother Blue felt if we could tell that story to others, all the other secrets we hold onto would become lighter in our being, and we could then be seen by others, flaws and all, and be loved for who we are – not just for who we pretend to be.   
Find an outlet (someone you can talk to). It may be a spouse, best friend, or professional, but it helps if you can share the load. 
Find a place where you can store uplifting stories, poems, artwork, take them out occasionally, and read them again. When we are in pain or anguish it is hard to recognize that beauty surrounds us. But it does, and can serve as a counterweight that raises our spirits.
Explore (or continue) a practice of religious beliefs, spirituality, Buddhism, yoga, etc. to see whether they are a type of ally that serves you. The commitment to find (or use) these tools moves you from being a passive victim of a nasty illness into an activist engaged in conscious resistance.

Why did I title this piece Whoa Nellie, an expression that means that something is happening too fast and needs to be pursued more deliberately? When I wrote the first two pieces I was giving expression to my observations and techniques for addressing Parkinson’s. In this current piece the challenges I describe were less fluid, not as predictable, and more debilitating. The changes indicate that the disease was advancing at an accelerated pace. The changes didn’t mean I couldn’t compensate – rather that new techniques needed to be developed as coping mechanisms. More time was required to understand how the new Parkinson’s limitations were likely to manifest themselves.

I needed to understand their encroachment on my daily activities, how I could fit their elements into my daily life, and what resources would be helpful. If I initiated change too quickly, I was likely to have settled into actions that weren’t fully considered. Time would provide me with information, and information would help me understand limitations I hadn’t previously encountered. Whoa Nellie was just an invitation to initiate changes at a pace where I wouldn’t lose the reins. 

George Kaufman

© January 2020

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