Tuesday, May 18, 2021

The Rest of the Iceberg



There is more to Parkinson’s than meets the eye.  Just ask people living with Parkinson’s or their care partners.  Using an iceberg as an analogy, motor symptoms, the part of the iceberg that can be readily seen above water, can be more than challenging enough on their own.  However, what lurks beneath the surface are the non-motor symptoms, which as anyone familiar with the fate of the Titanic can tell you, are game-changers.  The non-motor list includes 20+ categories that range from nuisances to life-threatening.  The following four PwP (people with Parkinson’s) stories provide a window into life with PD non-motor symptoms.

PD Cognition Issues:  Mild cognitive impairment/Dementia

I was recently asked to do a patient-perspective presentation at a Parkinson’s Palliative Care Conference in Portland, OR on a non-motor symptom of my choice.  Since my biggest concern has been PD-related cognition issues that began soon after my diagnosis in early 2008, the choice was easy.  In spite of apparent resistance to open discussion of this subject by doctors and patients at that time as well as lack of online information, it didn’t take long for me to realize that a significant percentage of PwPs are eventually diagnosed with PDD (Parkinson’s disease dementia) and that it is a terminal condition.  This news would get most people’s attention and I was no exception.  In the eight years that have passed since my PD diagnosis, I have taken four neuropsychological exams and have been told that I have mild cognitive impairment (MCI), a condition that dramatically increases (but does not guarantee) an eventual dementia diagnosis.  I made a commitment to myself to be “transparent” about the impact this was having on life, hoping that this would encourage more open discussion of this subject which is now the #1 concern of most PwPs and care partners.  Part of honoring this commitment was writing a book on this topic that shared information designed to expand the conversation, ideas and thoughts regarding causation and implications for the future, my own experiences in this “prodromal” time period, what has enabled me to continue to live well and productively, and how I have reached acceptance of whatever the outcome may be.  Concepts that I am committed to include:

·         Learn from the past, plan for the future, and live in the moment

·         Focus on quality of life

·         Remain engaged as long as possible

·         Finish the race well

These personal goals provide some insight into why I have become so committed to the development and growth of team-based PD palliative care (PDPC) services.  Each of them is a “core concept” in PDPC.  I can’t imagine many things better than helping my brothers and sisters in the PD world learn about the many benefits of these services which will help them identify and accomplish their own goals.

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