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"Advice" to a person with Advancing Parkinson's Disease

Friday March 04, 2016

A few weeks ago a social worker/counselor came to my apartment to help me examine how I was handling my advancing Parkinson’s Disease. A young associate was with her taking notes, particularly noting my comments and responses. At the end of our session, I said to him, “You have been very quiet and taking a lot of notes. Do you have anything to add to what I have said?” He replied, “I have nothing to add, but I would be interested in hearing what you might say to someone with advancing Parkinson’s Disease.” “That’s a good question. I’ll have to get back to you,” I told him.

I have no “advice” to give. What I can offer is my personal experience, for whatever way that may be of help to somebody. Secondly, any coping habits that contribute to dealing with Parkinson’s Disease (PD) are evolved out of lifelong experiences and are unlikely to be acquired later in life. Thus, ways of coping evolve over time and not as something new or as an “add-on.”

I think it is wise to recognize that the development of PD in one person is not identical to anyone else’s. While there are common symptoms, there is no common path for PD development: getting early onset or developing later. The speed with which it evolves varies and there may be long plateaus before they drop down. Just because a person has one set of symptoms doesn’t mean they will evolve in another person the same way. Each individual has a pattern of coping. I found it necessary to be attuned to what is happening, and to recognize the changes that affect speech, mental facilities, ability to accept change, etc. We can learn from one another but we don’t mimic each other. That’s why it is important to recognize that I have PD, but PD doesn’t have me. I refer to “my” PD, in the personal possession and address it in my personal way.

In reflection, the attitudes which have guided my approach to life, are longstanding and include:

1) The writings of Viktor Frankl, found in a small book originally titled, From Death Camp to Existentialism, (later published under a more appealing title, Man’s Search for Meaning) in which he reflected on his concentration camp experiences. Those who had given up would soon die; those who chose to do everything possible to maintain themselves could live. Frankl stated the only thing we do not have to lose is the attitude with which we choose to face life. Emphasis is on choice and attitude. I have found it is much better advice to choose a positive attitude to live in the world than to bemoan one’s losses. So, I choose to be positive in the face of disability. It is a natural way of being, emerging from my life’s experiences.

2) Reaching out and engaging the world. Even the most introverted of us still need to be in touch with the world, engaging in it in our own way. Before PD struck, I was able to go out into the world. As my life became more restricted, I needed to find a way to bring the world to me. Not in a selfish way, but to engage with it. This includes both persons and experiences. Always reach out. Engage the world with ideas, reflections, experiences, keeping the mind alive, so to speak. Being interested in others, being present with them, not just to gain information, but to be genuinely interested. Find out what they are doing and how they are living their lives, be present, in spite of our restrictions.

I have been a lifelong reader of non-fiction – history, biographies, and books of reflection. As my eyesight has been deteriorating, I find I must resort to books on CD which are very helpful and engaging. It takes a little longer to listen to a book than to read it, but when you can’t read it, it is good to listen and reflect on what you are learning.

One of the valuable tools of my pre-PD life was curiosity. I was interested in what was happening and why it was happening. When I was diagnosed with PD, I joined the national organizations, the Washington Chapter of APDA and the Northwest Parkinson's Foundation. Both agencies sent literature and provided programs and speakers, and jointly sponsored the annual HOPE Conference, usually held in November and very useful.

Throughout my life I have been an avid hiker and walker. But as my PD developed and I could no longer go backpacking, I continued to walk city streets. Even now that my mobility is much more restricted, I still walk the hallways of my supported living facility. It is important to do a much exercise as one can. The joints become creaky over the years.

All of these personal traits, or skills, if you will, have enabled me to keep engaged and relevant, I hope. And I continue to be curious about the life I am living and my place in it.

No advice, just these observations.

- Leon Hopper

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