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Ten for David

Monday July 25, 2016

Content Warning: Death with Dignity

[This] is a realistic scenario that many who have Parkinson's or who love someone with Parkinson's will want to read. Some may find it depressing to learn in so much honest detail about what this disease can do to people, and to the families of people, with the disease.

Pete

[On Saturday, June 4, 2016, Peter G. Beidler gave the opening remarks at a seminar on treatment options for Parkinson’s disease at a PD University seminar at Skyline in central Seattle. We asked him if we could publish his remarks in the Parkinson’s Post.]

On Monday I leave for Kansas City to visit a relative named David. About a month ago David was diagnosed with Parkinson’s disease. I assume that he has been surfing the web for information about his disease, as I did ten years ago when I got my diagnosis. If he did, he will read all sorts of nasty things about Parkinson’s:

“no cure,” “progressive,” “degenerative,” “muscle deterioration,” “loss of motor function,” “loss of brain function,” “loss of ability to speak clearly,” “difficulty swallowing,” “constipation,” “tremors,” “dopamine deficiency,” “freezing,” “loss of balance,” “falling,” “urinary urgency,” “clinical depression,” “cognitive dissonance,” “sexual dysfunction,” “stiffness,” “compulsive behavior,” “sleep disorders,” “dementia,” and so on.

After reading such descriptions of what can lie ahead for him, David will probably not be in the mood to hear what I am trying to say, but here are ten things I hope to have a chance to say to David:

1. Sure it’s bad, but NOT AS BAD AS YOU MIGHT IMAGINE. We are all destined to get something, and there are many worse diagnoses than Parkinson’s. Parkinson’s is not a painful disease and it moves slowly. For many years to come you will be able to function pretty much as you always did.

2. Use the disease to help you FOCUS YOUR ENERGIES, help you decide how you want to use those years. Get started on your bucket list. Travel. Write. Visit old friends and neglected family members. Hug old enemies. Clean out your closets and files. Appoint someone as your durable power of attorney for financial matters. Fall in love.

3. Always take ONE MORE STEP. Let no step be your last. Plan activities that make you move — yoga, biking, hiking, dancing, boxing. WALK to where you want to go — to the bus stop or to the gym or to the restaurant. As you walk, listen to the birds singing, the wind in the trees, and the happy laughter of little children in the playground. If you sit around and wait for your Parkinson’s to get worse, it will get worse faster. Don’t give it a chance to immobilize you.

4. DON’T WHINE. When your sister asks you how you are, tell her you are doing pretty well, thanks. If she asks you a second time — “No, really, David, how ARE you?”— go ahead and tell her something like, “Well, I’m doing pretty well, all things considered. My biggest frustration is that it is almost impossible for me to type now. My left fingers just don’t do what I tell them to.” Tell her more, if she asks, but keep in mind that not many people want to hear about ALL of your woes unless they think thy can help. They usually can’t, so be stingy with your complaints.

5. FIND OTHERS with the disease. Find or start a Parkinson’s support group. No whining is necessary when you are surrounded by others with Parkinson’s. They will know. They will understand. My Parkinson’s has introduced me to a ton of wonderful people who know and understand.

6. BE PART OF THE CURE. Researchers need volunteers. Help yourself and others. In Seattle we have a Parkinson’s Registry that gives people with Parkinson’s the opportunity to volunteer for all sorts of studies. Since my diagnosis, I have volunteered for research projects on voice therapy, video-gaming, physical therapy, genetic studies, dementia studies. For one study I recently wore a Fitbit watch and electronic socks that recorded my activity levels. I was amazed to discover that in the two-week period I wore that stuff I had walked a total of eighty-five miles. You didn’t ask for your Parkinson’s, but now that you have it you can be a help to researchers who are studying the disease.

7. Think about DEATH WITH DIGNITY. Washington is one of the few states that give you meaningful legal choices about how long you live and how you want to die. What about Kansas? Have a talk with your doctor and members of your family about end-of-lie issues. Under what circumstances you want be revived? How do you feel about feeding tubes and palliative care. Document your wishes and sign the document. Appoint someone as your durable power of attorney for health care.

8. Think about LIFE WITH DIGNITY. Set an example to others. Be cheerful. Be more grateful for what you have than ungrateful for what you’ve lost. This is your chance to be a hero, to show some true grit.

9. Think about what you can do to MAKE LIFE AS PLEASANT AS POSSIBLE for the people around you. Michael Kinsley said in a book that he published just this year, the twenty-fifth year since his Parkinson’s diagnosis: “If you want to be remembered as a good person, then try to be a good person” [Old Age: A Beginner’s Guide (2016), p. 14].

10. LAUGH. One of the announced topics of this seminar is surgical options for Parkinson’s. Well, let me tell you about the doctor who got Parkinson’s, which as you know is non-symmetrical. The disease affected his left side, so he decided to stop the progression of the disease by cutting his left side off. He got his surgeon friends to do the operation, so they amputated his whole left side. It worked! I am happy to report that he is all right now.

Peter G. BeidlerPeter G. Beidler
Peter G. Beidler

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