Parkinson’s Pete’s Living and Dying with Parkinson’s Disease

I resist thinking of Parkinson’s as a fight to be fought, but if having Parkinson’s is a fight, it is not a fair one

Peter J Beidler

Peter Beidler’s latest book,  Parkinson’s Pete’s Living and Dying with Parkinson’s Disease, was sent to me last month for my review by his publisher.  Beidler, a former professor of English and American Literature at Lehigh University, has been living with PD since 2005.  Always a teacher, (he dubs himself “Parninson’s Pete”) he wrote the book to show others that “they can both live well and die well with Parkinson’s.”

This is a book that everyone with Parkinson’s and their care partners should have on their bookshelf. It is a wonderful guide for both living and dying with Parkinson’s. Beidler does not intend the book be read cover to cover; instead he suggests it be used as a reference guide, reading what is relevant to you at any particular time, especially for the newly diagnosed.

As a practical matter is is two separate books. In Part One:  Living with the Disease, Beidler shares his journey and insights into how to live well with PD. In Part Two: Dying with Parkinson’s Disease, he covers important end-of-life issues that people with PD (well, actually averybody) should confront well in advance. There is a lot of great information in both parts of the book, but the newly diagnosed people should probably wait a while before reading Part Two, because the issues discussed can be overwhelming for someone who has not yet come to terms with the disease.

Part One: Living with the Disease

Starting with the onset of his first symptoms, Beidler shares his diagnosis, coming to terms with PD and living well with it for many years.  He says: “I resist thinking of Parkinson’s as a fight to be fought, but if having Parkinson’s is a fight, it is not a fair one.” 

In each chapter, Beidler addresses a specific issue, such as who is on your Parkinson’s team, joining Support groups, why you should find “Parkinson’s friends” (others whohave Parkinsons), what it feels like to have PD and how a friend without PD can help a person with PD.  Throughout the book, he uses personal experiences, poetry and especially humor to illustrate how it is possible to live well for many years with the disease. 

Part Two: Dying with Parkinson’s

,This half of the book is much more difficult, but includes so much good information that few have written about before.  It is a reminder that unfortunately, the good years with Parkinson’s will eventually become the “not so good anymore”.  There are many issues that we need to confront and he does not shy away from talking about anything.

Beitler explains why it is necessary to appoint someone to have durable power of attorney for health care decisions about housing, treatments and other end-of-life options before you are unable to make them yourself.   He also urges you to write and sign an advance directive to your doctors, family and designated power of attorney to let them know your wishes about end-of-life issues.

“Where’s Grandpa”

The most moving chapter of the book for me was the last,  “Where’s Grandpa?”   Beidler writes a beautiful letter to his grandchildren about life’s lessons.  This is his legacy to them, with a lot of good advice delivered with love and, especially, humor.  Things like: “Try to get married only once…. In marriage everyone wins and shares in your joy.  In divorce, everyone loses except the lawyers.”  Or “procrastination is the thief of time.  If you put off until tomorrow what you could have done yesterday, you will never get caught up.”

“Parkinson Pete’s” wisdom comes from a life lived well, even with Parkinson’s Disease for the last 16 years.  We can all learn from his stories and advice to live better, productive lives with Parkinson’s Disease, one chapter at a time.

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