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A Review on Parkinson Pete’s Bookshelves

Thursday January 18, 2018

Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books About Parkinson’s Disease by Peter G. Beidler addresses an unmet need, namely a resource that Parkinson’s patients, newly diagnosed and those who have been afflicted for a long time, can turn to as they repeatedly ask the question, “What’s next?” It’s also an invaluable resource for professionals such as doctors, librarians and other professionals who routinely are asked for credible resources.

How does one organize 89 short book reviews on the same topic in a manner that is helpful to the universe of people who are affected by the disease? Beidler’s solution is to display the books as: Shelf A: Nonfiction books by people who do not have Parkinson’s (30); Shelf B: Nonfiction books by people who have Parkinson’s (36); and Shelf C: Fiction (novels) in which at least one character has Parkinson’s (23).

On each shelf books are sorted based on the date they were published, starting with the oldest works. People who are most interested in current research and personal responses may opt to read each shelf from right to left. Although many reviews are repetitive due to the nature of the material, Beidler’s approach produces a multi-layered understanding of what is available.

One approaches this compendium with the eager expectation that important information about the disease and its trajectory will be revealed, particularly to those who have recently been diagnosed with Parkinson’s. Although they are disappointed with the diagnosis, they are not disappointed with this resource. Beidler creates a nuanced understanding of the disease, particularly helpful because Parkinson’s is not readily identifiable or definable. There are nearly as many variations of Parkinson’s as there are people who have PD, which leads to its label as a “Designer Disease” and adds to anxiety for the new members of the medical subset. Knowing possible twists and turns at least mitigates some of the mysteries surrounding the disease.

Each book is given approximately the same level of coverage in the same format. In the reviews of the nonfiction books on Shelf A, one learns symptoms of PD and the growing list of medications and surgical procedures that are used to treat it, along with possible side effects from each treatment. There are some clear winners in this category, books written by noted researchers, physicians and science writers. Beidler has lived for years with Parkinson’s and received national recognition for his writing. His extensive knowledge of the field and of those who are credible spokespersons is evident as he highlights those books that are particularly comprehensive, comprehensible and well written.

The second bookshelf, the “memoires” section, is more difficult to assess because each of these books tells a personal story of coping with Parkinson’s, from the moment of hearing the diagnosis that will change their lives to the challenging years that follow. The 36 books on Shelf B follow a common pattern. First there is the shock of the diagnosis, perhaps followed by denial, then a decision to either tell the world or hide it. Nearly every author offers a remedy for Parkinson’s: physical, emotional, spiritual, alternative belief systems and/or medicines, humor, diet, exercise, grit, attitude. Rather than confining themselves to their own stories, some hold out a vision of recovery despite the fact that, at this point, Parkinson’s is an incurable disease.

Of the 36 books on Shelf B, the Persons with PD section, 25 are written by young onset patients, those diagnosed under the age of 50-55. Since the average age of diagnosis is about 60 years, these 25 authors represent a subset of the PD population as a whole. It’s not clear why the younger folks tend to write books. Perhaps older patients hold out little hope for treatments or cures in their lifetimes, while those with young onset PD count on more time for solutions to develop that can be applied to them as well as to next generations. Or perhaps, older patients have seen too many “cures in five years” go by, or even perhaps they have seen too many stories like their own to feel they have anything new to offer.

23 novels fill the final bookshelf, “books that tell a story, often an exciting story, about people who had Parkinson’s”. I’m not sure why they are included. Beidler explains that the novels portray the “nasty realities” of the stresses PD visits on the families of people with Parkinson’s and “how people in the latter stages of the disease live and how they die”. Since I haven’t read any of the novels, I can’t speak with authority about them, but in my 10 intimate years with Parkinson’s disease, patients, literature, research, etc. I am acutely familiar with the nasty realities faced by patients and families. I don’t find them either exciting or entertaining. Perhaps I’m missing something.

Books such as this necessarily provide a snapshot in time of a rapidly changing field, therefore limiting their useful bookstore life. One can already find many more books about Parkinson’s on Amazon bookshelves and elsewhere. Although the specific research information may be quickly outdated, Pete Beidler has done us all a favor by identifying what counts in books about Parkinson’s and which books are likely to be helpful. Using this resource, people can make a checklist about what to look for in Parkinson’s resource materials. Even though everyone’s path is unique, Parkinson Pete’s Bookshelves provides meaningful, and in many ways, timeless, answers to that nagging question: “What’s next?”

Pete Beidler asserts that: “The point is not to impose on others my quirky likes and dislikes, but rather to help readers choose which [books] are most likely to give them the information they seek.” Parkinson Pete’s Bookshelves achieves its goal.

Nan Little, Ph.D.
Guest Writer

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