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Book Review: The Perapatetic Pursuit of Parkinson Disease

Tuesday October 04, 2016

The Peripatetic Pursuit of Parkinson Disease, by NeuroWriters. Little Rock, Arkansas: Parkinsons Creative Collective, 2013. 319 pp.

It is always good to hear about Parkinson’s from the people who know it best — the men and women who have the disease. The Peripatetic Pursuit of Parkinson Disease gives us a welcome window into the lives and thoughts of a wide variety such people.

Who wrote this book? The title page lists eleven specific authors, in alphabetical order, and mentions many unnamed “contributors from the international Parkinson community.” On page 6 we find the photographs of those eleven, plus the photographs and first names of two more. No leader or editor-in-chief is singled out. Instead we find the statement that “we made decisions by consensus, worked in harmony.” Separated by distance, they worked in Skype meetings to bring the work of many individuals with Parkinson’s together in this book. The Foreword is by John M. Grohol, PsyD, the founder of an online community known as NeuroTalk, but he was apparently not one of the writers or editors of The Peripatetic Pursuit of Parkinson Disease.

The imprecision about the editorial process can be explained in part by a desire to provide legal protection to the authors and publishers in case someone wanted to sue: “The reader assumes all responsibility and risk, if any, for the use of any of the general information found within the book” (2).

Can the information and the advice given in the book be trusted? The answer is that you will have to decide that for yourself. For example, in a section on “Helpful Hints for Parkinson Carers” we find this advice: ”Discourage use of a cane (walking stick), walker, wheelchair or power chair until absolutely necessary.” If I follow that advice, walk out without my cane, fall and break a hip, can I sue? Probably not. No specific author of that advice is listed, and in any case, the legal disclaimer seems to leave me no recourse. Does my fall mean that the advice was bad? Perhaps, but perhaps not. Is it really bad advice to encourage a person with Parkinson’s to try to manage as long as possible without depending on an assistive device? Would a cane have prevented my fall? In my case was the cane “absolutely necessary”? (For what it is worth, I generally do not carry a cane at home, but do when I go out.)

The introduction states that “this book was written by people with Parkinson disease, for people with Parkinson disease, their families, their friends, and all who love and care for them” (9). The various chapters are variously useful.

Chapter 1, "Parkinson basics,” will be of particular interest to the newly-diagnosed. It contains the brief narratives of a number of patients, gives lists of symptoms often associated with Parkinson’s, lists of medications often prescribed and their possible side effects, shows what a number of people who have had deep brain stimulation feel about whether it helped them, gives advice about how to react to the diagnosis and when to tell others about it, and lists the things people hate most about having Parkinson’s. My favorite quotation from Chapter 1: “Parkinson doesn’t kill you. But there are no survivors” (70).

Chapter 2, “More than a Movement Disorder,” challenges the common assumption that Parkinson is entirely or even mostly about motor-disorders. For many patients, difficulties with movement are the least of their worries. Just as frightening are other problems that can come with the disease or with the medications prescribed for it: anxiety, apathy, confusion, constipation, delusions, dementia, depression, drooling, executive dysfunction, extreme fatigue, hallucinations, impulse control, incontinence, nausea, sexual dysfunctions, sleep problems, speech difficulties, weight loss or weight gain. My favorite quotation from Chapter 2: “It’s like you get up in the morning and think, I’d like to do this and that today, but first I have to check with the board of directors, and Mr. Parkinson is the Chairman of the Board” (87).

Chapter 3, “Helping Ourselves,” sings the praises of exercise — almost any exercise: biking, boxing, dancing, going to gyms and health clubs, hiking, paddling, pedaling, playing a musical instrument, rowing, sailing, singing, swimming, tai chi, walking, yoga, . But there are other things we can do also: practice good nutrition, use spices like ginger, curcumin, and turmeric, filter our drinking water, meditate and get massages, stay active socially, laugh, stay engaged in life. My favorite quotation from Chapter 3: “If I do nothing, I get nothing, but then nothing is expected if I do nothing so at least I’m not disappointed in the results. However, I strive to push on, by realizing that too long of a hesitation is actually a stop, and too long a stop is actually a regression. It’s like paddling a canoe upstream. Your effort, or lack of it, determines your direction” (124).

Chapter 4, “Quality of Life,” is about ways to have more enjoyment despite the reality of a diagnosis of Parkinson’s. It raises issues like coping in the workplace, making a good transition away from work, exercising the brain as well as the body, finding ways to enjoy what we have and finding new things to enjoy as the disease progresses, finding grace, coping alone and sharing the burden, finding alternative treatments, accepting life in the slow lane, and enjoying our children. My favorite quotation from Chapter 4: “Hey, these things happen . . . and I’m absolutely sure that my husband and daughter, as well as myself, have been made stronger by it” (157).

Chapter 5, “The Difficult Bits,” deals with late-disease issues like home care, hospitals, nursing homes, living wills, advance directives, hospice, and dying. The chapter is prefaced with this advice: “You may wish to defer reading this chapter until you feel you need the information” (168). I am not sure that it is wise to delay thinking about end-stage Parkinson’s. Refusing to think about such issues can be disastrous for both you and your family. My favorite quotation in Chapter 5: “It is not dying we are afraid of, it is dying badly” (201).

Chapters 6, “PD Activism,” 7, “Advocacy in Action,” and 8, “Going International,” give advice about becoming an advocate for Parkinson’s, becoming part of the wider medical, political, and advocacy movements by donating, going to walks, participating in on-line chat rooms, joining and supporting local, national, and international foundations, volunteering for medical research, and working to limit the use of certain chemicals and toxic substances in farming and military operations. My favorite quotation from Chapters 6–8: “Despite two hundred years of effort, we do not know the cause, the course, or the cure” (245).

The Peripatetic Pursuit of Parkinison Disease is a rich and valuable compendium of essays, reports, opinions, narratives, pleas, and poems by many different men and women who have Parkinson’s. Its chief strength is that it presents the direct views of people who write with refreshing honesty about their own experiences with the disease. Its chief weakness is closely related to its chief strength, in that it remains a widely diverse collection of views. There is virtually no effort to bring the various views together into a consensus.

The book lives up to its title, The Peripatetic Pursuit of Parkinson Disease. The authors tell us that the word “peripatetic” derives from the Greek word meaning “given to walking about.” They remind us that a “peripatetic school” is an informal school and that Aristotle was given to lecturing while walking about. In this book “peripatetic” suggests not a wise Aristotle giving coherent lectures but meandering teachers who all seem to stroll around and talk at the same time. There is much useful information in this book, but it might have profited from an Aristotle who would help us to separate the wise from the whining, the factual from the frivolous, the true from the merely heartfelt.

Interested in reading The Peripatetic Pursuit of Parkinson Disease? Call NWPF at 877.980.7500 to check it out of our Lending Library. You can also purchase your own copy on Amazon

Peter G. BeidlerPeter G. Beidler
Peter G. Beidler

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