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Book Review: A Complete Guide for Patients and Families

Friday December 18, 2015

Parkinson’s Disease: A Complete Guide for Patients and Families, Second Edition, by William J. Weiner, M.D., Lisa M. Shulman, M.D., and Anthony E. Lang, M.D. Baltimore: Johns Hopkins University Press, 2007. x + 278 pp.

To live with Parkinson’s disease is to live in a world of changes—changes in our symptoms, changes in our ability to cope, changes in medication. The announced goal of the authors of Parkinson’s Disease is to “contribute to a foundation of knowledge for persons who are living with Parkinson’s disease in order to help them make healthy adjustments to these changes, to develop competency in self-monitoring and self-management, and to become effective partners in shared decision making with their physician” (xi). Those are noble goals, but this book does not fully achieve them.

PD GuideThe book is divided into five parts: 1, Introduction; II, Signs and Symptoms of  Parkinson’s Disease; III, Diagnosing Parkinson’s Disease; IV, Treatment of Parkinson’s Disease; and V, Other Issues. Of particular use are parts III and V.

Part III explains clearly the difficulty that physicians have in arriving at an accurate diagnosis. With few clinical, chemical, or electronic tools to help them, doctors must rely on their observation of the patient. They look for tremors, stiffness, slowness, and balance problems. These symptoms are often not readily apparent early in the disease, and even when they are, can often indicate other diseases than Parkinson’s.

Of particular interest in part V is the list of questions and answers in Chapter 18, the closing chapter. Among the questions are ones we have all wondered about but were reluctant to ask directly: What is the prognosis for someone with Parkinson’s disease? Will I be an invalid? Will I still be able to drive my car? Will I be able to travel? Is it true that levodopa preparations work for only a limited period of time? As my disease progresses, will I be able to control my bladder and bowels? Is there sex after Parkinson’s disease? Will I eventually require live-in help? Nursing home care? Will Parkinson’s disease shorten my life?

Those seeking definite or encouraging answers in this book to such questions about the future will probably be disappointed. The three doctors who wrote this book generally give uncertain answers to most questions about what lies ahead or around the next corner: “The prognosis varies.” “Parkinson’s may seriously compromise your ability to drive safely.” “For some people, yes, but not all.” “Probably, but not always.” “The disease follows a unique course in every individual.” “Some people with Parkinson’s . . . . On the other hand, many people with Parkinson’s . . . .”

Readers who seek encouraging news about what lies ahead should probably not read this book. Although the authors have much to say about drugs that can help to alleviate some symptoms, such readers will find the tone of the book to be overwhelmingly negative: “Parkinson’s has neither a cure nor any treatment to slow down its progression” (4). “The central mechanism that controls muscle tone does not function adequately for the delicate interplay of muscles required to help us stand, walk, and balance. In addition, because Parkinson’s disease also affects the autonomic nervous system (the largely unconscious system that controls our body temperature, digestive system, sexual function, and bladder control, among other functions), these systems may also act oddly” (9). “Although medications for Parkinson’s disease may improve posture somewhat, no measure has been successful in preventing the development of this problem” (51). “Parkinson’s disease is a progressive disorder. It continues to get worse” (61). “Parkinson’s can cause a wide range of cognitive, behavioral, and psychiatric symptoms, and so can the drugs used to treat it” (77). “Although creating a brain lesion may help alleviate the symptoms of Parkinson’s, surgery does not cure or even slow the disease: Parkinson’s remains a degenerative disease: it continues to get worse” (211). “People with Parkinson’s must understand that this procedure [deep brain stimulation] is no cure” (218–19).

To be sure, such statements are probably accurate enough, but are they really consistent with the stated goals of helping people who are living with Parkinson’s make healthy adjustments as the disease progresses and to develop competency in self-monitoring and self-management? With so little to look forward to but more and increasing dependence and disability, with so little encouragement to hope for a better future, what healthy adjustments are we to make?

If it Parkinson’s is bad as these three clinicians say it is, and if the future for people with Parkinson’s is so dim, we might hope for at least a glimmer of human sympathy. We get a hint of it now and then in these pages, but often only to have it undermined, as in this section on alternative therapies for Parkinson’s: “As physicians who see many patients with Parkinson’s disease, we understand that there are times when they and their families feel hopeless, times with they feel desperate about their medical situation. In those moments, they may turn to alternative therapies, no matter how unrealistic or far-fetched they appear or how much they cost” (209). It is almost as if these three physicians want us to feel hopeless and desperate.

No, surely not.

                               -- Peter G. Beidler

Interested in reading Parkinson’s Disease: A Complete Guide for Patients and Families? Contact the Northwest Parkinson's Foundation and check the book out from our Lending Library! Call 877.980.7500.

Peter G. BeidlerPeter G. Beidler
Peter G. Beidler

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