The Bastard Disease
Soloway conveys the devastating impact of Parkinson’s disease on both patient and caregiver.
The Bastard Disease, by Marin Soloway, offers insightful suggestions for caregivers gleaned from Soloway’s personal experience with Parkinson’s disease (PD) and his professional knowledge of prescription drugs used in treatment. The book portrays the anguish of a devoted couple who finds the pleasant prospects of their retirement years completely altered by the onset of PD.
Soloway, a career pharmacist, has encouraged and cared for his wife, Sandy, since she first experienced symptoms of PD more than twenty years ago. He tells of their initial reactions to her diagnosis and their growing awareness of the devastation caused by this incurable ailment. His professional experience with prescription drugs informs his discussion of the combination of drugs designed to alleviate symptoms and to slow the disease’s progression. He also explains the possible negative side effects and interactions caused by these drugs. Subsequent chapters focus on the selection of compatible caregivers, difficulties encountered with long term health insurance, and issues related to cognitive impairment.
As the disease progresses, physical limitations alter many aspects of a PD sufferer’s daily life. Patients often find that they can no longer shower or dress themselves. Soloway especially values the practical solutions to these obstacles that afford Sandy a small measure of independence. He writes: “The people who started manufacturing pull-ups pants that do not need a button or hook fastener were geniuses—and they must have a relative with Parkinson’s.”
Although his wife suffers from some cognitive impairment, she understands and feels keenly the consequences of her limitations. For example, when difficulties with motor control caused her to fall and possibly hurt herself, her doctor suggested that she use a walker around home. Unable to perfectly control the walker, she often bumps into furniture, baseboards, and other objects, making unsightly nicks in the wood. Soloway explains, “Although these actions may not sound too disturbing to a normal person, these actions are embarrassing and very upsetting to Sandy.”
Although the text includes numerous typographical errors, misspelled words, and convoluted phrasing, its message succeeds in conveying the disease’s devastating impact on both patient and caregiver. This brief book lacks comprehensive organizational structure, resulting in frequent repetition of information, confusion about time sequencing, and unclear meaning.
However, Soloway’s devotion to his wife and his desire to share his knowledge about caring for a Parkinson’s disease patient will inspire and help those seeking information about the disease.
Reviewed by
Margaret Cullison
Disclosure: This article is not an endorsement, but a review. The publisher of this book provided free copies of the book and paid a small fee to have their book reviewed by a professional reviewer. Foreword Reviews and Clarion Reviews make no guarantee that the publisher will receive a positive review. Foreword Magazine, Inc. is disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255.
