The debilitating effects of Parkinson’s disease can ravage those affected, but they also alter the lives of friends and family. The Bastard Disease chronicles just some of the struggles author Martin Soloway has endured while caring for his wife, Sandy. A pharmacist by trade, he’s well-qualified to evaluate what has and has not worked to alleviate her symptoms.
Soloway writes as equal parts objective observer, loving spouse and overwhelmed care provider. He makes it clear that things change rapidly in the life of a Parkinson’s patient: “The previous paragraph was written when she was more active. In the past four weeks, the incidence of her falls has substantially increased. One day this past week, it was like she fell off a cliff. She had difficulty walking, and her cognitive abilities and hallucinations were frightening.”
Sandy’s case is further complicated by diabetes, which makes it harder to find a treatment protocol; a medicine that’s good for one thing may well be terrible for something else.
Stories about Sandy’s decline are harrowing, but occasionally humorous, too (her hallucinations throw the family and the neighbors into a tizzy with regularity). Detailed discussion of her medication and finding safe, accessible ways to travel with a patient who regularly falls are clearly presented.
The Bastard Disease is highly focused on Soloway’s particular experiences and isn’t likely to interest readers unaffected by this illness. Those diagnosed with or caring for someone with Parkinson’s will find ample information, although the book would be more helpful had it been better organized. Despite specific chapter headings (“The Disease,” “Caregivers,” etc.”), the author only loosely follows these topics.
Soloway’s book offers more of a memoir than a narrative devoted to a systematic look at Parkinson’s. Still, the author bravely made his situation public to help others, and despite any presentation flaws, his short book admirably fulfills that ambition.
Also available as an ebook.