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Posted August 29, 2004
Read with caution
This book is very simply written, although it is not wrought with grammatical errors. However, it is full of misinformation that may confuse people living with ALS and their families. The book refers to a home health aide as a nurse. The two have very different roles and educational levels and must not be confused. It also is fraudulent to have a home health aide provided by Medicaid cook for a family and to perform any services not related to the patient as described in this book. One should not purchase a wheelchair by going directly to a showroom as described in this book, but should have a thorough examination by a health care provider, preferably a physical therapist, to prescribe the correct chair. A physical therapist would write a letter of medical necessity to the insurer for the wheelchair to be covered rather than the patient paying out of pocket for an inappropriate chair as described in this book. My own patients who are on Medicaid and struggle to live with degenerative diseases would be irritated to read of this woman's and her family's indulgence. I have known no patient on Medicaid who sleeps on satin and cashmere bed linens. They don't name drop celebrities and take private jets to vacation in Puerto Rico. The book even includes errors of personal nature. The author states her mother and sister Alison accompanied her to her appointment when the neurologist diagnosed her. But she recalls crying in the hall with her other two sisters at the time of diagnosis. The description of a family that pulls together at a time of need is nice but patients may find the misinformation confusing and the disconnection with their own situations distressing. The ALS Association and health care providers offer better information on the science, nature, and recommended care of the disease.
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