Facing the Cognitive Challenges of Multiple SclerosisJeffrey N. GingoldBook Details:
Published: May 2006
Publisher: Demos Medical Publishing
Editorial Review by Dorothea Cassidy Pfohl, RN, MSCN:
This poignant account of a young attorney's journey evolves with the excess baggage of recognizing and sorting out cognitive changes that presented early in the history of his experience with MS. He is unashamed in exposing his notions about disability and echoes the frustration of many who found limited expertise in the health care community, especially about this hidden and often bedeviling manifestation. Coined thinking fatigue¹ the narrative includes vignettes at home when he failed to recognize his wife, while practicing law, and even driving home when he momentarily loses his way.
Language laced with ironic humor and crisp images of a mental wheelchair express the devastation of what he terms smack-in-the-face cognitive symptoms.
The way from denial to treatment included neuropsychological testing and disease modifying therapies. He shares the adventure of accepting injectable therapy, and even embraced it by (owning the injection process).
His honesty and practical choices, like yoga over tai chi when memorizing movements became difficult, show his flexibility and determination to get on with life. The story is not always pleasant, but it is all too real.
While half of those with MS experience cognitive problems, in only 10 -15% is the dysfunction severe. Believing that having a tactical outline to live each day fully, and that MS deserves informed attention and action, he found many with similar burdens. His advocacy and altruistic service to the community assures that others will not find the limited resources he encountered in his search for care and caring. The story of peer support and chat rooms testify his conviction that sharing with others might be the best way to survive MS. Down to earth and determined, he advised celebrity David Landers to stay cooler by not wearing socks. Perspectives found at the end of chapters provide practical advice about choosing care, maximizing appointments, options for medications, disclosing at work, facing retirement and even avoiding confusion.
Not a clinical treatise, Gingold's memoir is at times a poetic testament to one man's courage and how he came to know what he was facing:
I understood numbness in a leg, because I never used to trip or stumble on the stairs.
I knew the blinding fog of optic-neuritis, because I used to enjoy the colors of bright sunny days and well-lit rooms.
I understood slowed cognitive processing, because I used to instantly sort, recall, and articulate on-point information at my litigation fingertips.
I knew delayed-recognition, because I could no longer take for granted knowing normally familiar people and objects.
His grounded acceptance of cognitive challenges as part of living with MS and willingness to confront them in print for the world to see is informative, heartening and a very good read.
About the Reviewer:
Dottie (Dorothea Cassidy) Pfohl RN BS is clinical coordinator for the Comprehensive MS Center at the University of Pennsylvania Health System, Philadelphia, PA. She has been involved in neurological clinical research for over twenty years and has specialized in the care of people with MS since 1989. She is active in the community and committed to health education. She is a founding board member of IOMSN and chairperson of the membership committee.