Book Review of Saving Milly: Love, Politics and Parkinson's Disease

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Saving Milly: Love, Politics and Parkinson’s Disease by veteran political journalist and columnist Morton Kondracke (Public Affairs/Perseus Books, 2001, 275 pages) is a touching story of Parkinson's disease from the caregiver's point of view. It is also an inspiring love story and a first-person account of the politics -- yes, the politics -- of federal funding for Parkinson's research.

In 1987, Kondracke's wife Milly notices that she can’t write a normal letter "K" and that her handwriting is becoming cramped.

She also has numbness in her fingers. Milly is initially misdiagnosed but then, at the age of 47, a doctor diagnoses her with Parkinson's disease.

Milly takes the diagnosis hard and battles depression throughout the illness. Milly and her husband try just about everything to beat the disease, including the prano cure, which appears to be something like the "laying on of hands" and energy manipulation. In the beginning stages of the disease, Milly tries all kinds of medicine and inevitably takes a combination of pills that can be lethal. Finally, a competent neurologist steps in and gets her on the right medicines -- and off the wrong ones.

Milly also undergoes two day-long brain surgeries. The first: a pallidotomy, where a tiny electrical probe is placed in the brain to destroy small amounts of brain cells. The second surgery implanted a device to support deep brain stimulation. Neither surgery worked for her.

Throughout her battle with Parkinson's disease, Milly undergoes multiple falls and often has to be rushed to the emergency room for stitches. As the disease progresses, Kondracke continues to chronicle their experiences, to which many readers will relate.

His love for Milly is visceral and deepens throughout their ordeal.

He gives us the facts about his own alcoholism and his recovery in Alcoholics Anonymous. His admirable, balanced and sober spiritual awakening in AA allows him to better cope with Milly’s growing dependency on him for all her needs.

Along with the compelling story of Milly’s battle with Parkinson's disease, Kondracke gives us an insider's view of political advocacy on behalf of research funding. Surprise, surprise! Federal research dollars go to whichever group is most powerful and does the most effective lobbying. In the end, though, love trumps politics: The couple finds a way to love one another more deeply in spite of the disease -- and that’s a story worth telling over and over again.

For me, the one failing of this powerfully moving book was its sparse detail on the politics of Parkinson's disease research. While Kondracke does provide the broad outlines of some of the political history surrounding Parkinson's disease research funding, I would have liked some greater detail on the nuts and bolts of creating as effective a national lobbying effort as some other disease groups have done. Kondracke starts to do this when he describes his interview with one of the leaders of the lobbying effort around HIV/AIDS research but then he leaves it at that.

Perhaps his aim was just to call us to greater efforts on behalf of Parkinson's disease research. If so, he has done that and much more in this beautiful book.

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