[.ca] Saving Milly: Love, Politics, and Parkinson's Disease (ISBN 034545197X)

From Amazon.com:
Morton Kondracke chronicles his wife's 13-year battle against Parkinson's disease with the same attention to nitty-gritty details and shrewd understanding of how power works that distinguish his political commentary. Kondracke doesn't airbrush how horrible it is to have Parkinson's (the squeamish should avoid the passages about Milly Kondracke's two rounds of deep-brain surgery), or how difficult it is to live with someone who does (the mere recitation of his caretaking activities will exhaust most readers). He provides unvarnished accounts of the battles among members of the Parkinson's Action Network and other disease activists competing for limited federal research funds, until they got real and decided to fight to double the National Institutes of Health's budget so everyone would get more money. And he refuses to offer a feel-good ending charged with false hope; the book's closing pages include a grim account of the Kondrackes' discussions about what to do if she becomes unable to swallow. (They settled on refusing the feeding tube and allowing her to starve to death, which "is not painful if the patient doesn't take liquids.") Offsetting this bleak material is a vibrant, loving, and equally candid portrait of the indomitable Millicent Martinez Kondracke, who began up-ending the admittedly self-absorbed, drivingly ambitious Kondracke's life from the moment they met in 1966. He'd planned to marry an Ivy-educated heiress who could further his career; instead he was swept away by a Mexican Jewish American firebrand who challenged authority on everything from a botched car repair to the school system's poor handling of their daughter's dyslexia. Seeing how powerful she once was, we share her anguish as she descends into disability--and her husband's hope that, despite all the current scientific projections, research will provide a breakthrough in time to save Milly. --Wendy Smith

Saving Milly: Love, Politics, and Parkinson's Disease:
A wonderfully gripping book, especially for those who have been touched in some way by Parkinson's Disease. Morton Kondracke is bravely honest about his relationship with Milly and about his own shortcomings. His knowledge about the politics of medical research and funding is enlightening and inspiring. It is a poignant love story that will touch everyone, and push many towards advocacy. My father was diagnosed with Parkinson's Disease approximately 15 years ago, and lives with many of the same difficulties that Milly has endured. Though emotionally difficult to read at times, it is nearly impossible to put down. Highly recommended!

Moving Account of a Devastating Illness:
This country has an aversion to sickness and death, two things that will in time touch each and every one of us. Not a pleasant thought. For 18 years I watched my own mother combat, with no hope of winning, the same illness Milly is fighting. Morton Kondracke is to be commended for sharing Milly's story. Heart wrenching, Saving Milly is by no means an easy read, but it is a must read. It is more than a story about Parkinson's disease. It's also a story about love and commitment and, yes, obligation, but also of politics. And all of it will open your eyes as well as your heart. Kondracke doesn't sugar coat Parkinson's, he displays it in all of its vulgarity. Nor does he paint himself a saint in being Milly's primary caregiver. He gets angry with her, loses his temper, shouts at her. But it's not really Milly he is angry with. It's the Parkinson's. Yet how does one vent one's rage at a disease? He also writes of the politics of Parkinson's, how, unlike cancer and AIDS, research for this debilitating disease is under funded. Kondracke shares his story with a journalistic detachment, but even so the reader will find him or herself moved by his plight and the plight of Milly. His message is simple: a cure for Parkinson's has been agonizingly near for a long time, but money is needed now. He knows that were a cure discovered tomorrow it would be too late to help Milly, but his fight goes on so that others might be saved from suffering her fate. My hat is off to Morton Kondracke for sharing this side of his life, a side that one day most of us will experience firsthand, but also one which too many don't wish to glimpse, preferring instead to pretend it won't ever happen to them.

Have Read it and Wept:
I first heard about Mort kondracke's book via a report on NPR. I was then contacted by a movie producer to see if I wanted to write the script adaptation for one of the networks. I read the book and said I couldn't write the adaptation but I also couldn't NOT write it. Since then, this book has occupied almost every waking moment. The horror of this disease, plus the added - and shameful - horror of a government - your government and mine - that will not support the kind of research and treatment that the scientific and medical community say they need so they can cure this disease in 5 or so years, is one of the main messages of this book -- although Mort is in some ways too much of a gentleman (or politician) to come out and say it that way. Mort writes about love and devotion and how the power of the human heart can transform us into making great changes in ourselves that seemed impossible until something big comes along - like Parkinson's or any other kind of personal or family tragedy. The ultimate message, for me as a reader and as a writer, is that no one knows why Milly got Parkinson's, but everyone knows she doesn't have to die from it. And if she does, it won't be because of science but because of politics. That is the REAL tragedy.

Extremely moving story about a couple and their struggle:
Morton Kondrake's book is about much more than his wife Milly's Parkinson's disease. It's also about their life together, their marriage, the differences that caused friction between them, Kondrake's struggles in his career and those to overcome his own weaknesses, including, for a time, alcoholism. What emerges is a story of quiet heroism, both his and Milly's, as she defies the odds and continues to prove that her will to live is greater than her despair. Kondrake also writes about the politics of research and fundraising for various diseases, and how some diseases have more cache than others, even if the disease garnering more print and air time afflicts far fewer people than other devastating ailments. This may not come as a shock to people but it is still important so that we can all do what we can to campaign to make disease research and funding more equitable. I was most touched by Kondrake's unsparingly honest account of his own shortcomings as a man, a husband, and father, and how Milly, and eventually, her Parkinson's disease, made him grow into a far greater man than he was before. The fact that this is a true account makes this book very significant, and more moving than any fiction could be. It's impossible not to read it without tears.

Connections Count... The Politics of Parkinson's:
In order to learn more about a disease that has affected several family members, I read Saving Milly with great interest. I was quickly pulled in. Kondracke writes with honesty about a strong and vital woman, his wife, as well as what it means to be caregiver and spouse to one afflicted with Parkinson's Disease. He has much to say in praise of his Milly, while often taking an unglorious view of himself. He admits to insecurities and vanities and weaknesses few of us would admit to in public, let alone to ourselves. Most admirable, perhaps, is the love story intertwined with the story of how both Mort and Milly, each in their own way, cope with PD. In a time when so few relationships survive the minor bumps and bruises of everyday life, this one has survived a major crisis, grown even stronger for the testing. When these two married for better or for worse, in sickness and in health, and with a promise of fidelity... they meant it. Wonderful. While much of what Kondracke writes about the symptoms and treatments of Milly's disease were, in basic outlines, already known to me, I was intrigued to read his insights into the politics of a disease. I was not surprised... yet nonetheless dismayed. Money rules. Connections count. Nothing like celebrity to shine a spotlight on a particular illness. Hrmph. But so be it, this is reality. And to see it in sharper light of realistic approaches and political power can only help us play the game more effectively. None of us should be unaware of the lies we are too often fed by politicians, but all of us should hold those we vote into office accountable. In the end, it is most important to understand that causes close to our heart must be championed if they are to be cured. Kondracke has given us a window onto a disease that has or will touch many of our lives, a disease that has gotten too little attention, especially prior to exposure gained by Michael J. Fox (who also makes an appearance in this book). It may not be the most typical experience with PD, especially in terms of the kind of care he could provide Milly because of his own celebrity and his own higher income bracket, but that is of less importance than the story of survival achieved with love, grace, compassion, and insight.