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Book Review - H.O.P.E.: Four Keys to a Better Quality of Life for Parkinson's

Tuesday November 15, 2016

HopeOne of the most engaging books about Parkinson’s disease was written by Hal Newsom, a Seattle-based advertising executive. Diagnosed at age 66, he lived with the disease for more than two decades. He was active in the Northwest Parkinson’s Foundation and helped start the annual HOPE Conference®, now in its eleventh year.

The success of Newsom’s little book is due in part to its author’s life-experience in advertising. Like a good advertisement, it is short, focused, well-written, personal, respectful, funny, not-too-technical, and packed with stories that drive its points home. Newsom ties what he says to examples throughout. Instead of lecturing in the abstract about how to react to the dreaded “You have Parkinson’s” announcement from your neurologist, he tells you about the reactions of Jack the disbeliever, Sue the pro-activist, Carl the acceptor, and Bill the angry one. These examples help us to see ourselves as most like Jack, Sue, Carl, or Bill, and help us to understand that the most promising responses are those of Sue — “I’ve got it. Now what am I going to do about it?” (10) — and Carl — “He didn’t like the diagnosis but what could he do about it?” (11).

Much of the rest of the book is a direct answer to that question, what could Sue and Carl — that is, what can you —  do about it? Newsom refers not to “Parkinson’s patients” but to “Parkinson’s People.” You need to think of yourself, he implies, not as a sick person with a debilitating disease but as a basically healthy person with a manageable disease:

There are tens of thousands of Parkinson’s People who are involved in vibrant lives — playing golf, skiing, swimming, walking, running, playing bridge, attending theater, operas, and symphonies, cooking, traveling, boating — even climbing mountains. These are people who are not fighting the disease but who are successfully living with it. They are not super heroes. They are ordinary people, with an un-ordinary health challenge. (8–9)

Many people advise fighting Parkinson’s. They praise the people who fight the disease the hardest and longest. Newsom is not one of those. He tells the story of Bill, “who fought the diagnosis of Parkinson’s every step of the way.” When he failed, Bill’s only recourse was “to fight a little harder” (15). The way to get along best with this disease, Newsom says, is to accept it, to recognize its power, to be glad it is not worse than it is, and to be grateful that help is readily available.

That word “help” brings us to the title of Newsom’s book, H.O.P.E — an acronym reminding people with Parkinson’s of his four keys to a successful post-diagnosis life: Help, Optimism, Physician, and Exercise. These four keys serve to organize the book.

In the section on Help, Newsom emphasizes that Parkinson’s is not disease that you should try to face alone. You owe it to your family — especially your spouse — to let them help you in small ways at the start and in bigger ways as the disease moves along. Letting them help does not mean giving up your independence or burdening others, but it does mean consulting them from time to time, being open and honest about how you are feeling and managing, and letting them assist you in accordance with your needs and their abilities.

If you are still working, Help means letting your boss know about your diagnosis, being up front about now Parkinson’s will affect your ability to do your job, and letting him or her know if you will need help.

Help means finding a congenial support group and going to meetings designed to give information and living proof that you are not alone. It is easy to convince yourself that only you have his disease and to feel increasingly isolated as the disease progresses. A support group and a couple of good friends who also have the disease will help you know that there are others who understand from the gut what you are experiencing.

The second letter in H.O.P.E stands for Optimism. It is easy enough to feel depressed if you have Parkinson’s. You know that while medications can

help alleviate some of the symptoms, none of those meds attack the disease itself, which churns on and on unchecked. How can you not feel depressed from time to time knowing that your disease will take away more and more of your independence with each passing year?

Newsom has some strategies that will help. He says that acceptance is crucial, admitting that “you can’t control this disease” (48). If you accept up front “the idea that your body will not be the same as it was before,” then you will be less likely to be depressed when your body changes as the disease progresses. Those who do not accept that and who “fight the disease every step of the way are formulating a pathway to frustration, depression, and unhappiness” (48).

Besides, Newsome goes on, there are lots of reasons to feel positive about your disease. There are, for example, many medications that can help, and there is lots of information about the disease that helps you understand what is going on. You can also remind yourself of your many past triumphs and accomplishments. And you can set new goals for yourself, like biking to the next town or trekking to the top of a nearby mountain or hill. You can plan small and large adventures for yourself. You can refuse to quit. You can find ways to enjoy what you have now and not worry about what may — or may not — lie around the corner. You can laugh and make others laugh. You can stay active but also take time to rest when your body needs rest. You can refuse to hole up or to hide. You can volunteer to help others. But mostly you can accept what comes as it comes and not try to fight it: “if you elect to take on an optimistic attitude, you can find hundreds of ways to live with Parkinson’s and enjoy a quality of life that is simply not possible with many other disorders” (64).

The third letter in H.O.P.E stands for Physician. Newsom’s point here is obvious enough: you need to find a movement disorder specialist you can trust, one who has a thorough knowledge of Parkinson’s medications. These medications, applied at the right times and in the right doses, can do wonders for your quality of life. Again, acceptance is important: “Accept the idea that you’ll probably be on medication for the reminder of your life. At first, that was a tough pill for me to swallow. But now it is such a part of me that I don’t give it a second thought” (76).

The final letter in H.O.P.E stands for Exercise. Newsom is particularly insistent on the need for people with Parkinson’s to keep moving: “ ‘Use it or lose it’ was never more true than with the Parkinson’s crowd” (87). He particularly advocates aggressive activities like running and biking, but realizes that they are not for everyone. He suggests that you find activities that you enjoy—walking, swimming, tennis, golf, whatever: “The point is, no matter how non-athletic you have been in the past, you absolutely must undertake an exercise program if you have Parkinson’s” (92). And as always with Newsom, the key word is acceptance: “Parkinson’s is such a part of me that the inconveniences of the disease seem natural. As though I were selected for some strange reason to awaken each day for the rest of my life with the reality that my body has dramatically changed. I can’t correct that. But I can accept it” (102).

Hal Newsom’s book is a plain-spoken and calming introduction to a frightening new reality for people newly diagnosed with Parkinson’s and for their families. Newsom himself died in 2015, but his H.O.P.E lives on.

Get your copy of H.O.P.E. exclusively from Northwest Parkinson's Foundation. 
Cost: $20
Call: 877.980.7500 or email virgil@nwpf.org

Peter G. BeidlerPeter G. Beidler
Peter G. Beidler

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