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Parkinson Pete Reviews "Parkinson's Warrior" by Nick Pernisco

Friday November 05, 2021

Nick Pernisco, Parkinson’s Warrior: Fighting Back and Taking Control. Seattle: Connected Neurosciences, 2019. xxIv + 205 pp.

In the spring of 2020, just as my Parkinson Pete on Living and Dying with Parkinson’s Disease came out, another book about Parkinson’s was brought to my attention. It had an optimistic title that seemed to signal that this terrible disease called Parkinson’s was vanquished—or was about to be. It called attention to bold “Parkinson’s warriors” who bravely “fought back” and “took control” of their enemy, Parkinson’s disease.

Nick Pernisco is quick to admit that he is neither a doctor nor a lawyer. He is a former college teacher who was knocked for a loop at age thirty-three by a diagnosis of young-onset Parkinson’s disease. In the ensuing years he read every book he could find about Parkinson’s: “What I am is a well-informed, engaged Person with Parkinson’s (PWP). My intent is to provide you with information and inspiration to help guide you through your Parkinson’s journey...This is not a medical book, per se. This is one Person with Parkinson’s reaching out to hold the hand of another Person with Parkinson’s” (“Preface,” p. ix).

Since it is based largely on his own experience with the disease, Pernisco’s book will be particularly helpful to people who are diagnosed young—that is, in their thirties and forties, rather in their fifties and sixties, as most of us are. They will be particularly interested in his discussion of questions like these: Should I tell my employer about my diagnosis, or will that harm my chances for a contract renewal or a promotion? As my symptoms become more troublesome or more obvious, should I ask for special accommodation or work conditions? When I apply for admission to graduate schools or for new employment opportunities, should I or must I mention my diagnosis? What about applications for health insurance? If I tell them I have Parkinson’s, will that disqualify me because I have a “pre-existing condition”? If I don’t tell them and I get approved, can they later rescind their obligation to cover my medical bills? Is it considered to be a kind of perjury to conceal my diagnosis?

Another category of readers who will be especially interested in Pernisco’s book is people who feel depressed about their diagnosis. These readers will nod knowingly when they see him talk openly about his own depression: “When I was first diagnosed, I went through a long spell of depression and uncertainty. Before Parkinson’s, I thought I had my life figured out, but everything I was working toward went out the window after receiving the diagnosis bombshell. I felt like my life was over and I was emotionally lost” (“Introduction,” p. xiii). He talks later about the two kinds of treatments for depression, talk therapy and chemical therapy.

Bombshells and bullies

Pernisco likes to use military imagery. He refers to his diagnosis as a “bombshell.” He hopes that his book will motivate people with Parkinson’s “to fight like you are battling a fierce enemybecause you are...It tries to win the war every single day of our lives. It thinks it has the upper hand and that it will defeat us. But we can combat it” (“Introduction,” p. xvi).

Alternatively, Pernisco characterizes the disease as a clever but mean-spirited schoolyard bully who loves torturing his smaller and weaker enemies: “The disease believes it can take over your life by taking over your body, and perhaps in the past it did. However, today we know how to fight back, and just like fighting back against any arrogant bully, it’s well worth the challenge to put it in its place. No other non-fatal disease sets out so boldly to torture its victims...It traps you in your body, unable to move, as if you were tied up and gagged in an old Western. The only thing is, the sheriff isn’t coming to the rescue” (p. 24).

I am not sure that Pernisco’s method of characterizing a disease as a vicious but rational military enemy or as a nasty schoolyard bully works for him. How does thinking of the disease as a malicious enemy willfully trying to destroy us help us to retaliate? Does Pernisco have the right to assume that we all want to “retaliate,” that we all want to be “warriors” who “fight back”?

Pernisco tells us that “fighting back against the disease is what we do. We are Parkinson’s Warriors!” (p. 34). Does thinking of ourselves as warriors in mortal combat with a clever disease make us any more likely to succeed? Pernisco appears to think that to win the war against Parkinson’s is to find the cure for Parkinson’s: “There is currently no cure, so we’re not talking about winning the war” (p. 45). But he is talking about winning the war by finding a cure. He has witnessed the horrible price to be paid if no cure is found: “I’ve seen people in this late stage of Parkinson’s, and it isn’t pretty. People in wheelchairs crouched over, drooling on themselves” (p. 30). He hopes to live another twenty or thirty years before he gets that way, and he hopes that “there will be a cure for the illness by then” (p. 31). He knows that “a common refrain in the Parkinson’s community is that a cure for Parkinson’s is just around the corner, just a few years away. I constantly tell people that I think a cure for Parkinson’s is about five to ten years away. I’d like to think this is true, but I’ve been saying this for about ten years now, and I don’t think we are much closer to a cure now than when I was first diagnosed...A cure is still not on the horizon” (p. 186).

I see a curious disconnect between Pernisco’s call for us all to become Parkinson’s warriors and his hope for a cure for the disease. He never quite shows how thinking of the disease as a powerfully evil military foe will in any way hasten the discovery of a cure: “Let me make this absolutely clear: at this time, there is no cure for Parkinson’s disease” (p. 118). How, then, can he say, thirty pages on, that “I’m optimistic that we are nearing a cure” (p. 148)? He says only that “the good news is that there is a lot of money and intellectual power behind the search for a cure” (p. 186). But there has been that for a couple of decades now, and still no cure is in sight. In the end we are left not with a cure but with another four-letter word: “The biggest word in the Parkinson’s community is ‘hope.’ Without a cure, all we can do...is hope that a cure or disease-modifying therapy comes sooner rather than later.” Meanwhile, he says, “we wait for the big day when we can eliminate the Parkinson’s from our bodies for good” (p. 141). Pernisco admits that the pharmaceutical companies have no interest in finding a cure, since doing so would cut into their profits by decreasing the money we Parkinson’s patients currently have to spend on expensive drugs that treat the long-term symptoms of the disease, but do nothing to end it.

So what do we do? Do we continue to take the carbidopa/levodopa medicines that we know do nothing to attack the disease itself but only mask some of its worst symptoms for a while longer? Do we wait patiently and hope for a cure that we know is unlikely to come? Is that the way a Parkinson’s warrior fights back and takes control?

Like most optimists with Parkinson’s, Pernisco tends to avoid talking about death. He is far more interested in telling us how to avoid death for as long as we can so that when the cure does come, we will be alive enough to profit from it.

My own approach is somewhat different. I encourage people with Parkinson’s or other progressive, debilitating, neurololgical diseases to make full use of the medicines and surgical procedures that do offer temporary relief from the worst symptoms of their disease. Rather than invest too much energy anticipating a cure that we have no reason to think is in the offing, I encourage people to learn to think of death not as an enemy to take up arms against but as a friend to be welcomed with a warm embrace.

Parkinson’s is not usually considered to be a fatal or terminal illness. Most of us have been told by one neurologist or another, “You will die with Parkinson’s not of it.” Some go on to tell us that, “Parkinson’s will not shorten your life, just make your life more miserable.” Others tell us that, “Parkinson’s will not kill you, but there may come a time when you wish it would!” I commend Pernisco for telling his readers that most people with Parkinson’s die either from a bad fall or from pneumonia, but he mentions these “two big killers” only to tell us how to avoid dying from them:

Since there is no stopping the disease, many people decide to take the morbid move of planning for their demise. While this is a good life strategy in general, it’s especially important for a PWP who has an uncertain future. The important thing here is to make sure there is a plan in place if anything should happen to you, but don’t let it overtake your mind to make you feel like a terminal patient. You are not. It’s always a good idea to have a will, decide on burial options and end of life directives, as well as have a sheet with all of your passwords, but then when that is done, you should forget all about it. That is for just-in-case. Your goal is not to live your life as a terminal patient, but to live your life as someone who has an illness but is going to do everything they can to fight it. (p. 40)

Notice the optimistic assumptions that Pernisco makes here: that our goal is to “forget all about” death, that it is wrong to think of ourselves as terminal patients, that we should not risk falls and pneumonia so we are ready when we get cured to get going on that “long life” that Pernisco thinks we all have a right to expect, or at least to hope for. That may be useful advice for some readers, but it may dangerously blur the lines between expectation and hope, between a terminal patient and a person who lives in grateful acceptance of the knowledge that we will all one day die?

A friend of minewe both have Parkinson’s—occasionally reminds me that “life is terminal.” We can allow that fact to poison what time we have remaining. We can fight the fact that we are mortal, or we can set ourselves the task of appreciating what a wonderful life we have had and enjoying what life we have left. We can resent the fact that somedayperhaps someday soonwe will die, or we can look forward to finding out what lies beyond the terminal.

 

About Parkinson Pete:

After teaching English for forty years at Lehigh University in Bethlehem, Pennsylvania, Peter G. Beidler moved to Seattle in 2006. Not long after he retired, he was diagnosed with Parkinson’s disease. He has volunteered frequently over the years since then at NWPF. He and his wife Anne have generously contributed most of the books that constitute the NWPF’s lending library. Pete has published two important books about the disease: Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books about Parkinson’s Disease (2018) and Parkinson Pete on Living and Dying with Parkinson’s Disease (2020). Copies of both books are inexpensively available from Amazon. Published here for the first time is his review of Pernisco, Parkinson's Warrior (2020).

Peter G. BeidlerPeter G. Beidler
Peter G. Beidler

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