We're honored to feature guest bloggers Amy and Greg Maier on our blog. Amy and Greg wrote to us, asking to profile the books and materials they have found meaningful in their experience with Parkinson's disease. Amy is a senior compliance practice leader in the healthcare industry and was diagnosed with early-onset Parkinson’s disease in June 2009 after several years of symptoms. She has known her husband Greg, an award-winning writer and freelance editor, since high school. They live happily in the San Francisco Bay Area where, with Greg’s tireless support and her own determination, Amy’s symptoms have not worsened since her diagnosis.
When my wife was first diagnosed with early-onset Parkinson’s disease (PD), she understandably began to give in to despair. With almost no exceptions, everything her neurologist initially told her, everything she could find online, and almost all the readily available literature about Parkinson’s proclaimed that within a decade she would completely fall apart and become a dependent invalid. While there were plenty of support groups and books about how to manage one’s PD decline, and much information about medications, there seemed to be very little on the Internet or in print that offered hope. The predominant declaration we encountered almost everywhere we looked was “it’s bad and going to get worse very soon.” But I wasn’t buying into it, the “truism” that the love of my life was going to simply go to pieces like a jalopy.
I had no illusions that someday she would indeed require some amount of care, but also knew that that “someday” could be decades away, not necessarily just around the corner. With a lot of effort I began to find more and more material about holding Parkinson’s symptoms at bay and, in many instances, effecting changes so significant that the symptoms seemed to diminish or even disappear, defying the conventional wisdom. These books, which range from illustrated exercise regimens to firsthand accounts written by people who are living relatively normal lives and even running marathons twenty and more years after their PD diagnoses, raised the profile of hope for us.
My wife and I would like to share about these resources which, for us, have not only been inspirational and educational, but have shown us new ways to live and things we can do –and have successfully done—to keep PD’s symptoms at a healthy distance, and how to stay strong and get stronger through the experience. We’ll first highlight a book called Reverse Parkinson’s Disease (2011) by South African John Pepper. In this case, “Reverse” doesn’t mean “cure” or “get rid of”: it means taking control of PD and its symptoms and how they impact your life. Although John had been suffering Parkinson’s symptoms since 1963 he was only diagnosed with Parkinson’s disease in 1992 and, ten years later, wrote the first edition of this now-expanded volume. He is currently 78 years-old, has been the president of Parkinson Association South Africa four times, and has lived with the symptoms of PD for over 45 years. He now requires no medication for his symptoms. How can that be?
John’s personal story about his journey through Parkinson’s disease, his setbacks, achievements, discoveries, disappointments, and ultimate triumph, flies in the face of the generally-accepted PD prognosis of unavoidable and relatively rapid decline. Throughout this inspirational book, John Pepper repeatedly emphasizes his refusal to accept the pervasive, grim attitude conjured by the mere mention of PD, and questions why people –particularly those diagnosed with PD—apparently lack access to positive information about people like him who have found ways to slow, hold off, and even reverse some PD symptoms. He believes the lack of hopeful information feeds depression and negative attitudes: “You cannot maintain or improve your quality of life if you believe that it is not possible.”
The impact of belief in oneself runs through this book like a rip tide, carrying away a lot of so-called conventional wisdom while relentlessly hammering home the message that a strong positive mindset is not only essential when staring down PD and taking it by the scruff, but it is powerful and permeating in all aspects of one’s life. John reminds readers that few things in his experience are irreversible, and that like many stroke victims, PD patients willing to work hard are discovering just how much the human body –including our brains—can heal itself.
Throughout, John demonstrates the vital role a positive, supportive and loving spouse plays in the process of taking control of PD, along with offering commonsensical observations and thoughts about eliminating negative stress from one’s life, attitude and diet. He also explains how for him, a longtime integrated approach of strenuous exercise –particularly aerobic walking—and brain exercises have enabled him to regain and maintain his physical and intellectual flexibility and balance. John provides a list of things he regularly does to keep his mind sharp, from reading and playing bridge to bowling, tennis, puzzles and games. Stimulation of the mind is essential, and the physical exercise –in particular the aerobic walking— is not optional.
The vigorous walking, when done so strenuously that it puts one on the verge of having a fight-or-flight response, has been shown to increase the brain’s production of Glial cell line-derived neurotrophic factor (GDNF). This chemical is, in effect, the brain’s own “repair kit” for PD, having a potent neurotrophic effect particularly, but not exclusively, on dopaminergic neurons. He rightly cautions readers to not only obtain the “OK” of an MD before embarking on anything he suggests, but reminds us to pace ourselves –in exercise and in our lives: when he looks back over his own life and career he can only now see the vital importance of a balanced life that does not consist mostly of work and projects, but which also includes healthy amounts of vacations, exposure to beauty, music, and contemplative time. These elements are essential parts of integrated PD management and health.
Essential adjuncts to the brain exercises and aerobic walking are strengthening exercises and movement awareness. John highlights what big changes awareness can have on one’s movements, what some might call “mindfulness.” He writes that PD “affects the subconscious brain’s ability to carry out its function properly, because messages do not get to the limbs on time, or even at all,” but “consciously controlling each individual movement” has allowed him to take control of his body when eating, drinking, walking, singing, and so forth. The key is “practice, practice, practice,” and a lot of patience.
Slowing down, halting, and even rolling back Parkinson’s symptoms takes pacing and time, sufficient positive changes in mental attitude, commitment, and action, and these things vary from individual to individual. And while John makes it clear that not every individual with PD will or even can benefit from his own experiences and current regimen, he is hopeful –even adamant—that the sooner one begins implementing his suggestions or some kind of sensible but aggressive regimen, the better that person’s chances are of taking control of Parkinson’s disease.
Persons diagnosed with Parkinson’s are, in John’s opinion, largely over-medicated with drug therapies –particularly dopamine replacement therapy—being used as frontline response rather than outlook and lifestyle changes. This is discussed in various chapters along with medications and articles about them. There are four helpful appendices in which John details his own symptoms and his observations about them; a selection of supportive letters from others as well as discussion about a loving, positive spouse and access to a support network; the necessity of exercise, and finally a discussion of various medications –common and uncommon—and their effects, accompanied by articles about them as well as alternative and adjunct therapies, music, and synapse function. The author also cautions again that different people may need different combinations of medication and physical and mental exertion. PD has no cure but it is, in John Pepper’s experience, more manageable than most people are led to believe.
Once nearly bed-ridden, John now rides a bicycle, walks unaided on uneven terrain; climbs stairs without assistance, engages in light carpentry; swims, canoes, drives an automobile, paints, sculpts, plays chess, has taught himself French, and he challenges you –as he did us—to consider and accept a new approach to Parkinson’s disease. If one takes John’s book to heart, the “ending” is not only farther away than you may think, but with a lot of effort it is in your hands, much more hopeful, and happier.
You can check out John’s website here: http://www.reverseparkinsons.net/home.html, can sign up for his newsletter, and can order his book there or from Amazon.com.