Seeking What Is Possible: Start With the Impossible
I was diagnosed with Parkinson’s disease at 64. That is close to the average age that most Parkinson’s patients are diagnosed. My goal has been to live to the age of 85, one year beyond the age of my grandfather. In my lineage, he held the record for years lived.
But this chronic illness has given me doubts — not only doubts about living that long, but also nearly overpowering fears about the end of my time being filled with suffering. I don’t want 20 years of misery with this chronic disease if I can do something about it.
My new book, “Possibilities with Parkinson’s: A Fresh Look,” describes my search for answers. The book took seven years of full-time work. One of the book’s goals was to describe a personal brain rehabilitation program I could use to live well through my senior years. Another was to describe a theory that explains why patients with PD are so different from one another. Now that the book is published, life is affording me the opportunity to see the intricate web of connections behind both the design of brain rehabilitation for PD and the theory to explain individualized PD presentations. I want to live better with PD. The most difficult obstacle is believing it can be possible.
Based on my research and clinical experience, I started with some basic assumptions:
1. PD is a dopamine nerve-destruction disease.
2. The diagnosis requires specific symptoms — bradykinesia, rest tremor, muscle rigidity, and postural instability — used by the medical community. But these are only the motor symptoms and do not take into account the nonmotor presentations.
3. The disease is affecting the brain long before the diagnosis. Symptoms of Parkinson’s and the rate of progression differ among individuals. The National Institute on Aging cautions, “Sometimes people dismiss early symptoms of Parkinson’s as the effects of normal aging. In most cases, there are no medical tests to definitively detect the disease, so it can be difficult to diagnose accurately.”
4. The brain is plastic, continually molding itself to the changes of disease, including our reactions. Our brain is changing prior to diagnosis and is influenced by the lifestyle of the patient. Clinical trials proposed in Sweden suggest that, “Since there is currently no cure for PD, findings of neuroplastic brain changes in response to exercise would revolutionize the way we treat PD, and, in turn, provide new hope to patients for a life with better health, greater independence and improved quality of life,” according to a study published in the journal BMC Neurology.
I strongly believe that individualized presentation is a hallmark of PD. The spectrum stage theory I proposed can explain why, despite some similarities, many PD patients do not always present with all the cardinal symptoms. A medical provider might not easily confirm the diagnosis on the first or second visit. I’ve heard from several patients that their symptoms didn’t match the classic presentation of Parkinson’s, and therefore, they experienced the disease long before the medical community would recognize it. Their brains were being shaped long before diagnosis.
Medical doctors don’t write up detailed rehabilitation plans for those who suffer from brain trauma. It’s not their expertise. In my experience as a rehabilitation clinician, it was my role to design a model to explain neurological breakdowns and then provide a model for working around the deficits. I took this same process and applied it as a rehab plan for myself.
For me, what is possible is strengthened by the science that supports bringing the possible into reality. The spectrum stage theory helps explain the hallmark PD features of individualized presentation. It also points us to the path of possibility, a path of brain rehabilitation using the second dopamine center.
Our reactions to the slow nerve damage of PD prior to diagnosis create coping strategies that can get in the way. For instance, we may believe in the truth coming from the broken PD brain. In all actuality, it may just be a faulty perception on our part. We can train our plastic brain to react in a new way, one that helps us live with chronic illness. The answer to why PD looks different from one person to another may also be an answer to what is possible.
If I could go back in time to when I first received the diagnosis and give my younger self advice, I would say, “There is much more possible than you know. Go and seek it out. With all the individualized presentations and variations, isn’t it possible that we can find alternative solutions that teach us to overcome the impossible?”
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.