Finding the Workarounds to Help Manage Parkinson’s Disease
Parkinson’s is a progressive illness. It’s continually changing the brain and body as we grow older. Along with changes from my Parkinson’s, my brain is also changing in response to its “owner’s” demands.
I’ve proposed that it’s possible to use this natural neuroplasticity to slow the progression of Parkinson’s, or more accurately, to decrease the disabling effects of the disease as it progresses. I’m learning new ways to live better by applying workarounds.
This is the main goal of my Parkinson’s self-management toolkit: We can act or think in new ways that serve as workaround solutions to address the Parkinson’s effects on brain and body functions. Otherwise, we act in an automatic way, relying on familiar routines or actions that have served us in the past — and often don’t serve us so well now.
There is no neutral state of being. Either we embrace change, or we live with the consequences.
I’m a firm believer that one of the best ways to slow the disabling consequences of Parkinson’s is to self-manage as early as possible. Retraining the brain in the wake of the progressive disease damage is easier when there are more brain cells to work with. The hard part, as it stands now in our current understanding of Parkinson’s, is arriving at an early diagnosis.
The first step after diagnosis, for me, was making a commitment to do everything possible to live a long and productive life.
In the 2018 editorial “Life expectancy in Parkinson disease,” from the journal Neurology, the authors write that, “As of 1967, the answer to the question, ‘How long have I got, Doc?’ posed by a patient with Parkinson disease (PD) was 9.4 years from onset to death. This was the era before levodopa and before most of the ‘atypical parkinsonisms’ other than postencephalitic parkinsonism were distinguishable from PD. By 1993, post levodopa but pre-deep brain stimulation, the figure had improved to 13.1 years, and by 2016 to 14.6 (±7.7) years.”
The data say I can live a long life. I’ve held on to that premise.
The second step is to admit I often don’t know which paths to take. My PhD and clinical experience didn’t give me all the answers. It’s one thing to work with a brain-injured client. It’s another to realize that “patient” is me.
When I started to experience Parkinson’s, I was living that brain-injury phenomena up close and personal. There were few answers that didn’t neatly wrap up the diagnosis, symptoms, and the future. I questioned every new symptom, reluctantly acknowledged the increasing challenges, and had the overall feeling that change was occurring too fast.
Most of my time now is spent exploring positive adjustments I can make. Developing the Parkinson’s self-management toolkit, which I call TBM, has helped. If I can continue to work on threshold management, if I can identify ways to use brain training to redirect my thinking, and if I am aware of mindful movement to avoid physical injury, all these changes can make my life with Parkinson’s better.
Modern medicine tends to assess successful disease management as following a path to a cure. That outlook comes with the founding premise that there is someone or something out there that will make this all go away. On its coattails is the abject resignation we feel when we hear there is no cure.
Encountering the “no cure” reality, the bonded twin of Parkinson’s, brings with it the lure of giving up. But I’m not ready to give up.
Developing and working with TBM is not a cure for Parkinson’s. It’s designed for someone, like me, to manage the disease. It gives me ways to enjoy life with Mrs. Dr. C. I cannot expect someone else to cure me. I must take responsibility for management of my Parkinson’s.
I can embrace a sacred life of living well, compassionate to myself and others. I can always try to “show up” — to be present in the moments when I can and know when I can’t. I’m trying to achieve ordinary calmness and practice TBM daily. Sometimes I end up throwing a pity party for myself. But I try to avoid that dark thinking and find ordinary calmness with a quiet mind.
I hope I can continue to slow the progression. This year seemed like I wasn’t succeeding. But it was also what I call a plateau year — a time when things get worse faster and then level out. Self-management techniques have helped.
What is the “new normal”? I continue to seek out the workarounds to try to manage the worst. As a writer advocating for the Parkinson’s community, there is always this lingering voice of hope that I can make a change not only in my Parkinson’s, but for others as well.
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.