Understanding the Transient Nature of the Parkinson’s Experience
Coping with the unpredictability and randomness of Parkinson's symptoms
Mornings may be broken with Parkinson’s disease, but the entire day isn’t shot. There are ugly days that land me in bed, but there are also lucid windows that help me write. The lived Parkinson’s experience changes from day to day, and on any given day, fluctuations can occur in “off periods.” The Parkinson’s experience is transient, always flickering.
The problem with the transient Parkinson’s experience is that so often it’s unpredictable. This unpredictability ends up being a disabling symptom of its own.
In “Counterpunch: Duking it Out With Parkinson’s,” author Gil Thelen describes how difficult the unpredictability of the transient experience can be on family:
“An […] impediment to our marriage was my adjustment to Parkinson’s unpredictability and randomness. I could not count on anything about tomorrow, including being alive to see it. Today is all I have. Past and future matter much less than they did pre-PD.”
The transient experience of Parkinson’s may occur because the dopamine neurons don’t all die instantly. They flicker like a worn-out lightbulb, eventually failing over time. A dying neuron makes its way to neural heaven slowly.
Why is stress so devastating to people with Parkinson’s? Because these flickering pathways are asked to perform in demanding situations — physical, mental, emotional. On those ugly days when I’ve been stressed during my off period, it feels like my world is imploding.
My goal in managing Parkinson’s has been to reduce the impact of the worst of times. Understanding and then using the transient nature of the Parkinson’s experience helps me find the tools and plot the course. The flicker effect of this chronic illness is my biofeedback tool. The transient nature of Parkinson’s helps me learn what makes the flicker worse, and what makes it less problematic. I can’t stop it, but I can steer it.
In addition to its usefulness in biofeedback, another benefit of the transient Parkinson’s experience is that it gives Mrs. Dr. C the opportunity to say, “This too shall pass” and mean it. We regularly check in with each other to see how things are going. It’s a friendly, nonjudgmental conversation. I can share where I’m at in that moment. Often I can judge how long the worst will last. I share that with her during the check-in. It makes enduring the worst easier on both of us to know that it will end, and when.
Mrs. Dr. C and I have been able to work through the randomness of these ugly times by paying attention to triggers that we know will cause a flare in Parkinson’s symptoms, such as being in the car on a hot day or being in the overly crowded grocery store on the weekend. Avoid the triggers and the worst is a bit easier. Cancellations occur less often now because of our understanding of the transient Parkinson’s experience.
When I came to understand the flicker effect, I became better at predicting its occurrence. Let’s break it down. The following affect the transient experience:
- Shifts in homeostasis
- Shifts in emotional states and state shift surges
- Bio-clock distortions on both daily and monthly cycles
These modifiers can be manipulated, to a certain degree, using the Parkinson’s self-management toolkit. If I’m mindful that these events can occur, I can offset the worst by being aware of triggers. Even though I can’t always avoid a trigger event, I can affect the degree of uncertainty connected to the transient Parkinson’s experience.
We have not been shy about sharing what triggers I need to avoid (if possible) with family and friends. We set limits on how much driving we can do and factor that into the total experience of sharing time with others. There is hardly a time when we won’t show up. We are present in the moment as best we can manage.
On ugly days that feel impossible to manage, I repeat to myself, “This is transient. This too shall pass.” I need the promise of ordinary calmness to help get me through the worst of the transient episodes.
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A note of thanks to our readers who follow the Dr. C columns. Mrs. Dr. C and I are taking a short hiatus from column-writing during September to recharge our batteries. Our big project is finishing book two in the “Possibilities with Parkinson’s: Using the Self-Management Toolkit” print version. We will be back on Oct. 14 with new and fresh ideas about possibilities with Parkinson’s.
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.
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Comments
Diana Telling
I have the same “ugly “ days. I cannot stay overnight with my family now. I need all my equipment to help me get into bed etc. I have had explain to my sos, who still think l can do things that I used to . All very difficult.
Dr. C.
Wow! All of these comments moved me deeply. Read them all and had to take a couple of deep breaths. It reminded me that no matter how bad the disease gets and how bad I feel, I can always count on you folks to lift me up. I will keep writing if you keep reading. Back from hiatus, although time flew by with garden and outdoor projects. And, finalized book #2 "Possibilities with Parkinson's: Developing the Self-Management Toolkit". It is in the hands of the publisher and we hope will be available before the end of the year. Will make announcement of availability in future columns! Warmest regards to all. Together we make the journey easier. Dr. C. (and "Mrs. Dr. C.")
Dr. C.
Communicating to family about Parkinson's is challenging. Family, unless they live with you 24/7, often see only the good days and think that this how things are all the time. The unpredictability causes difficulties any relationship. Because family doesn't know being on the "outside looking in" what to expect. With a little bit of work, using the toolkit, the unpredictability can be lessened. This could help with family communications.
Dr. C.
Mike
Dr.C.and Mrs.Dr. C,
I have come to really appreciate your Columns. They are unique and insightful. As a PwP your articulations
cannot be replicated. ‘Possibilities with Parkinson’s’ is on my desk and I refer to it often. That you 2 recognize the benefits of a recharge only demonstrates your collective Self-awareness. Enjoy your time away. We are not going anywhere! Blessings, Mike
Dr. C.
Hi Mike... we're back! Hiatus was good -- made a dent in outdoor and garden projects. Got the second book off to the publishers! We appreciate your continued support. This week, back in the routine, we learned something special about recharge -- if you overdo then it takes 3 times as long to recharge than it ever did before!
Dr. C.
Mary Jane
I could've been the write of this particular article (transient nature). It made me cry and it also soothed me to know I'm not alone.
James David Mortimer
Dr C hits the nail on the head; the total unpredictability. The flickering bulb describes precisely the day to day symptoms, the sudden fragility and loss of confidence of the sufferer, the need for constant reassurance, the repetition of mundane questions, the withdrawal into self after that better day. And so it goes on, unpredictably.
Dr. C.
Hello James ~ Recognizing the importance of the flickering bulb-brain, is the first step to actually using that transient experience to change the course of the disease. Your comment is so powerful and full of emotion and reflects accurately what many of us may experience. I hope my suggestions for self-management will help alleviate some of this for you.
Dr. C.
Janne Fredsbo
Dear Mrs. and Mr. C.
Another teaching experience from you to us: Having a hiatus! Hope you enjoy wondrous inspirational times together during this time!
I enjoy and learn so much from reading you as well as reading the comments of everybody else. So thank you to you and everybody sharing.
Often when I'm reading you I think of the australian poet and cartoonist Michael Leunig. If you do not know him, here is the chance! You remind me of his gentle pen, a certain softness in your words that touches and opens up to all richness in this thing called Life. A true Blessing that you share with us your view of the world!
Please give my love to Mrs. C. also. It would be sweet to hear from Mrs. C.s life as well living with PD.
Best of Regards from - finally - rainy Copenhagen Denmark!
Dr. C.
Hello Janne ~ I like how you describe Dr. C.'s voice. I'm so pleased that it resonates that way with you, and hopefully others. I will check out Michael Leunig. Mrs. Dr. C. says hello and may at some point imbue her outlook on living with Dr. C.'s PD as well. At this point we share some strategies inside our relationship to make it easier to live with PD. We will explore that theme in future columns. Glad Copenhagen got some rain... we need more here but now waiting on final leaf-drop to mow and mulch for winter. Thanks for reaching out over the Atlantic and reading the columns. It means a lot to know there is an international connection.
Dr. C.