The Emotional Flicker Effect Has Its Triggers and Precursors
One of the major goals I have for managing Parkinson’s disease is to decrease the frequency and intensity of the “ugly days.” Ugly days are episodic in my life but still require managing symptoms every day. If I can keep the worst of the symptoms at bay, I — and those around me — can avoid the downward spiral of emotional, psychological, and physical dysfunction.
Before I was diagnosed in 2014 and started on the treatment levodopa, the ugly days were crushing, totally disabling, and completely unpredictable. Mrs. Dr. C. often said she felt like she was walking in a minefield.
Emotional lability and the neuropsychological distress associated with it, which manifest in Parkinson’s patients as anxiety or depression, are recognized, but are rarely addressed adequately. Outbursts include fits of both laughing and crying, emotional lability, and emotional dysregulation. Sleep disorders and impulse control are also identified in some Parkinson’s patients. Despite the various terms used to describe these disorders, they are often missed and even sometimes misdiagnosed.
Now, seven years after my Parkinson’s diagnosis, my ugly days have started increasing in intensity and frequency. Granted, I’ve been through a lot in the last couple of years. I’m not alone in dealing with a pandemic and social isolation. We have also relocated to a new environment. Moving is always stressful, but it has already increased our quality of life, as long as I can survive all the transitions and challenges of a progressive illness. I can’t increase the levodopa due to side effects. My choice is to either give up — meaning, live with the results of these threshold-crossing events — or design a new brain rehabilitation program for myself.
I describe the basic elements of this program in my new book, “Possibilities with Parkinson’s: A Fresh Look,” and I continue to expand on these ideas in my columns. I’ve identified my own episodic symptoms as a “flicker effect” and use “threshold management” to monitor and adjust when symptoms start to escalate. I’m changing my actions to decrease the flicker effect and the impact of ugly days. The daily application of both threshold management and mindful movements has made a big difference.
Still, life isn’t easy. I still get a monkey wrench thrown into my healing routine. Recently, extreme emotions roared back because a broken water heater forced cold showers on me for more than a week, but the experience reaffirmed that I could minimize the impact of disruptions. It was possible.
When I first began sitting and observing the ugly days, instead of running away or lashing out, I was overwhelmed. Flicker effect events are tied to the eight regulatory systems monitored by the two dopamine centers, and trying to sense each individual system dysregulation through all the noise was extremely difficult. I needed a strategy to identify what triggered these dysregulation events and what the flicker precursors were for each of the regulatory systems. A trigger (by my definition) is any response — such as feeling fatigued or dealing with stress from an unexpected event — that occurs out of my control and that makes the flicker effect worse.
Trying to keep a certain schedule or meet others’ expectations when I am feeling overwhelmed are triggers. I try to avoid as many triggers as possible.
Some epilepsy patients experience an aura that serves as a precursor to a seizure, and I am able to note something similar at the beginning of a flicker, alerting me that I need to put threshold management in place. These precursors are the subtle hints that something is amiss, and I need to be aware of them before the flicker surges beyond my control. I describe such a precursor in my column on the histamine flicker effect.
Sometimes, it is not just a Parkinson’s patient who can identify precursor events. One reader said she could tell when her husband is about to start thrashing during his nighttime sleep. She was so attuned to his Parkinson’s symptoms that she had become able to calm him with her touch to prevent an escalation.
The flicker effect can also be controlled with lifestyle changes, such as exercise or meditation, that act as buffers to decrease it and improve one’s tolerance and resilience.
I’m continually exploring and implementing new perspectives of self-management in ways that reduce symptoms and create a life with Parkinson’s that is filled with possibilities.
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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.
Comments
Dorothy leeds
Although I had a Dat Scan from which my Parkinson’s diagnosis was determined, I do not have any of the dark, ugly days which are often spoken about. My only problem is that I am unable to walk without the aid of my rollator. My balance has clearly been badly affected but I do not have any of the other awful sounding problems that so often plagues other Parkinson’s patients. I take four carbidopa/levodopa 25-100 tab plus one ER at night. I also take clonazepam at night as well. When I read of the hallucinations etc,, I begin to wonder whether I have Parkinson’s at all!
Does anyone have thoughts to share?
charles s bliss
Dear Dorothy: There are so many wildly different forms. Be reassured that you do not have to have ALL the symptoms! You sound like a "gait impaired" parky (though we are all a mix. Stiffness is your primary, I would guess. Like my sister.
I am a "tremor dominant", also very common. Sadly, My Dad had hallucinations right away.
My takeaway has been: The longer you go without hallucinations, the less likely you are to have them . same goes for psychosis, cognitive issues. mood disorders, and many others. You sound brave and inquisitive. THAT is the way to do it! Research is looking better/ sooner every day.