Exploring Episodic Symptoms and the Flicker Effect
Previously, I wrote about the role of the second dopamine center in Parkinson’s disease (PD), which is to monitor homeostasis regulatory systems. Regulatory system malfunction is connected to PD due to insular cortex damage. In early-stage PD, this leads to episodic symptom presentation.
At first, these regulatory systems do not malfunction to the point of complete failure. Instead, due to the progressive nature of the disease, they flicker off and on in an exaggerated manner, and then return to normal. This “flicker effect” is short in duration during early stages, but increases as the disease progresses. Seizures are likely an amplified expression of the flicker effect. Learning how to manage the flicker effect makes up a good portion of my personal “broken PD brain” rehabilitation plan.
In an article published in the journal US Neurology, researchers explain that, “While the non-motor questionnaire and non-motor symptoms scale (NMSS) allow improved detection and tracking of NMD-PD [non-motor symptoms of Parkinson’s], the symptoms often remain under-recognized and under-appreciated by clinicians and caretakers.”
The researchers also state that “a rigid categorization may challenge the flexible and consistent monitoring of these dynamic and overall nonspecific symptoms along the disease course.”
I subscribe to the idea that there is a spectrum of PD presentation, and that a rigid, strictly motor, categorization may miss the impact that nonmotor symptoms have on the patient experience.
Nonmotor symptoms are part of my daily patient experience. As the disease progresses, new symptoms appear and are always episodic at the start. Although akathisia, an uncontrollable urge to move, is a recent symptom for me (albeit brief and episodic), it leaves me sensing a connection to the flicker effect.
An article published in the journal Neurology includes results of interviews with 100 patients with idiopathic Parkinson’s disease and akathisia. Researchers noted that “68% periodically experienced the need to move and inability to remain still, usually because of well-defined causes such as parkinsonism and sensory complaints. Twenty-six patients could not explain the inability to remain still, a state of true akathisia. This disputes the common belief that akathisia represents simply the need to move for relief of discomfort imposed by rigidity or lack of movement, and emphasizes the need to distinguish between true akathisia and other, more common causes for the need to move experienced by parkinsonian patients.”
In their interviews, the PD patients identify akathisia as a major disruptor in their lives, and say they achieve varying degrees of success (or failure) with medication. For me, the need to move is most annoying at night. My sleep cycle gets so easily disrupted — up and out of bed several times, walking through the house, back to the bedroom, all to quiet down the brain-body noise. In the meantime, exhausted from the constant demands of my brain-body to move, sleep is a distant and unobtainable quest. Thankfully, I’m only having brief episodes at this time, and it’s something I can sit with, tolerate, and mentally explore.
Episodic symptoms are not experienced with the same intensity all the time. There are good days and bad ones. I don’t experience akathisia all the time. When it does happen, it’s not always at the same intensity. The variations in time of occurrence and intensity offer information about my partnership with this disease. Thinking of episodic PD symptoms as biofeedback tools is a shift in perspective.
As the disease progresses, the duration of the flicker effect, sensitivity to flicker disruption, and the recovery resources all worsen. For me, living better with PD involves managing the flicker effect to slow down this progression. I call this threshold management. After mindful movements and meditation, I think threshold management is at the top of the list of helpful therapeutic practices for PD.
Threshold management includes three things:
- There are conditions that worsen the flicker effect. I need to be aware of my triggers.
- There are conditions that ease the flicker effect. I need to work to achieve and maintain balance.
- I can act and think in ways that affect both, making the flicker effect better or worse.
Accepting the possibility and the responsibility of improving how I manage episodic symptoms becomes a major tool for PD self-management. I have fewer bad days and more good ones.
Of course, the flicker effect is a systems description of my own making, a way to make sense of my experiences and to give me the beginnings of a map I can follow to that possibility of living better with PD.
I am at the doorstep of a new world of possibility, feeling like a child — scared, excited, jubilant, and humbled. There is no miracle cure, but there is genuine hope. I can use all the hope I can get.
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.