When Parkinson’s triggers throw my body and mind off balance

How I practice self-management when dysregulation occurs

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by Dr. C |

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Anything that causes the body or mind to be off balance, shifted away from its baseline state of homeostasis, will create problems. This is especially true with Parkinson’s disease.

As I move deeper into midstage Parkinson’s, the experience of being off balance is more intense and lasts longer, and more attention is required to shift back.

Midbrain structures, notably the insular cortex, are, in part, responsible for automatically getting us back to balance. The insular cortex acts as a central hub for processing relevant information about our physical, cognitive, and emotional states and monitoring regulatory processes.

With Parkinson’s, the insular cortex is damaged and the regulatory processes malfunction, causing episodic breakdowns in our bodily systems. These breakdowns can occur as either an amplification or a suppression of a regulatory system.

For example, I keep thinking that the occasional ice cream splurge will be all right, so long as it doesn’t become a craving. The problem lies not in enjoying a few spoonfuls of the tasty treat, but in ravenously devouring an entire pint in 10 minutes. This happens because I just can’t self-regulate anymore. My solution is to at least try, using all the self-control I have available, not to bring the pint into the house.

Perhaps it doesn’t seem like a big problem. It’s “just” ice cream. But it’s not only my craving for ice cream that can trigger a runaway regulatory dysfunction. Anything related to drives and emotions can light the match.

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There’s a long list of things that trigger dysregulation for me, throwing me out of homeostasis and exacerbating my Parkinson’s symptoms.

Triggers to the body include:

  • Too much sugar consumption.
  • Too much or not enough exercise.
  • Not enough sleep.
  • Most illnesses, especially viruses, which make a beeline to disrupt my nervous system.
  • Waiting beyond my comfort levels to drink, eat, sleep, have sex, or use the bathroom almost always triggers akathisia. Wait too long, and even more symptoms flare.
  • Environmental temperatures that dive below freezing or surge above 75 F.

Triggers to the mind include:

  • Too much busy mind and not enough meditation time.
  • Drama or stress, and getting overemotional from good or bad events.
  • Overstimulation from sensory input, especially loud noises, but also industrial lights or crowds in stores.
  • Too much computer or TV time.
  • Pushing myself too hard to accomplish personal goals.

A shift in self-management

Parkinson’s self-management is difficult, I admit, because I cannot rely on my old coping skills to circumnavigate the effects of the triggers. Now self-management is more about not exposing myself to triggers. Granted, much of what is on the above list is self-generated, but several are outside my realm of control. Sometimes stuff just happens.

With Parkinson’s, I must constantly self-monitor for any subtle shift out of balance. This ever-present mindfulness is necessary because things can get ugly if I shift out of balance during an “off period” or a bad day. When that happens, my Parkinson’s symptoms max out and I’m laid up in bed for days. That’s not how I want to live.

Parkinson’s self-management is also difficult because failure will happen. Triggers occur all the time. Unexpected events can cause us to spiral out of control, and that’s very discouraging. I know when it’s happening and what’s going on in my brain at that moment. I can sense it. I will pay the price for not following my own self-management program. But many times, I can’t do anything about it once I’ve gone past the threshold. My self-regulation mechanisms are broken. And thus, I fail.

I face two main challenges with Parkinson’s self-management. First, I need to sense as early as possible when dysregulation is about to occur. When I identify the trigger very early, I can avoid the consequences. Mrs. Dr. C helps with this, reminding me of the trigger using her gentle, non-nagging voice.

Second, I must put into place an individually tailored self-management approach that will calm down the effects of dysregulation after it occurs. This helps to minimize the negative consequences. But, in all honesty, when I’m in the middle of a dysregulation event, it seems impossible to do this.

TBM (my Parkinson’s self-management program that stands for threshold management, brain rewiring, and mindful movement) is designed to help me. When putting TBM into motion, we must part with our old ways. The idea that managing Parkinson’s is impossible is tied to the knowledge that our old coping skills just don’t help anymore.

Staying in the “sweet spot” requires changing how I manage my entire Parkinson’s life and using that sweet spot to stay balanced. That’s how the impossible becomes possible.

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.


Joseph Saxman avatar

Joseph Saxman

I would add a third self management concern. If you are taking Mirapex or similar class drug, ie Requip, the chances for a severe side effect can occur. That is an intense need to gamble, insatiable sexual desires, and many other concerns that you may not even realize what you are doing. I can definitely can vouch for this. I almost lost my marriage because of gambling. It wasn't until I researched each of my PD drugs and PTSD medication for interactions. I discovered side effects of the Mirapex type drugs. I believe my comments will be substantiated by any of the PD staff.

Hope Rambo avatar

Hope Rambo

Your article has certainly given me some much needed insight into managing my own trigger points. Recently I have been experiencing some very strange symptoms with my balance which seems to be precipitated by eating sugar and carbohydrates. The problem lies in my inability to control the cravings which usually happen at night, perhaps the worst time to be eating. Your article is a good reminder of the need to self-manage this situation or else. Thanks for the very helpful reminder!

Donald Gale Dowd avatar

Donald Gale Dowd

Your description of the efforts that for me sometimes seem beyond my capabilities to try to maintain a level of normalcy. I try to review / read
about advances in the treatments of PD symptoms / medications


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