It’s a Horrible Illness but You Can Change That

My Parkinson’s symptoms have gotten worse. Every day has two peak off times that I think of as “horrible.” During peak off periods, I experience the following sequence:

First: Pain flares have surges up to levels 7 and 8. It can include 15 different pain locations, but only three occurring together tell me I am at peak: neck, back, and intestinal cramping.

Second: The fight-or-flight response kicks in with emotional surges, particularly sadness and irritability.

Third: Decreased lucidity and motor fluidity. I should stop doing things due to a decrease in the ability to complete motor and mental tasks. Sometimes I can’t.

Fourth: Overwhelmed and feeling horrible feeds into the second stage, so I am caught in a spinning loop. The more I spin, the worse it gets. I fight off depression on a regular basis, as do 40-50% of Parkinson’s patients.

This sequence happens during every off period – twice a day. It happens quickly, making it difficult to sort out the sequence. It has taken me years of meditation to separate out the stages of the sequence.

This sequence can be interrupted if I can put an early intervention in place. Pushing through it because I’ve committed to some obligation (a medical appointment, meeting people, going somewhere), makes all of the symptoms worse. Trying to do anything other than a healing intervention makes it worse. My intervention starts with self-awareness and putting in the early intervention of what I call the “pause between.”

The pause between is an actual physical and mental pause. I stop all actions and thoughts and take a deep breath — usually several. This is done as soon as the off-period pain, with its unique character, begins.

The progression, with pain leading to a fight-or-flight response that escalates, needs the pause between prior to the exaggerated responses. Those exaggerated responses are what creates unnecessary suffering, making the disease more horrible than is necessary.

The pause between is put between the pain and the fight-or-flight response. I succeed most of the time, but sometimes I don’t. I put the pause in place while experiencing exaggerated emotions and before I say or do anything. This sometimes requires using TOOTS, which stands for “Time Out On The Spot.” It means taking a timeout and stopping myself from engaging in thought or action at that moment. The focus of attention is shifted to the pause — to breathe — and to mindfulness. Nothing else is on my mind as all energy is directed to the pause between.

It has taken me years of regular practice to strengthen the pause between and redefine the “horrible” definition I attached to the disease. “Horrible” has been changed to “not enjoyable but manageable.” I am not fighting with it anymore. I quiet my mind and sit on my mental riverbank watching the pain float by, carried in a flowing, sometimes raging, stream of emotion.

Eventually, as I hold that pause between using mindful breath, the pain quiets down. I stop spinning and no longer experience the off period as horrible. I have regained some control of my mind despite the worsening of symptoms. I still don’t enjoy the peak off periods, particularly when they appear on top of bad days, but I have learned how to manage them better (most of the time) and not fight them. It took years of practice, but now the peak off periods are my meditation times, and that has changed everything.

In the spectrum stage theory of Parkinson’s, I speak about the importance of the insular cortex and its role in Parkinson’s symptoms. It is an area of the brain responsible for evaluating emotion and pain perception, and it is damaged by the disease. Feelings of irritability and sadness are often exaggerated due to the damage.

I propose that it is part of the reason why people who had no mental health issues prior to a Parkinson’s diagnosis are given a mental health diagnosis later. The surges of pain and emotion are perceived as abnormally loud and horrible. We use the coping skills we have learned to deal with the new sensations. How were we to know that our brain was lying to us?

It can be quite difficult at first to recognize this exaggerated input. In some instance, I think Parkinson’s patients can experience the opposite of exaggerated loud input as lethargy and apathy. But it may be the same cause as the exaggerated input — a damaged insular cortex. Practicing self-awareness with the conductor helps me recognize the exaggerated nature of this input into my brain.

After awareness, I learned to practice putting the pause between in place. The sense of needing to fight this horrible thing faded, transforming into a calm management practice. Yes, it is a horrible illness. But we can change that.

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