My Mornings Are Broken Due to Parkinson’s Disease

When Cat Stevens sang “Morning has broken,” the lyrics were referring to the rejuvenation of the sunrise. That doesn’t happen for me as someone with Parkinson’s disease.

It starts with what I call the 4 a.m. four-alarm wake-up call. It’s head-to-toe body pain, sweating, and an erection that demands something be done about it. Then comes the histamine flicker, and I’m sneezing and dripping like a leaky faucet. This is followed by vertigo, nausea, and back and neck pain with slowed, clumsy movement. That’s not a morning rejuvenation.

I face this chaotic morning with a cup of hot chocolate. Between sips of velvety cocoa, my thoughts are tossed on tumultuous seas, flitting from one wave to the next. Everything needs to be addressed now! Find the cats (we have three) to be sure everyone’s needs are met. Weed the garden, help Mrs. Dr. C with her projects, write a column, work on the next book, and practice the Parkinson’s self-management toolkit.

My brain has a cacophony of noise, but the chronic, physical distress also is yelling at me. If it’s a bad morning, my body cannot function in synchronicity with my brain, and movements are both slow and painful.

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I surmise that, given my intense off-period symptoms, I’m not particularly objective in the morning. Mood fluctuations are reported in up to two-thirds of Parkinson’s patients who experience motor fluctuations, as noted in a 2001 article published in the Journal of Neuropsychiatry and Clinical Neurosciences. According to the article’s abstract, “Most researchers indicate that mood fluctuations tend to be associated with motor fluctuations in that patients experience decreased mood when ‘off’ (immobile) and elevated mood when ‘on’ (mobile).”

Mornings start with some variation on these events. What’s worse, I can waste the day spinning, flitting, and grasping in this busy physical and mental state. In fact, it’s amazingly easy. I just give up and let the disease take over, laying aside my self-management strategies. But letting the disease take over is a fuse lit on a potential bonfire. I want to avoid that, so I take time to relax every morning.

My relaxed mental state is, to a degree, a normal, default brain state. Unfortunately, my default brain is malfunctioning with Parkinson’s. I find that the more I use this dysfunctional mental state, the worse it gets.

So the question I face every morning is, “Do I want the rest of my day to be like this?”

You would think the answer would be obvious, but because of the culturally accepted and endorsed Parkinson’s “sick role” (a role that identifies attributes of living with a chronic illness), we haven’t made much progress on Parkinson’s self-management. Parkinson’s is often seen as a horrible “death sentence.” Self-management seeks to steer away from this sick role and replace it with possibility based in science and hard work.

Mrs. Dr. C will tell you that when I (or we) can’t follow the calm morning rituals, then it’s difficult to get back on track the rest of the day. It’s more difficult to use the self-management tools once the cascade has begun. It’s also rewarding to practice a set of tools that help steer a bad morning into a tolerable day I can share with my partner.

A scoping review published this month in the Journal of Medical Internet Research focused on Parkinson’s self-management. A scoping review allows researchers to assess emerging evidence and propose a first step in research development.

The review looks at current applications of self-management tools on motor issues. (Unfortunately, nonmotor symptoms weren’t included.) Researchers conclude:

“This scoping review identified a wide variety of interventions designed to support various aspects of self-management for people with Parkinson disease. The studies all generally reported positive results, and although the strength of the evidence varied, it suggests that self-management interventions are promising for improving the care and outcomes of people with Parkinson disease.”

The goal of a future self-management toolkit would be, as the authors state, to eventually teach self-management strategies to patients. We need to expand our efforts to include nonmotor issues. But first, we need a beginning toolkit to test.

I’m testing this one on myself. My first step is to dedicate myself to practicing my Parkinson’s self-management toolkit every morning so I don’t have to forfeit the rest of the day. It should be first on my morning to-do list.

Granted, it’s been difficult to make self-management happen consistently. I have so many obstacles that hamper my making Parkinson’s self-management a daily ritual.

Mornings are broken, but I can change the day with self-management tools and the gains I make with insight meditation. I can even the playing field. I can steer my Parkinson’s so that I’m starting my day in a better frame of mind and body.

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.