Relief From My Parkinson’s Symptoms Is Elusive but Attainable

I can’t lie to myself. When I’m having a bad day and feeling miserable, it’s extremely hard to shift toward calmness, and nearly impossible to convince myself I feel OK. Positive thinking has no way to get a foothold on my physical, mental, or emotional weather-beaten doorsteps. When I am consumed by misery, I can’t expect to find genuine, lasting relief from Parkinson’s disease by lying to myself. I can only achieve it by shifting to a state of calmness.

Then, when symptoms abate, even for just a moment, I experience relief. I don’t have to try and convince myself that it happened.

My first experiences with finding calmness amid suffering were filled with bliss, awe, and sacred reverence. Now, a little over seven years after my Parkinson’s diagnosis, I experience ordinary calmness. The days without pain have disappeared. Instead, there are days with pain-free moments, healing moments. They are the occasional oasis in the middle of a dysfunctional Parkinson’s desert.

I would like more oasis time in my life. Life is too short and getting shorter as I age. I want to squeeze the most out of every minute. But Parkinson’s has me in its vice grip. I get to wriggle free, but only for a few moments.

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The self-management toolkit helps me find my way to each oasis and search for the next one. The key thing for me to remember is to stop, look around, see the desert, discern the proper course, and recalibrate my direction toward the oasis. Only then can I show up every day and put one foot in front of the other.

Self-management is a daily ritual for me. Some days are full of date palms swaying in the breeze, reflected in fresh water. Other days, I am covered with sand dust, drudging toward an endless horizon, and looking internally for that last ounce of strength.

Even with the toolkit, I have challenging times that are as arduous as crossing the endless desert. I know it’s difficult for loved ones to watch and experience the flailing and resurgence of symptoms. “You were so good yesterday,” they might remark, knowing that I’m losing the battle today. This is one thing that irks me: The toolkit doesn’t work all the time.

I can’t know if the Parkinson’s self-management toolkit will help others on their desert crossings. I do know that, overall, things have improved for me, exemplified by decreases in falling, choking, emotional outbursts, and unpredictability, and an increase in lucid time.

Falling has dropped to zero occurrences. I will still wobble on a very bad day. But if I am mindful, I can slow down and not have my foot drag.

Episodes of choking and aspiration while eating are also gone. Again, being mindful while eating and not trying to have a conversation at the same time reduce the occurrence of food getting stuck. I still dribble on my shirts, but that is the least of my concerns.

On the good days, I can control my vitriolic emotional outbursts. Intense emotions still can rage, but they are more like a brief downpour rather than a tsunami of floodwaters.

Unpredictability of symptoms can decrease when I use the toolkit in my daily routine. It’s a balance of rest, limited heavy physical activity, and no more than one major outing in a day, with rest days following for recovery. When I put time into self-management, I function much better. Throw in life’s unexpected moment, and I might be able to handle that now. Throw in several unexpected twists of fate, and my symptoms swirl around like dust devils. The toolkit can’t solve everything.

Because of the self-management practice, lucid window time has increased. In between my off periods and bad days, I have times when I can write, think, and function at a higher level. Those are the times that I find calming when I’m in my oasis. I can feel the cool breezes and realize, without a doubt, that I can make it to the next oasis.

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A note of thanks to our readers who follow the Dr. C columns. Mrs. Dr. C and I are taking a short hiatus from column-writing during September to recharge our batteries. Our big project is finishing book two in the “Possibilities with Parkinson’s: Using the Self-Management Toolkit” print version. We will be back on Oct. 14 with new and fresh ideas about possibilities with Parkinson’s.

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.