How to Be Out on the Town, Not Down for the Count

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by Dr. C |

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Notable events, like my granddaughter’s school play, often are not scheduled to accommodate my Parkinson’s disease (PD). Usually, early evening events seem to occur exactly as I reach the peak of my worst “off” period. But will I miss these types of activities? No! I need to be out on the town, not down for the count.

On other occasions, events that required extensive travel, which meant they overlapped with an “off” period, would always exacerbate my Parkinson’s symptoms. Invariably, the day after becomes a “day of the beast,” when PD fatigue makes even basic survival tasks difficult.

Getting to that point of exhaustion was not the outcome I wanted for that evening trip to the theater to see my granddaughter’s play. Fortunately, this time I was prepared with my Parkinson’s self-management tools.

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My approach was to arrive at the play with my well of resources as full as possible. Managing two of the stressors is the first step, so I do the following:

First, I stop the effects from exaggerated emotions. Loss of emotional control is an unfortunate event for PD patients. If I’m approaching or crossing that threshold, I need to stop emotional spillover into my life and among those around me by using my Parkinson’s self-management program, which I call “TBM.” (“T” is for threshold management, “B” is for brain rewiring, and “M” is for mindful movement.)

Second, I manage stress, either physical or mental, by recognizing my shift from homeostasis. Getting back to homeostasis takes as much time and recovery effort as getting out of sync in the first place. The larger the swing from homeostasis, the more resources I need to be stable again. Stress management requires recovery time.

My goal before the play was to get a good night’s sleep. As the night goes, so goes the day. Unfortunately, the night before the event, subzero temperatures meant my feline companion was restricted indoors for the night. The cat, a 10-pound tabby with hunter instincts and a loud voice, wants to prowl outdoors after midnight. But I don’t let him out when it’s that cold, so he’ll start howling at 4 a.m., disgruntled that his human is restricting his nighttime excursions.

I went through several of these episodes with him last winter. A single night might have had up to four occurrences of cat howling that lasted about 30 minutes each. The theater event was important, so how could I make the best of the situation? I couldn’t change the weather or the cat, so I was left only with changing myself. But how could I get the most rest possible, given the less than ideal sleeping conditions?

This is where the Parkinson’s self-management tools make an impact.

Managing my emotions while the cat is howling can be difficult for an ill-prepared mind. It has taken me months to understand my reactions and why they occur with such emotional intensity. The unannounced howling abruptly disrupts my sleep and triggers the fight-or-flight response, which makes that night’s sleep worse. Mrs. Dr. C says the howling instigates a visceral reaction in the human brain, as if a saber-toothed tiger were stalking primitive man. She may be right.

But unlike primitive man, my solution was to meditate during each of the 30-minute howling episodes. When the cat quieted down, I could sleep. I wasn’t getting full, uninterrupted sleep, but the sleep I did get helped. I also needed more rest the next day, before leaving for the event, but it didn’t stop me from going to the play.

In the end, the play was spectacular. We were so proud of our granddaughter for her singing and acting skills. The resource management work allowed me to attend with fewer PD problems. I even had enough resources left in the well to make it home before the worst of the PD symptoms started.

The next day, I was down for the count. Even with preparation, I can’t prevent the well from being drained. The day after is always bad, so I set it aside for recovery. Mrs. Dr. C and I know this. We adjust our schedule to free up time to prepare and recover. This requires adjusting time from other projects for two days while the well of resources is filled back to normal levels.

Life shouldn’t have to be so difficult with Parkinson’s. I can’t ask the world to schedule events at times that are easier for me (although we did suggest that school officials consider having an afternoon matinee for us “old folks”). But if I use the Parkinson’s self-management tools to keep the well filled and avoid draining it unnecessarily, then I can be out on the town, front and center, for these precious performances.


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.

Comments

Mike avatar

Mike

Dr.C,
There are certain life events that demand our presence. Regardless of on or off periods we are sometimes needed. Illness or not. The TBM strategy allows me to be there in reasonable shape! When we travel diet is critical as we as maintaining disciple in taking my medication.

For me mindful movement (Lsvt) is critical to my wellbeing. Being overcome with stiffness has no place in my sharing joy at family events. Also I need to avoid excessive ice cream. Joy of life should not be ruined by
our dreaded condition. Blessings, Mike

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Dr. C. avatar

Dr. C.

Hi Mike ~ I fear I must agree on avoiding "excessive" ice cream... it does not do me well. It is banned from the house. I have found that a very, very small portion once a month is OK. I'm impressed that you mention Dr. C's tips to self manage PD -- and I'm grateful you are following along the columns. Many thanks for your comments.
Dr. C.

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