When Home Becomes a Labyrinth

Mary Beth Skylis avatar

by Mary Beth Skylis |

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A few nights ago, Dad and I were watching an episode of “Star Trek” when he decided it was time for a bowl of ice cream.

He doesn’t like to take his medications in the evening because the side effects affect his quality of sleep. And not taking them affects his mobility, as freezing episodes become more frequent. So, when he arose from his chair, I could see the intensity on his face. He had a goal: make it to the kitchen without falling. 

My own experience with falling

I hiked the 2,200-mile Appalachian Trail in 2015, and I’m no foreigner to falling. Many of my friends witnessed my wrestling matches with nature, and they knew me as the “clumsy one who almost falls off mountains.” On one occasion, I even managed to scrape my knee in the same place three times in one day while pushing the ground away from my face.

After several months of hiking, I realized that every time I fell, I had been thinking about falling just prior to the incident. It’s as if I was internally plotting my demise before each fall. What I feared most was coming to fruition.

But when I began making a conscious effort to stop thinking about falling, the falling became less frequent. It didn’t stop entirely, but I became more successful at maintaining my balance. 

Maintaining balance with Parkinson’s

When Dad committed to his journey to the kitchen, you could see focus burning in his eyes. Given my history of falling, I wondered if he was thinking about his safe escape to the kitchen or if he was trying not to fall.

Once he unfroze himself from the ground, he glided across the living room to the next secure object. First, he took a pit stop at the piano to stabilize himself. Then, he stopped again at the dining room table. Eventually, he successfully made it all the way to his chocolaty half-gallon of ice cream. 

When he was on the move, he appeared to be stable. It was only when his thoughts wavered that you could see the hesitation in his limbs. As far as I’m aware, he hasn’t fallen yet. But I know that mobility and balance become increasingly difficult for Parkies.

It’s a concept that weighs heavily on my mind. Compromised mobility paired with fragile old bones make for an icky cocktail. And I want to find ways to mitigate disaster before it happens. 

Making adjustments to the labyrinth

While witnessing my dad’s growing difficulties with mobility, I wondered if there was anything I could do to simplify his future journeys to the ice cream. Sure, I could offer to get it for him. But I try to avoid offering my services unless he asks me to because I don’t want to take away more of his independence.

If he feels confident in his abilities, or even if he doesn’t, maybe the benefits outweigh the risks. He already has a disease that robs him of his independence. So, what else can we do? 

The Michael J. Fox Foundation points out that making small changes can make a big difference for a Parkie. I could make sure that there weren’t any vagrant shoes on the loose. Perhaps slippery mats needed to retire. These small details, while seemingly insignificant, could play a role in my dad’s safety down the line.

Oddly, the family that previously lived in Dad’s house had a Parkie on board and installed a few grab handles in essential places like the bathroom and near the door.

Battling Parkinson’s disease is a fluid act, and it requires a lot of creativity. Right now, I’m on the hunt for simple solutions to the ice cream debacle.


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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


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