Parkinson’s changed my uncle’s daily life, but his personality remained

Most people first think of the physical symptoms when they hear about Parkinson’s disease. Tremors, stiffness, slowed movement, and changes in speech are the most common signs. But for many families, there’s another worry. We fear that the person we love might slowly lose the personality that makes them special.

I’ve experienced that fear myself.

My uncle Brandon’s personality lit up every room. When he was around, family gatherings kept going long after sunset. Just when we thought the night was over, he would sneak into the kitchen and return with one of his crazy, late-night, “country cooking” creations. Sometimes the food was surprising, sometimes a bit unusual, but we always ended up grabbing a plate and sitting down together again. For him, food was never just about eating; it was about bringing people together.

Recommended Reading

Sept. 8, 2021 Columns by Mary Beth Skylis

How Much Does Parkinson’s Disease Change Someone’s Personality?

He loved to dance, and he did it with the same energy he brought to everything else. On good days, he’d move around the room like he was channeling Patrick Swayze from “Dirty Dancing,” even if his moves sometimes looked more like Steve Urkel’s. After tough days at the doctor or physical therapy, he’d grab a favorite drink and ask for some music. Soon, the room would fill with whatever song he wanted to dance to, and he’d do his best to stay on his feet by laughing, enjoying the moment, and, for a while, taking his mind off his ailments.

Looking back, those times meant more than we realized.

Savoring the moments when spirit shines through

After a Parkinson’s diagnosis, many families worry about how the disease might change their loved one. Research shows that Parkinson’s affects not only movement, but also mood, facial expressions, and communication. These changes can make someone seem quieter or less expressive, even if their true personality remains the same.

For caregivers and family members, this can cause a subtle, underlying worry. We wonder whether the disease might slowly erode the essence of the person we love. But over time, I learned that personality is often much more resilient than we think. Parkinson’s can change how someone moves or speaks, but it doesn’t erase the humor, warmth, and character that have shaped their relationships for years.

Families living with Parkinson’s often learn to notice and appreciate the moments when their loved one’s personality still shines through. For us, my uncle’s love of laughter, dancing, and bringing people together never really disappeared. The pace of those moments changed, but his spirit stayed the same.

Caregiving brings challenges and requires us to adjust our expectations. But it also helps us notice the parts of our loved ones that are still very much alive. The jokes, familiar habits, and little sparks of personality that appear when we least expect them remind us of who they have always been. Now, looking back, I realize those late-night cooking adventures and spontaneous dance parties were more than just funny stories. They showed us that even as Parkinson’s changed some things, the person my uncle was at heart never left.

For those of us who loved him, those moments became even more precious. They reminded us that the laughter, personality, and spirit we had always known were still there, even as Parkinson’s began to change his daily life.

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.