When early memories of Parkinson’s came full circle
I didn't fully understand the disease until a family member was diagnosed
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Growing up, I didn’t know much about Parkinson’s disease. I’m not a doctor or a scientist. I’m just a family member who learned about Parkinson’s through real life, first by watching and later by caring for my uncle Brandon, who lived with the disease until he passed away.
Before I was even familiar with the word “Parkinson’s,” I had noticed its effects without realizing it. In school, there was a staff member who had seemed fine one year but experienced a noticeable change the next. He moved more slowly, his walk was less steady, and his speech was different. None of us students understood what we were witnessing.
Some of the kids joked about it, while others brushed it off. But I remember sensing that something was wrong, even if I didn’t know what. The staff member didn’t return the following school year, and when a teacher quietly explained that he had Parkinson’s disease, it was the first time I heard the word spoken with seriousness. At the time, I moved on like everyone else. The meaning of it would come to me years later, when Parkinson’s entered my family.
Determination and dignity
My uncle Brandon was easygoing, but when he was feeling well, he lit up any room. He told stories, cracked jokes, danced without a care, and always made sure everyone had something to eat. Being with him was comfortable and welcoming. But as time passed, we began to notice small changes. He grew quieter, had difficulty speaking, and seemed to be tired in a way that sleep couldn’t fix.
The most visible change was the tremors. His hands shook. His head frequently nodded slightly. Eating became difficult as utensils trembled on their way from the plate to his mouth. But rather than give in to frustration, he adapted. Shakes and smoothies became a work-around, not because he wanted help, but because he wanted to keep doing things on his own. His independence was very important to him.
As a family, we worried, but we tried to be gentle. We didn’t want him to feel like we were constantly watching or limiting him. So we made small changes around him without making a fuss. We prayed, we hoped, and we learned when to help and when to give him space.
I spent time with him whenever I could, to give his immediate family a break and to just be there. Even as his Parkinson’s progressed, Uncle Brandon didn’t want to rely on others completely. It might take him longer to cross a room or finish eating, but he wanted to do it himself. He didn’t want to be rushed or fed. We respected that, knowing that dignity is often found in small choices.
Looking back, I realize how important those moments were. Parkinson’s took a lot from him, but he never lost his determination to be himself. Seeing how he handled the disease changed the way I think about illness, respect, and caring for others.
As a child, I didn’t really understand the concept of living with Parkinson’s. Now, I see it as more than just a diagnosis. It’s something that changes families, relationships, and how people see themselves. The memories I have, from being confused to becoming a caregiver, have given those early moments meaning. They still shape how I view life with Parkinson’s as a deeply human journey shared by patients, families, and communities.
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.
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