Kids as Care Partners: Personal Perspective

Grandfather with Parkinson's and grandson share a hug

Written by Robert Villa

I can’t really remember the exact day my dad told us he had Parkinson’s, but I was 12 or 13 at the time. It’s pretty difficult explaining to a child that a parent is sick, and I don’t really think I had an immediate reaction to the news. What I do remember is that little by little, over time, my father’s lifestyle changed.

Change is something that we all have to deal with, no matter where we are in our lives and if we learn to embrace change before it happens, we will not find it as unsettling. Having a family member with Parkinson’s has taught me to appreciate the little moments in life, and it has taught me to value things that many of us take for granted. My father was diagnosed at the young age of 40. I don’t think that even now I can wrap my head around how he must have felt that day, but I do know that he did not stop fighting and living. He has continued to live his life as normally as possible, and my family has helped him stay on course for living a healthy and worry-free life.

Although there are many aspects of our lives that are constantly changing, it’s important to focus on the things that are within our control. Growing up with a parent with Parkinson’s has taught me the importance of staying positive, staying healthy, staying knowledgeable and also staying aware. It has helped me to reach out to a community with similar experiences. My advice to others is to get out and find a group that shares a similar background and understands what you and your family are experiencing. I came to my group with my questions and concerns about my father’s Parkinson’s. Sometimes we forget that when we share our thoughts and ideas and also carefully listen to others, we can experience the incredible power of connecting with another person.

Today my family is closer than we have ever been. We communicate, we help each other and we face obstacles and barriers together. I would be lying if I said I never felt afraid about the future. But what I’ve found to be even more important is that it is this same fear that increases my ability to live in the moment with my family, staying strong and positive. As a child of someone living with Parkinson’s, there will be times when you feel helpless and alone and even angry. It helps me to remember that everything will be okay. During times of pain and distress, I try to remain calm and optimistic, not only for myself, but also for my other family members. They’re counting on me! Don’t ever be afraid to reach out for help or to communicate with your family members living with Parkinson’s by encouraging them and helping them stay active. Supporting each other will bring you closer, help ease the road when it gets bumpy and keep the focus on living well for many years to come.

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