Growing Up With a Parent with Parkinson’s

Jill and Matthew Ater

By Matthew Ater, son of Davis Phinney Foundation Ambassador Jill Ater

Parkinson’s is hard. Having a parent with Parkinson’s is hard. But as easy as it sometimes is to think, “Woe is me; this is too hard,” it’s not too hard.   

Here’s how I know: 

My mom has Parkinson’s. And her mom and sister have Parkinson’s. In other words, it’s a true family “gift.” Looking back, though, although Parkinson’s runs in our family, it doesn’t define my family or me.   

When I was seven, my mom was diagnosed with young-onset Parkinson’s. My younger brother was four. Now that I’m twenty-three, I honestly can’t remember much about my mom before her diagnosis. I do remember, however, that her Parkinson’s didn’t just “happen overnight” and that it took its sweet time to develop. Specifically, I remember her hand starting to cramp and one side getting off-kilter. Still, like every kid, I was focused on my world. I wanted to ride my bike and play with my friends. And I did, all while noticing that my mom was very thoughtful with her Parkinson’s. She didn’t try to hide it from my brother or me. As far back as I can remember, it was talked about in our family just like we talked about the weather. I was just another kid who did what other kids did except at times I also had to help my mom in and out of the car, take her hand when she struggled with balance, and move more slowly around a store. Other than that, nothing was different about my childhood because my mom had Parkinson’s. 

The year Jill was diagnosed with Parkinson’s. Matthew was 7; Jill was 42.

Parkinson’s doesn’t hit you like a train and boom your life is over. Parkinson’s is an aspect of life that fills in the cracks. When I think about how Parkinson’s has changed our lives, I believe it has been more of a positive than a negative change. As weird as it is to say that a progressive neurological condition is a good thing, I stand by that belief. When I was a kid, Parkinson’s was why we could skip the lines at Disney World and park in the handicapped spots at the mall when it was crowded. But as I grew up and matured, Parkinson’s became the thing that motivated me to go to the gym with my mom so that I could help her work out — and, surprise, it helped me stay in shape at the same time.  

Most importantly, though, more than the fun of skipping lines at Disney, it is the intangible benefits that have proven to be the most valuable. I know that Parkinson’s has made me more patient and kind, more empathetic, and more motivated. It has also taught me to slow down, to focus, and to look for good things in life when everything seems difficult.   

Before my mom had deep brain stimulation (DBS), my parents worked a lot. My brother and I would fight, and our Mom and Dad would get upset. Normal family stuff. That changed a lot after my mom’s brain surgery. We slowed down. We realized that happiness can be a choice we make and that our family was the most important thing in the world. My parents retired earlier than they had planned because DBS gave them their lives back, and as a result, we moved to California. All of those plans and dreams I used to hear my mom and dad talk about started to happen. Yes, my mom was slower, and she couldn’t walk as far, and she showed up to my lacrosse games with a cane, but she was ALWAYS there.     

I watched as my mom became very involved in the Parkinson’s community. She started to work with others and share her story with others with young-onset Parkinson’s and helping in the community however she could. And she made dang sure that my brother and I helped as well.   

Parkinson’s is hard; it truly is. There are bad days when we cry and feel broken down by it. On those days, it is tough. On the days that seem exceptionally difficult, I’ve learned those days are that way because we let them be. The days when we are smiling and happy and the world is full of light are the days when we get to decide what we want them to be. I’ve learned to slow down and appreciate the good things in life. Just because Parkinson’s is in the picture, why stop living? Besides, I’ve learned that life is better at a little slower pace anyway. When you slow down, you see more, hear more, feel more, and have more of yourself to give to others.   

I overheard my mom a couple of years ago talking to a woman newly diagnosed with Parkinson’s. The woman was in tears. She thought her life was over and that Parkinson’s was a death sentence. My mom told her this: “Have a pity party. Be sad. Be angry. Life is hard, and it’s not fair. You are allowed to have your pity party. But you aren’t allowed to give up. So have your pity party and then get back up and get on the horse and go.”    

That stuck with me. Parkinson’s is hard. Life is hard. But not too hard. Be upset, be mad, be sad, but don’t give up. Parkinson’s doesn’t take away your life. It just makes you slow down and enjoy the ride a little differently.    

Matthew, Jill, and Matthew’s grandmother Sue, taken after Jill and Sue both had DBS

Are you a child, care partner, or friend of someone with Parkinson’s?

During our monthly one-hour Care Partner Meetups, Connie Carpenter Phinney (and other care partner special guests) hold some space to discuss the concerns, challenges, and questions that many Parkinson’s care partners have today. We invite you to join us. The next meetup will be on April 6 at 12 pm Mountain Daylight Time. To learn more and register, click here.

Get the every victory counts manual for care partners

Do you have the Every Victory Counts Manual for Care Partners! Released in 2021, this resource is available at no cost in print and digital versions. To learn more and request your copy, click here.

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