Parkinson's Conversations With a Kid

For many people, the greatest joy in life is kids. Unfortunately, my wife and I did not have our own children before Parkinson’s.

We were too busy enjoying life and seeing the world, and well… Parkinson’s chose to leave us as a family of 2.

No diaper duty

Because of our choice, or should I say our acknowledgment of our non-choice, we did get some benefits. For instance, we got out of diaper changes, 3 A.M. emergency calls, college loan cosigning, and not having our child rebel against the laws of the house by becoming a New York Yankees fan!

Nevertheless, we also lost out on the constant opportunity to raise a small person, the thrill of seeing our kid declared the greatest something or other on a stage in front of millions, and the opportunity to turn a kid on to great live music!

Fortunately, we do have 20 nieces and nephews, as well as 4 great nieces and nephews (though one of them, Ava, has passed to the complications of Alper’s disease). We see more of some than others, but they’re family all the same.

I know. It is a win / lose thing in a lot of respects, especially on the music. I’m not quite sure if my sister will want my nephew wearing an Iron Maiden shirt or singing along to Neutral Milk Hotel any time soon. Someday… but for now, she'll let him be a nonstop dance machine.

The perks of being an uncle

For the things I can’t do in my role as an uncle, I do get to do fun things like going hiking at Amicalola Falls with my niece Amanda when I am in Georgia. My wife can get to be the cool aunt when she goes to watch my niece Christine play volleyball.

On various trips, I have hiked with them, went to the zoo, attended baseball games, and played laser tag with other extended family, too. Yes, the visits and the kids are spread out in place (Ohio to Georgia to Pennsylvania) and age (the youngest is 6 while the oldest is 40!), but some of them are close enough to see regularly. This is something I can look forward to in my “new normal.”

Spending time with my nephew

Right now, the youngest, Dylan, is at a great age. He is into dinosaurs, Legos, Lego dinosaurs, music, animals, telling people everything he knows and they don't, Chuck E. Cheese tickets, running around like a tornado, sci-fi superhero type stuff, and jokes about butts. As I can endorse all of these things, we have been able to hang out now and again. It’s not always easy with conflicting and busy schedules, but I do get to find time to build Legos and hold growling contests with him.

Just yesterday, I was told to bring over the Legos Ideas dinosaurs I got myself for Christmas since he wanted to build them with me. He had been sick for a while, so I obliged.

A shared love of Legos

Unlike the Jurassic Park Lego dinosaurs that I got him, these dinosaurs were fossils. They were also meant to be built by kids from age 16 and up, so I figured he could do some, and I would do the rest. After all, they were for the “big kid.”

Unfortunately for my Lego playtime, Dylan is a professional. He follows instructions and calls me on it if I jump ahead in the book. I know better than to challenge that since rules matter to life. What's more, he has the interconnections of the sophisticated pieces figured out. Recently, he built the ice saw truck and plane that I got him for Christmas in no time! He was supposed to make that last since it was a big box! The little boxes are done in no time at all, but the big boxes take time. However, now, his completed collection included that city set.

Thus, instead of being on the building committee, I was on the part finding team. I divided out the pieces while he put them together. All in all, he did incredibly. Let’s just say that I was a proud uncle. While I did have a few embedded pieces that I needed to shift to pieces of a different size, he did about 95% of the first half of the triceratops by himself. Later that evening after I left, he did the second half completely by himself.

How much do we tell children about PD?

At some point in the first half of our engineering feats, Dylan asked me if I was cold because my legs and arms were shaking so much. I froze up, unable to think of a standard response to the question, let alone to a 6-year old. Yes, Dylan may be able to build Legos at a high school level, but I don’t think he gets dopamine failure, even as WD40 for the brain.

Now I've often wondered what my younger nieces and nephews know about my conditions. Older kids have heard me discuss symptoms with relatives of similar or older ages. I'm not sure how it makes them feel. Everyone knows I'm open about it, but out of propriety or respect, I wonder if they don't ask.

While I was hiking at Amicalola Falls with Amanda, I told her I was making a video for this site. I also told her how neat I thought it was that they had a wheelchair-accessible trail so that everyone could enjoy this waterfall. She agreed, and so did Lulu, her dog, who we carried up the stairs to where this trail connected to the regular trail.

I don't want him to worry

But as for Dylan... I just don't want him to worry about me or know because he's, well... blood and my godson and young. Kids shouldn't think about this.

“No, this is just something that happens,” I replied, as I tried to keep the conversation away from my messed up brain. “It doesn’t hurt, it’s just something my body does because it’s not right.”

“You should go see a doctor about this,” he calmly and empathetically told me in his toothless, childhood wisdom.

“I have. He’s given me some medicine,” I replied, feeling like crying because he was so genuine and realistic in his concern for me.

Redirecting the conversation

I’ve had a thousand discussions about Parkinson’s, but having this conversation was one of the worst moments of my life. I chose to redirect it.

“Fortunately, if you can still hold the little pieces, we’ll be able to keep building together.”

With that, I went back to building Legos with the kid. For him, the conversation didn’t register, but for me, it was like a bomb in my brain. All I could do was to go back to searching through the pieces to help him get to where he needs to be next. This isn't talking about Parkinson's symptoms.

There’s a lot of things Parkinson’s has changed in me, but thinking about mortality and human frailty as expressed through the course of some #&%@$ disease can vanish with the real dinosaurs.