A Plymouth man who has spent more than a decade programming and putting on a light show to raise awareness about Parkinson's disease is pulling the plug.
Mike Justak, who was diagnosed with Parkinson's disease (PD) more than 15 years ago, has put on the PD Shimmers light show, synchronized to holiday music, for the past 12 years.
But 2021 will be his last.
He's said this before; he's said it for years. But this time he means it.
"I'm not crying wolf this time," Mike Justak told Bring Me The News during an interview in his living room on Dec. 8. "It's just become too much for me to handle" and has "pushed me to the limits."
That's because there's a lot that can go wrong during a light show. And for the average person, it's not a problem to put on their boots and head outside to push a button or fix whatever issue arises.
But for someone with PD, it's not quite as easy.
For Justak, his ability to move gets "less and less" as the day progresses, so at night when his light show is going, his symptoms are often at their worst, he said. Most people with PD can't stop moving (it's called a tremor). But for Justak, he can't get his body to move (it's sometimes called "freezing gait") — he'll go and sit in a chair just fine but then when he goes to get up, he just can't get himself to move.
So, when a bus full of people pulls up to his house and he needs to rush outside to fix something, the process of putting on boots, opening the door and traversing an icy or snowy landscape can be nearly impossible if his body doesn't cooperate.
Justak calls Parkinson's a mind game because if you start thinking about it, it gets worse. And to be able to move, he has to think it all through — stand up, take five steps to the door, open the handle, etc. — but then the more he thinks about it, the worse it gets.
And stress — like if something with the show is going wrong — is another "enemy" of PD, Justak says.
He has dyskinesia, too. It's not tremors from the disease but a side effect of years of taking his PD medication, which can make things difficult as well. "It's kind of ironic," Justak said.
More than a show
PD Shimmers is named for the shimmer of a light bulb, which Justak says is the equivalent of a Parkinson’s tremor. The annual show has raised more than $100,000 for his foundation, The Mike Justak Foundation for Parkinson’s Disease, which works to help people in the area living with the disease.
Lauren Honeyman, one of Justak's four kids, told Bring Me The News PD Shimmers has been her dad's main way to show the community "that we need help to put an end to this devil of a disease."
But the light show is more than a hobby for Justak — it became his lifeline.
"PD Shimmers also gave us back my dad," Honeyman said. "It gave him a greater purpose when Parkinson's tried to take that away. Saying goodbye to something so significant won't be easy. But knowing that this show and my dad himself made such an impact on his community puts my heart at ease."
Related [Nov. 26, 2020]: Keeping tradition alive: Man with Parkinson's lights up Plymouth with synchronized light show
Over the past 12 years, no matter the time of year, there was a pretty good chance you could hear Christmas music coming from the Justak's Plymouth home. And inside you'd find Mike Justak programming his light show on the computer. In the early years (technology has advanced since), countless strings of lights covered their basement floor as he worked on the show.
Anyone who visits gets a sneak peek of the show, and he is always happy to share his new ideas and song choices for the upcoming year. He can talk about the show for hours, beaming with passion as his symptoms of PD fade away during the conversation.
PD Shimmers became part of his therapy, with his neurologist pointing out that the mention of "light show" would flick a switch in him — his demeanor and his gait would change.
"Parkinson's just kind of dissolved away," Justak said, noting there's something so ingrained and inherent in your brain — for him, it was the light show — that allows you to overcome obstacles of the disease. "It was a way for me to evaporate away the Parkinson's and be more like Mike the light show guy."
Karen Justak, his wife, said: "It's your thing. It's your happy place."
Mike Justak, who taught himself how to program a light show, said he was the first person with Parkinson's in the country to put on a synchronized light show, and he's used it as an example of what others with the disease can do.
"Doing something you really love doing is good therapy for you," Mike Justak said, adding: "I was given Parkinson's so I could be a light show guy and have an impact on my community."
Grateful but with some regrets
During the light show, you can find Mike Justak sitting in his front window, keeping an eye on things. Or in years before COVID-19, he'd be in the driveway greeting people and handing out cookies.
The light show connected him with neighbors, other light show producers, and people with Parkinson's. Families have incorporated his light show into their holiday traditions, making sure to stop by every year.
“I never thought I would become part of somebody’s Christmas,” Mike Justak said.
One of his fondest memories stems from the first PD Shimmers show. One of the highlights of the annual show is a tribute to those newly diagnosed with PD, with lights turned on slowly — one for each of the nearly 60,000 people diagnosed with the disease each year.
In January after this first show, he got a letter from a man who was diagnosed with Parkinson's right before Thanksgiving. He and his wife went to the light show, and when the tribute came on, he told Mike Justak that it made him see he's not alone in his fight with PD and thanked him for helping him come to grips with his diagnosis.
He treasures the memories of people coming up to shake his hand, watching kids put money in the donation box, and the letters he's received from his "adoring public" (he said with a laugh) thanking him for the show. He's kept them all.
“That’s why a light show guy does what he does,” Mike Justak said.
But he always wished PD Shimmers would have gotten a bit more attention for Parkinson's. It's been covered over the years by several Minnesota media outlets but it never quite made the national news, something Mike Justak says is a regret of his, despite his best efforts to develop a "hook" for his show, from gimmicky names and taglines to spoofing Matthew McConaughey (you can see some of his spoofs on his YouTube here).
“It sounds vain, but I wanted it to be a national story,” Mike Justak said. "I wanted to raise awareness on Parkinson’s and have the most impact I could have."
But he's thankful for the show, those who came to it, and his "unbelievable" neighbors who let him hang lights in their yard and deal with the traffic on their street every night from Thanksgiving through Christmas.
He's also thankful for his family, who he says have sacrificed a lot because "my family is trapped" — they have to come to his house because he has to be home to make sure the show is running correctly.
What's next for Justak?
For the past 11 years, Mike Justak would shut down his light show after Christmas and start programming the next one.
"It's what he's done for a big portion of every day, almost, for 12 years," Karen Justak said.
But not next year.
When asked what he's going to do without a light show when the season ends after Christmas, he listed off a few things: Taking the lights down from his neighbors' homes, doing taxes for his foundation, and taking his wife to White Castle (a favorite fast food spot of theirs) for their formal seating on Valentine's Day — which prompted Karen Justak to call him out for avoiding the question.
Mike Justak is still figuring out what's next for him but his family has no doubts he'll find something he's equally passionate about. And he'll enjoy going to other people's light shows.
Honeyman called the end of the show "bittersweet," and said she doesn't know what he'll do after PD Shimmers, "But I do know that my dad is always thinking one or two steps ahead."
For Karen Justak, she hopes her husband finds something where he isn't always thinking about and talking about his disease, but she has no idea what it'll be.
"It'll be nice to sort of have him back," she said, adding: "We've had a lot of enjoyment ... and it's been a lot of fun."
If you go
PD Shimmers covers eight homes on Ithaca Lane North in Plymouth and features more than 60,000 lights and 200 channels of computer animation, including new "snowflakes" as Mike Justak calls them.
PD Shimmers shows are from 5-8 p.m. Thursdays-Sundays. On Mondays-Wednesdays, he runs a Jukebox format, so you can pick your own songs from a setlist — just scan the QR code near the mailbox at 4320 Ithaca Lane N or visit PD Shimmers' website here to request a song (and make a donation).
The show is designed to sit and watch, and is different every night. While you're parked outside the house, turn off your headlights and tune your radio to 90.9 FM to hear the music that is synchronized with the lights.