If you want to see Parkinson’s in a new light you only need to drive by Mike Justak’s home in Plymouth, Minnesota. He shines not one light, but more than 50,000 of them. For the holidays his home turns into what he’s dubbed “PD Shimmers,” a Christmas light show synchronized to music, in order to raise awareness of Parkinson’s disease (PD).
This is not a little Christmas display with a few strings of blinking lights and a speaker outside so that you can listen to a Christmas carol or two. ”PD Shimmers” is a synchronized light show of 58,000 lights that encompasses not only Mike’s house, but also those of five neighbors. The light show is controlled by a computer that includes wireless technology so that Mike can come out and direct the show from his Wii guitar. There is a tree of lights that towers 17 feet. The music is broadcast in FM stereo so that you can listen to it your car. There are even battery-powered light wands that Mike offers to onlookers so that they can become part of the show.
Mike wasn’t always so outgoing about his battle with Parkinson’s. He is a young-onset patient, diagnosed in 2004 at the age of 48. Initially he went through several stages of denial and withdrawal, preferring that no one except his immediate of family know of his diagnosis. But almost a year and a half later he had what he calls “an awakening,” which led him to found his own nonprofit, The Mike Justak Foundation for Parkinson’s Disease. Mike’s foundation raises awareness of Parkinson’s through the light show, videos in which people with early-onset PD tell their stories, and an exercise workout that is done with a Nintendo Wii.
In 2010, with no electrical or programming knowledge, Mike decided to put on a light show. “’Shimmers’: that seemed to be a good name for it,” he said. “The lights suggest the tremors in PD.” So, with 8,000 lights, PD Shimmers was born. It grew yearly, from 8,000 to 20,000 to 40,000 lights. In 2013 there were a whopping 58,000 lights on display. These numbers aren’t random: they reflect Mike’s deep knowledge of PD statistics. In its initial year the show ran every ten minutes and concluded with an announcement that every ten minutes someone is diagnosed with PD. The 20,000 lights stood for the 20,000 Minnesotans who have the disease. And this year it is expected that 58,000 Americans will be diagnosed with Parkinson’s. “We will shine one light for each and every person diagnosed,” said Mike.
It’s been noted by a number of observers that many people with PD choose to develop their creative side. Mike would tend to agree. For over 20 years he worked in the self-storage industry, most recently as an analyst. Now retired due to the effects of his PD, he spends his time perfecting his light show, telling the stories of other people with early onset PD on his website, and creating a video of faces of people of all ages that have PD.
Mike also developed a batch of new skills. He taught himself building, electrical work, plumbing, music, and computer programing as he developed Shimmers. He also designed the whole display to be “Parkinson’s-friendly,” that is, as easy as possible for him to set up. For example, the center pole of the 17-foot-tall Christmas tree is in three telescoping sections so the balance-challenged Justak can stay off a ladder and work on it on the ground.
“The payoff,” says Mike, “is when someone shakes my hand to thank me – and then they tell me they have PD.”
Though he’s best known in the Parkinson’s community for his light show, he’s equally committed to the work of his foundation. “I use the foundation to educate people about how important exercise is,” he said. One tool he advocates is the Nintendo Wii and its Fit workout. “It gets you moving. It can be social, easing depression, and it helps with balance. I’m currently working to expand my involvement with the Wii–I’m soliciting donations of game consoles so I can put them in the hands of those who need them. I hope to expand our Wii grant program so that there are funds available to purchase game consoles so that anyone who needs one can get one.”
This spring he hopes to bring his newest project to life. He is creating a video, “Faces of Parkinson’s,” that he plans to offer the World Parkinson’s Conference and to Parkinson’s Action Network to use in their lobbying efforts for more federal funds to fight PD. Currently the funding from the National Institutes of Health for other chronic diseases is significantly higher than for PD. For example, Alzheimer’s research is being funded to the tune of $500 million, with $3 billion for AIDs, while PD research receives $154 million. One reason for the gap, say many observers, is that PD has no “face.” Most patients are elderly and not socially active, so they’re invisible in the wider culture. Mike’s video will feature a “wall” of faces identifying themselves and announcing “I have Parkinson’s.”
“I created the foundation so I could contribute–give back to help others who have PD,” said Mike. I’m fortunate. I feel that the question, why me?, has been answered. I was called upon to find ways to use my talents to help others, to inspire and to pay it forward. My lights shine for the world to see. As long as there is Parkinson’s tremor, the lights will shimmer.”
Written by Susan Gangsei, author of The Light In The Middle of the Tunnel: Harrowing but Hopeful Stories of Parkinson’s Family Caregivers and Stuck With It, Not In It: Redefining Life with Parkinson’s Disease.
“You have Parkinson’s.” Those are 3 words I heard more than ten years ago – three words that were not in my plan, and I am a planner. I plan the plan to plan.
Betty Strom was never her Parkinson’s. As the disease made her world ever smaller, her courage and soul expanded. A few days before her death in 2011 at age 80, she begged to join her neighbors in a field trip to Underwater World. That was my mom.
Liz Ogren is a 5th grade teacher, Bruce’s wife, mother of teenagers Alex and Evan, and companion of her cockapoo Murphy. After being diagnosed with PD in 2007, she briefly became a self-described couch potato.