When disease affects a family, it can be devastating.
While many ailments have treatment plans – some which can be a long road to recovery – others leave patients and their families with a lack of answers and few choices.
The Peterson family found themselves with the latter option.
For the last four years, Mike Peterson, a longtime Falls Elementary teacher and hockey coach, has battled Lewy Body Dementia. The once energetic educator known for his popular Light Game, found himself having hallucinations and unaware what was taking over his mind and body.
“It’s a horrifying disease,” Peterson’s daughter, Gina Skopinski told The Journal. “For a long time my family and I were in denial. This couldn’t be happening to our dad.”
But, disease doesn’t discriminate. If it did, someone who found such joy in shaping young minds would not likely be a memory-loss target.
“We found ourselves grieving for someone who is still alive,” Skopinski said of herself; her mother, Renee; and two sisters, Annie and Jennifer.
While it may not be a term heard often, Lewy Body Dementia, or LBD, is not a rare disease. In fact, according to the LBD Association website, it affects about 1.3 million people in the United States. Because its symptoms mimic more commonly known diseases like Alzheimer’s and Parkinson’s, LBD is widely under-diagnosed.
Luckily, if there is a positive side to Peterson’s diagnosis, doctors were able to pinpoint the demons taking over the active community man.
“My mom had taken him to several neurologists in Duluth and they thought it was medication he was taking,” Skopinski said. “Finally, she took him to the Mayo Clinic in Rochester. The doctor who diagnosed him is one of the few doctors in the nation who specializes in extensive Lewy Body research.”
With such a horrible thing happening to her father, Skopinski admits it would be easy to succumb to grief – especially when the disease takes on different stages. But she decided to steer her energy to something more positive. With the help of friend and Falls native Kim Sundin Oppelt, the family this month launched an effort in Peterson’s name.
The Mr. Pete Foundation aims to carry on the passion and dedication Peterson displayed as a teacher and coach in the International Falls School District. Grant funding from the Mr. Pete Foundation is awarded to teachers who desire to enhance their classroom experience in new, fun, and innovative ways.
“It was like this was what was supposed to happen,” Skopinski said of creating the foundation, adding that getting to this point hasn’t been easy. “It’s taken us a long time, as a family, to get to the point to publicly talk about dad’s diagnosis.”
Early stages
When Peterson abruptly announced, near the end of the school year in 2009, to his family his retirement after more than 35 years of teaching Skopinski said looking back, he must have known something was wrong.
“He said he was going to teach forever,” she said. “At least until he felt he was no longer being effective. Still, he loved his job. We were all shocked.”
Skopinski described her father as a man who went “above and beyond” when it came to his students – his kids.
“I was always in his classroom watching or helping him get stuff ready,” she said.
About a year after Peterson’s retirement, Skopinski said her mother kept her three daughters “sheltered” from Peterson’s illness.
“Mom didn’t want to worry us,” she said. “We knew they were going to the Mayo Clinic, but that was about it.”
It was while Mike Peterson was at Mayo that Renee Peterson opened up to Skopinski and her sisters.
“That was the first time I heard the term Lewy Body,” Skopinski said. “I Googled it while I was on the phone with her and lost it. I got in the car and drove to Rochester right away.”
Living with Lewy Body
Lewy Body Dementia is an umbrella term for two related diagnoses, the association’s site says. The disease refers to both Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep and behavioral symptoms.
An early symptom is recurrent, complex visual hallucinations, typically well formed and detailed. Skopinski said when her father was hallucinating, it was like he was back in his classroom.
“He remembers being a teacher,” she said. “It’s actually pretty amazing how much he remembers. For the most part, it seems like his long-term memory is there to a certain extent. He’ll tell me he has three daughters, not knowing I’m one of them. He remembers me as a little girl.”
Shedding light
There is no cure for LBD, and in Peterson’s case, Skopinski said during the last six or eight months, his health and awareness have seen a steady decline.
“We go through all the stages of grief – denial, anger, all of those stages,” she said. “And when he gets worse, we go through it all again. It’s very heartbreaking. But there are moments I really see a glimpse of him.”
It is those moments of hope combined with the love Skopinski has for her father and the love he has for children that directed her to launch the Mr. Pete Foundation.
“Before I did anything, I wanted to talk to my mom and I wanted to talk to him,” she said. “I knew deep down it might be harder for her than him.”
Skopinski was right.
Her mother needed time to consider the idea, while Peterson’s face “lit up” at the mention of it.
“If I was going to do something in his name, I wanted to make sure it was for something he was passionate about,” she said. “I needed to know if he would rather send a kid to college every year or fund teachers. He was very clear he wanted to help teachers because he doesn’t think they have enough resources in their classroom or enough money to carry out some of the good ideas they have.”
Guiding force
Skopinski said she and Oppelt feel Peterson is the guiding force behind the foundation that has already received massive amounts of attention on social media sites.
“Messages have been pouring in,” Skopinski said. “I bet I’ve received 500 messages (this week).”
During the summer and fall, Skopinski hopes to continue gaining exposure to the foundation and raise money for its ultimate goal – providing grant money to teachers. Funding will be awarded to those who demonstrate a passion in education and a classroom responsive to innovative learning – much like Peterson did. Grants are expected to be distributed throughout the year and those seeking funding may submit an application to the foundation beginning Oct. 15.
In the meantime, Skopinski said those involved will spend the summer gearing up for the the main fundraising event set to take place Oct. 11. During that event, silent and live auctions will be held as well as a ceremony to present a teacher with a legacy award in his name.
“He was proud of what he did and so are we,” Skopinski said of her father. “This event is going to be to honor him and honor those who dedicate their lives to teaching and students like he did.”
