Parkinson's hasn't kept Arlington Heights man from a full life
Todd Johnson had been a drummer for most of his life, but while playing in a band during graduate school he started to notice something strange.
"My right arm wouldn't go as fast as I wanted it to," he said.
Johnson saw a neurologist who did an MRI and said everything looked fine.
But the stiffness persisted, and years later, after a series of doctors and tests ruled out other causes, Johnson finally got a diagnosis -- young-onset Parkinson's disease. He was 31 years old.
"I was in shock," said Johnson, who now lives in Arlington Heights. "I just didn't know what to expect."
The average age for a Parkinson's diagnosis is 62 -- anyone diagnosed before age 50 is considered young-onset, according to the National Parkinson Foundation. Only about 2 percent of the 1 million people in the U.S. with Parkinson's are younger than 40.
Now, three years after his diagnosis, Johnson hasn't let the disease get in the way of his life. In that time he has fallen in love, gotten married, bought a house, and just welcomed his first child -- all while raising more than $30,000 for the National Parkinson Foundation.
"My philosophy is a riff on the serenity prayer: Control what you can, accept what you can't," Johnson said.
The things he can control, such as regular exercise and stretching, along with religiously taking his medication, have helped minimize his symptoms' progression.
Instead of the tremors typically associated with Parkinson's, Johnson's symptoms so far are mostly tightness and rigidity in his arms.
Just a few months after his diagnosis Johnson met his future wife, Lori Ann Greidanus. A few weeks into their relationship he told her about his condition.
"I wanted to give her an out if this seemed like too much for her," Johnson remembers.
Greidanus went home from their date and researched young-onset Parkinson's, a disease she didn't know very much about. But she didn't start looking for a new boyfriend.
"It didn't make me question our relationship, it was just, 'What is this going to mean for us?' she said. "It certainly brought a very serious aspect to our relationship early on."
Raising awareness, along with funds for research, is now the couple's shared passion.
"Obviously everybody has things they have to juggle in their lives," Johnson said, "but having it at this age while raising kids and having a career is just a different set of challenges."
As they care for their infant son, Griffin, Johnson can help, but it takes him a little more time to change a diaper or find a comfortable position for feedings. They've bought Onesies with larger necks and baby clothes with snaps rather than buttons so it is easier for Johnson to dress his son.
They continue to raise funds each year for the Moving Day Chicago walkathon. On Sunday (Oct. 18), Todd's Team, or "T�," will have about 30 family and friends supporting them. They have raised nearly $10,000 already.
While Parkinson's has its challenges, both stress that it doesn't have to be devastating all the time.
"It's not a death sentence," Greidanus said. "The truth is we don't know what will happen or when his symptoms will worsen. We do live day to day, but we are optimistic that the symptoms will progress very, very slowly."
Still, "It is scary to think about how Parkinson's disease will affect Todd in the future," she added. "I worry about 20 years from now, but I also worry about 20 weeks from now when our son is bigger, heavier and more active.
"I'm optimistic that medications and treatments will continue to improve," Greidanus said.
"We try to take it as it comes," Johnson added.