For those with early-onset Parkinson’s, every victory counts

COLUMBUS JUNCTION — Lana Todd was diagnosed with Parkinson’s disease in 2004, when she was 39 years old. The news hit hard, and was not easy to accept.

“I was in a state of denial,” Todd said. “I didn’t really know that much about Parkinson’s. All I knew was … my generation, you heard the word ‘Parkinson’s,’ you connected it with Michael J. Fox. That’s all I knew.”

For a while, Todd said she was too focused on everything else in her life to come to terms with the condition.

“I had four kids, so I think I didn’t think about it as much because I just couldn’t stop,” she said. “I had to just keep rolling with the punches because we had four kids, and they were all in sports and music. Fatigue is a problem I have now, but it didn’t bother me then … I think it really hit me probably five years ago.”

For a while, Todd tried to keep her condition a secret. She kept on working as a substitute teacher, and as a mom.

“I didn’t want people to know that I had it, which was really dumb,” she said. “I didn’t want my kids to be pitied at school for having a mom with a disease … and looking back, I should’ve told them. It wasn’t anything I could help at all. I mean, it wouldn’t have mattered, I was going to get this disease no matter what.”

Eventually, the condition put her out of work.

“I kept gradually doing less and less, because I didn’t feel as confident,” Todd said. “If you have early onset, the disease will creep along, and that’s what happened to me … It’s hard because, so much of my life I was a substitute teacher. It was very difficult at first. Right before COVID, I resigned from teaching.”

By 2014, Todd suffered from dystonia — extreme muscle cramps that associated with Parkinson’s — that sometimes impeded her ability to walk for 5-20 minutes at a time. The treatment was deep brain stimulation. It was only then that she started to let the world know about her condition.

“There were a lot of people before that that didn’t know it, even in my own church,” Todd said. “I shouldn’t have been so afraid of what people think. I could’ve used it as an opportunity for people to learn more about Parkinson’s. That’s what I’m trying to do now.”

The condition brings a wide range of difficulties. Parkinson’s symptoms vary by person, but largely include trouble with muscle control, often affecting routine movements most people take for granted.

“When you walk down the street, you just walk, you don’t have to think about putting your left foot, then your right foot,” she said. “But for me, every time I go out, I’m very conscious of how I’m walking. Everyday things take so much effort … it also slows down peoples’ thinking, so I might understand a concept, but it takes me longer to verbalize, and that’s frustrating.”

Todd said she had been inspired by Davis Phinney, an Olympic bicyclist who was diagnosed with PD at 40.

“One of his mottoes is, ‘Every victory counts,’” Todd said. “I think of that if I accomplish something small, even putting all the dishes away, emptying the dishwasher, I remember what he said. Even though it’s a small victory, every victory counts.”

Todd said she also turned to her faith to cope.

"I keep going back to the fact that God is always with us, and he’s wise and just and all those things, and he never makes a mistake, so there is a reason why he wants me to do this,“ she said. ”I don’t understand why because his attributes are so much bigger than mine. I have no way to understand that. I just kept looking back at the Book of Jobe, in the Bible.“

Today, Todd continues to fight for herself. She attends boxing classes at the Y in Washington to practice her coordination.

“You can’t just not do anything,” she said. “I’ve started to compare it to other people with disabilities, like people who have lost limbs, that girl who lost her arm surfing. She has limitations too, we have to make adaptations.”

Todd is also a staunch advocate for Parkinson’s education, hoping to prevent others from facing the same uncertainty she did 18 years ago.

“I encourage (people) to get more knowledge about what Parkinson’s is, every case is different,” she said. “The number of people that get Parkinson’s has increased tremendously. Probably everyone in their lifetime will at least have some experience with Parkinson’s.”

Comments: Kalen.McCain@southeastiowaunion.com