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Wednesday, October 9, 2019

Parkinson’s diagnosis won’t hold Allison Toepperwein back from marathon goals

Lindsay Peyton       Oct. 9, 2019


American Ninja Warrior, blogger and Parkinson's patient, Allie Toepperwein, 41, is now going to be the co-chair for the for the marathon for Houston Area Parkinson Society. After being diagnosed with Parkinson’s, Toepperwein started her workouts on the playground of her daughter’s school. Thursday, Sept. 12, 2019, in Houston.


Allison Toepperwein hit rock bottom on New Years Eve. That day, she had been diagnosed with Parkinson’s disease, just four months after separating from her husband, whom she later divorced.
It was the close of 2014 — and she was only 37-years old. Now a single mom, she was staying with her father, back in her high school town of Columbus.
“I put myself and my daughter to bed at 8 p.m. on New Years Eve, and I cried myself to sleep,” Toepperwein said. “I’d lost everything — my home, my marriage, my ideal adulthood and my hope.”
She put 2014, and everything that happened with it, to bed.
The next morning Toepperwein rose with the sun. “I put my feet firmly on the ground and said, ‘This is not how my story is going to end. You’ve got to pick yourself up and figure it out,’” she recalled.
That was the start of a whole new journey, one that revolved around exercise.
Toepperwein had first noticed a tremor in her arm when her daughter was born, four years earlier. The symptoms returned whenever she felt stressed.
“The only way to stop it was to grab my left wrist with my right hand,” Toepperwein said.
At the time, she thought it might be related to a car collision she had survived in 2008.
“It broke my face, that’s how I describe it,” Toepperwein said.
She thought maybe her nerves were damaged, perhaps there was some undiagnosed whiplash with a lasting echo.
“Never in my wildest dreams did I think there was something wrong with my brain,” Toepperwein said.
Her symptoms continued to worsen during the divorce proceedings. “The stress pushed my symptoms forward so far that I was quickly becoming disabled,” she said.
She now had to use her right hand to move her left arm. She started dragging her left foot. Her speech began to slur.
“Then I started choking,” she said.
She lost weight, and she overheard her daughter, who was only 4 at the time, telling others, “My mommy always cries. That’s all she does.”
Her general practitioner tried every test and X-ray available. “You name it, I had it done, the whole work-up,” she said.
Finally, a DaTscan imaging tool revealed Parkinson’s disease.
Four days after her diagnosis, she started writing a blog.
Toepperwein had already purchased a domain for what she thought would be a skincare business. She was obsessed with beauty products and was creating a skincare line in her kitchen.
The name “Lit Within,” with the motto, “My light cannot be dimmed, for I am lit within,” took on a whole new meaning for Toepperwein. She decided to use the site to describe her experiences.
By the end of January, she had more than 300 followers. “It was meant for the single mom, or the mom who was married, the person struggling,” she said. “People saw strength in it.”
Toepperwein started seeing Dr. Joseph Jankovic, founder and director of the Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine.
“In 1977, he opened a clinic, and that was the year I was born,” Toepperwein said. “I thought this must be fate.”
He told her to start moving. “Exercise is the only thing that can slow Parkinson’s down,” Toepperwein said.
She headed to her old high school track and started to run, but all of the stress and depression had left her emaciated at only 105 pounds.
“I would walk a lap and then do the bleachers,” she said. “I’d hold the railing. I went very slowly. I started with 10 minutes; then I worked up to 15. I went every day.”
By May, she was already a force. She went to workout with her 18-year old niece. “I was 20 years older, and I was kicking her butt,” Toepperwein said with a laugh.
Some coaches saw her and asked her to run in an alumni track meet. She agreed — and won.
Then, Toepperwein decided to train for a mud run. She learned to do a pull-up and asked if she could practice afterhours at her daughter’s school, swinging on the monkey bars.
Someone told her that she looked like an “American Ninja Warrior.”
She asked what that meant — and then learned about the popular TV show where individuals compete on timed obstacle courses. “That sounds like fun,” she thought.
A Groupon for Iron Sports Gym on FM 1960 showed up in her inbox the next day, claiming it was the place where ninja warriors are made. Toepperwein saw it as a sign.
She bought the Groupon and started working out. She also sent in her application for the TV show and got the call in April 2016.
“I became the first person with Parkinson’s to compete,” she said. Toepperwein also was able to share her story on the show. “Parkinson’s has actually elevated my life,” she said.
Five years after her diagnosis, she moved to Houston, has a job as communications director at the Dan L. Duncan Cancer Center, now blogs for the Huffington Post and has become a public speaker. Her Parkinson’s symptoms are minimal.
“Lit Within has grown and evolved too,” Toepperwein said. “It’s really meant to just empower people to find their light - and attitude is everything.”
She explained that sometimes the worst problem is simply negativity.
“The people with the biggest problem in life are the ones who have nothing wrong with them, but they’re negative about everything,” Toepperwein said.
Instead, she wants people to find hope.
“I have a neurological disease that is progressing, yet I am stronger than I have ever been in my life,” she said.
The keys to health, Toepperwein added, are eliminating stress, eating right, exercising, having faith and taking supplements.
Her latest endeavor is competing in the Chevron Houston Marathon, which she is also chairing for the Houston Area Parkinson Society.
“The Marathon is our best fundraiser, and it’s the biggest platform we have for raising awareness of Parkinson’s,” Kathleen Crist, executive director of Houston Area Parkinson Society, said.
She explained that this will be the organization’s 26th year to participate. “We wanted someone who reflects the spirit and mission of our organization and serves as an inspiration for others,” she added.
Toepperwein fit the bill.
“We were really looking at dispelling the myth that Parkinson’s only affects older white men,” Crist said. “That’s just not what Parkinson’s is. People forget this can happen to anyone.”
In addition, Crist said Toepperwein is a model of resilience when facing a Parkinson’s diagnosis. “Yes, it’s harder and more challenging, but you pick yourself up, dust yourself off and get back to your life,” Crist said.
Houston Area Parkinson Society is a nonprofit, founded in 1974 that offers a number of programs and services to the Parkinson’s community, free of charge. In addition to speech therapy, the organization offers yoga, tai chi and even no-contact boxing.
“We hope to offer the support and guidance people need, so they can get back to the things that bring them joy, manage their Parkinson’s and keep moving forward,” Crist said.
The Houston community with Parkinson’s disease benefits from seeing a role model like Toepperwein, Crist added.
“Allie is the most determined person I’ve ever met,” Crist said. “She just has a spirit and a nonstop drive to not let Parkinson’s define her life. She has figured out a way to embrace it and not let it defeat her. She has a real champion, warrior spirit about her.”
Toepperwein inspires others to think, “If she can do it, so can I,” Crist added.
“I may be the last person to cross the line, but the point is, you crossed,” Crist said.
Toepperwein wants to use the marathon to raise awareness of Parkinson’s.
She also enjoys training for something new, now that she already tried American Ninja Warrior, the Texas Independent Relay and Savage Race.
Still, she’s not a huge fan of running long distances. “If there’s something I’ve learned, it’s that I know my limits, but I also know our limits are far past where we usually think they are,” she said. “I know I can push past them.”
Toepperwein wants others to push past challenges, too.
“Something that happens when you’re faced with an obstacle like this is you realize that tomorrow isn’t promised to anyone,” she said. “It really has given me the mindset to appreciate every day to its fullest. Live each moment. Just do as much as you can while you can.”
That message is intended to extend beyond the Parkinson’s community. Toepperwein wants it to reach everyone who is struggling with something.
“It’s about overcoming,” she said. “If you can’t crawl over an obstacle, push it down or go around it. But never give up.”
https://www.houstonchronicle.com/lifestyle/renew-houston/fitness/article/Parkinson-s-diagnosis-won-t-hold-Allison-14503822.php

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