I’d like to share the story of Allison Toepperwein whose life fell apart in 2014 at the age of 37 and who has since made an amazing comeback. I hope you’ll find her story interesting and inspirational.
- Allison’s story.
- Allison shares how she faces her daily struggles head on.
- My interview with Allison.
- Learn more about Allison.
- What Allison’s story offers us.
Allison’s story
Allison has shared her story several times, so I didn’t ask her to repeat what I already know. My sources are listed in the “Learn more about Allison” section. When I quote from a source or information only came from one source, I include a link.
Devastation
In the middle of the night in August 2014, Allison grabbed her four year old daughter and fled her home and her marriage of seven years. Two and a half months later, she was divorced. And two and a half months after that, on New Year’s Eve, she was officially diagnosed with early onset Parkinson’s disease. At the age of 37. As a newly-divorced single mom.
A new year, a new attitude about life
On New Years Eve, Allison went to bed early and cried herself to sleep. As Allison told Ruth Soukup during an interview for the Do It Scared Podcast:
“The next morning I woke up with the sun, I put my feet firmly on the ground, and I said, ‘This is a new year. This is a new chance and a new beginning, a new life, and I’m not going to allow this to be the end of my story’.”
Allison went on to see a neurologist who specializes in Parkinson’s and other movement disorders and read about Parkinson’s disease. Allison learned that vigorous exercise relieves symptoms and appears to slow the progression of the disease.
At this point, Allison was 100 pounds and stood 5’7″. She had a tremor, impaired balance, tired easily, and was fighting depression. Allison stated she “was moving very slowly.” (Soukup interview)
Exercise improved her ability to move
So in early 2015, Allison started going to the track at her old high school and started climbing the bleachers. At first, she went very slowly, holding onto the rail. As time passed, she became faster, stronger, and had better balance. Every workout gave her more energy.
By the summer of 2015, she was running laps “10 seconds slower than my fastest time in high school.” Allison entered a fun run, a fundraiser for the Junior Olympics and ran a 400 meter race. She had a lot of fun and came in first place. No one knew she had Parkinson’s.
First obstacle race in November 2015
Next she signed up for an obstacle race for November 2015, which is much more challenging. Allison decided she’d better get more serious about working out, so she had someone tape her doing a pull up on a playground jungle gym set, and she ended up doing five pull-ups! She posted this to social media, and several people told her she looked like an American Ninja Warrior. (Soukup interview)
That interested Allison, but she thought she’d see how the obstacle race went first. Allison was training at the gym and the race was getting closer. In late October, she started passing kidney stones. Allison passed five kidney stones, with the last one on Wednesday, and she still ran the race on Saturday!
Race day in Texas turned out to be miserable… 50 degree weather and it rained all day. Allison has trouble with the cold weather, but she decided to run anyway. The entire time, she repeated to herself, “slow and steady, slow and steady, slow and steady wins the race.” And would you believe that according to her interview with Ruth Soukup, “out of 1,400 people, [Allison] finished fourth in her age division and in the top 13% overall”?
Allison: American Ninja Warrior
After she recovered from the day, Allison felt motivated to try out for the American Ninja Warrior contest. She began training in earnest. Not only were her balance and strength improving, but her cognition and memory were also improving.
If you’d like to hear more about how she trained, listen to her 2018 interview with Ruth Soukup (or read the transcript) or listen to her 2016 interview with Obstacle Order Podcast (Episode 70). It’s truly an inspirational story.
Here’s her submission video:
Allison competed on American Ninja Warrior in 2016 and 2017, and she has inspired other people with Parkinson’s disease to start working out and even compete on the American Ninja Warrior, including, Allison said, Jimmy Choi.
Allison shares how she faces her daily struggles head on
Before I jump to the interview, take a look at this short video which shows some of the struggles Allison faces on a daily basis and what motivates her to keep going.
Interview with Allison
I connected with Allison on Facebook, and she graciously answered my questions on October 24, 2018.
How are you doing now, physically?
Allison: I’m doing fantastic! I’m now a single mom. I work full-time and have little help with my daughter. The closest family is 45 minutes away, and I rely little in the way of friends. I’ve been able to hide symptoms from most people with meds, exercise, and a positive, faith-based focus. I very quickly set up emotional boundaries, knowing I could dwell on the negative if I wanted. I’ve never compared myself to someone else with Parkinson’s, and I believe I will be cured!
What is your current exercise routine?
Allison: Currently, I try to go to the gym with a typical weight routine 3-5 days a week. I enjoy going to the ninja gym, but I’ve had to take it easy this year due to a shoulder injury. I also enjoy going to different aerobics classes. The class will confuse my brain, which is great, because that makes my brain work to figure it out, in turn rebuilding itself.
How do you keep your motivation day-in and day-out?
Allison: It’s tough as a single mom who works full time and all the other responsibilities I take on to have motivation every day. When it’s yucky weather, it’s easy for me to want to go home and curl up on the couch rather than work out. My daughter and my health are my motivators. When I work out, I take less meds and my symptoms decrease.
How do you find the time to exercise regularly, while working and raising your daughter alone?
Allison: I have a gym that’s between school and our home, so I pick her up in the evening and drive straight to the gym, and then go home after that. Once I’m home, I’m hard pressed to get out or make time to exercise at home.
Since I’m a speech pathologist, I’d like to ask if you’ve had any changes in your speech, voice, swallowing, or cognition?
Allison: Before my diagnosis, my dad thought he was going deaf. I felt as though I was screaming and he couldn’t hear me. I slurred, especially my name, and choked on meat, water, and air. Four years later and under medication, I speak in the normal range. I do have swallowing issues every once in awhile, but I’ve found hydration to play a big role in that. Last night, I was really tired and found myself slurring. My boyfriend even asked if I had wine. I hadn’t been medication in 6-7 hours and that was one of the mild symptoms I experienced. As for my cognition, that has improved by all the stimulation at work. I work as the Communications Director for a cancer center*. All the medical jargon, research, etc keeps my mind engaged.
*I chose not to list her place of employment for privacy.
What else have you been working on? How can people find you online?
Allison: I’ve written and illustrated a children’s book that I’m working to get published. And I’m most active currently on Facebook: @litwithindotcom.
Learn more about Allison
- Read her story on the Parkinson’s Foundation website.
- Listen to her 2018 interview (or read the transcript) with Ruth Soukup on the Do It Scared Podcast.
- Listen to her 2016 interview with Elijah Markstrom on the Obstacle Order Podcast (episode 70).
- Watch her interview with Robert Cochrane for the “Faces of Parkinsons: Allison Toepperwein”.
What Allison’s story offers us
I’m grateful to Allison for sharing her story. I think her story offers insight and inspiration to all of us. First, we gain some insight into what it’s like to live with young onset Parkinson’s disease. Second, I think we can find inspiration as we’ve likely all felt overwhelmed at one point or another in our lives.
Allison is showing us what’s possible when we set a goal, make a plan, make it a routine, and keep reminding ourselves why we’re working to achieve that goal. She could have curled up in a ball and given up that New Years Day in 2015, but she decided that she would fight for the life that she wanted, and she has achieved great things as a result.
Please share her story with others.
Lisa earned her M.A. in Speech-Language Pathology from the University of Maryland, College Park and her M.A. in Linguistics from the University of California, San Diego.
She participated in research studies with the National Institute on Deafness and other Communication Disorders (NIDCD) and the University of Maryland in the areas of aphasia, Parkinson’s Disease, epilepsy, and fluency disorders.
Lisa has been working as a medical speech-language pathologist since 2008. She has a strong passion for evidence-based assessment and therapy, having earned five ASHA Awards for Professional Participation in Continuing Education.
She launched EatSpeakThink.com in June 2018 to help other clinicians be more successful working in home health, as well as to provide strategies and resources to people living with problems eating, speaking, or thinking.
Thanks for the post! What a great interview! I would love to know the name of the children’s book she is working on if you have that info! I want to be able to keep an eye out for it!
Allison is such an inspiration!
Thanks, Brynn! Yes, Allison is a big inspiration! I’ll see if I can find out how her book is coming along.
Allison said that the draft is written, and she’s just starting to submit it to publishers. Good luck to her!