Background Information
I am Allie Toepperwein, I’m from Houston, Texas, and I have been symptomatic for almost ten years; however I was diagnosed just under five years ago. My first noticeable symptom, a tremor, appeared right around the time of my daughter’s birth. It was slow and very intermittent, unless I was stressed.
On August 1, 2014, I left my husband, took our daughter with me, and we moved in with my dad. Two and a half months later, I got divorced. Because of the extreme stress of a divorce and my entire world being flipped upside down, my symptoms went from manageable to disabling. I lost complete use of my left arm. I drug my left foot. I couldn’t cut up my daughter’s food or put on a coat unassisted. I even began choking on everything and I began to slur. That is when family members insisted I seek a doctor’s opinion. I had just turned 37, and on New Year’s Eve, five months after leaving my husband, I was diagnosed with Parkinson’s disease.
Immediately, I wanted expert answers to the many questions a young woman has regarding this type of diagnosis, so my general neurologist referred me to a Movement Disorder Specialist (MDS), Dr. Joseph Jankovic. He took one look at me, confirmed the diagnosis, and told me to start moving. “Exercise is the only thing proven to slow progression,” he said. I began exercising, and quickly built up stamina. In fact, within 6 months I was only 10 seconds slower in a quarter mile than my fastest time in high school. I began training for my first mud run, and while doing so I posted video on my social media channels. Friends began commenting I looked like an American Ninja Warrior (an NBC TV show I had never watched). So, I Googled the show and thought naively, “I can do this!” In April of 2016, just over a year after I was diagnosed and began exercising, I competed on the hit TV show.
I’m still a single mom who works full-time as the Communications Director for a top Cancer Center. I have little help with my daughter, as my closest family is about 45 minutes away. We still go to the ninja gym and play. I am more active than I’ve ever been in my life. My meds are still at very low doses and, as long as I’m not dealing with stress, I have few visible signs of PD.
Art, furniture restoration, and exercise are my therapies, along with my faith, my daughter, and living life to the fullest. I adore the tribe of strong women who support me, my dad, the rest of my family, and my daughter, who is my biggest fan.
Five Questions
How did your Parkinson’s diagnosis come about?
After being symptomatic for five years, I was diagnosed on New Year’s Eve in 2014. (See background information for additional details.)
What are the more significant challenges you face, and how do you meet these challenges?
I would say the most significant challenge is overcoming people’s perceptions of me, before they get to know me. I’m a single mom, so dating and job hunting are challenges. When I was job searching and hunting for a man, I found people judged me based on a diagnosis of the norm. I have proven I’m not the norm in really anything I do; however, getting past the initial perceptions are challenging at times. But, of course, if they aren’t willing to judge me based on my own merit, the relationship is doomed.
How do you cope with having Parkinson’s disease?
I think of it as nothing more than a nuisance. I don’t give PD more power than it deserves. PD has given me the opportunity to be fearless, to concentrate on my blessings, and to live more in the now. I know very well now that in order to live my best life, I have to remain as free from stress as possible. I go to a neuro physical therapist who has helped me improve my range of motion and work on muscle deviations caused from the PD. I take a supplement called n-acetyl cysteine or NAC that I believe has helped improve my memory and cognition, and prevented progression.
What has surprised you most about living with Parkinson’s disease?
How much I could turn my Parkinson’s into purpose! I’ve been put in a position to do as much good with it as I possibly can; and I’m not done, yet! PD has given me a platform from which to grow and inspire others, including my daughter and myself, in ways we never would have otherwise. And I’m stronger emotionally and physically than I’ve ever been.
What wisdom would you offer someone who is newly diagnosed? Or, what would you want your newly diagnosed self to know about the journey ahead?
The first thing I suggest is to take videos of yourself now. Have someone document you at your worst. Don’t be embarrassed. Take it just for yourself. Then, when you start and are on treatment of any kind, you can measure yourself. It’ll help to gauge whether your meds are working. You can hopefully see how far you’ve come and you can tell when you are progressing, and maybe have a conversation with your doctor about changing your care plan. I never took any videos before starting medication. I was too embarrassed. It’s hard, five years later, to look back and see just how far I’ve come, but it also can be a tremendous motivator to keep going.
And remember attitude is everything. Don’t compare yourself to Michael J. Fox or Robin Williams or even me. Everyone is different in this world. So, what didn’t work for someone else with Parkinson’s may work for you! That also means that when you hear or see someone much more progressed than you, that isn’t an indicator that this will be you. I believe I will be cured one day soon! My doctor said I am improving, and when I saw him last I exhibited no signs of the disease when medicated.
So, just because this is a non-curable, progressive disease, it doesn’t mean it’s a death sentence, nor does it mean you have no control over it either. I believe it all rests on your outlook.
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Thank you, Allie, for sharing part of your story with PD Wise.
Allie Toepperwein was diagnosed with young-onset Parkinson’s disease in 2014, at the age of 37. Since then, she has worked to raise awareness, provide education, and motivate people with PD to take control by seeking to live their best life. Highly sought after as a speaker, she also blogs for many outlets, including her own blog Lit Within. She has also competed on the hit NBC TV show, American Ninja Warrior.