PARKINSONZ ACEs
Adapt, Conquer, Empower Others
Meet Joni Lowe
Redefining Diagnosis: A Choice in Perspective
When Joni Lowe walked into her first appointment with a Movement Disorder Specialist in 2013 at the age of 44, she thought simply, I shake. This is my experience. Leaving the appointment with a Parkinson’s diagnosis, her perspective remained unchanged.
Rather than immersing herself in research or fear, Joni took a unique approach. She chose not to dwell on the diagnosis, believing that doing so would invite negativity. Instead, she focused on her own experience, trusting that it was enough to guide her forward.
“My mindset has been my greatest strength,” Joni shares. “From the beginning, I knew I am not my disease.”
Living Fully, Not Fighting a Battle
For Joni, Parkinson’s is not something to fight—it is something to live with. She embraces self-love over struggle, movement over stagnation. Exercise is not a battle; it is a celebration of what her body can still do. Nutrition is not about control; it is about discovery. She experiments with plant-based eating, finding small ways to improve how she feels.
Her diagnosis ignited a deep determination to experience life more fully. She chased adventure, fulfilling long-held desires: flying on a trapeze, tackling double black diamond courses, surfing, hiking, whitewater rafting, and cycling. Parkinson’s didn’t hold her back—it propelled her forward.
Through it all, she holds onto one truth: I choose love.
Pushing Boundaries, Setting Goals
Joni’s journey is defined by action. She pushes her limits, not to prove anything, but to honor her own ambitions. Her first Parkinson’s fundraiser saw her hiking 15 miles; the following year, she upped the challenge, completing 22 miles. In 2024, she rode 30 miles in a cycling event for The Michael J. Fox Foundation.
And she’s far from finished. Her goals for 2025? A 100-mile bike ride, a 15-mile hike, and a 5K run.
For anyone newly diagnosed with Parkinson’s, Joni offers simple yet powerful advice: Your life is not over. If anything, her journey proves it can be the start of something extraordinary.
The Questions
What was your initial reaction to your diagnosis?
Walking into my first appointment with a Movement Disorder Specialist, I was thinking I shake. This is my experience.
When the appointment was over, I thought the same, I shake. I walked out of the exam room with an attitude of this woman wearing a white medical coat with her name followed by a few letters (obviously the Neurologist, Movement Disorder Specialist), thinks I have Parkinson’s disease.
I chose not to focus on the diagnosis because to me, it was like signing up for the doom and gloom of Parkinson’s Disease. I chose to think I was diagnosed with Parkinson’s, not I have Parkinson’s. It took a couple years to get to the point of thinking I have Parkinson’s.
I did very little research. I didn’t want to learn anything about it. My personal experience is all I needed. It was enough for me.
I did not cry that first day.
What helped set you on a positive trajectory?
My overall mindset on life has been the biggest source of strength in handling the diagnosis and the disease. From the beginning I knew I am not my disease. It was difficult getting used to it. I wanted to feel better by choosing the right food to eat, not the right medication. I tried eating gluten free and I didn’t feel a difference. I tried eating vegan and I felt a little difference. I’d like to kick it up a notch to a Whole Food Plant Based way of eating. For now, I’m a work in progress on eating WFPB.
Often, people say they’re fighting Parkinson’s. If that works for them, great. Personally, I don’t want to fight anybody or anything, especially myself. Self-love and self-care are essential. I exercise not because I’m fighting PD. I exercise to celebrate what my body can do today.
How has your diagnosis changed how you perceive your future?
My diagnosis increased my desire (need) to do physical activities that I had always wanted to do. PD turned on an inner passion to make my desires in to reality. I became a thrill seeker. I did the following activities: fly on a trapeze, do double black diamond course at an adventure park, surfing, hiking, white water rafting, and bike riding.
A blog post from early diagnosis:
The words in this image have come to mind after thinking often about what’s ahead of me. My body, my shell, the part of me you see may begin to function differently, look differently, and may (honestly) piss me off.
I may stumble. I may fall. I may slur my words. I may noticeably shake all over, all the time. I may lose my voice. I may choke on my food. I may lose my fabulous posture. I may lose strength. I may walk slowly. And the list goes on and on.
I realize the list is not me. Who I’m being in dealing with all those possibilities is who I am. I am my spirit. I am my essence.
Loving my body is simply a choice. This is true. I desire to always choose an abundance of body love, even when my body does not meet the simplest of expectations. This is what I think about, this is how I currently feel at this moment.
But honestly, will I love my body, or will I be pissed off, bitter, and angry?
Right now…
I CHOOSE LOVE.
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My diagnosis increased my desire (need) to do physical activities that I had always wanted to do. PD turned on an inner passion to make my desires in to reality. I became a thrill seeker. I did the following activities: fly on a trapeze, do double black diamond course at an adventure park, surfing, hiking, white water rafting, and bike riding.
What advice would you give someone new to PD?
Your life is not over.
What are you most grateful for with respect to your Parkinson's diagnosis?
I am grateful for taking action to meet my wants/needs. I experienced activities I had been wanting to do for so long. I am so grateful for all the thrills I’ve taken.
What are some goals you have set and which have you accomplished?
For my first PD fundraiser, I did a 15 mile hike as part of a relay team. I was hiking regularly at the time, but 15 miles was out of my comfort zone. It felt great to do the 15 miles. The following year I didn’t hike much so I signed up to hike 10 miles. When I was done, I desired more. I hiked another 12 miles for a total of 22 miles. I’m very proud of hiking so many miles. I did a bike riding fundraiser September 7, 2024 for The Michael J. Fox Foundation. There were a few distance options. I chose to ride 30 miles. My goal was to complete it and that’s what I did
What’s next?
100 mile bike ride, 15 mile hike and 5K run by the end of 2025.
