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It’s hard for people with PD to talk to others about the disease because sometimes it’s difficult for the patient themselves to describe what they are feeling. Talking to other PD patients helps us express what we are going through in ways we might not be able to express to family and friends.
Since 2021, The Secret Life of Parkinson’s podcast has shared these stories and our daily experiences, and the responses we receive after each episode remind us why these conversations matter. This page brings those voices together so others can read, relate, and be inspired.
You can also be part of it by sending in your story!
My journey began in June, 2024. It began with a tremor in my left hand. I started with my GP. He diagnosed it as Essential Tremors. I requested a second opinion with a neurologist. I had a feeling that it was PD and was diagnosed on November 1, 2024.
This news left me feeling broken. It consumed my life for the first couple of months. I went down the rabbit hole of the internet. At first, this only made me feel more broken. I read about all of the scary symptoms and worried about how things would be in my future.
The neurologist stressed that exercise was important. I have incorporated regular exercise into my routine for the past 25 years. This gave me hope because it was something I could control. This is when I found the podcast “My Secret Life with Parkinson’s “. The episodes are very informative yet they are presented in a fun, light manner. The hosts Jessica and Brian are very relatable. I don’t feel so alone. This podcast helps me realize there are others out there going through the same thing.
I admit I still have my moments, but they are fewer and farther between. The podcast has motivated me to be part of an exercise study through the Cleveland Clinic. It gives me a feeling that I can do something to help myself and others.
My “journey” with Parkinson’s Disease began 20 years ago. It was on May 25, 2005 that I was diagnosed with PD at the Cleveland Clinic by Dr. Benjamin Walter. His diagnosis stated that I had a mild and slow progressive form of the disease. He did not say that I was a “victim” of PD, or that I “suffered” from PD, but that I had a mild “form” of the disease. He started me on a prescription of “Mirapex” and told me to exercise. Exercising was not new to me, so I continued practicing yoga, Pilates, biking and power walking. I then discovered an exercise program for Parkinson’s and that connected me to Jessica Walcott Krauser and the 5KforJK. I was fortunate to be able to make the three-hour drive from Boardman Ohio to Columbus Ohio with some friends to attend the second annual 5KforJK fundraiser. That event solidified in me that I was not alone in this fight against PD, that there were organizations who CARE and that there was help.
My husband and I plan to attend our third 5KforJK in 2025. The impact of this event is powerful in many ways. Power comes through added Knowledge about the disease, power by connecting with others who are also fighting the disease, power through the availability of support in this battle, and the power of exercising.
The 5KforJK’s influence extends beyond Columbus, Ohio to Boardman, Ohio where “A Walk in the Park” will be launching its Third annual event for a Parkinson’s Awareness fundraiser on April 27, 2025. Many thanks for the launching of 5KforJK and the ripple effects of that event.
I was diagnosed with Parkinson’s in 2013 at the age of 57. After receiving my diagnosis, I found myself gathering as much information as I could about this neurological disease. I learned that daily exercise could help to delay the disease from progressing. Prior to my diagnosis I was not a gym rat at all.
However learning that exercise could be beneficial my hunt for a gym began. One Sunday afternoon I begrudgingly attended a Women’s Parkinsons’ symposium. I really wanted to skip going as I wasn’t looking forward to walking into a meeting room, not knowing a soul but knowing that each woman there had the same dreaded disease as me. Little did I know I would end up at a table with Melissa Carlson the founder and owner of PD Next Steps. Melissa and I interacted at the table but as the symposium was coming to a close and I gathered my belongings to leave so did Melissa. We chatted for a few minutes, she asked me a few questions and then told me that she had a gym called PD Next Steps where people who had PD worked out. She handed me her business card and said “I would love to see you sometime”.
Melissa’s smile was contagious and her personality bubbly. Driving home I told myself I was definitely going to check this place out. I don’t remember exactly how many days went by before I actually went I am forever grateful that I did. Melissa’s fun loving personality and welcoming smile immediately put me at ease. Not only did she make me feel welcome, but all of the participants made me feel right at home. In no time at all I became part of the family/community that not only works out together but does life together.
We all share the same disease, but we also share our laughter, tears, joy and sadness. We are there for each other to celebrate our victories and encourage each other when things are rough. I have never been part of a community who can go from being total strangers to a community of people who genuinely care for each other. While i am not grateful to have Parkinsons I am forever grateful that I am a part of the PD Next Steps community. It is a community of friends who make life with Parkinsons a lot easier to live with. I would highly recommend to anyone who is diagnosed with this annoying disease to look for a community. It could be a life changer.
Thank you Melissa for being our coach and biggest cheerleader and to the PD Next Steps community for all the blood, sweat and tears we share together.
Keep moving my friends.
Witnessing my mother’s 14-year struggle with Parkinson’s disease instilled in me a deep understanding of its relentless devastation. Living with the fear of developing PD myself, due to experiencing early symptoms, made my 2023 diagnosis all the more terrifying, even though I expected it. The fear and depression that followed were overwhelming.
I knew from my mother’s experience that exercise offered the only real hope for slowing the disease’s progression. My wife and I immediately began researching specialized PD exercise programs, a search that thankfully led us to PDNextStep and Melissa Carlson. Melissa, the founder and trainer, isn’t just knowledgeable and skilled; she’s genuinely caring and deeply passionate about empowering individuals with PD to live their best lives. From our first meeting with Melissa, we knew PDNextStep was exactly what I needed.
PDNextStep offers more than just challenging, personalized exercise classes. It provides something equally crucial: a supportive and vibrant community. The opportunity to connect with others facing similar challenges is invaluable, and PDNextStep cultivates an environment where members discover that a fulfilling and joyful life is absolutely possible, even with Parkinson’s.
After a year at PDNextStep, I can honestly say it’s been a game-changer. Joining was the most positive and impactful decision I’ve made since my diagnosis. I wholeheartedly recommend PDNextStep to anyone navigating the challenges of Parkinson’s disease. It’s more than just exercise; it’s a lifeline.`
I was diagnosed with young onset Parkinson’s 25 years ago (age 41). I have forgotten what normal feels like, as this has become my new normal. I was fortunate to be able to work for 10 years after diagnosis, but was forced to quit when my dyskinesia became so bad that I was frequently falling. Many of these falls were quite severe resulting in a broken rib, a severely bruised sternum, as well as lots and lots of bruises. 13 years ago, I was again fortunate to have deep brain stimulation surgery. This helped to even out my on and off periods, and reduced my dyskinesia. There were a few side effects from the surgery, but the positives greatly outweigh the negatives. As the disease has progressed, I find my dyskinesia has returned, as have my periods of rigidity. I experience other symptoms that many people don’t think of when they think of PD including diminished vocal ability and difficulty swallowing.
What I want people to know is that the diagnosis of PD is not a death sentence. For the first 10 years, I was very active with work, travel, and even skiing. During the last 15 years, I’ve learned the value of exercise, more recently with pdNextsteps. PdNextsteps is a community for people living with PD started and led by Melissa Carlson. I have been with Melissa since she started this amazing journey. She focuses on functional movements through high intensity interval exercise and strength training. She provides cognitive challenges for us, encourages big voices, and most importantly, she proves a safe place for people to be themselves, without having to explain themselves, of feel self conscious. The group has become a family and source of support. The value of this safe place cannot be overstated as I have a memory that has stuck with me for 10 years: I fell in the self checkout line at Kroger. No one offered to help, or asked if I was okay- I have a vivid picture of people moving away from me, and a woman ushering her child away from me as though I was drunk, or dangerous.
I remember telling Melissa one time that I thought my Parkinson’s was too far advanced for exercise to help. I couldn’t have been more wrong! I attend her classes 5 days a week- these classes have been critical to my maintaining my independence!
While my husband does a lot for me, I am still able to do a lot on my own.
Melissa genuinely cares about each of us. She continues to bring new topics and speakers to the gym that are pertinent to people living with Parkinson’s . Her mantra is “knowledge is power”.
If you are on Instagram and have PD, you probably have seen, “imstillallie”. Brian and I had the opportunity and privilege to interview Allie Signorelli, a Young-onset PD powerhouse. Allie wanted to know why we named the podcast The Secret Life of Parkinson’s. Here’s the conversation.
If the Secret Life of Parkinson’s podcast has made a difference in your life, can you tell us how? Whether it helped you feel less alone, start exercising, or even just shift your mindset a little, we want to know! Every story matters, even if the change feels small. Your experience helps us show others just how powerful that impact can be. Fill out the form below, and we’ll share your story however we can to reach and support those with Parkinson’s.
