Parkinson's disease (PD) has an uncanny ability to catch you off guard, striking when you least expect it. I was 39 years old and living an active life when my first symptoms emerged. My wife actually noticed before I did, when she pointed out that my right arm appeared stiff during a walk.

Soon after, while I was playing golf, I had a moment where my mind and body seemed to exist in two separate worlds, leading to several out-of-control shots. I also noticed that my symptoms were concentrated on my right side, affecting my fine motor skills and leading to a change in my gait.

My symptoms progressed and reached a breaking point when a stumble over my right foot sent me tumbling down the stairs at home. It was a wake-up call and a realization that I needed to find out what was causing these problems.

The following year and a half became a flurry of doctor’s appointments and diagnostic tests in search of answers. After seeking second opinions, the verdict finally arrived in 2007: Parkinson's disease. Accepting this harsh reality was a struggle, followed by the onset of anxiety, fatigue and an apprehension towards even the simplest of tasks. These limitations became my new companions, guiding my decisions.

In pursuit of a better life, I explored different treatment options — acupuncture, hyperbaric oxygen therapy, massage, muscle activation techniques, peptide therapy, IV nutrition therapy and more. Although I was making progress, I needed to go further.

A pivotal turning point was when I engaged with a movement disorder specialist (MDS). This collaboration reshaped my perception of how to manage Parkinson’s. Together, we created a holistic approach to tackle my symptoms head-on, establishing a plan that revolved around exercise, diet and stress management. We connected in a profound way that changed my outlook and helped me learn new techniques for dealing with PD.

I also began looking into resources from the Parkinson’s Foundation to help navigate the disease. I found the Living with Parkinson's section on their website to be a great resource for information. One of my initial challenges after being diagnosed was finding support, so I started incorporating their emotional and mental health tips into my everyday life.

Fueled by positivity and visualization, I envisioned a life free of mobility hindrances, propelling me towards greater activity and diminished fear. This journey of embracing Parkinson's became a lesson in understanding my body and its signals.

However, in February 2020, a setback led me to the emergency room. My Parkinson’s medications had become ineffective, and I felt like my body was betraying me. Three months of at-home care steered me towards a groundbreaking decision — deep brain stimulation (DBS) surgery. After meticulous research and consultations with my neurologists, I underwent the DBS procedure in November 2020. This surgery marked a new chapter in my life, bringing improvements to my mental, physical and spiritual well-being.

Utilizing the lifestyle strategies from my MDS and feeling rejuvenated after DBS surgery, I began exploring creative outlets. Inspired by my love for writing, I established Be Still Publishing, a platform where I share my poetry, lyrics and music. In 2023 I released my first audiobook, "Embracing Parkinson's: A Journey of Acceptance and Healing," featuring one-on-one conversations between me and my MDS, Joe Green, offering insights into the world of a person living with PD and strategies for managing the condition.

In my journey to understand and deal with Parkinson’s, I discovered one of the best ways to manage this disease is through the help of healthcare professionals. I was surprised to learn that only 9% of people with PD receive care from a movement disorders specialist. This hit close to home, as I worked very closely with my MDS for years and it made a huge difference in the way I viewed and managed my Parkinson’s.

I am grateful for the support of my neurologist and MDS, as well as my friends and family. Despite the challenges I face, I refuse to let Parkinson’s sideline my spirit.

People living with Parkinson's who seek expert care have better outcomes. Find expert care near you.

Rarely is there a time that I don’t think about Warren. It’s uncanny. I don’t love him, yet he is with me all the time, so I seek ways to accept him. Warren is the name my three kids and I gave to my diagnosis of young-onset Parkinson’s disease (YOPD). Instead of saying the scary term, “Parkinson’s disease,” we laugh and say things like, “Warren is around,” or “Warren kept me awake all night.” I have no choice but to respect him, as he has taught me about gratitude and the importance of being present.

I was diagnosed with YOPD at 41 years old. Following the diagnosis, I began to realize how many of my symptoms were signs of Parkinson’s. I had lost my sense of smell seventeen years earlier. At the time, I thought my son was especially sensitive to smells, and I often joked that he “took my sense of smell.” I was also a marathon runner and I started to fall a lot during training. My foot also started doing this funky, painful turn. I had no idea that this may have been a symptom of PD.

Two years later, and with much stress in my life, I developed a tremor in my arm and sought medical advice. When I visited a neurologist, she watched me walk and noticed that my left arm did not swing. I had never even noticed that!

I never imagined being diagnosed with YOPD. I was a single mom and a full-time teacher raising three kids. I tried to find child-friendly literature to explain Parkinson’s to my kids; there were some books, but most of them included a surplus of medical jargon. I am currently working on a children’s book to provide families with the springboard they need to discuss this disease and how it may impact them.

I was in denial about PD for a long time, and it was my daughter’s school project that pushed me to accept my diagnosis. She created a carnival “Go Fish” game titled, “Fishing for a Cure for Parkinson’s.” WOW. Kids say the darndest things.

Now ten years later, I “runwa” (run/walk) and try to get my heart rate up nearly every day. I walk “BIG” and do a variety of exercises. I also try to challenge my brain daily. I am stronger than I have ever been, and I put my physical and mental health first. It hasn’t been easy, and Warren sometimes still shows up, but I eat healthy and I have finally figured out how to stay asleep! I work hard to keep a positive attitude.

I was first introduced to the Parkinson’s Foundation through the Community Partners in Parkinson’s Care program. Now that my children are older, I can devote more of my time to supporting the Foundation and assisting the Parkinson’s community! One way I show my support is through fundraising for Moving Day. This past year I raised more than $1,200 for Moving Day Twin Cities, and I plan on surpassing that amount next year.

I look forward to sharing my knowledge about PD and finding more creative ways to raise money for research. I hope that one day, I can finally break up with Warren! 

Learn the 10 early signs of Parkinson’s disease.

I am 63 years old now, but I was diagnosed with tremor-dominant Parkinson’s disease (PD) four years ago. After much encouragement from my children, I decided to visit a neurologist to get answers.

I underwent a 30-minute diagnosis session with my local neurologist. At the appointment, he said, “You have Parkinson’s. You have 10 years to live, and it will not be good.” Then he walked out of the office.

I sat there in shock, not knowing which way to go.

A dear friend connected me to Dr. Joseph Jancovic from Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence. Dr. Jancovic is a specialist in Parkinson’s and movement disorders. After a thorough exam, he affirmed the PD diagnosis but decided to completely change to my medications. Within two days after this appointment my symptoms diminished, and my sense of self returned.

I have retired from work and filed for disability because Parkinson’s has affected my mental capacity, especially when it comes to dealing with stress. Despite this, I am determined to not allow Parkinson’s disease to define who I am.

I do everything I can to exercise and stay active. In the last four years I’ve hiked to tops of mountains in Colorado, taken up long range rifle marksmanship at 1,000 yards or more and continued with my love of Argentine tango. I have also put 1,000 miles in my bicycle in the last three months, and I do not plan on stopping.

I found out about the Parkinson’s Foundation while searching Facebook for Parkinson’s-related groups. I have started looking through the resources on their website for support as I continue to navigate this disease.

My best advice is to live life day by day — and sometimes minute by minute. You never can tell what will happen next.

Find a good a PD care team. Know that there will be good days in there, too, and make the most of them.

Here’s to a cure!

You are not alone. Find expert Parkinson’s care in your area.