My PD Story

At 18 years old I wanted my college degree and to travel the world. So, in 1997, I joined the United States Air Force and spent the next 10 years meeting an array of extraordinary people from around the world. I graduated with my bachelor’s in healthcare administration and explored my assigned locations of Texas, Alaska, Germany and Virginia. My service time was honorable and memorable.  

As my family grew, new opportunities presented themselves. We arrived in Carmel, IN in the fall of 2015. I continued my training programs and completed my master’s degree in healthcare informatics. I focused on raising our children, a blended family, but as the days passed there was a new wave of uncertainty with my thoughts, movement and people — something I’ve never experienced throughout my lifetime.  

In 2016, I noticed physical changes in my body. I seemed to have become clumsy and uncoordinated. I began losing my balance and falling. I recognized my left arm had stopped working, as if it was an ornament on my body. My symptoms got worse, causing tremendous frustration, heartache and fear because nobody in my medical circle of specialists could tell me what was wrong with me!  

I awoke one morning to find that a clump of hair had fallen out leaving behind a bald, baby-smooth patch of the scalp, and then, increased hair thinning began. It’s impossible to imagine the mental state of living with an unknown condition affecting your physical and mental state with the harsh realization that no one knows what was wrong.  

In 2017 I had 96 appointments for multiple diagnostic testing, leg therapy, hand therapy, vascular testing and injections. As my left arm and hand worsened, my physical therapist finally said, “It appears as though your neurons are not firing properly.” She reopened the window to another conversation with the neurology department who finally questioned a neurological condition, but I was told I was too young to even think of such a disorder.  

In 2018 the search for the answer intensified with about 70 appointments. I was referred to the Mayo Clinic in Rochester, MN. Their neurology team ruled out degenerative brain diseases but oddly enough was able to track a constant tremor in my left leg and a functional tremor in my left arm. Due to distance and cost, they referred me to the Movement Disorder Clinic at Indiana University Hospital, a Parkinson’s Foundation Center of Excellence.   

On September 5, 2019, I finally saw the movement disorder specialist, Ruth Baird, MD. She diagnosed me with young-onset Parkinson’s disease. For four years I suffered, feeling and noticing changes about myself that no one could diagnose. She diagnosed my condition in 10 minutes. I stayed silent and emotionless through the diagnosis, but tears began to stream down my face as I left the office, bittersweet I kept telling myself. 

I engaged with my family and tried not to think of the worst. I had so many questions, among them:   

• How long do I have before it gets worse?  

• How do I love life with the heartbreaking realization that my life has changed forever?  

The heartbreaking reality that no one could tell me the how and when. My life now had an expiration date, unknown but defined by a disease and its relentless progression. It’s sensitive, internal, and frightening!   

I enrolled in a full genetic tracing for Parkinson’s where every known genetic factor was evaluated. Results showed that I had no genetic factors associated with Parkinson's. After receiving my genetic printouts, I re-evaluated where my head rested over the years and stressors known and unknown.  

I then reviewed my military and civilian medical records and discovered I may have experienced symptoms as early as 2003. I had a funny feeling in my left leg, but appointments could not explain nor find the cause. Around 2006 issues with my left arm began. Military physicians noted unexplained, pulled muscles, tendinitis and even ulnar issues. For the next several years I sought care when these unknown symptoms were at their worst.   

My mind traveled “How does one prepare for living with Parkinson’s?” It seems to be a trial-and-error approach to finding what combination is best for helping one deal with symptoms. Parkinson’s seems to be like a piñata — a piñata is never filled the same way, and each person has a different way to strike for it to break. 

In 2019 the diagnoses of Parkinson’s changed all my plans, along with driving my desire to help others in need. My health and functionality to sustain myself became my forefront. As my training and research in physical health increased I knew my voice and desire could help many more.  

Restoring muscle movement, circulation and revitalizing sensitivity to any extremity are important factors to living life. In 2021 I became a certified Rock Steady Coach at HQ Rock Steady Boxing. In 2022 I transformed an opportunity to help others who battle challenges. My husband Frido and I opened a business in Carmel IN, called Keeps Moving, Mindful Motivational Movement.  

In my personal time, I assist veterans with health benefits, care management, disability claims and questions. Having an opportunity to open doors for others and helping with one’s daily needs is the greatest reward.   

Helping myself and others understand how to deal with the “new me” or the “new you” will always be a topic of conversation. I’m still me just with a different flair.  

I am fortunate to have found outlets like Rock Steady Boxing HQ, local and nationwide support groups, and vital resources in organizations locally and worldwide, such as the Indiana Parkinson Foundation, Parkinson Awareness Association of Central Indiana and the Parkinson’s Foundation. I am mostly fortunate to have an array of individuals who support, cheer and stand beside me day in and day out!