My PD Story

My Parkinson’s disease (PD) diagnosis started one morning when my wife said to me that I should see a doctor about how I was walking.  She had noticed that my gait had changed, and had been searching online for reasons why. As soon as she mentioned it to me, I realized she was right, and I became very aware of how my movement had changed.

I started with my regular doctor who after watching me walk and noticing an occasional tremor in my hand told me that it was likely Parkinson’s. She told me everyone’s journey with Parkinson’s was different. She referred me to a neurologist who ordered a DAT scan that confirmed my results were consistent with Parkinson’s. 

The diagnosis was confirmed on January 5, 2023, about one week before we embarked on a 111-day world cruise. My neurologist encouraged me to take the cruise and just be careful on the cobble stone streets around the world. “Just don’t fall.” It was the trip of a lifetime, and I was able to do almost everything I wanted.

After returning from the cruise, I made an appointment with a neurologist who was a family friend, and he also confirmed the diagnosis. He was in Los Angeles and a five-hour drive from my home in Las Vegas.  It wasn’t practical in the long term, so he referred me to the Cleveland Clinic at the Lou Ruvo Center for Brain Health in Las Vegas. 

Fortunately, my doctor at the Cleveland Clinic was also the Principal Investigator for a new Parkinson’s medication. I was accepted into the Phase three trial and didn’t think twice about participating, even though you don’t know if you’re in the placebo group or the drug group.

Participating in research led me to new opportunities, including being invited to speak about my drug trial experience at a Cleveland Clinic event. This event was also my introduction to the Parkinson’s Foundation. In just three months, I began exploring and utilizing Parkinson’s Foundation resources, which motivated me to apply to the People with Parkinson’s Advisory Council and to become a research advocate for the Foundation.

Throughout my research experience, I have learned that it’s challenging to enroll participants in drug trials for many reasons. I didn’t think twice about participating in the trial because it is an opportunity to not only help my own Parkinson’s symptoms, but to help other people who will be diagnosed with PD in the future. 

I found myself constantly checking for any change in my condition to see if I could tell which trial group I was assigned. After 27 weeks of phase three participation, I will move to the Phase four trial and receive the new drug for an entire year.

In the last two months I’ve joined a gym and started playing racquetball again. I’ve noticed my better days are the active ones. Staying active really makes a difference for me. I think of exercise as important as medication for my Parkinson’s journey.

I have started attending Parkinson’s events and grow my participation in the PD community here in Las Vegas. I find that events let me meet other people with PD, which is different than reading about someone’s journey online. I find it helpful to reading about PD news and studies to help me understand the state of the disease.

I would encourage everyone to see a neurologist as early as possible when you display early symptoms, such as the loss of sense of smell and active/restless sleep. I had these symptoms more than 10 years ago but never understood they would be the early steps towards Parkinson’s.

Find a PD-trained neurologist using our In Your Area search feature or by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636).