My Story – Bob Reolfi Jr.

Background

My name is Bob Reolfi Jr. and I was diagnosed with Early Onset Parkinson’s Disease 6 years ago. I have a wife, two grown children and a Shiba Inu named Max, I live in North Canton Ohio. I enjoy finding solutions to technical problems. A lot of my free time is spent fixing and restoring vintage motorcycles. I pride myself on being an active member of the community. Volunteering for the Pro Football Hall of Fame Festival the past 26 years, working as a YMCA Swim Official and Trainer for 25 years, a high school swim official for 16 years and NCAA official for 5 years. With the time that’s left, I also volunteer for a great group of guys who marshal Warbirds at Airshows.

The Diagnosis

Around my 50th birthday I started noticing that I was forgetting things. I could always remember everything in the past down to the smallest details. My writing started to get smaller, my voice started to fade and I noticed a very slight tremor in my right hand.

I began searching the internet for a cause for physical and cognitive issues. My research and symptoms pointed Parkinson’s Disease. An incurable degenerative disease that affects muscle control. As of now, there is no cut and dried test for diagnosing Parkinson’s. Knowing my best chance for answers meant a visit to a neurologist, I scheduled my appointment. The first doctor I saw said, if the arm on the affected side of your body does not swing when you walk, it’s Parkinson’s.

I wanted a second opinion from the best in the field. With the Cleveland clinic 50 miles away, it made sense to give them a call. After two hours of vigorous limb and hand tests, the clinic’s doctors confirmed my diagnosis.

I was floored. Being told I have a disease with no cure, was terrifying. The doctors explained that with hard work and drugs I could live an okay life. Yet they warned everybody’s Parkinson’s advances at a different rate.

The Fight

To help slow the progression of my disease, my doctor recommended riding a stationary bike for 45 minutes a day (at 90 RPM) and weight lifting. I followed their instructions, and the exercises kept my muscles loose and my balance in check. Still, my tremors were getting worse.

One of the hardest parts of dealing with Parkinson’s disease is knowing most of the symptoms are invisible to someone on the outside. Tremors and balance issues are the external symptoms. There’s also loss of smell, writing ability, anxiety, depression, rigidity, and cognitive problems to battle.

The Decision

In September 2016, I decided enough is enough. I made the decision to undergo Deep Brain Stimulation (DBS) Surgery at University Hospital in Cleveland. Hoping to reduce my tremors and improve my quality of life. Making the decision was the first and easiest step in the treatment process. There were months and months of testing to ensure I was a viable candidate for the surgery. In March of 2017, I was finally approved for the procedure.

On June 26, 2017 my family joined me at University Hospitals for my DBS surgery. During my months of testing, I was under the impression I would be awake for the entire surgery. When I checked into the hospital, the doctor decided to change the surgery to the new brain mapping probe placement. This decision also cut my surgery time in half and I was able to sleep through all 4 hours of my surgery.

The surgery was a success, but I developed a rare complication that triggered violent dyskinesia. My legs and arms were jerking and lifting uncontrollably. My surgeon said this side effect, while uncomfortable, is actually good news. The probes that will electronically regulate my tremors are in exactly the right spot. The dyskinesia faded with time and I was able to go home.

With the surgery complete, we gave my brain a month to heal before programming the brain simulator. As soon as the DBS device was turned on, my tremors slowed. I cannot describe how amazing it felt to sit still for the first time in six years. With a few more months of tweaking, I will be tremor free.

A Fresh Start

I am so incredibly grateful to my medical team for helping me find this path to treatment. Thank you to Dr. Kilbane, my movement specialist, my surgeon Dr. John Miller, the wonderful staff at University Hospitals who made our stay as comfortable as possible and my nurse practitioner, Ellen Walter. These people helped me turn back the clock on Parkinson’s and changed my life. The DBS surgery helped me make Parkinson’s treatment, a reality.

Click Here to Read an Interview with Bob and His Wife Joyce