It all started several years ago with a thumb twitch on my right hand, not always…just when I positioned my palm face up. I made mention of the oddity to my general practitioner (who will remain nameless). After attending numerous visits to referred specialists (I use that term charitably) and an array of tests, I was witness to a lot of shrugs, speculation, head-scratching, and comments like “well I be darned….I’ve never seen anything like this before!”
Opinions we’re inconsistent and misdiagnosis almost led to unnecessary surgeries. It was finally a nurse practitioner (Thanks, Belinda!) that mentioned the possibility of essential tremors or possibly even Parkinson’s Disease and I should see a Neurologist that specializes in movement disorders to determine my curious affliction. I made an appointment with Drs. Cenk Sengun and Dr. Carlos Singer at the University of Miami Department of Neurology located right within the walls of the National Parkinson’s Foundation building. After participating in several base tests, I was asked to return in a month to retake the same tests. The findings were conclusive to a 99% probability of accuracy. My twitch now had a name. Parkinson’s disease (PD).
Determined to achieve something bigger than myself, I became an active advocate for those living with Parkinson’s disease. I organized fund raisers for several national Parkinson’s foundations as well as the University of Miami /Miller School of Medicine. With the help of an endorsement from Dr. Carlos Singer (Director of Neurology/Movement Disorders at UM) and financial sponsorship by the Parkinson’s Disease Foundation, I attended and graduated from the Clinical Research Learning Institute in New Jersey that same year.
I now had a direction in which to focus my efforts. I made it my charge to educate people living with PD and their caregivers about the opportunity to participate in clinical trials that will hopefully develop new medications to treat or better yet, cure Parkinson’s.
It was also by attending the CRLI that I was afforded the opportunity for the first time to meet someone who actually had Deep Brain Stimulation. DBS for short.
The Parkinson’s Disease Foundation flew in about 40 people with PD from all parts of the US. They also flew in Drs, clinicians, pharmacists and speakers, so when I introduced myself to one of the people sitting at my table who had demonstrated zero motor symptoms, I naturally asked him if he was a Dr.. He said no. A speaker? No. An organizer possibly? No! Do you work at this hotel? No! Now he’s starting to frustrate me. ‘Why are you here’ I asked? He smiled and said ‘I have Parkinson’s just like you. I’m thinking how could he? I mean this guy didn’t have a tremor, dystonia, dyskenesia, an awkward gait…nothing.
He told me he had a procedure called DBS performed a month or so before. He also added that before DBS he had to separate his bed from his wife’s because he shook so much at night he kept his wife up. It was a real eye opener, and for me literally what the doctor ordered.
On July 18 2012, under the talented hands of my now heroes, Dr. Bruno Gallo and Dr. Johnathan Jagid, I underwent DBS in an effort to reduce my physical motor symptoms caused by Parkinson’s and hopefully to cut down on the dozens of medications I was taking every day. A new chapter of my life began, and that means new opportunities to help the cause. Embarking on this journey, I hoped to prove to myself and others that I may have Parkinson’s, but Parkinson’s does not have me.
We had talked about it for a while, but now following DBS we had no reason not to. I mean, what do you do after undergoing brain surgery? Naturally…my wife Lynn and I decided to (along with our dogs in tow) ride our bicycles across the country over 4,500 miles to raise funds and awareness for PD. This lofty endeavor however, to us, became so much more than a bike ride.
If I would have time to consider all the conventional wisdom and the numbers that were against me completing this challenge, I probably would have given in to common sense. But what all the numbers failed to show was the strength of the human spirit. to achieve. To be larger than the sum of our individual parts. I refused to leave a legacy as a victim.
From the embryonic stage of prepping for the ride, friends and family expressed great concern for my health. Here I was 54 years old, person living with Parkinson’s, barely out of DBS surgery and not anybody’s definition of an endurance athlete.. A 54 old Jewish guy from Miami who just several months prior couldn’t feed himself without dropping most of the food onto the floor. I tried to ensure everyone that my DBS had addressed most of my motor function issues and although I had never ridden a bike more than 20 miles in my whole life, I’d pace myself. and that I knew what I was doing…I lied through my teeth! I also knew there was no backing out.
Starting our journey, we left Miami October 31st and towed our 27 foot 1969 Airstream to Seattle. Along the way, we picked up Lynn’s brother David in Sarasota. It was his job to be our SAG driver for the trek back to Miami. The ride took 4 days to get to our starting point. The ride back took a little longer, and I wouldn’t trade that beautiful and sometimes excruciating experience for a million dollars.
In the four months it took us to get home to Miami, we rode through hail storms, sandstorms, freezing weather, gale force winds, and dangerous slick mountain terrain, we explored this country up close from coast to coast, But I also got to pick apples and pomegranates from trees for the first time in Washington. Saw salmon swimming in rivers in Oregon. Majestic mountains from both sides of the clouds in Northern California. Saw whales and seals of the coast of San Francisco. We biked through the vineyards in Napa. Miles and miles of pecan groves in New Mexico. Celebrated my 55th birthday at a Taco stand in Ventura, and welcomed the New Year at a retirement RV community in El Centro California. Let me tell you, those guys knew how to party! Traveling through a city named Frisco in Texas, the Mayor actually proclaimed February 5th Roy Roden and Parkinson’s day! We hit Louisiana just in time for Mardi Gras. It was an amazing trip. The climate didn’t always provide us with the optimum circumstance for biking, but what the weather did to challenge us, the angels we met along our journey kept us going and reminded us of our purpose.
With a team of extraordinary PR staff, we used the ride as a tool to get in front of any microphone, camera, or reporter that would have us. We talked to people with Parkinson’s about their options, whether it is DBS or new meds, the focus always included educating them how important exercise is to combat the disease.
What we found incredible, was the disinformation PD patients received about DBS by their General Practitioners and Neurologists. Many of which made you question if the Dr.s knew anything about the disease at all. Some of the stories we heard were unacceptable at best, criminal at worst.
I remember when we spoke to one man in our travels who after a diagnosis of PD, was never explained any options by his MD. That there were medications that could help alleviate many of his motor symptoms. He was just told there’s no cure. When we met him, he was a recluse waiting to die. With a few phone calls, we were able to get him the help he needed. Lynn still cries when we speak about him.
We were honored to speak in front of support groups, City councils, universities, rehabs, hospitals, and thousands of people with and without PD that we just met along the way. The more people we spoke to, the more we were touched by their stories of hope. As it turned out, it was the same people that we set out to inspire, inspired us. It absolutely restored our faith in mankind.
We had decided even before the ride was through, that we were going not only to simplify our lives , but were going to devote our lives to helping others affected with PD. We have since moved to Tucson, AZ where Lynn is working with Dr. Becky Farley, whose research based studies in Parkinson’s specific exercise has not only made her the preeminent leading authority in PD rehab, but has also resulted in the culmination of her first book on the subject, PWR Moves.
After 39 years, I’ve semi-retired from the fitness industry in which I served as everything from a Personal Trainer to owning a Management consulting firm. I now volunteer for Medtronic DBS division as an ambassador as well as a clinical research liaison for the Parkinson’s Disease Foundation. I’ve also (with Mick Beaman ) organized a support group for those afflicted with Young Onset Parkinson’s Disease and their families in Tucson.
Understand that the war against Parkinson’s will be fought in the clinics, laboratories, and universities around the world, and if our researchers are our soldiers, then certainly only continued education and funding for more clinical research our ammunition. I want to thank you all today for bringing the bullets.
I also want to personally thank the team at University of Miami Miller school of medicine as well as Medtronic for every step I take without losing my footing. To be able to eat without dropping all of my food. For confidently being able to go out in public without the fear of bringing attention to myself, to be able to sing bad karaoke, and lastly for making it possible for me to continue my efforts to bring an awareness of Parkinson’s Disease.
Speaking for the 1.5 million people in the US currently with Parkinson’s, not including the undiagnosed and misdiagnosed; I want to thank you all for being hummingbirds and doing your part.
I promise that as long as I have my voice, I’ll continue to speak for those people living with Parkinson’s who can’t speak for themselves.
I’m just getting started.
Thank you and God Bless.