You may have heard of them… Roy and Lynn Roden? PD CHALLENGE? 4,700 miles across the U.S. of A.? On a bike?
It began November of 2012. The reason? To raise awareness for Parkinsons’s disease. A progressive, degenerative disease that affects 1 in 100 over the age of 60, but is increasingly becoming more prevalent in those under the age of 50. The bike ride that ended in 2013 of March, was only the beginning of the journey that Roy and Lynn would take for bringing awareness to Parkinson’s disease and encouraging those who struggle daily with this disease. This is their story, as told to us here at Parkinson’s Journey.
A passion for fiitness. Recently married. A love for life. But something wasn’t right. At the age of 49, Roy and his new bride found out why…
Noticing a twitch in his thumb, like so many others in his shoes, Roy didn’t think much of it. After all, he had consulted his doctors about it on occasion. However, as it got grew worse, so did his concern. He sought a definitive diagnosis and was routed to several neurologists where a diagnosis of Thoracic Outlet Syndrome (TOS) was made. TOS is a group of disorders that occur when the blood vessels or nerves in the space between your collarbone and your first rib (thoracic outlet) become compressed. This can cause pain in your shoulders and neck and numbness in your fingers.
They also met a CEO of a large corporation who’s wife had Parkinson’s and who had undergone unnecessary shoulder surgery and were able to answer their questions about DBS. Another encounter was meeting a man in Arizona who had Parkinson’s and his main symptom was freezing. It might take him 20 minutes to get to his bike that was a few dozen feet away, “but once he was on his bike – woosh! watch out – he’d be 8 miles down the road,” they said. They also went on to say that, “We attended the Davis Phinney Victory Summit where we met so many positive people – most struggling with a YOPD [Young Onset Parkinson’s Disease, age 50 and under] diagnosis. We spoke at universities and at many PD support groups along the route. Most importantly, we were able to reach out to the media and help spread awareness about Parkinson’s disease. We met many angels along the way and shared some amazing stories and experiences. We set out to find ourselves and in turn found our place in the Parkinson’s community.”