Each month, we spotlight Moments of Victory® from people in our community. Today, we are happy to feature John Binder from Buffalo, New York.
briefly describe your journey since diagnosis
My journey with Parkinson’s has been a trip that started about 10 years ago. Like many, the first symptoms I began to notice were movement symptoms in my hands and arms. First, it was a tremor in my left hand and arm, and then I would have uncontrollable jerking movements (much like a tic), spilling anything and everything I was carrying.
My primary care doctor recognized that there was a serious problem and referred me to a neurological group, who an a bunch of tests but came to no solid conclusion. While they were able to rule out seizures and strokes, they would not make a diagnosis of Parkinson's.
I decided I needed a second opinion, so I made an appointment at the Cleveland Clinic, where they immediately diagnosed my symptoms as Parkinson's. Soon after, I developed a plan of treatment and started to work with my doctors to live well. I was prescribed a variety of medications to help with the motor and non-motor symptoms of my Parkinson's. In time, the medications weren't enough, and we agreed the time was right for deep brain stimulation (DBS). I decided to get the procedure done through the UB-NS group in Buffalo. To this day, I work with them consistently to adjust my DBS and treat my symptoms.
How do you live well each day?
With a mix of proper medication, exercise, DBS, good nutrition, plenty of sleep, and expert direction from my neurological group. I stay as active as possible, stay connected to my friends, work with local Parkinson’s groups, and stay busy with my Rock Steady Boxing program.
what do you wish you had known when you were diagnosed with parkinson's?
My first thought when diagnosed with Parkinson’s was that my life was over. I feared that Parkinson’s would reduce me to a useless, wheelchair-bound, dementia-fighting individual that would degenerate quickly and would quickly require a full-time care person to dress and feed me. I wish I would've known about the support available, the effectiveness of the available medications, the effectiveness of DBS, and the dedication of the professionals who dedicate their lives to fighting Parkinson’s.
what do you wish everyone with parkinson's knew about living well?
I wish everyone living with Parkinson’s would find a support person or group to encourage a fighter attitude that challenges, inspires, and enables them to live well.
SHARE YOUR VICTORY
Each month, we spotlight people from our Parkinson’s community who embody living well today – what we call Moments of Victory®. Your story, like John's, could be featured on our blog and Facebook page so others can learn from your experiences and victories.