Meet John Alexander. He is a distance cyclist, triathlon competitor, and a loving husband, father, and grandfather. John has been married to his wife, Laura, for 42 years. They have two grown children, Brian and Jennifer. He is also the proud “Grampy” of Lilly, Lex and Danny.
With his daughter, Jennifer, he completed the University of Florida Super Sprint Triathlon twice: once in 2013 and the second time in 2015. He is committed to exercise and enjoys setting goals. After John was diagnosed with Parkinson’s in January 2010 he set a goal to ride 1,000 miles on his bike in one year. So far, he has cycled over 3,500 miles (the distance across the country). He accomplished this goal by riding 5, 10 or even 62 miles at a time. He also participates in PWR! Classes, a stretching and strength building class designed specifically for people with Parkinson’s.
John’s dedication to physical activity and advocacy in the Parkinson’s community is admirable. He is an Ambassador for the Davis Phinney Foundation, former board member of the Parkinson’s Association of Central Florida, and recently attended the 4th Annual World Parkinson’s Congress in Portland. John has educated himself on the symptoms and treatments of this neurological disease, and shares that knowledge with others.
Like many living with Parkinson’s, he had struggled with tremors rigidity, and Dystonia in his left arm, hand, and leg. For the first few years, these symptoms were managed well with medication. John became a patient of the University of Florida’s Center for Movement Disorder and Neurorestoration in October, 2013 to have his condition treated more holistically. His tremors increased in 2016, which required higher doses of medication. In the spring of 2016, his Neurologist proposed Deep Brain Stimulation (DBS) as a treatment option for Parkinson’s.
The first step John had to complete was a two-day pre-assessment evaluation. He was observed, tested, and examined by a Neurosurgeon, Neurologist, Psychiatrist, Physical Therapist, Occupational Therapist, Speech Therapist, and Neuro-Psychiatrist. Afterwards, the team met as a group to discuss his case before agreeing that John, in fact, was a viable candidate for Deep Brain Stimulation Surgery.
On October 5, 2016 John was fully prepared for his Deep Brain Stimulation surgery. A week before, his Neurosurgeon Dr. Kelly Foote, called to offer the option of having the St. Jude Medical Infinity DBS System installed. It had recently been approved by the FDA and offered unique advantages over other DBS systems on the market. By agreeing to this recommendation, John became the first person in the United States to have the St. Jude Medical Infinity DBS System implanted. For the initial surgery, John needed to be awake in order to communicate with the doctors. During the four and a half hours of surgery John felt surprisingly comfortable and didn’t experience any pain. He says, “After all, it was only brain surgery.” He had a great deal of confidence in his surgical team of Dr. Kelly Foote, Neurosurgeon, and Dr. Michael Okun, Neurologist; known worldwide as a DBS “dream team.”
John had a second surgery in November which involved implanting the Neurostimulation Generator (the battery). He did receive general anesthetic for that procedure. In the recovery room, his system was activated. While his doctor was adjusting the settings, he heard the doctors say, “The tremor has been eliminated.” Just like that John felt a sense of unimaginable relief.
Weeks have gone by and John has been busy speaking to groups about his experience and tries to encourage people to talk to their neurologist to see if this surgery could be an option for them. He explains that DBS surgery is not a “cure,” though it can have some very encouraging results. Many people say that because of DBS surgery, their symptoms were rolled back five years or more. The benefits can last up to ten years from the date of the procedure. For additional research John suggests the following books.
To learn more about John's experience click here to listen to a radio interview.
“Parkinson’s Disease ‘Deep Brain Stimulation’ – A Practical Guide for Patients and Families” – by Michael S. Okun M.D. and Pamela R. Zeilman, MSN, ANP-BC. Available for free through the National Parkinson Foundation
Davis Phinney Foundation – “Every Victory Counts” manual. Available for free through the Davis Phinney Foundation for Parkinson’s at “DBS A Patient’s Guide to Deep Brain
“DBS A Patient Guide to Deep Brain Stimulation” Monique L. Giroux, MD and Sierra M. Parris, PA-C. Available on amazon.com