John Zells: My Journey With Parkinson’s

To look at handsome John Zells, you’d never be able to imagine what he’s gone through and endured. Until the age of 32, he could never have imagined it either. He grew up, went to school, became a business owner and then one day it started. “I had a slight tremor in my right thumb and researched it on WebMD online. from over-using the computer,” he said. But as the shaking increased, John’s daily activities decreased. His hands were shaking so much now that he was increasingly unable to do normal everyday activities such as writing, driving, or working.

The disease progressed slowly but steadily through 2017. During that period, John tried various medications and also went through a series of clinical trials. Some were effective for a while, but the relief provided always dissipated over time, and his memory and thoughts became increasingly unclear. For example, he would buy thousands of dollars of tools at Home Depot for no reason. As a result of what is known as Impulse Control Disorder* (a serious side-effect associated with several of the drugs prescribed for Parkinson’s), John spent his entire life’s savings, but kept it hidden from family and friends.

Finally, by 2017 the symptoms had become so bad and the relief from medication had become so fleeting, John decided to seriously investigate a surgical solution called Deep Brain Stimulation (DBS). He was taking 30 pills a day, unable to do more than “sit on the couch and watch TV all day”, and had lost 60 pounds. Fortunately the doctors who had evaluated John felt he was a good candidate for the surgery. Although he was apprehensive about having brain surgery, by this point his quality of life was so poor that John felt it was his best chance for any kind of normalcy.

In February of 2019, ten years after John’s initial diagnosis, he had the .rst of a two part procedure. While awake and off his Parkinson’s medications, two small holes were drilled in John’s head for the placement of multidirectional electronic leads. A week later, a pacemaker was implanted in his chest which powers and controls the amount and direction of brain stimulation from the leads. John was fortunate enough to be the first activated recipient in the USA of Boston Scientific’s next generation DBS system. This pacemaker is rechargeable and guaranteed to last for 15 years whereas earlier versions required surgical replacement every 3 to 5 years. The surgery was very successful. He now takes no medications, he is not shaking, he has no pain and his speech and balance have come back. Though he still has Parkinson’s, he now travels and speaks about the surgery throughout the U.S. John travels to Chicago, Atlanta, and even as far as California to speak to neurologists, neurosurgeons, medical students, patients, caregivers and others. He is on Q & A panels at regional and national DBS Seminars, and he is grateful to be able to advocate for DBS and Boston Scientific’s state-of-the-art device. When on stage, he shows an astounding before and after video that demonstrates the constant shaking prior to surgery and its disappearance after it. He tells those with the disease that “there is light at the end of the tunnel.” Sometimes he cries as he watches the video and he said, “the whole place cries.”

John has huge hopes for the ultimate cure to Parkinson’s, and in the meantime he does physical charity work. He couldn’t walk well prior to the surgery nor after the surgery since his muscles had atrophied from lack of mobility. His balance was o , he was weak and had a few falls. After the surgery he began walking a few steps, then a few yards, then a mile. Now he walks 8 to 10 miles a day EVERYDAY at the beach and he uses 3 of the miles to pick up litter. These miles are tracked and become “Charity Miles” in a donation he makes to the Michael J. Fox Foundation.

John said that “without a doubt, anyone with Parkinson’s should have hope and keep positive since surgery can be a game changer.” Then he divulges what his neurosurgeon says is John’s favorite line: “Given my personal experience, I would much rather have brain surgery again than go to the dentist.”

John Zells Facebook Support Group:
www.facebook.com/groups/FloridaPDandDBSsupport

Boston Scientic:
www.bostonscientic.com
www.DBSandME.com

Video of John Zells being interviewed by quadriplegic Cruise Bogle:

*Impulse Control Disorder is a side effect of certain medications called dopamine antagonists. Reported impulsive behaviors are pathological gambling, hypersexuality, compulsive shopping, binge eating, obsessive hobbying, compulsive medication use, and “punding” a term that was coined originally to describe complex prolonged, purposeless, and stereotyped behavior in phenmetrazine and chronic amphetamine users, by Swedish forensic psychiatrist G. Rylander, in 1968. It was later described in Parkinson’s disease.