An interview with John Zells on Advocacy, DBS/Boston Scientific and the LEGO Project on July 25, 2023 by George Ackerman, Ph.D, J.D.
In 2017 I had to close my business because of the effects PD was having on me. In 2019 I had DBS and started doing volunteer patient ambassador work for Boston Scientific shortly after. I still do that. I have sat on the Florida regional advisory boards of both the Parkinson’s Foundation and the APDA. I attended WPC in Barcelona in July as a patient ambassador for Boston Scientific. I just got engaged in May. I like to garden with my fiancé Sofy and our dog Harper. We are actively looking to foster another dog. I do my best to stay active, starting with walking Harper 1-2 miles every morning. Then I try to either play tennis, go to the gym, swim, or walk some more. We love to cook, spend time with family, travel, and root for the Miami Dolphins & Heat.
The LEGO Project (https://www.lego.com/en-us)
The LEGO Project is a group of people with Parkinson’s and caregivers who join to build LEGOS and help with the effects of PD for example by building dexterity.
Please tell me a little about your background and what got you involved with awareness.
I am a PWP (Person with Parkinson’s), diagnosed in 2009 at the age of 32, I had DBS in 2019. I am 46 now. I was a recent recipient of Deep Brain Stimulation (DBS) surgery.
I am also a guest speaker and social media administrator sharing “My Journey with Parkinson’s” and advocating for DBS surgery as a compelling alternative for movement disorders. Experienced ambassador with a demonstrated history of advocacy and patient enlistment in the DBS space.
Can you tell me more about your advocacy?
I advocate for Parkinson’s and have sat on the board of the APDA (American Parkinson’s Disease Association-South Florida https://www.apdaparkinson.org/ ).
I also do advocacy work with Boston Scientific.
For more on DBS (Deep Brian Stimulation) see: https://www.bostonscientific.com/en-US/patients-caregivers/device-support/dbs.html
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
After having DBS and getting a second chance at life I just wanted to help people who are suffering like I was due to Parkinson’s disease.
What effect can your advocacy have on an individual with Parkinson’s awareness?
If individuals were more aware they could make more informed decisions and choices. I would have had DBS years earlier, but the information was not available. I have learned so much more today that I wish I had known years prior.
What would you like to see as a future goal for your advocacy?
To end Parkinson’s. I was hoping to hear some breakthrough for individuals with Parkinson’s but that was not the case yet. I hope that people will not suffer as much due to the disease. Again, I went 10 years before I got DBS because of the lack of info out there.
What events do you participate in?
I attended the ADPA Optimism walk and sat on the APDA-South FL Board.
How does this also assist the caregivers?
Support and help other people see the difference sin Parkinson’s,
How can someone get in touch? What is your website?
John Zells Facebook Support Group:
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
If you meet one person with Parkinson’s disease, you only met one person with Parkinson’s because everyone is unique and different. Each person has various symptoms and different experiences. Some have tremors and others may have other signs of the disease, so it does differ from person to person.
How Deep Brain Stimulation works
People living with Parkinson’s Disease (PD) or essential tremor (ET) experience a disturbance in motor symptoms because of low dopamine levels in the brain causing abnormal signaling. DBS can help regulate those signals through electrical stimulation. As a result, symptoms are often reduced.
Your doctor will place one or two insulated wires called “leads” in the brain, which connect to a thin wire called an “extension.”
Two leads lying next to each other
A small device called a “stimulator” is implanted under the skin in the chest, which also connects to the extension.
Vercise Genus R-16
The stimulator sends mild electrical pulses through the extensions and leads to specific regions of the brain.
Mild electrical pulses
Your device is programmed with Image Guided Programming; a technology that allows your physician to see exactly where your leads are placed and exactly where the therapy is being delivered.
Image guided programming
Benefits of DBS
DBS has changed the lives of people with PD, easing symptoms and returning function that was once lost. The results of DBS vary from person to person depending on the overall level of health, progression, and window of implementation.
Benefits of DBS include:
DBS is a safe and effective solution to manage and reduce symptoms such as: tremor, slowness, rigidity, uncontrolled movements, incontinence, and moodiness
Your initial programming session may be 20 minutes shorter than a typical programming session with Image Guided Programming
For Parkinson’s Disease (PD) patients:
May allow for a reduction in number of medications taken³
Provide 6 hours of more “On Time”, giving you control and independence to live your life free of rigidity, freezing or the troublesome dyskinesia sometimes caused by medications⁴
Patients with tremor experienced an average of 70% reduction of symptoms, depending on type and location⁵
Patients showed marked improvements in minor functions and sustained improvement for at least 5 years⁶
For Essential Tremor (ET) patients:
According to research, patients exhibit 60-90% improvement of tremor⁷
98% of patients receiving DBS therapy for Essential Tremor would recommend it to others⁸
For more information see https://www.bostonscientific.com/en-US/patients-caregivers/device-support/dbs.html
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.
See the video on https://www.youtube.com/watch?v=SX5kyU383zY
Boston Scientific Corporation (2022). How Deep Brain Stimulation works. Retrieved from https://www.bostonscientific.com/en-US/patients-caregivers/device-support/dbs/how-dbs-works.html
Simply The Best Magazine (2003). John Zells: My Journey With Parkinson’s. Retrieved from https://simplythebestmagazine.com/john-zells-my-journey-with-parkinsons/
Parkinson’s Foundation. Causes. Accessed July 1, 2021. http://parkinson.org/understnading-parkinsons/causes-and-statistics
Lange F, Steigerwald F, Malzacher T, Brandt GA, Odorfer TM, Roothans J, Reich MM, Fricke P, Volkmann J, Matthies C and Capetian PD (2021) Reduced Programming Time and Strong Symptom Control Even in Chronic Course Through Imaging-Based DBS Programming. Front. Neurol. 12:785529. doi: 10.3389/fneur.2021.785529
Timmermann L, Jain R, Chen L, et al. Multiple-source current steering in subthalamic nucleus deep brain stimulation for Parkinson’s disease (the VANTAGE study): a non-randomised, prospective, multicentre, open-label study. Lancet Neurol. 2015;14:693-701. doi: 10.1016/S1474-4422(15)00087-3
Vitek JL, Jain R, Chen L, et al. Subthalamic nucleus deep brain stimulation with a multiple independent constant current-controlled device in Parkinson’s disease (INTREPID): a multicenter, double-blind, randomised, sham-controlled study. Lancet Neurology. 2020;19(6):491‐501. doi:10.1016/S1474-4422(20)30108-3
Farris SM, Giroux, ML. (2013). DBS: A Patient Guide to Deep Brain Stimulation. 1st ed. CreateSpace Independent Publishing Platform; 2013.
Krack P, Batir A, Van Blercom, N. Five-year follow-up of bilateral stimulation of the subthalmic nucleus in advanced Parkinson’s disease. N Eng J Med. 2003:349(20):1925-1934. doi:10.1056/NEJMoa035275
Zesiewicz T, Chari A, Jahan I, Miller AM, Sullivan KL. Overview of essential tremor. Neuropsychiatr Dis Treat. 2010;6(1):401-408, https://doi.org/10.2147/NDT.S4795
R.E. Wharen Jr., et al., Thalamic DBS with a constant-current device in essential tremor: A controlled clinical trial, Parkinsonism and Related Disorders (2017), http://dx.doi.org/10.1016/j.parkreldis.2017.03.017