I was diagnosed with Parkinson’s disease (PD) in September 2009. My DBS story began in June 2020, when I underwent three surgeries to have a deep brain stimulator (DBS) installed in my head. A DBS device is similar to a cardiac pacemaker, except it sends electrical shocks to my brain instead of my heart. The benefits of said stimulator are relief from some Parkinson's symptoms, including tremor, bradykinesia and rigidity/stiffness. Successful DBS surgery also allows people with PD to reduce their medication.

My first surgery took place on June 9. The surgeon inserted screws into my cranium and used an MRI to take a picture of my brain. This was an outpatient surgery and I found it to be the most painful recovery of the three surgeries.

My second surgery took place on June 19. The surgeon opened my brain to insert an electrical circuit. With assistance from my neurologist and a trusted PA, my surgeon placed two leads: one in the right and one in the left side of my brain. The leads helped improve function on opposite sides of my body. The last step was to connect the wiring to the leads and wind up the wiring under my skin, for the future connection to the neurogenerator. This was an inpatient surgery requiring one night's stay. After a well-deserved night of pampering, I returned home in preparation for the final surgery.

My third and final surgery, to connect the system, took place on June 29. This was an outpatient surgery that placed the neurogenerater under the skin in my chest and connected the pieces of my three-piece brain puzzle. The surgeon used a ‘boring’ tool to create a tunnel from behind my ear down my neck to the neurogenerator to complete the circuit.

I understand that currently, they are offering a single surgery of a longer duration instead of the three I experienced. I believe that this all-in, one-time surgery still includes the option of being awake during the second procedure. If you trust your neurologist and surgeon completely (as I did, do, and always will) and you think you can handle staying awake during surgery, I promise that you won't regret it. I found it to be the most fascinating experience in my life! I wasn't in pain, and I was able to communicate with my neurologist as I watched him 'tune in' the system by testing my arms and legs for rigidity.

Two weeks later, they turned the system on. My wife and I watched as my neurologist adjusted the frequency and amplitude and the tremors miraculously melted away! Tears welled up in my eyes as I rose from my chair and walked, without freezing, right out the door.

This is not where my story ends, though. I was told that the battery life in my neurogenerator would last some three to five years but would probably need replacing sooner. On the day before Thanksgiving (November 23, 2022), the iPod that I used to monitor my neurogenerator indicated in yellow that I should replace the neurogenerator as the battery was losing its strength. I called and scheduled my replacement surgery, which was delayed until December 27 due to the holidays and a blizzard.

In the four days between Christmas Eve and the rescheduled day of surgery, my neurogenerator had failed completely and as expected, my condition worsened steadily as my brain wasn't generating enough dopamine. The tremors, bradykinesia and rigidity were taking over. The only relief I found was when I slept.

The doubts began to creep in: What if my neurosurgeon couldn't turn on the new neurogenerator right away? What if the DBS didn't function as well as I had previously experienced? After all, my symptoms had progressed since my original surgeries; would the DBS be able to keep up?

Upon my return home after the surgery, I went to take a nap. In that moment, I suddenly understood the wave of emotions that Ebenezer Scrooge experienced as he gleefully repeated, "I don't deserve to be this happy." I had been given not one, but two, opportunities for redemption in my life! The significance of the first I had minimized and attributed to the marvels of modern science. But the second has stricken me so powerfully, I feel compelled to share my story in hopes that it might encourage someone else to consider DBS!

I am grateful to all the neurosurgeons, neurologists, PAs, nurses, anesthesiologists and support staff personnel who work to help people with Parkinson’s disease live better lives. I am also grateful to the Parkinson’s Foundation for providing resources to the PD community. I have attended symposiums and used their online exercises classes to learn more about Parkinson’s and manage my disease. I have also used their legal resources at times.

Finally, I cannot express in words how grateful I am to my wife and soulmate whom I so wisely married over 34 years ago.

Listen to our podcast episode on deep brain stimulation.

I was officially diagnosed with Parkinson’s disease (PD) at age 62, although I've had tremors (along with what I now recognize were other, less obvious PD symptoms) for many years prior. I was told by numerous physicians not to be concerned regarding the tremors; essential tremors are not uncommon, so I pretty much ignored the red flags.

In early 2020 I found that I was having an extremely difficult time initiating a step when walking, so I decided to check with my PCP. In February 2020, while doing my physical exam, a small town, country doctor noticed the twitching in my fingers. The tremors combined with my start hesitation resulted in a recommendation that I see a neurologist. The rest, as they say, is history.

After receiving my diagnosis, I did extensive research on the Internet and found the Parkinson's Foundation website to be outstanding. Their online information library was extremely helpful in learning more about PD, and I have assembled quite a collection of wonderful info about PD thanks to their resources.

We had a very nice little cabin in rural, northern New Mexico, but the medical care was lacking in the area for someone with PD. When I retired, we moved to the Albuquerque metro area. I miss the beauty, solitude and seclusion of the Sangre de Cristo mountains, but I found a movement disorders specialist in Albuquerque and she has been absolutely awesome.

I am basically learning how to overcome the challenges of being a person with Parkinson’s disease by having access to opportunities that were not readily available prior to relocating. I actually feel blessed, and I refuse to be defined by Parkinson’s. My life, even with the daily rigors of dealing with a progressive disease, has been very rewarding!

I am reminded of a quote which, for a person with PD, I believe are words to live by:
"We cannot change the cards we are dealt, just how we play the hand."

The Parkinson’s Foundation is here to help. Explore Parkinson’s disease resources in our PD Library. 

I have always believed the old adage that if you feel something is off or wrong, then it probably is. Life began to change when I could no longer teach my fitness classes without extreme muscle spasms, when I couldn't complete a 5K due to leg pain and weakness, when my hand began to shake without explanation and when going to work as a physical education teacher caused a level of fatigue and brain fog that I had never experienced. Each of these symptoms caused me to fear that I would no longer be able do the things I loved.

I was under the care of both a great chiropractor and physical therapist who urged me to find answers when there seemed to be none. It became a guessing game and a myriad of tests that never produced the answer. No one could tell me what was wrong, so how I was supposed to get back to normal?

After almost a year of testing in my local area and being told many different things without solutions, I reached out to a major research hospital which was seven and a half hours away from my home. Luckily, I was accepted as a patient and when I walked in the doors, I knew that I was in the correct place.

After a series of visits, I received a telephone call that would change my life and give me an answer to what had been ailing me for almost two years. The physician informed that she believed I had young-onset Parkinson's disease (YOPD).

While I never expected this diagnosis, I knew that Parkinson’s was manageable because I have a coworker who was also diagnosed with YOPD several years ago. Once I started medication, I began to get my life back. My movement disorders specialist told me about the Parkinson’s Foundation and the resources available for people living with PD. I was able to virtually attend a symposium to learn more about the disease.

I still can't run like I did before YOPD symptoms began, but I can box, teach my fitness classes and lift weights effectively. When I’m at home, I use Fitness Friday videos to stay moving. I learned that it is imperative to stand up for yourself and not give up on answers. If you ever find yourself on a diagnosis journey, don't give up! I believe that had I not continued to search for answers, my condition would have been much worse before I knew the cause of my symptoms. 

I now choose to spread awareness of YOPD through education, exercise and encouragement for those living with the same condition.

Explore resources for the Parkinson’s community.

Engagement is my key to wellness with PD.

Getting a Parkinson’s disease (PD) diagnosis is a sobering moment, but fear and backing away from what worries us never works in the long run. What’s sobering, or frightening even, is the uncertainty about what it means to have a progressive, incurable movement disorder. Will I be unable to run? Shuffling along soon? Unable to drive? Mute? When does all this start happening?

Answers to those questions still linger, but after a few deep breaths it became clear that these worries were not going to be faced, say, next week. The most immediate challenge was to convert all this external tremor and internal commotion into some kind of new normal so that I could get on with the business of living well. My key to moving forward has been engagement.

Engaging with friends

Letting friends in on this new development in life has been a source of support moving forward. The support of friends and family provokes the experience of being known for who you are, which for me includes my private experience of the irritating tremor or the latest non-movement symptom. Being open about my Parkinson’s diagnosis has required transparency with friends in order to be known and move forward living well.

Engaging with the care team and the PD community

I live in Grand Rapids, Michigan, where I have access to Corewell Health’s Parkinson’s multidisciplinary team, a program that the Parkinson’s Foundation has designated one of the first Comprehensive Care Centers in the U.S. I feel lucky. This Care Center has served as a gateway to new friends and other communities formed by people with Parkinson’s. The care team invited me to join the PD advisory council to help grow and improve the multidisciplinary program and urged me to help facilitate discussion in our monthly educational meetups.

Engaging with the research community

After these few deep breaths, I decided to participate in a clinical trial. As a participant in a year-long trial, I learned about Brain Storms by John Palfreman, an excellent history of PD research. I also learned about the Grand Challenges Annual Meeting at the Van Andel Institute. There, I met medical professionals, graduate students, clinicians and others doing research on Parkinson’s, as well as staff from Cure Parkinson’s in London. These relationships have been a source of inspiration.

Engaging with the exercise community

I was engaged with a local trail running community for more than a decade prior to my diagnosis in late 2021. Weeks after my diagnosis, I connected with one of the Davis Phinney ambassadors who urged me to start weightlifting to add to my routine as a trail runner. At the gym, I have met a few others with Parkinson’s and made new friends without PD who are lifting and moving like me: to improve their quality of life. My trail running now includes my neighbor’s dog Khloe, one of my best friends and supporters.

Engage with the Parkinson’s Foundation to live well with PD. Find expert care and local resources in your area.