The Decision
The process of making a decision to have a surgical team drill open my head (while I was conscious) and implant what is essentially a pacemaker for my brain began the day I received a diagnosis of Young Onset Parkinson’s Disease on June 15, 2015. At the time, I was a month shy of my 50th birthday and, as strange as this may sound, relieved to hear my doctor, a respected neurologist, movement disorder specialist, and researcher at UCSF, verbalize what we had suspected all along – I had Young Onset Parkinson’s.
It was the culmination of a year of tests meant to rule out the most obvious other suspects – MS, ALS, effects of a small and ancient stroke that had appeared on a recent MRI – and I was tired of all the uncertainty. There is undeniable power in knowledge. No matter how unsettling that knowledge may be, it allowed me to put a name to my disease and to make a game plan of how I would approach this new reality.
It was at that appointment that I first heard the phrase Deep Brain Stimulation surgery or DBS. It was, my doctor said, an option that was way off in the future; a treatment that was usually reserved for people with advanced stages of the disease. “You are,” he said, “very early in your diagnosis and we can manage the symptoms with medications.” What he didn’t tell me was that by the time an average patient is diagnosed with Parkinson’s, more than 80% of the dopamine-producing neurons in their brain are already dead. The “degenerative” nature of the disease meant for me, like the nearly 6 million other people living with Parkinson’s worldwide, that the disease was just going to get worse over time with no known cure.
The Pre-cursors
Like many doctors who tend to tread carefully when first prescribing Parkinson’s meds, my doctor started with dopamine agonists; a “starter” class of drugs with less physical side effects but notorious behavioral effects that, in me, manifested as an unbearable level of anxiety. Over the course of that first year, we experimented with a variety of medications and doses before coming to a shared philosophy. Despite the risks of severe dyskinesia (rapid, uncontrolled movements) that come from long-term use of Levodopa (the standard of care for treating Parkinson’s for over 50 years), it was better to treat my symptoms so I could remain active while holding out hope for future advances. Ever since then, I have been taking Levodopa, most recently in a time-released formula call Rytary.
At the time of my diagnosis, my experience with Parkinson’s was limited to what I had seen on television and/or read about; usually in People magazine and usually a story about Michael J Fox. To my knowledge, I didn’t personally know anyone who had Parkinson’s and there was no history of the disease in my family. We debated whether we should tell my mother. She had recently turned 90 and might be privy to a long-lost memory of a distant relative who had lived with the disease. At the same time, she was prone to anxiety and the last thing we wanted was to add any unnecessary stress to her life. So I did what any good son would do, called her therapist and asked for guidance.
“Your mom is a lot stronger than you think,” I remember the therapist saying. “She didn’t make it to 90 without surviving a lot of bad news. But more than that, I think if you don’t tell her, and she ends up finding out about your diagnosis from someone else, she will feel devasted that you didn’t tell her directly.”
I called my mom that afternoon and shared the news. She responded with compassion, grace, and strength. She also clarified that my diagnosis was an outlier in our family’s history. A year later, when my mother passed away at age 91, I was grateful that were no secrets between us.
“Earlier” Intervention
Much has changed in the world of Parkinson’s as well as our broader world since my diagnosis in 2015. For one thing, there has been a seismic shift in thinking about DBS and when to actively consider it as a treatment option. The current thinking is that DBS, used as a therapy on thousands of patients since 1993, should start being discussed as a treatment option approximately 2 years post-diagnosis so that recipients can enjoy the benefits of reduced off-times, and a dramatic reduction in traditional symptoms like stiffness, tremors, and dystonia; the latter being involuntary and often painful muscle cramping which has been one of my most disabling symptoms. Many people also benefit by being able to reduce the number of daily pills they take. I was averaging 14 Parkinson’s medications each day, more if I needed a boost for an especially demanding situation.
I’ll never forget meeting with my current Movement Disorder Specialist, Dr. Rima Ash, nearly two years ago and hearing her mention DBS as a possible treatment option. “Isn’t it too soon?” I asked before she brought me up-to-speed on all the latest research and new approaches to using the technology. That lead to a lengthy period of investigation and personal research. I talked to other people who have had the surgery, watched a ton of webinars, and read everything I could get my cramped hands on. In between, I went on lockdown with everyone else as we all navigated the emerging Pandemic.
It was during this Pandemic period that I noticed my symptoms seemed to be getting worse; with a marked increase of off periods when my medications wore off and my symptoms went into overdrive. Stress was a factor and there was no doubt that navigating the Pandemic professionally (my nonprofit manages a municipal animal shelter and we never shut down) and personally (I was worried about my husband’s health as he went to work every day and had several Covid-positive patients) was taking its toll.
I shared some of these situations on social media to help me process what was going on and to be honest with people about the daily challenges that are a part of living with this disease. After one raw post in which I shared about the disease progression and the impact it was having on my exercise routine, a dear friend and neighbor, Pete Johnson, reached out and volunteered to accompany me on a daily three-mile walking loop.
I’ve learned over the years to manage expectations very conservatively, so when Pete made this offer, I eagerly accepted but told myself it wasn’t realistic to expect a friend to suddenly be my exercise buddy on an ongoing basis. The next morning Pete showed up at our house at 7:29 am It took about an hour for us to cover a three-mile loop. And then Pete showed up the next day. And the next. Fast forward a year and a half, and Pete and I estimated we have walked over 1,200 miles together, averaging 5 days/week, one step at a time.
Pete and his husband, Richard Fisk, became a part of our Covid-pod and their unconditional friendship played an instrumental role in helping my husband Peter and I cope with the progression of the disease over this last year and a half. When I entered the hospital for my DBS surgery, Pete and Richard both got buzz cuts in solidarity. That’s some serious friendship.
Preparations
In March of this year, I wrote Dr. Ash a long email outlining why I thought the time was right to pursue DBS. This led to a series of appointments and tests to ensure that I would be a viable candidate. Over the course of three months, I was given another MRI to ensure I was not an elevated risk for stroke (I was not), and an in-office evaluation of what my baseline symptoms looked like when I was completely off my meds and how those same meds worked to mitigate the worst symptoms. This was particularly important because people who tend to respond positively to Levodopa also tend to have the best DBS outcomes.
The third test was the most taxing; a very long morning with a neuropsychologist who evaluated my mental and intellectual capability and assessed if there was any cognitive decline that could get worse with the DBS. The tests were much more difficult than just remembering “person, woman, man, camera, and TV!”
While it’s hard for me to understand how these tests work if there is no baseline data from an earlier period, the neuropsychologist was pretty sure the disease was responsible for some cognition challenges she observed. When I asked Dr. Ash if this was perhaps just the reality of aging (most 55-year-olds forget names of people they’ve just met and routinely lose their keys!) she was confident it was truly Parkinson’s related. To my great relief, neither she nor the neuropsychologist was overly concerned, and both also noted that I scored very well in verbal ability. As a writer, that made me very happy. (With this disease, you learn to embrace any win.) Following all these exams, a meeting was scheduled with the various specialists where they would collectively decide about whether or not to recommend the DBS surgery.
Cleared for Surgery
On May 7th Dr. Ash wrote, “Our movement group finished reviewing your information and we felt you would be a great candidate for Bilateral STN DBS surgery which we would complete in one day (rather than staged 3 weeks apart).” I re-read the email several times and then gave myself the luxury of a good cry.
At that point, I was told to be a patient patient. The pandemic had caused a big delay in scheduling elective surgeries, and even though I personally now considered it “lifesaving” as opposed to “elective,” they were not scheduling any future DBS surgeries until early 2022. I simultaneously began the process of socializing the idea with people in my life – friends, family, and work colleagues – explaining the procedure, the hopeful outcomes, and the expected one to two months I would need to take off.
My work as the CEO of a nonprofit animal shelter is very important to me. It’s far more than a job or a career, it’s a calling. When I took over as acting director over 4 years ago, I truly thought my ability to work full-time was in the rearview mirror. I had just left the CEO position at a statewide organization focused on improving the lives of children in foster care. As much as I truly loved that organization and its mission, the demands of that job proved to be too physically exhausting for me to maintain.
This new job, which quickly went from acting to permanent, offered something I feel is critical for all people living and working with a disability—flexibility. With our organization thriving and in growth mode, I find myself at this sweet juncture of life where all my professional experience and personal passions are coming together as one. I still have a few more good years professionally, a big vision to accomplish, and buying time with the DBS surgery is one of my main motivations for taking this on. And, when I do eventually retire, I want to continue the world travels that are an important part of my life with Peter.
A Short Wait
Thinking I wouldn’t have the surgery until 2022, we scheduled a variation of our annual fundraiser for late September 2021. So imagine my surprise when during a call to discuss scheduling my DBS surgery I was told “we have a cancellation and can get you in on July 15th.”
My first instinct was to say, “No. I have too much to get done in such a short period.” But I promised I’d talk it over with the people in my life and get back to them within 24 hours. The first person I called was our Marketing Manager, Carla Thornton, the staff member who would be doing the heavy lifting on our upcoming fundraiser and most impacted by my leave. Without missing a beat, Carla said to me, “Of course you have to do the surgery in July. We’ve got this. You’ve taken care of us for the past four years. Now it’s our turn to take care of you.” Such is the quality of the people I work with. They are all rock stars.
That night when I shared the news of the possible July surgery date with my husband, Peter, he didn’t even hesitate. “Why would you not do it?” He asked. “You’re right,” I said, and then added, “When was the last time I said those two words to you?!”
Pre-Op
With July 15th confirmed, the surgery was scheduled at Kaiser in Redwood City, CA where they have a specialized neurosurgery center. We then entered into another series of meetings with various members of the surgical team lead by two wonderful Physician Associates, Diana Bruce, and Ivan Bernstein, who collectively became my internal champions and advocates.
These appointments included a day of pre-op exams and yet another MRI; this time even more involved so that could map my brain ahead of the surgery. During this period, we encountered several scheduling challenges with trying to find a time to meet with the surgeon, Dr. Mark Sedrak. As chief of neurosurgery, he is especially busy. Of all of my pre-op meetings, this was the one that was most important to me. I needed to feel confident in the individual who would be performing the all-day surgery with the support of a large team of medical professionals. There was also still one unresolved matter, which DBS product were they going to install? Several medical device companies, including Boston Scientific, Abbott, and Medtronic made competing DBS systems, each with their distinct advantages for different patients.
When Dr. Sedrak and I finally met online, he assuaged any concerns I may have had. Whatever else he had going on in his life, during our 45-minute meeting Dr. Sedrak gave the impression that I was the only thing that mattered.
It was during this meeting that the decision was made to go with the Medtronic Percept model, newly approved by the FDA in 2020 for DBS. While it has all the features of a traditional DBS device, after additional clinical trials and when fully activated, the Medtronic Percept will be the first closed-looped system on the market. As such, it will be able to read brain signals in real-time and immediately make necessary adjustments. That has the potential to be a game-changer for the field.
There was one more big scheduling change that happened. Trying to accommodate vacation schedules, the surgery was pushed back to July 22nd. This gave Peter and me a chance to take a week off and embark on a vacation through Utah and Colorado; nicknamed our “Clear the Heads” road trip. Returning a week before my scheduled surgery, I was able to schedule the required Covid test (mandatory even though I was also fully vaccinated) and tackle an ever-expanding “to-do” list at work.
Ready
A low-key birthday celebration was held with a couple of close friends in recognition of my 56th birthday on July 20th and I was allowed a single sip of champagne. At this point, I had four responsibilities – don’t fall, eat healthily, try to get enough sleep (nearly impossible with Parkinson’s), and keep my scalp from getting sunburned.
Having come this far and with the surgery two days away, there was no way I was going to miss this opportunity to potentially give myself a new life.
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A nationally recognized leader in the nonprofit sector, John L. Lipp has served as a trainer and keynote speaker for audiences around the world. He currently serves as CEO of Friends of the Alameda Animal Shelter. John’s publications range The Complete Idiot’s Guide to Recruiting and Managing Volunteers (2009, Alpha/Penguin) to creator of The Monsters Anonymous Club series for young readers, to personal essays for The Coffeelicious on Medium. In recognition of his lifelong commitment to a more humane world for people and animals, he was the recipient of the San Francisco Shanti Project’s 2019 “Dede Wilsey Champion of the Human-Animal Bond Award.” John and husband, Peter, share their Bay Area home with two wonderful rescue dogs, Lucy and Chance. He was diagnosed with Parkinson’ at the age of 49 in 2016. Follow John on twitter @VolunCheer.