“The Stars Aligned”: One warrior’s journey with Parkinson’s
When Allison Toepperwein first noticed a tremor in her left arm one April day in 2010, she could never have imagined the trajectory her life would take. From being diagnosed with Parkinson’s disease as a Baylor College of Medicine patient, to becoming a Baylor employee and then a patient again, this time as a deep brain stimulation surgery recipient, Allison’s journey has been filled with many victories, a few challenges, several side quests and an outpouring of support, with all roads leading back to Baylor.
Crossroads
Allison vividly recalls those early days in 2010 when she first began experiencing symptoms. Shortly after giving birth to her daughter, she was filling a coffee pot with water, holding it in her left hand, when it began shaking uncontrollably. “The only way that I made it stop was by grabbing it with my right hand,” she recounts. She initially shrugged off the incident.
When the tremor sporadically reappeared over the next few months, Allison mentioned it to her cousin, a nurse. “When I told her, she said, ‘You need to get that checked out.’” However, like countless others, various obstacles kept her from initially seeking an expert opinion. “There were a lot of reasons why I didn’t go to a neurologist — fear, and we didn’t have good insurance,” Allison explains.
The road to Baylor
It was not until fall 2014 when Allison went to see her general practitioner about her symptoms. She and her primary care physician had wondered if an undiagnosed injury from a car accident several years prior was causing the tremor. After initial tests left the pair with more questions than answers, Allison’s doctor referred her to a general neurologist at another Houston-area hospital. “The first time [the neurologist] saw me, I spent all day doing different labs,” she remembers. “At the end of it, he said, ‘You have Parkinsonian symptoms, but I don’t think you have Parkinson’s.’ The reason he said that was because I was a 36-year-old female – I didn’t fit the demographic.”
On her second visit to the same neurologist, the diagnosis was clear: Allison did in fact have Parkinson’s disease. While nothing appeared on her most recent MRI, the stress of not knowing what was happening to her body — coupled with a stressful divorce — had pushed all of Allison’s symptoms forward.
After the shock of her diagnosis subsided, it was time to formulate a plan of attack. She recalls, “I didn’t even know that movement disorder specialists existed, but I knew that there had to be somebody out there who specialized in more than just general neurology.” That was when she received a referral to see renowned Parkinson’s expert Dr. Joseph Jankovic, founder and director of the Parkinson’s Disease Center and Movement Disorders Center at Baylor.
A series of side quests
From their first meeting, Dr. Jankovic prescribed medications as well as a few other treatments Allison found surprising. “He prescribed me medicine, but he also went outside of the box,” she describes.
By August of 2015, Allison had been a patient of Dr. Jankovic’s for about six months. By that point, he had prescribed sharing her experiences through motivational speaking and exercise in addition to the usual medications.
“That’s one of the things that I think serves Baylor so well — these are not typical doctors, clinicians or surgeons.”
Through motivational speaking, Allison, who had already begun blogging about her experiences, could share her story with a wider audience. “A friend of mine who was a teacher said to me, ‘Your story is really inspirational. Would you be willing to speak to about 500 students?’ And that began my motivational speaking career,” she recounts.
In addition to her new side gig as a motivational speaker, Allison found a passion for exercise, and not just simple cardio.
“In November of 2015, I ran a mud run. It was seven-and-half miles and 30 military-style obstacles.” Allison’s athleticism soon drew the support of fans on social media and ultimately won over the producers at American Ninja Warrior. Allison made her debut on the hit reality show in the summer of 2016, a year-and-a-half after receiving her life-changing diagnosis.
A new adventure
Allison’s stint on American Ninja Warrior lasted two seasons, one aired and the other unaired. By October 2016, she was an established patient of Dr. Jankovic’s and appreciative of the high standard of care she was receiving at Baylor, so much so that she took on another role in the Baylor family — employee.
“I was already a fan of Baylor when the job opened up,” she reflects. “It was for the cancer center versus neurology, and I didn’t know a lot about cancer, but it was the kind of place I wanted to be.” Allison took on a role overseeing communications for the Dan L Duncan Comprehensive Cancer Center and her experience as a patient not only made the role more meaningful, but also gave her a special insight. “I can speak to all different aspects of how Baylor College of Medicine runs as a whole.”
Things remained stable for a few years. Allison admitted she had been looking for a new partner in life while taking on the new challenges she faced, but then the COVID-19 pandemic began and like so many, she was left feeling alone and isolated.
For Allison, the pandemic brought about a new resolution. “In May 2020, I wrote a prayer,” she said. “I was no longer looking for men. I no longer wished to meet my soulmate. I was focused on my continued well-being.” Little did she know her soulmate was 1,100 miles away in North Carolina, buying property for himself, his two children and their family dog, Allie, on — of all places — Allison Street.
Steven had more in common with her than just a street name. He first learned about her journey after a friend shared one of Allison’s inspirational blogs with him because like her, Steven had also been diagnosed with Parkinson’s several years before.
He decided to reach out to Allison in mid-2020. The two connected and before long, were spending hours on the phone. In October 2020, the two met in person for the first time. And as the saying goes, one thing led to another, and in 2022, Allison and Steven were married.
“The stars aligned”
In January 2023, Allison convinced Steven, who had been seeing a neurologist in North Carolina, to give Dr. Jankovic a visit. “I told him I know a guy. Just make sure your insurance covers it.” Steven’s first appointment with Dr. Jankovic was life-changing for the couple. “Dr. Jankovic took a look at Steven and said, ’You’re a good candidate for DBS.’”
In existence and approved by the Food and Drug Administration for more than 20 years, deep brain stimulation (DBS) has proven to successfully manage symptoms of various conditions such as Parkinson’s disease by disrupting the abnormal patterns of brain activity. At Baylor, multidisciplinary teams of experts regularly perform DBS surgeries and provide subsequent programming and follow-up care.
Dr. Jankovic’s recommendation to Steven made Allison think of her own situation and whether she would be a good candidate for the same type of procedure.
“Dr. Jankovic had told me at one point that I was a good candidate for DBS because medications have a threshold for effectiveness – the side effects of the medications end up outweighing the symptom relief.”
Allison began doing further research, which was made easier by the fact that her time working for the cancer center made her familiar with two leading DBS experts, Dr. Sameer Sheth and Dr. Ashwin Viswanathan. “Because I worked for Baylor, I had already heard of both. They deal with pain management and are part of the neurosurgical teams at the cancer center.”
It was important to Allison that both she and Steven receive surgery on the same day. “We had the same diagnosis, the same opportunity to do it together. Besides, I wouldn’t have been able to take care of him. I told Steven this was our time to be selfish and to ask for help from others.”
“It was like all the stars aligned.” Allison warmly recounts how Dr. Sheth would be able to accommodate their unique cases. “Liz, Dr. Sheth’s surgical coordinator, worked with the hospital to get us scheduled on the same day. It was about quality of care and compassion.” Similarly, Dr. Sheth patiently took the time to ease any lingering concerns the couple had. “He spent two hours with us and answered every question that we could possibly ask, silly or not. It truly felt like he was treating us like family.”
Allison and Steven also received support from family. “We scheduled the surgeries for the week before Christmas. Steven’s mom flew with us and cared for him, and my sister, who’s a teacher, was off and took care of me.”
With all the preparations in place, on a chilly December morning in Houston, Allison and Steven underwent successful deep brain stimulation surgeries at Baylor St. Luke’s Medical Center. Steven went first. “I was in pre-op,” Allison thinks back on that day, “and Dr. Sheth came to me and said, ‘Your husband’s surgery could not have gone more perfectly.’”
Because things went so smoothly and quickly for Steven, the OR was sanitized, and Allison was wheeled into the same room.
“We all had a joke about sharing the room, and everybody was just so nice. I got to see the robotic arm, and that’s all that I remember.”
Embarking on a new journey
“How do you feel?” Allison recalls being asked as she was waking up from surgery. “I feel great!”
Like Steven, Allison’s surgery went smoothly, and the pair enjoyed an easy recovery. “By day four, I was off pain meds. I think Steven still took some Tylenol here and there.”
This initial procedure was to implant electrodes in the brain. After a month-long recovery, the pair returned to the Department of Neurology to have their devices programmed. “The programming went well. It took us three hours each. It was a game changer for us both.” Allison explains that because of the unique qualities of their cases, their results varied. “For Steven, the DBS programming takes seconds to turn on without medication. My most painful symptom is cervical dystonia, which isn’t as visible. With the DBS, it has been virtually eradicated. I was on six medications a day, and now I’m only on one.”
“As for next steps, we’ll be coming in once a month for the next six months to tweak the programming and medication for optimal results. DBS isn’t a cure, and the results aren’t immediate, but we are able to function so much better already. Steven and I have a large part of our lives back. We feel blessed and thankful to live a beautiful life with unshakeable love.”
Learn more about deep brain stimulation for movement disorders at Baylor Medicine or call the department of neurosurgery at 713-798-4696.
Learn more about the Parkinson’s Disease Center and Movement Disorders Center at Baylor Medicine or call the department of neurology at 713-798-2273.
By Cristina Flores, communications associate with the Department of Neurosurgery
