Couple with Parkinson's undergo brain surgery on same day, by same surgeon at Baylor St. Luke's in Houston

April 2024
Dr. Sameer Anil Sheth performs deep brain stimulation surgery, which involves having electrodes probed into different locations of the brain to help alleviate symptoms of Parkinson's disease.

 

Allison Toepperwein and Steven Eury can hardly believe the twists and turns their lives have taken over the last several years.

Faith and science play a big role. Parkinson's disease plays another.

Steven Eury leads wife Allison Toepperwein through the hall at Baylor St. Luke's Medical Center in Houston. In December, they underwent deep brain stimulation surgery on the same day.

Toepperwein, 46, and Eury, 43, who live outside Charlotte, North Carolina, both have had early-onset Parkinson's disease since 2010. Back then, the two didn't know one another and lived in different parts of the country. Each had noticed hand tremors, a symptom of the disease.

In December, the couple underwent deep brain stimulation surgery at Baylor St. Luke's Medical Center in Houston on the same day, in the same operating suite, by the same doctor. In late January, the couple had their implanted electrical stimulation devices activated. They have experienced minimal symptoms since.

"We want to shout from the rooftops that God has been in this story," said Toepperwein. "As far as this surgery goes, it's just right in line with our story. God allowed two people with Parkinson's — who got married, who had symptoms at the same time, now married with combined families — (to have) this surgery, agreed to both do on the same day by the same surgeon."

Sheth

That neurosurgeon, Dr. Sameer Anil Sheth, said while the couple's story is unique, the operation they underwent is a routine one known to produce good outcomes. It's even common to do two such surgeries a day at the hospital. To have it on the same day was the couple's choice.

"Primarily, I'm very happy for the two of them," Sheth said. "Secondarily, I'm hopeful that their storylines resonate with other people, and it will encourage someone who maybe doesn't know about (the surgery) to find out about it."

Living with Parkinson's disease
Parkinson's disease is a neurologic disorder affecting the brain and causing difficulty with movements or motor functions, according to the American Parkinson Disease Association. About 1 million people live with Parkinson's in the United States and about 10 million worldwide, according to the association. When someone ages 21-50 is diagnosed, about 10% of cases, it is considered early-onset or young-onset Parkinson's.

The cause is unknown. It's more common in older men. Research suggests it's tied to genetic predispositions or environmental exposures to things like pesticides and solvents.

Toepperwein was 32 in April 2010, a new mother to a baby daughter, and living in Austin, Texas, when she held up a coffee pot with her left hand and it began to shake. She could only stop the shaking by pressing her left hand with her right one.

Eury was 29 in December 2010, living in North Carolina, visiting the hospital for his son's birth. He noticed a tremor in his hand when he held up a camera to film. The next year, he was diagnosed with early-onset Parkinson's.

Allison Toepperwein and her husband Steven Eury have early-onset Parkinson's disease. They connected online before meeting in person.

Both of their marriages fell apart. Toepperwein and her daughter moved in with her father outside Houston. Stress exacerbates symptoms, and Toepperwein's symptoms had become undeniable: She lost use of her left arm, she dragged her right foot, and she began slurring her words and choking on food. She was diagnosed with Parkinson's on New Year's Eve 2014, five months after leaving her husband.

"I was just at the lowest of my life," she said.

She got a job in communications at the Baylor College of Medicine in Houston and connected with doctors within that system for treatment.

She began blogging, taking medication, and exercising. In 2016, she became the first person with Parkinson's to compete on the television show "American Ninja Warrior."

She had several frustrating dating experiences. In May 2020 she wrote a heartfelt prayer on a piece of paper, surrendering her search for a soulmate, trusting that God would find the right person for her.

Just four days later, Eury bought some property on a street outside of Charlotte. The street was named Allison. He wanted to build a new home there for himself, his son and daughter and his dog Allie.

In August 2020, a friend texted Eury a blog post that Toepperwein had written about dating with Parkinson's. He asked if Eury had looked at any dating sites for people with the disease and sent a link to Toepperwein's profile. "Not yet," Eury texted back. "But the blonde may change my mind."

They met in person in October 2020, and within a few months, they had fallen in love. Toepperwein helped Eury build his home in North Carolina. In October 2022, they got married.

Game-changing surgery
Both Eury and Toepperwein had limited results managing their symptoms with medication, which they had to constantly adjust.

"But it also started going downhill as far as how much medicine it took just to give me a few moments or few minutes a day of relief," said Eury.

Toepperwein struggled with back muscle contractions, something that the medication, Botox injections or massages barely alleviated.

The surgery they each underwent involves having electrodes probed into different target locations of the brain, depending on the patient's symptoms. A generator/stimulator is then implanted just under the collarbone. Thin wires run from the electrodes beneath the skin under the scalp, behind the ear and down the patient's neck to the stimulator. The stimulator can be charged and programmed remotely.

Allison Toepperwein comforts husband Steven Eury at Baylor St. Luke's Medical Center in Houston. The couple were diagnosed with early-onset Parkinson's disease and underwent deep brain stimulation surgery on the same day at the hospital.

The couple traveled to Houston to have their surgery on Dec. 18; Eury first, then Toepperwein.

"We feel like we could not have had better surgeons, a better team — everybody was such an incredible blessing," Toepperwein said.

Eury calls the surgery "a game-changer." "Not of our own works," he said, pointing upwards. "This was His gift to us."

The couple took some time to physically recover from the surgery before the devices were activated in late January.

The programming sessions took hours, with a nurse practitioner adjusting the frequency and strength of the electrical pulses the device sends to their brains. Afterward, they were able to stand up, turn and walk without shaking and make fine motor movements with their hands. For the first time in a long time, Eury's parents could hear him speak: the Parkinson's disease had affected his voice, and he had only been able to whisper.

Allison Toepperwein competed in American Ninja Warrior in 2016 and 2017 and is pictured with her daughter Emma

Sheth had explained to them that the deep brain stimulator acted as a traffic cop for the brain: It disrupts the abnormal electrical signals that affect movement for patients, stopping the bad traffic and allowing the healthy traffic to flow more easily. The couple has since had more sessions to program and adjust the devices and are scheduled for more. In the meantime, they report they're doing great. They've joined a rock-climbing gym and go bike riding together. Eury started running. They also speak to groups to tell their story.

They continue to live on Allison Street with their combined family of three teenagers and their dog Allie.

"It truly is a quality-of-life procedure, and our quality of life is just incredible" compared to before, said Toepperwein. "You know, we walk in somewhere and we forget that we have Parkinson's. We walk into somewhere and see people that we haven't seen in six months to a year and they're just blown away and dumbfounded."

Husband and wife Allison Toepperwein and Steven Eury share a quiet moment at Baylor St. Luke's Medical Center in Houston.

Faith and the future
Toepperwein and Eury know the surgery isn't a cure. It's meant to help alleviate their symptoms, giving them another 10 to 15 years of quality life, and they wait for a cure or a way to better manage symptoms by then. They continue to grapple with that uncertainty and are grateful for the here and now.

Sheth, the surgeon, points out that he's not working alone. He credits his surgical team.

"From a faith point of view," he said, "I'm just here to kind of humbly serve and do my part in a big, intricate web of people who are doing their part with excellence."

Toepperwein said her faith has allowed her to face the uncertainties of her life, especially when she moved 1,100 miles to be with Eury. "I was just going with it. God was opening all these doors," she said.

Eury agrees. "This is a battle that is not easy," he said, "but we see the Lord's hand in all this. There's no denying it."

 

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