It was as normal a morning run as any for avid runner, Macy Sirmans, when she said she felt sick and stopped to take a breath.
“It felt like I was coming down with the flu,” said Macy. “But after a few minutes and a quick phone chat with my boyfriend, I started to feel a little better.”
Macy had recently moved from Manhattan to be home with her family during the COVID-19 pandemic. While at home, Macy worked to stay active, continuing her daily 10-mile run.
“Running was my favorite way to relax,” said Macy. “My life had changed much like many others due to COVID-19, but I could still go outside and spend valuable time with family.”
After her run, Macy celebrated an early fourth of July weekend with relatives and close friends.
On the night of July 3, Macy sat on her bed talking with her mother when she suffered a massive seizure.
“It was the scariest moment of my life,” said Margie, Macy’s mom. “At the end of the attack, she went limp. I thought my daughter had died.”
A family member immediately called 911 and Macy was taken by ambulance to Habersham Medical Center.
Because of strict visitation restrictions due to COVID-19, Macy’s parents had to wait outside in the parking lot, talking and texting with her by phone.
Macy was kept overnight for observation and released the following morning. She was prescribed an anti-seizure medication and referred for a follow-up appointment with physician Rhett Weaver, MD, at Longstreet Clinic.
After returning home, Macy made an appointment with her physician for the following Monday. Dr. Weaver referred her to a neurologist at Northeast Georgia Medical Center (NGMC) Gainesville immediately following the visit.
The day after her appointment with Dr. Weaver, Macy started acting strange, something her family attributed to side effects of the new medication.
“She was not acting like herself and I could tell something was wrong.” said Margie. “When you’re a parent, all you want is for your child to be okay. I didn’t know how to help her. We needed all the help we could get.”
After some bloodwork, Macy was ordered to undergo magnetic resonance imaging (MRI) at the Imaging Center in Gainesville. While she was being prepped, Macy suffered her second seizure. Macy was immediately rushed to the Emergency Department at NGMC Gainesville.
“Macy was delirious and started hallucinating and yelling strange things,” said Margie. “I was the only person allowed to be with her in the Emergency Department to help restrain her.”
Macy underwent a second MRI and a psychiatric evaluation. Soon after, she suffered a third and final seizure.
“My daughter wasn’t herself anymore,” said Dalton, Macy’s father. “She started hallucinating – seeing people watching her through the TV, listening to her through the radio, among other things. She even broke up with her boyfriend, Francis, for no reason. We were scared that she would harm herself or worse.”
Comprehensive Neurological Care at Home
The neurology team at NGMC Gainesville ran test after test on Macy but it was only after a lumbar puncture – a diagnostic test where a needle is inserted into the space between two vertebrae to remove cerebrospinal fluid – when Macy was diagnosed with a rare autoimmune disease called Anti-NMDAR Encephalitis. The disease is caused by the brain creating antibodies against NMDA receptors in the central nervous system.
“Anti-NMDAR encephalitis is an extremely rare condition which affects one out of 1.5 million people a year,” said Zijayamala Bonduguoa, MD, neurologist at NGMC Gainesville. “In Macy’s case, she was exhibiting all the symptoms including paranoia, hallucinations, loss of consciousness, seizures and memory loss. Her success depended on the right treatment and a world-class team of nurses, neurologists, rehabilitation team – which we have here at NGMC.”
Turning a Corner
After a week of steroid treatment, it was agreed upon by her neurology team that she could be cared for from home. Once at home, her treatment involved a series of intravenous immune globulin (IVIG) antibodies administered by a home-health nurse.
“I required constant care, attention and medication,” said Macy. “But with the IVIG treatments, I started to feel more and more like myself again.”
Rehabilitation and Recovery
During the first few weeks of recovery at home, Macy struggled with paying attention and expressing herself through language. After more testing, she was diagnosed with mild-moderate receptive and expressive aphasia – difficulty understanding and forming sentences.
“I didn’t want my parents to have to take care of me – I wanted to go back to the independent person I was before my diagnosis,” said Macy. “That’s when Rebecca Sabo, my speech therapist, stepped in. She became my lifeline.”
Macy underwent four months of cognitive and speech therapy. Her plan started with the alphabet, then keyboard exercises, reading the Wall Street Journal, and simple physical exercises. In the early days of recovering, Macy’s parents would shadow her in a golf cart as she jogged.
Just three months after her first seizure, Macy was finally deemed fit to travel and reunite with Francis.
“Although our daughter’s personality was unrecognizable to Francis, Margie and me, we could still sense that iron will of hers,” said Dalton. “Sometimes it worked against us when the disease was in control of Macy’s words and actions. But as she recovered, Macy pressed forward.”
“Macy values her relationships,” said Francis. “Her strength and perseverance are two traits that make Macy the woman she is. I knew I could get her back, and I did.”
At the end of only four short months, Macy recovered her speech and motor skills, and running 10 miles a day in her North Georgia mountain neighborhood.
“Rebecca and the team of neurologists encouraged me to find my voice and my footing and finish strong.” said Macy.
Grateful to Be Alive
Macy completed her personal goals of running the New York City Marathon in November 2021 and the London Marathon in October 2022. In late 2021, Macy landed her dream job as the Marketing Director at Conde Nast, a global media company headquartered in London and New York. Macy moved to London in 2023 to begin married life with Francis.
“Going through this experience helped me have a deeper appreciation for my life and the amazing things my body is capable of,” she said.
“I’m grateful to be alive, thanks to pro-activeness and care of the neurology, imaging and rehabilitation team at Northeast Georgia Medical Center. The patience they showed me and encouragement I received raised my spirits on the bad days and enabled me to get back to living a full life.”
Our physical, speech and occupational therapists at NGMC are here to help you get back to doing what you love most. Learn more at www.nghs.com/rehab.