Atwood’s journey: Lots of tests, few answers
With people who contract viral encephalitis, the symptoms can come on fast, sometimes within a few days: high temperature, headache, sensitivity to light, malaise, and stiffness. Later, there can be changes in personality, confusion or hallucinations, changes in senses, memory loss, paralysis, loss of consciousness and coma, according to Mayo Clinic.
For autoimmune encephalitis sufferers, it’s often more of a journey, Easton said, with symptoms typically occurring over weeks.
Atwood said she didn’t know anything was wrong until the first seizure on Sept. 15, 2022. She was taken to Halifax Health in Daytona Beach for several days, but multiple tests did not identify a cause.
Atwood has no memory of any of her seizures.
“I woke up in the hospital and asked (Ken) where I was. That’s all I remember,” she said.
Ken Atwood said after he first was allowed to see his wife a few hours after the initial seizure, she seemed to be normal.
“And then all of a sudden, she looked off in the distance,” he said. “Her memory was gone . ... And it’s been like that ever since.”
She was given seizure medicine and referred to a local neurologist.
Atwood had another seizure in November.
This led to multiple hospital stays and batteries of tests. She saw the neurologist, her local primary care physician and her Veterans Administration doctor and all were “stumped.” In the meantime, she had more seizures, her memory loss worsened and she started having episodes of breathing difficulty.
She got a referral to the Mayo Clinic. Because its Jacksonville campus was booked, as were other Florida options, Ken Atwood decided to set up an appointment at the Mayo Clinic in Phoenix, Arizona.
It was October 2023 when she finally received her diagnosis: autoimmune encephalitis LGI-1.
Part of her treatment involves blood infusions to suppress the immune system.
How she feels depends on the day. Some days, she’s good, at least for a few hours. Others, she needs to use a walker.
“I can’t regulate my body temperature,” she said. “I’m either like infernohot or ice cold.”
What she remembers, and forgets is random
She said she has suffered “a lot” of memory loss: She recognizes faces but can’t recall names the way she did on the campaign trail. For her 60th birthday party recently, the Atwoods asked guests to wear name tags.
“We encouraged them to speak with each other if they didn’t know each other, but it really was for me,” she said, “so I didn’t get embarrassed by not knowing who I was talking to.”
Atwood, a social media user, said she uses Facebook Memories to trigger her mind, asking Ken who people are and when things occurred.
People sometimes joke with her about the movie “50 First Dates,” a romcom in which a guy meets the girl of his dreams only to discover she has shortterm memory loss and each day he has to reintroduce himself to her.
Her memory loss is random: some short-term, some longer-term.
But Atwood said she’s “blessed” that she hasn’t forgotten her husband, parents and children.
Once a runner, Atwood has given that up, but has instead participated in some recent 5K races, walking the route, rather than running. At one of the 5Ks, some friends she used to run with completed their races, then ran back to Kat and Ken Atwood to walk the rest of the way with them.
Her most proud accomplishment of late, she said, has been contacting the mayors of all 16 municipalities and getting nine of them to recognize World Encephalitis Day.
Part of the effort involves lighting landmarks in red. Cities participate worldwide, Easton said, with Niagara Falls, Liberty Place in Philadelphia, Boston City Hall and Johns Hopkins Hospital in Baltimore being among them.
Several Volusia County cities will light landmarks in red, including South Daytona, which will spotlight its city markers along U.S. 1 for 24 hours.
“The city gets involved with a lot of good causes. This is an excellent cause to get involved in,” South Daytona Mayor Bill Hall said.
Ponce Inlet Mayor Lois Paritsky said Atwood gave a presentation at the Jan. 18 Town Council meeting. She shared a video, talked about the disease and her struggles and asked for the World Encephalitis Day proclamation.
“Ponce Inlet’s Town Hall, police station and fire station will be lit in honor of this important day,” Paritsky said.