Kas Bothwell, 60, smells the fire in his house up to ten times a day. Sometimes it is randomly invaded by other smells, like fried onions. For two days, she smelled enough beer for a party at her house in Birmingham.
“I’ve searched my house, up and down, trying to find any burning wires,” Bothwell said of the smells of smoke and fire that linger, even when she vaporizes perfume. “I thought my laptop was overheating.”
Bothwell believes she had COVID-19 in February. Over the past six months, her toes have turned purple and her hair has fallen out. She feels overwhelmed by fatigue. She smells strange things more when she is tired. When she wakes up to the smell of fire, she knows it will be a bad day; she can’t get out of bed.
Bothwell is one of a growing number of COVID-19 survivors whose brains have been altered by the disease. They are part of the so-called “long haul”, roughly ten percent of people who have recovered from the disease but face symptoms in the following months.
Some had only minor symptoms of COVID-19, while others were hospitalized. They have chronic problems like confusion, fatigue, migraines, and sensory changes. Some see improvement over time; others descend.
Bothwell’s ability to do her coding job was not affected, but she frequently forgets the names of people at work and has lost abilities that were once second nature, like typing.
“It’s like my fingers are going in the wrong place,” she said. “I am constantly typing a G instead of a D,” she added. “I really have to think about spelling words that I know how to spell. I’ll be halfway there and get lost in the middle of a word.
Bothwell doesn’t dwell on her limits, but she looks forward to having the energy to return to her hobbies like gardening or playing guitar with friends.
“I would really like to slowly come back to me.”
White matter changes
Researchers still don’t know why some people constantly feel sick or confused months after COVID-19. A study of over 500 COVID-19 hospital patients found more than 82 percent to have neurological impact from the disease. Another COVID-19 posed can cause 10 years of aging in the brain.
A hackneyed immune response is a prominent theory among scientists studying patients with so-called “long COVID”. In addition to cognitive issues, patients with chronic issues after illness report gastrointestinal issues, fever, insomnia, hair loss, and a sometimes confusing and diverse range of lingering side effects.
“I’m trying to face it”
Shartra Rush, 41, once worked 16-hour shifts at a paper mill near Prattville as a lab technician, but she can’t get out of bed most of the time due to painful migraines, a problem that she had never had.
“Some days I get up, take a bath, eat a little something, go back to bed. It’s like that. I’m learning to try to deal with it. “
Rush said she had COVID-19 earlier this year when other family members tested positive for the disease. She often lies down with blurred vision and ringing sound in her ear.
“Sometimes I have (migraines) on the left side of my face, it’s like something hammering like a needle. And they get so bad, where they got the nerves pounding in my head, ”she said, adding that she was trying to sleep. She has little appetite and can no longer exercise.
Rush sees a neurologist and takes medicine. Her headaches are still getting worse, and she says her doctor has told her they could face these issues for the rest of her life.
“I thank God every day that I am here because it could have been worse. I try to stay positive. I try not to let anything stress me out.
“We are far from understanding”
In Birmingham, Dr Shruti Agnihotri studies the experiences of people like Rush.
“I think there is a good understanding of the symptoms that COVID-19 can cause, including neurological symptoms and complications, but I think we are quite far from understanding why they occur and how best to combat them” said Agnihotri, a neurologist at the University of Alabama at Birmingham.
She says more than 60% of hospital patients experience neurological impacts. Its objective is to determine whether patients belonging to minorities are more sensitive to cognitive effects.
“We have seen many different neurological complications in our patients so far,” she said. His patients have strokes and seizures, chronic fatigue, myalgia, nerve pain and headaches.
She says that for some, brain damage can be caused by inflammation due to the disease.
“We call them changes in white matter. These are changes in the parts of the brain that have the connections between different parts of the brain, ”she said.
The most difficult question for Agnihotri’s patients is whether these problems will ever end.
“I think this is the most difficult and the most frustrating aspect for the patients, as well as the anxiety,” she said.
“Uncertainty. Not knowing what the results will be and that not many people will have answers on what to do about it.”
“A year of losses”
Sarah Rutledge Fischer, 43, is a law graduate artist at Fairhope. She used to paint murals, run a nonprofit organization for LGBT teens, write freelance articles, teach art classes, and raise bees.
Fischer can no longer work and has to choose a few activities each day because his energy drops after about 30 minutes.
“I am a person who relies on my ability to think and process my thoughts and use my words,” she said.
Fischer starts his day helping his 7 year old son with his lessons.
“I have the greatest clarity of thought in the morning, then at noon I just have a harder time finishing a sentence and thinking through a stream of thought.”
She says she is an optimist who will adjust to this much needed lifestyle.
“There is certainly a lot of sadness. There is definitely anxiety and fear. There is a lot of anger. There is also a certain absurdity, so there is even a little humor in it. It has been a year of losses. It’s been a year of letting go of things I can’t do.
Fischer was very ill with symptoms of COVID-19 in July but has tested negative for the disease three times. Her doctors believe she had COVID-19 in February and has had periodic relapses of symptoms since.
She said she had a constant fever, pain in her bones, had brain fog, and was physically disoriented.
“My sense of spatial awareness is really going away, which is a weird thing to describe, but I’m going to walk from room to room and bang my shoulder on the door frame,” he says. it.
The medical tests that Fischer underwent reflected an autoimmune problem, but they did not identify a diagnosis. While no longer contagious, with her symptoms lingering, Fischer imagines her neighbors and others might want to avoid her.
“There is a real sense of isolation in being continually ill at a time when being ill is even more frightening.”
Somewhere to turn
UAB is one of the country’s hospitals start clinics to help treat Long-haul COVID-19, although known treatments may not yet be available.
“It’s important to make sure that we also have committed psychiatrists, as this could be linked to the stress and anxiety related to COVID and the symptoms,” said Dr. Turner Overton, an infectious disease specialist in the UAB, which leads the post-COVID treatment program towards referring patients to specialist care.
Dr Agnihotri says many patients have found support and companionship on social media groups for COVID-19 survivors.
It can be helpful for patients to rest, drink water, or manage their oxygen levels if they are low, Agnihotri says.
“There are no specific drugs for COVID-19,” she said of the long-haul recovery process.
“I got my brain back”
Ardith Goodwin, 53, a friend of Fischer’s who is an artist and teacher in Mobile, struggled with brain fog and an inexplicable feeling of pressure in her ear after recovering from COVID-19 this year
“There are days when I hear an ocean in my head,” she says, but her brain fog has improved dramatically after several months. She used to ask her husband to keep her on track with a to-do list. She would see friends and would forget their names or lose a thought in the middle of a sentence.
“The months go by and you really feel mentally like ‘I should be better. I should be fine. You start to question your own mental faculties, ”she says.
But one day she realized that something had changed.
“I was in my studio working on the curriculum, and it occurred to me that I was able to connect the dots with my scope and my program. I’m like, ‘oh my god.’ It was as if a light bulb had gone on, and “I got my brain back,” “she said.
“I can look back and see how bad it was. In the past two months, I have recovered my mental faculties to 100%. “
For Bothwell, the computer programmer, a resolution is not yet in sight. She says her doctor is skeptical of what she is going through and that many of her friends seem uncomfortable discussing her symptoms.
“Fortunately, I haven’t lost who I am except the silly part of me,” she said of her love of gardening and house projects. “My daughter calls this my ‘beast mode’,” she said.
“Even a walk down the street seems too difficult for me now, but we’ll get there. Hope we get there.