Neurologists around the world say that a small subset of patients with Covid-19 are developing serious impairments of the brain.
Although fever, cough and difficulty breathing are the typical hallmarks of infection with the new coronavirus, some patients exhibit altered mental status, or encephalopathy, a catchall term for brain disease or dysfunction that can have many underlying causes, as well as other serious conditions. These neurological syndromes join other unusual symptoms, such as diminished sense of smell and taste as well as heart ailments.
In early March, a 74-year-old man came to the emergency room in Boca Raton, Fla., with a cough and a fever, but an X-ray ruled out pneumonia and he was sent home. The next day, when his fever spiked, family members brought him back. He was short of breath, and could not tell doctors his name or explain what was wrong — he had lost the ability to speak.
The patient, who had chronic lung disease and Parkinson’s, was flailing his arms and legs in jerky movements, and appeared to be having a seizure. Doctors suspected he had Covid-19, and were eventually proven right when he was finally tested.
On Tuesday, doctors in Detroit reported another disturbing case involving a female airline worker in her late 50s with Covid-19. She was confused, and complained of a headache; she could tell the physicians her name but little else, and became less responsive over time. Brain scans showed abnormal swelling and inflammation in several regions, with smaller areas where some cells had died.
Physicians diagnosed a dangerous condition called acute necrotizing encephalopathy, a rare complication of influenza and other viral infections.
“The pattern of involvement, and the way that it rapidly progressed over days, is consistent with viral inflammation of the brain,” Dr. Elissa Fory, a neurologist with Henry Ford Health System, said through an email. “This may indicate the virus can invade the brain directly in rare circumstances.” The patient is in critical condition.
These domestic reports follow similar observations by doctors in Italy and other parts of the world, of Covid-19 patients having strokes, seizures, encephalitis-like symptoms and blood clots, as well as tingling or numbness in the extremities, called acroparesthesia. In some cases, patients were delirious even before developing fever or respiratory illness, according to Dr. Alessandro Padovani, whose hospital at University of Brescia in Italy opened a separate NeuroCovid unit to care for patients with neurological conditions.
The patients who come in with encephalopathy are confused and lethargic and may appear dazed, exhibiting strange behavior or staring off into space. They may be having seizures that require immediate medical care, and experts are warning health care providers who treat such patients to recognize that they may have Covid-19 and to take precautions to protect themselves from infection.
Much is still unknown about the neurological symptoms, but efforts are underway to study the phenomena, said Dr. Sherry H-Y. Chou, a neurologist at the University of Pittsburgh School of Medicine, who is leading a team of investigators for the Neurocritical Care Society.
“We absolutely need to have an information finding mission, otherwise we’re flying blind,” Dr. Chou said. “There’s no ventilator for the brain. If the lungs are broken we can put the patient on a ventilator and hope for recovery. We don’t have that luxury with the brain.”
Experts have emphasized that most Covid-19 patients appear to be normal neurologically.
“Most people are showing up awake and alert, and neurologically appear to be normal,” said Dr. Robert Stevens, a neurologist at the Johns Hopkins School of Medicine in Baltimore who is tracking neurological observations.
Neurological specialists also say that it is too early to make definitive statements or identify the specific mechanisms by which the new coronavirus is affecting the neurological system.
In one recent paper, Chinese scientists noted that there was some evidence that other coronaviruses were not confined to the respiratory tract and invaded the central nervous system, and the authors speculated that this may potentially play a role in acute respiratory failure in Covid-19.
Dr. Stevens emphasized that all mechanistic explanations at this point are hypotheses because so little is known: “It could be as simple as low levels of oxygen in the bloodstream,” resulting from respiratory failure, along with an increase in carbon dioxide, which “can have significant impact on the function of the brain, and lead to states of confusion and lethargy,” he said.
“We are still in the early days of this, and we don’t really know for sure.”
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Neurologists in Wuhan, China, where the outbreak started, were among the first to report the symptoms in a preliminary paper published online in February.
Since that report, specialists observed similar symptoms in Germany, France, Austria, Italy and Holland as well as the United States, including among patients under 60, Dr. Stevens said.
Some doctors have reported cases of patients who were brought in for treatment because of their altered mental state, and who ultimately tested positive for Covid-19, although they had none of the classic symptoms like fever or cough.
Four elderly patients who came into Danbury Hospital in Connecticut with encephalopathy ultimately tested positive for Covid-19, although they had no other symptoms, said Dr. Paul Nee, an infectious disease specialist at the hospital. Two of the four went on to develop low grade fevers and needed oxygen briefly, but two did not, he said.
While it is not unusual for elderly people to experience confusion when they develop other infections, “the striking thing is we have not seen any real respiratory illness in these patients,” Dr. Nee said. They have continued to test positive and cannot be discharged, even though they are not really ill, he said.
But earlier reports had indicated that severely ill individuals with more typical symptoms were more likely to exhibit the rare neurological conditions, which ranged from dizziness and headaches to impaired consciousness, stroke and musculoskeletal injury. The Chinese study in February said that about 15 percent of those patients with severe illness experienced a change in mental status, compared with 2.4 percent of those who did not have severe illness, according to that study.
Another study, published in the British Medical Journal in late March, found that of 113 patients from Wuhan who died of Covid-19, 22 percent had experienced disorders of consciousness, ranging from somnolence to deep coma, compared with only 1 percent of another group of patients who recovered from the illness.
For potential Covid-19 patients and the people caring for them, the Centers for Disease Control and Prevention includes “new confusion or inability to rouse” among the warning signs that should prompt a decision to seek immediate medical care.
Patients who have encephalopathy and seem confused or incoherent are prone to having seizures, and should receive treatment as soon as possible, said Dr. Jennifer Frontera, a neurologist at N.Y.U. Langone Health who is working with Dr. Chou. She added that seizures can manifest in more subtle ways than the dramatic presentations often depicted in movies and television shows.
“Seizures are not always big things where people fall down and are shaking on the ground,” Dr. Frontera said. “Some could be just veering off, not paying attention, making repetitive non-purposeful movements, or just mental status changes where people are just not themselves.”
But even if seizures are not observed, people who are sick should be aware of other potential mental symptoms.
“You don’t feel your best when you have a fever, but you should be able to interact normally,” Dr. Frontera said. “You should be able to answer questions and converse in a normal fashion.”
She added: “I don’t want everyone calling 911 because they’re overly concerned. We just don’t have the capacity. But if someone is really out of it, they probably need medical attention.”
When an ambulance came to rush Amy Goyer’s mother to the hospital one night in 2012, there wasn’t time to pack a bag. Ms. Goyer grabbed a few essentials and tailed the emergency vehicle in her car.
A previous stroke had left Ms. Goyer’s mother mostly uncommunicative, and her father’s dementia made it hard for him to recall important details. They were both counting on their daughter to field questions from her mother’s doctors.
“There’s a sense of panic and urgency,” Ms. Goyer, now 59 and a resident of Arizona, said. “You have one thing on your mind, and that’s getting there.”
According to the Centers for Disease Control and Prevention, about 8 percent of Americans had to spend a night in the hospital in 2018. Meanwhile, according to the American Psychological Association, as of 2016, nearly one-third of Americans have cared for an elderly, ill, or disabled family member. Many of those people may, at some point, require hospitalization.
If you have a chronic illness that requires frequent hospital visits, or you’re caring for an ailing family member, consider packing a “go bag” that you can grab on your way out the door. Ms. Goyer, who is AARP’s caregiving expert, and has personally seen her parents and sister through numerous hospitalizations, said certain items can make the experience more bearable.
“Creature comforts are very important in the healing process,” she said. “You might think it’s all about the medicine and surgical procedures, but it’s not. It’s about feeling safe, secure, comforted, loved, and supported.”
Comfortable clothes and bedding
Not all hospitals will let you bring your own bedding, but if you can, Ms. Goyer said, the feel and smell of your own pillow or a blanket from home can be a huge source of comfort.
“I had this really nice, soft, fuzzy blanket that I started bringing along for my mom,” she said.
Hospitals are often cold, she said, which some studies suggest may make it harder for your immune system to fight off infection. Pack a robe, slippers, socks, a beanie, and other warm (and comfortable) clothing to regulate your body temperature — in addition to getting plenty of rest and fluids. This is important for patients as well as for caregivers who are spending time in the hospital with them, she said. “The last thing you want is to get sick because you were in the hospital caring for someone else.”
All clothing should be loose and comfortable, so you can get in and out of it easily for IVs or any tests. Label everything with your name, so it doesn’t get lost or forgotten. Pack some clean underwear and a change of clothes for the trip home.
A hospital stay is probably not the best time to try to tackle “Infinite Jest.” To occupy your mind, bring along something you enjoy — whether it’s a magazine, coloring book, crossword puzzle, knitting, or cross-stitching supplies — that won’t be overly strenuous.
If you have a spare phone, tablet, or hand-held gaming console at home, load it up with games, movies, music, audiobooks, podcasts, comedy specials, or whatever you think will bring you joy. Just don’t forget the chargers. A high-capacity power bank, an extension cord or surge protector, and extra-long charging cables are also useful in case outlets are out of reach. (Here are Wirecutter’s recommendations for the best fast chargers and accessories.)
Anything that will let you sleep
“Sleeping is always one of the most difficult aspects of being at the hospital,” Ms. Goyer said. “And it’s awful because getting good rest is so, so crucial for healing.”
She recommends lavender room spray or lavender essential oil with a diffuser, since lavender aromatherapy may help improve sleep and reduce anxiety (although scientific evidence is inconsistent on either claim, according to a 2014 Cochrane review). At the very least, it probably smells nicer than hospital air. A travel pillow can be useful if you need to sleep while propped up, and an eye mask, earplugs, and headphones can help block out beeping and blinking from medical equipment. If you have a private room (and if it won’t disturb your nurses and doctors), you could also bring a white noise machine (we recommend the LectroFan) or a Bluetooth speaker (our favorite is the UE Wonderboom 2) to play soothing sounds or music.
Think about how you or your loved one likes to sleep at home, Ms. Goyer said: “If they’re used to falling asleep with the TV on, let them do that. Whatever works.”
Surprisingly good snacks
Most hospitals have cafeterias and vending machines, but the food can be bland, unimaginative, and in some cases, unhealthy — especially if you’re eating it day after day. Your favorite nutritional snacks — whether it’s a bottle of cold-pressed juice or a tin of fancy tea bags — can go a long way toward making you or a loved one feel better. Just be sure to run any snacks by hospital staff, since most hospitals have restrictions on outside food and drink.
Some treatments leave a bad taste in patients’ mouths, so pack mints or gum to keep your mouth feeling fresh. And don’t forget a water bottle or tumbler to stay hydrated, which is crucial for healing.
Tools for organization and empowerment
Liwanag Ojala, chief executive of CaringBridge, a service to connect patients and caregivers to other people dealing with an illness, said it’s always a good idea to bring along a list of the patient’s medications and allergies, names and numbers for all the patient’s doctors and specialists, and emergency contacts.
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Ms. Goyer adds that if you’re packing for a loved one, it can be helpful to print out multiple copies of essential information: a scan of their insurance card, their medical history, and their advance directive (also called a living will, which you can find on AARP’s website). That way, she said, you have the information handy if your phone or laptop dies, and you can give a printout to various doctors and nurses as needed.
If you’re tech-savvy, note-taking apps like Evernote or OneNote can be helpful to keep track of doctors’ updates and other information. But a paper notepad and pen work just as well, if that’s what you’re comfortable with. With permission from the doctor, a voice recorder (or a recording app on your phone) can also be helpful for going back to conversations after you’ve had some time to mentally process. Document everything, Ms. Goyer said: “I guarantee you’ll have to go back and check what happened three days ago.”
Toiletries to stay clean and healthy
Basic essentials like deodorant, a toothbrush and toothpaste, contact solution, dry shampoo, and face and body wipes are must-haves for a hospital go bag, especially since it might be tough to shower regularly. Ms. Goyer also recommends bringing your own hand sanitizer, antibacterial hand wipes, toilet paper, and facial tissues, since they’ll probably be nicer than what the hospital provides.
Disinfectant wipes are great for wiping down frequently used (and infrequently cleaned) surfaces like TV remotes, to prevent the spread of infections. Additionally, Ms. Goyer said, you should make sure to wash your hands with soap and water as much as you can.
Hospital air is also notoriously dry, so you should pack moisturizer, lip balm, and saline nasal spray, and drink plenty of water. When Ms. Goyer’s mother got a sinus infection in the hospital, she got her doctor’s permission to bring in a steam vaporizer to provide some relief.
Some hospitals won’t allow you to take medication you bring from home — even over-the-counter meds — as a safety precaution. But just in case, it’s a good idea to bring along a few extra doses of any medications you’re taking, as well as medical devices like inhalers or hearing aids.
Ms. Ojala said the contents of a hospital go bag will vary depending on the needs of the patient and caregiver.
“What I’d love for people to do before packing a bag is think about what helps them heal,” she said. “Clinicians are great at their jobs, but they don’t often ask: ‘What do you think is going to help you?’ ”
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A version of this article appears at Wirecutter.com.