No longer alone, but still not out of the woods

CONTRIBUTED PHOTOS On the left is Erica Woodbury of Huron, on the right, Denae Tordoff poses with her family

HURON — When Denae Tordoff and Erica Woodbury contracted COVID-19 in November 2020, neither area woman could have guessed that they would become part of an expanding group as the world comes out of the pandemic.

Denae, who lives in De Smet, had a difficult experience through her initial two weeks with the virus.

In fact, she even had a premonition that she was positive with COVID-19 before she tested such.

“Prior to being diagnosed, I had anxiety attacks in the middle of the night, and I had never had anxiety before,” Denae remembered.

She continued, “I lost my taste and smell to begin with. Then there were two days there that I 100 percent thought I was going to die. I couldn’t breath. We sat and we prayed because we thought this was it.”

For Erica, a Huron resident, her time with the virus was defined by losing her sense of smell and taste, but then, it didn’t come back. Her diagnosis now is parosmia, a distorted sense of smell.

“I first got it (COVID) over Thanksgiving, and I lost my taste and smell,” recalled Woodbury. “I wouldn’t have known I had it except for that.”

“It was a couple months that I didn’t have it (her senses of taste and smell) either,” she recalled. “When it started to come back, it was, like, this doesn’t taste the way it should!”

Erica reported that different people with the parosmia diagnosis have different ways that things smell distorted to them - some smell or taste smoke, with others it’s feces - but for her, it was a chemical smell and taste.

Her medical provider explained that as the brain tries to reconnect neurons after a trauma event, it can incorrectly associate a smell to an item - or to everything. That association can last a matter of months or years.

The average recovery indicated on a National Institute of Health website about parosmia was 2-3 years for those who have previously been diagnosed, but this is an extremely large one-time event for the diagnosis on a worldwide basis.

Denae initially did get better - but not completely - and then she quickly got worse. Denae has been diagnosed with persistent postural-perceptual dizziness (PPPD), meaning her own body’s natural movements cause her to become dizzy.

“The anxiety attacks were still there, but it wasn’t until December that the long-haul symptoms really kicked in,” explained Tordoff. “I had irregular heart beat, my blood pressure would be extremely high and then just drop. A number of tastes still have not come back properly; toothpaste tastes like burned rubber. That taste issue is still there today.”

“Around February, the panic attacks were a regular thing, and my vision began to get ‘wavy’ so I went to the eye doctor,” she continued. “They put prisms in my glasses, and that helped correct the waviness, but I still was dizzy. I spent a week in Mayo and have been doing vestibular rehab to reconnect the eyes to the brain.”

“I lose hair by the handfuls,” Denae explained. “My immune system is compromised, so anything that will cause an inflammatory response will set me back. I have been doing physical therapy for four months, and things are now slowly starting to come back. I still have balance issues. When I have setbacks, though, the balance gets worse. The brain fog has been really bad, so even having a regular conversation - or anything that required me to think - was impossible.”

Both women initially felt very alone in their struggles.

“When I first started vestibular rehab, I couldn’t do two-step commands,” Denae recalled. “They would put numbers and words on the mirror and say ‘put your right hand on 1 and your left hand on blue’ and I couldn’t do it. I would just cry. I know what I’m supposed to do, but this is not working.”

She continued, “I used to cry on a daily basis, because I was worried ‘is this what my life is now?’ I felt so alone because there was nobody else like me. Nobody else talked about it.”

“I always feel like people don’t believe me,” Erica mentioned. “I haven’t heard anyone or anything mention or be familiar with my condition other than the support group.”

“I don’t want to share about it in social settings, because I don’t want people to think I’m crazy,” Woodbury continued. “I sometimes feel like it’s taboo to even say it, but I know there must be more people going through this.”

It’s taken the help and support of family and finding support groups to move forward.

“There are more than 30,000 people in the support group I’m part of,” Erica stated, referring to a Facebook support group for those who have parosmia.

“Talking with my doctor was more for her emotional support,” Erica relayed. “People have suggested many things I could try, like nasal rinses and things, but I really just want someone to talk with about what’s going on.”

“I joined a long-haul Facebook support group, and that was initially good, but I had to step back as it was a lot of negative stories with no one getting better,” Denae said. “When I was diagnosed with PPPD, I joined an online support group for that, and then I’ve been able to connect with members of that group who were diagnosed with PPPD after having COVID.”

What Erica and Denae are experiencing is not uncommon or even terribly rare in COVID-19 survivors.

Dr. John Brooks of the Centers for Disease Control and Prevention (CDC) spoke to the House Energy and Commerce Subcommitte on Health in April. Brooks cited multiple studies regarding the prevalence of post-COVID complications, including, but not limited to, those that Denae and Erica experienced.

The prevalence has been estimated at anywhere from 10% of all those who survive a COVID-19 infection to as significant as 33% of those who survive the infection that have some lingering effect of the virus’s work in their system for more than three months after the two-week “typical” virus course.

To put that number into perspective, the United States has seen more than 33 million people survive infection with COVID-19 after removing the more than 600,000 Americans who have perished due to the virus.

At the low end of the studies Brooks cited, that would be more than 3 million Americans with long-term issues related to their COVID-19 infection. At the high end, that’s over 11 million people living with such issues.

To get more local with the numbers, in Beadle County, infections have totaled 2,967 and the deaths in the county due to the virus stand at 40 through the most recent numbers from the South Dakota Department of Health, leaving more than 2,900 who fall in the category of having “survived” COVID.

With Brooks’ numbers, that would indicate that an estimated 290-975 people in the county may have long-term symptoms.

One of the studies referenced in that April testimony by the CDC was from Johns Hopkins School of Medicine in Maryland. In a January episode of HBO’s “Real Sports” Dr. Emily Brigham of Johns Hopkins was cited regarding long-haul COVID patients.

Dr. Brigham runs a clinic for long-haul patients at Johns Hopkins, and she told “Real Sports” that she has to be honest with patients about the uncertainty of the duration of their symptoms. “We’ve had to tell them that there’s a chance that this may not go away,” said Brigham.

She and her colleagues are studying to learn more about symptoms that have persisted with her patients and what is changing with those who do get better and those who have not, but answers simply are not definite yet, and that can be frustrating for doctors who want solutions.

“When we don’t know what’s going on, it’s very hard to help,” Dr. Brigham lamented.

It’s that uncertainty that both local women are looking at right now.

Denae has found some level of recovery since being vaccinated, though she still is struggling.

“What makes it better is laying down, but grocery stores, aisles, are very difficult,” Tordoff said. “I can breath better and my vision is better after my vaccine, but I still have my PPPD, so I’m still dizzy.”

Erica has been able to find ways to eat, though she’s not cooking yet.

“I don’t cook at home anymore,” Erica stated. “The smell of something cooking in the house, whether it’s on the grill, in the oven, or in the microwave sets me off.”

She continued, “I have found that I can tolerate with taste more now, but I leave while my husband is cooking. Once something is cooled, it tastes better to me than if it’s hot or warm. It’s almost like eating is a chore, where it used to be fun. I wish there was a way to make sure I got nutrition through food. People say to use protein shakes or supplements, but I know it’s best to get nutrition through food.”

Both women say that working full-time with their current status would not be feasible as they are currently recovering, something that is certainly a consideration as both have conditions that would make working in industries that are struggling the most to find workers coming out of the pandemic an issue.

“For me, it’s not just food, it’s someone’s natural body odor, it’s the smell of grass outside, it’s everything that can set it off,” Woodbury commented. “If I worked in a food environment, that would be detrimental. Even when I walk in the grocery store, it’s very difficult.”

Denae has not been able to return to work at Leigh Marie Salon full-time. “I have to limit what I do at work because there’s a lot of repetitive motion, which brings on my symptoms,” she noted. “If I work too much, I don’t have the energy to make supper or to take care of the house. I have to choose between working outside of the home or taking care of the home.”

Social situations are difficult and require planning for both women.

“I can’t go out to eat very much,” Erica lamented. “My husband entertains often for his job, and I have to be selective which environments I join at, and I have found some things I can eat in environments I can handle. I do miss that.”

“I try not to sit in restaurants because the commotion would cause me to have terrible panic attacks. I’d leave, and there my husband and kids would sit,” Denae commented. “If we have things going on, I can’t work that day so I have enough energy to get through family things.”

Though the future is still not clear, value in the small things in life is something that both women have learned.

“There’s a big difference between existing and living,” Denae explained, discussing a recent family vacation to Yellowstone. “Up until about two months ago, I was just existing. I do have to adjust some things, but I am able to begin to live again.”

“I want to be able to enjoy a cup of coffee - things I took for granted before,” Erica considered. “Everything’s going to happen the way God intends, though. God’s got your back.”

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