Nancy Graham Walper

My Long COVID Story By Nancy Graham Walper When the COVID-19 pandemic began in March 2020, I was 69 years old, single, living alone, and had no family nearby. During the first month of the pandemic, my healthy 80-year-old neighbor contracted COVID. Five weeks later, life support was withdrawn, and he died. Watching that happen convinced me that I had to be extremely careful. I chose to stay home, but I also wanted to help others. I became the sole administrator of a Facebook group called SCV Coronavirus Support. At the height of the pandemic, more than 7,000 local members relied on the group for information. Many days I worked 18-hour days answering questions, helping people find COVID testing, and later scheduling vaccine appointments. If local pharmacies had no appointments, I searched farther away so people wouldn’t have to go without. It was exhausting but deeply fulfilling. Ironically, after spending years trying to avoid COVID, I finally caught it during a trip to Las Vegas after the pandemic had largely passed. My illness wasn’t severe. I had a high fever for a couple of days, took Paxlovid, and recovered. I had received every recommended vaccination and booster and had never had any significant reactions. About three months later, everything changed. I began feeling as though I had dementia. I would lose my train of thought in the middle of conversations. I couldn’t retrieve words or remember what I had been talking about. My multitasking ability disappeared, and I was exhausted all the time. My doctor ordered extensive blood work and other testing, but everything came back normal. Ironically, it was my young cleaning lady who first asked, “Do you think you might have Long COVID?” That simple question changed everything. After spending years educating other people about COVID, it had never occurred to me that I might have Long COVID myself. The fact that I couldn’t connect those dots was, in hindsight, one of the first signs that something was seriously wrong. I enrolled in the UCLA Health Long COVID Clinic and waited nearly ten months before being accepted. The doctors performed brain imaging, MRIs, CT scans, blood work, and many other tests. The diagnosis was confirmed: I had Long COVID. Unfortunately, there was very little they could offer as treatment. Like many Long COVID patients, I became part of a group being followed over time so researchers could better understand the condition and, hopefully, discover effective treatments. One medication they recommended was low-dose naltrexone (LDN). While standard-dose naltrexone is used to treat opioid addiction, much lower doses are prescribed off-label for a variety of inflammatory and autoimmune conditions, including Long COVID. I slowly increased my dose to 4.5 mg, as recommended, but noticed no improvement. Working with my physician, I gradually continued increasing the dosage. When I reached about 9 mg, something remarkable happened. My thinking became clearer. I first noticed it while hiring someone to paint the trim on my house. Just weeks earlier, making that kind of decision would have felt overwhelming. Soon afterward, I realized I was able to shop for a new mattress—something that required comparing products and making decisions I previously couldn’t manage. It was mentally exhausting, but I did it. Driving was another milestone. For a long time, I avoided driving long distances because I didn’t trust my ability to concentrate or react quickly enough. After reaching the higher dose of LDN, I felt my attention and multitasking improve enough that I once again felt comfortable driving. I still have what I jokingly call my “Swiss cheese brain.” Sometimes I’ll lose my place in the middle of a story and can’t find my way back. Fortunately, my friends understand. They’ll gently remind me where I left off, and we continue the conversation. Sometimes it even happens with complete strangers. It’s never easy explaining that you have a brain disorder caused by Long COVID, but almost everyone has responded with kindness and patience. Only once has someone reacted poorly. During a game of Rummikub, another player became frustrated that I was taking too long to make my move. When I explained that I had Long COVID and that my brain simply needed more time to process information, she replied that I had always been the smartest person she knew and couldn’t understand why I was suddenly so slow. It was hurtful, and I had to firmly explain that Long COVID had changed how my brain worked. Fortunately, that has been the exception. Nearly everyone else has shown understanding and compassion. Today, at 75 years old, I continue seeing my Long COVID physician and stay informed through research studies and support groups. If new treatments become available, I want to know about them. Although I’m not as active as I once was, I refuse to let Long COVID define my life. I recently returned from my annual week in Las Vegas, where I attend themed costume dances every night from 10 p.m. until 2 a.m. The long days and four-hour drive are more difficult than they used to be, but I’ve gone every year since developing Long COVID because those experiences bring me joy. Long COVID has changed my life. It has taken away some of my energy, my mental sharpness, and many things I once took for granted. But it has not taken away my determination. I refuse to become a victim of Long COVID. I choose to keep living. Thank you, Nancy