Nothing is new under the sun

We’ve seen it before… A brief illness, a seemingly good recovery, then unexpected symptoms that appear later~ sometimes much later. This is the road for those with long COVID, which can be an extension of symptoms after acute illness or unexpectedly appear up to 6 months after apparent recuperation from COVID. In an earlier posting I mentioned the symptoms experienced by patients I worked with in the 1980’s with post-polio syndrome, which surfaces 15 to 40 years post-acute illness. It’s widely recognized that those who have had chicken pox harbor the virus after they recuperate and are susceptible to getting shingles as adults if they have not gotten a shingles vaccine. A recent Nature Medicine review reveals that latent post-acute infection syndromes (PAIS) follow a wide range of illnesses, including Ebola, Dengue, West Nile virus, Epstein-Barr Virus, Giardia, Borrelia and Q fever, among others. Infectious agents may be viruses, bacteria or parasites. While there is often a long and varied list of complex symptoms across many different body systems, many PAIS manifest with functional limitations, exertion intolerance, severe fatigue and unrestful sleep.

So what do you need to know when you encounter aquatic clients who say they have exertion intolerance or fatigue, regardless of the etiology? Before beginning community exercise, your participants need to be medically stable~ body temperature, blood pressure, heart rate, and blood oxygen (SpO2) levels must all be within normal limits. A resting SpO2 level of 90% or better is recommended by the Royal Dutch Society for Physical Therapy before embarking on an exercise program.

For those who identify fatigue or brain fog as an issue, the 10-item DePaul Symptoms Questionnaire for Post-exertional malaise (DSQ-PEM) is a helpful tool. Those with post-exertional malaise (PEM) can track their own SpO2 levels with a splash-proof pool side finger monitor or a smart watch and stop exercise at 85% SpO2 to avoid reaching the tipping point where they “crash” a couple of days later. The Workwell Foundation recommends daily heart rate tracking, and slowing down when an activity results in more than 15 beats per minute of the weekly average. Laminated copies of the linear Borg Scale of Perceived Exertion are a helpful tool to have on hand to estimate heart rate based on perceived exertion while exercising. With this tool, the heart rate is approximately 10x the exertion level. Those with PEM should work at a maximum of the level that correlates with their average weekly heart rate + 15 bpm, but no more than a moderate exertion level on this scale. For a more accurate reading, breaks can be taken for heart rate tracking with digital devices.

It’s not hard to give space for participants to work with post-exertional malaise during Ai Chi sessions. Simply extend the repetitions for soothing or shifting or add a “holding pattern” of the core stance with arms extended to the sides on the water surface, turning palms up and down for the group while participants who need to check their SpO2 or heart rate do so. Being flexible is all a part of Ai Chi. However it turns out is how it was meant to be…

Check out post-exertional malaise resources available through World Physiotherapy: https://world.physio/sites/default/files/2021-06/WPTD2021-InfoSheet3-Fatigue-and-PESE-Final-A4-v1.pdf

What has been will be again,
what has been done will be done again;
there is nothing new under the sun. Ecclesiastes 1:9

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Overcoming COVID stigmas

In 2020 I started looking for ways to make a difference in the midst of a frightening new pandemic. I read books about the Spanish flu of the last century that took the lives of some in my family tree, and learned that the annual flu shots we have available today stave off the evolving ancestors of that flu, saving the lives of many to this day. There have been historic global illnesses in the distant past, but it is good to remember that we have been through a pandemic just a couple of generations ago and we have learned to build tools to deal with it.

I then took an online contact tracer certification course, but soon sadly found that practicing my new skill would be difficult due to surprising responses on opposite ends of the spectrum. One place where I spend time chose not to provide any opportunities for this job which involves sharing news no one wants to hear, and another only offered full time positions, which was more than I felt I could handle.

Then came the realization that COVID did not end after a couple of weeks of illness for some of the survivors. Part of the population experiences a wild roller coaster ride of a broad array of continuous or intermittent symptoms, impacting their daily lives profoundly. This prompted me to explore the mounting research on the ill-defined phenomena that has been called long COVID, post-acute sequelae of SARS CoV-2 (PASC) or post-COVID syndrome, and I realized that Ai Chi could be helpful in addressing some of the more prominent symptoms. *Look for a manuscript I wrote about this in the December 2022 special COVID edition of the Journal of Aquatic Physical Therapy entitled “Ai Chi for Long COVID: Transitioning to a Post-Rehab Community Program.”

I then proposed a session on community Ai Chi for post-rehab COVID long haulers for an aquatic conference in early 2022, however it did not draw enough interest to hold the class. I then collaborated with an aquatic physical therapist knowledgeable in subacute rehab for long COVID and an aquatic expert in PTSD for a COVID Long Haulers Roundtable discussion at a larger aquatic conference later in the year. We were excited that it brought a high number of attendees from the United States and from around the world for the final class of the conference. They listened attentively and gave positive feedback on our presentations, but there was little discussion on behalf of the participants. Why is there such hesitancy around this topic?

I believe it comes down to a social stigma associated with COVID-19. We all want COVID to just go away, which has resulted in some minimizing its presence and others becoming hyper-vigilant, (a difficult task as best practices for dealing with this brand new virus emerged very slowly over time). The diversity of responses to COVID has made even talking about it a taboo for the majority of people who are tired of a world already filled with conflict. One person in our audience shared with me that she did not want to ask any questions or make comments because she did not want to risk upsetting anyone else.

This stigma is so strong that those who contract COVID worry about others judging them. Will people think they were socially irresponsible, without regard for other people’s health? Will they be villainized or ostracized by acquaintances, friends and family? This can lead to feelings of personal shame and a tendency to hide a positive test or illness from others, or to downplay their experience and not seek help when they need it. And because of this, we can only guess at the true prevalence of COVID or long COVID.

So what can we do in the face of these stigmas, as community aquatic exercise providers? Be aware that these stigmas exist. Set an example by being compassionate, non-judgmental and mindful in your communications with all. Use comforting, inclusive language and avoid terms which could be interpreted as marginalizing. One aquatic provider shared that she feared that her classes would shrink if they were marketed for COVID long haulers. While Long COVID is not a contagious disease that would preclude participation with others, her realization of the impact of this stigma is an important one.

COVID long haulers who want to improve breath, attention and focus, energy levels, strength and balance will find their way to Ai Chi classes, along with those with many other conditions who share these goals. Yes, we need to be aware of and support necessary adaptations for the special needs of each of our clients, but marketing and working from a goal oriented approach rather than a diagnostic one preserves personal privacy and offers protection against stigmatization. And if you find yourself in the midst of a discussion about long COVID, acknowledge the feelings your clients express, listen attentively and feel empowered to correct misconceptions with proven scientific data. Sharing Ai Chi is a gift you can give to everyone.

More information on this important topic is available from The World Health Organization (WHO) in their briefing, “Social Stigma associated with COVID-19.”

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Getting our hands around Post-COVID-19 syndrome

Polio was once a looming threat in America, with outbreaks in the early 1950’s causing over 15,000 cases of paralysis each year prior to the introduction of the polio vaccine. The wide-scale vaccination process brought cases down to less than 100 cases in the 1960’s. In the 1970’s there were less than 10 cases, with the last reported case in the United States being in 1979. The most devastating symptom of polio is profound muscle weakness, with up to 10% succumbing to it, due to respiratory muscle involvement. Up to 40% of those who had recovered from polio had an unpleasant surprise 15-40 years after their original onset when they experienced the sudden return of muscle weakness, muscle and mental fatigue and joint pain, now called “Post-polio syndrome.” Thankfully this state is not contagious, nor is it considered life threatening, but it certainly can lead to profound disability. I remember my first post-polio syndrome patients as a young physical therapist in the 1980’s. While there is no true cure for the progression of symptoms, studies showed that non-fatiguing exercise could improve muscle strength and reduce tiredness; the key for us as therapists was to find a delicate balance of not too much exercise, but not too little.

Now here we are in the midst of a coronavirus pandemic, with far more cases than we saw with polio. Over 30 million people have been infected in the USA as of March 2021. Early studies report that 20-27% of those who have technically recovered from even mild cases of COVID-19 continue to show symptoms over 2 months later.

This group has been dubbed “COVID-19 long haulers,” with their presentation being called “long COVID syndrome,” “post-acute sequelae of SARS-CoV-2 infection,” or “Post-COVID-19 syndrome.” Their symptoms include various combinations of fatigue, weakness, low endurance, brain fog, headache, numbness and tingling, distorted sense of smell, altered taste, dizziness, blurred vision, chest pain, cough, shortness of breath, anxiety, variation of heart rate and blood pressure, abdominal pain, nausea, low back and other joint pain. It has become obvious that COVID-19 is a multi-organ disease with nervous system involvement that has a very broad reach. For some these symptoms are a bother; for others they are debilitating.

As the number of “long haulers” begins to increase, health care professionals are at a crucial point to find valid ways to help. Ai Chi is a credible intervention for many of the symptoms that COVID-19 long-haulers experience, as it provides core muscle strengthening, increases joint mobility, improves focus, brings relaxation and reduces stress, enhances breathing, decreases heart rate and blood pressure and relieves back and joint pain. Importantly however, we need evidence-based research showing its effectiveness in Post-COVID-19 syndrome. A good place for practitioners to start is with case studies employing good research practices, including informed consent, controlled parameters and valid test measures. And those who have the resources can undertake larger scale studies with control groups based on the initial findings suggested by case studies. As a reviewer for the APTA’s Journal of Aquatic Physical Therapy, I see this as an important research area today that can have a big impact on the lives of many. I am looking forward to seeing your research!

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