People with neuromuscular disorders such as muscular dystrophy are not at a higher risk of acquiring COVID-19, but they do face greater challenges should they become infected. Creating tailored plans to manage risk and adhering to them is especially important.
This is the broad take-home message of a live Facebook Q&A held by the Muscular Dystrophy Association (MDA) on June 15. Marydeth Guerin, MDA director of Care and Clinical Services, hosted the event, which featured John W. Day, MD, PhD, a professor of neurology and pediatrics at Stanford University Medical Center.
With much of the U.S. lifting quarantine restrictions, many people living with muscular dystrophy and other neuromuscular disorders are keen to understand how to navigate this time safely.
“I think that the MDA and the MDA community has already shown its creativity and resourcefulness in dealing with this pandemic,” said Day, who directs Stanford’s MDA Care Center and is a medical consultant for the association. “With diligence and perseverance, I’m confident that we can make it through together. And after making it through, I think we’re going to be even stronger because of what we’re learning.”
Yet, Day hardly expects this to be an easy process, as the burden of maintaining health shifts to the individual and their family. “You can’t count on everyone else to do it,” he said.
A neuromuscular disorder does not raise a person’s risk of contracting the new coronavirus, so much as increase the risk of the disease taking a more severe course, he said. Pneumonia, for instance, is a common complication of COVID-19 and can be much more challenging for those with neuromuscular conditions that affect the muscles involved in breathing.
To avoid COVID-19, Day advised following carefully the recommendations given to the general population. They include maintaining social distancing, wearing masks when outside the house, washing one’s hands frequently and especially before touching the face, and using hand sanitizer when soap and water is not available.
“I think it’s very important to realize that these [recommendations] really do work,” he said.
The precautions that help to keep COVID-19 at bay can complicate healthy activities like exercising, as well as patient-caregiver relations and traveling, particularly by airplane.
Exercise is a critical component of neuromuscular disease management. And wearing masks and maintain social distancing are relevant obstacles.
People with muscular dystrophy and like disorders may already have a poorer “breathing efficiency,” and wearing a mask can increase the work of breathing, Day said. A balance needs to be established between outdoor activities and safety, like perhaps staying out for less time. Choices are personal, and should be discussed with healthcare providers, he added.
Good preventive practices are also difficult to maintain in a gym setting. Even a swimming pool, with everyone in their own lane, is a risky environment given the close proximity to others and the need to breathe heavily. Activities like this greatly expand the space needed for meaningful social distancing.
With the pandemic came a greater appreciation of telemedicine, with consultations expanding to physical and occupational therapists. Therapy sessions can be done via video, providing patients with exercises that safely help maintain overall function during this trying time.
Much like a gym, an airplane is an environment with limited social distancing. Day said that certain measures can at least reduce risk, should someone have no choice but to fly. Surgical grade N95 masks are considerably more effective than others at limiting the spread of viral particles. But the U.S. Food and Drug Administration advises people with a chronic health condition to check with a doctor before using one, as “the N95 respirator can make it more difficult for the wearer to breathe.”
Using antiseptic wipes on surfaces around you — your seat, dropdown table, etc. — provides another measure of protection. When possible, maintaining an empty seat between yourself and other passengers can also help.
People who require a non-invasive ventilator and must fly should bring their ventilator with them, although such devices do not provide any extra protection in flight, Day added.
Caregivers play a huge role in the lives of people with neuromuscular disorders, especially when many have a heightened need to self-isolate. The health of a caregiver, then, becomes more influential than ever to the health of those in their care.
As with patients, the use of masks and frequent hand washing can be significant. If a caregiver has had symptoms of a respiratory infection, however, or if they know that they have come in contact with someone who has COVID-19, Day said the caregiver should not go into a client’s home or, if necessary, at least wear a mask.
The flip side is what to do if a patient has COVID-19. “I think it’s all too easy to just cover our heads and not want to deal with that,” Day said.
All families showed have a plan for what to do in such event. The plan should be discussed with the patient’s care team and adhered to if needed.
Frequent virus and antibody testing can provide another layer of assurance for caregivers. These tests can, however, come with caveats. It remains unclear, for instance, whether antibodies actually protect a person from getting and carrying the virus.
Day also addressed concerns over the risk of COVID-19 in children. “We’re still learning a lot about the virus,” he said. “Fortunately, one of the things we can say is that children have consistently shown less severe responses than adults.”
Many schools may be opening next year, with plan to take precautions to minimize students’ exposure. These include staggering daily attendance and mandating masks, hand cleaning, and social distancing. Despite such measures, Day said that “we’re just going to have to come up with better answers as we go along.”
A final concern voiced by attendees was the affect that the pandemic has had on clinical trials for muscular dystrophy therapies. Although such studies have been slowed by the outbreak, he said that new trials have begun and existing studies involving essential treatments are continuing.
“I think [the pandemic is] forcing us to adapt and to get more creative and we’re coming up with new trials that will allow us to go forward,” Day said.
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