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The past two weeks have been very challenging for the whole world. A virus, a variation so new that none of us has immunity to it, has been infecting substantial fractions of the population and leading to the deaths of many people around the globe. We have learned new words, phrases, and abbreviations such as “COVID-19”, “social distancing”, and “PPE.” And we have put healthcare, facilities, and information technology professionals to the toughest test there is—one that puts their lives and lifestyles at risk to potentially save those of others.
The COVID-19 pandemic has implications well beyond its direct infectious disease effects. In his recent Director’s Message, Dr. Koroshetz spoke to the impact of the pandemic on the biomedical research community—both at and outside NIH—and the safeguards and compensatory measures NINDS and NIH are taking to ensure that the biomedical research community emerges whole from this public health emergency. In doing so, NINDS and NIH will do its share to, if I may use another phrase we have all become familiar with, “flatten the curve” of the incidence of infection. Here, I will speak to the impact of the pandemic on individuals and families living with neurological disease and the organizations that serve and advocate for them.
Practices that Prevent Viral Infection are Most Important for Patients and Families affected by Neurological Disorders
The methods used to ensure social distancing vary a bit state-by-state, but the idea is the same: to keep people from clustering in groups and in close proximity to one another. This will statistically reduce the likelihood of transfer of viruses in droplets from sneezes or coughs or from soiled hands from one person to another. As I’m sure we have heard many times by now, frequent handwashing, keeping hands away from eyes and noses and mouths, and washing frequently surfaces that are touched by hands also help prevent entry of viruses into your body.
Patients with neurological disorders are often among those most vulnerable to COVID-19 and most at risk for its worst effects. Many of these patients are over the age of 60, have difficulty clearing secretions from their airways, or have disorders or take medications that compromise their immune systems. Many of their families serve as their caregivers. It is therefore critically important that people with neurological disorders and their families do everything they can to prevent getting SARS-CoV-2, the virus that causes COVID-19.
Social Distancing is Really Hard for Everyone but Especially Challenging for those with Neurological Disorders
Patients with Parkinson’s disease, Alzheimer’s disease, ALS, MS, or related disorders often depend on special mechanisms or people to allow them to fulfill the most routine of needs. But how do you get medication and groceries, get the laundry done, and eat healthy meals when you are physically or cognitively challenged, and when, due to COVID-19, many service industries have closed their doors, and as few people as possible should be near you? Thankfully here in the United States, groceries and pharmacies have remained open, and most will deliver to homes and can even leave purchased goods on the doorstep to be taken inside without direct contact between the deliverer and those in the home. In addition, many advocacy organizations have resources and hotline lists on their websites
In addition, social distancing has resulted in the closing of schools, after-school and daycare programs, and recreational facilities. These directly affect children more than adults, and disproportionate numbers of children with cognitive, behavioral, and physical disabilities. Here, our nation’s teachers are the real heroes, providing online education, activities, and connectedness through this challenging time. But children with disabilities are often less able to partake of these offerings. They also likely need more help than unaffected children to make use of them. Here are some helpful websites with suggestions and some activities:
- Kennedy-Center.org – Mo-Willems
- Storytime From Space.com
- Classroom Magazines.Scholastic.Com – Learn At Home
- Common Sense – Best Special Education Apps and Websites
What are NIH and NINDS Doing to Ensure that Research Continues on Neurological Disorders?
Dr. Koroshetz’s latest Director’s Message will give you an excellent summary of the measures we are taking here at NINDS. We must ensure that the research upon which patients and families depend will continue after COVID-19 is a thing of the past. This must occur with as much continuity and speed as is safe and wise and consistent with the social distancing public health imperative. Research is very much a social and interactive enterprise, and right now, the kind of necessary, in-person networking would put our researchers and their families and communities in harm’s way. But trust me, researchers are not taking time off! They are meeting virtually, analyzing reams of data, and planning the studies they will do once the pandemic is over. They are maintaining those activities necessary to keep research subjects—both human and animal—and staff safe and to ensure that their participation in studies to date does not go to waste.
COVID-19 is not what any of us would have wished for in 2019 or 2020! But we can all learn and do as much as we can to stay safe and healthy and optimistic. The video I posted above from the Centers for Disease Control (CDC) will help with this.
Be well, everyone!