How to Manage ALS During the COVID-19 Pandemic
Many people with amyotrophic lateral sclerosis (ALS) and their caregivers wonder how to stay safe during the COVID-19 pandemic. Our expert weighs in.
Q: Are people with ALS at a higher risk of COVID-19 infection?
There is currently no evidence to suggest that people with ALS are at a higher risk of COVID-19 infection. However, if they do become infected, they are very likely at a higher risk of complications or more severe outcomes.
Q: What can I do to help reduce my risk of COVID-19 infection?
Like the general population, people with ALS and their caregivers are encouraged to follow strict CDC precautions, including staying six feet away from people who are not in your household, washing hands regularly, and disinfecting of all surfaces, including phone, joystick, and wheelchair armrests. It is also recommended that you keep 30 days of medical supplies—including tube-feeding items, medications, and nutritional supplements—on hand, and use telemedicine whenever possible and available.
Q: What precautions should my care attendant take to reduce my COVID-19 exposure?
Discuss with your home care agency how its health aides are screened and what, if any, back up is available for sick workers. Prepare a back-up plan if your attendant does not come to work or is sick. In addition, ask all attendants to follow strict CDC-recommended handwashing and other applicable guidelines when they arrive and before they provide any care.
Q: Can I continue my current medications for ALS during the COVID-19 pandemic?
You should continue current treatment and not stop existing medications unless you and your doctor have discussed it and he or she approves. Evidence suggests it is safe to continue using riluzole (Rilutek) and edaravone (Radicava, Radicut) with no increased risk of COVID-19 infection. If you have recently started riluzole (within the last three months) and anticipate difficulties getting routine blood tests (as recommended monthly for the first three months on this medication), talk to your doctor about taking alternative medications or waiting to start the medication at a later time.
Q: What should I do if I if I feel sick or suspect COVID-19 infection?
If you suspect you may be infected with COVID-19, call your doctor right away and follow his or her advice regarding testing and appropriate medical care. Unless you are gravely ill or your doctor advises, do not go to the emergency department.
Q: What safety precautions should I take while using my ventilation devices?
Non-invasive ventilation (NIV) devices, like BiPAP or Cough Assist, are designed to blow out air from your lungs. If you have been infected with COVID-19, NIV devices will emit viral particles in the same way that coughing does, which may increase the risk of COVID-19 transmission to family or caregivers entering your room. In this case, caregivers should take additional precautions to protect themselves. All ventilation equipment should be disinfected regularly, and filters should be replaced as per your device manual. Make sure you have an adequate supply of filters and tubing on hand at all times. Talk to your respiratory therapist or doctor about additional precautions you and your family should take.
Source: Coronavirus Information from the Motor Neurone Disease Association
Read More:
COVID-19 (Coronavirus) and Neurologic Disease Resource Center
