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The world is surviving the COVID-19 pandemic with government-imposed lockdowns and fluent healthcare management in most countries and we all are hoping to flatten the curve within some months of this strictly regulated containment. During this time, people with underlying health conditions, like heart disease or diabetes, and chronic disorders are more prone to coronavirus infection as compared to healthy individuals. Amyotrophic Lateral Sclerosis or ALS is one of those chronic disorders and there have been several questions regarding how COVID-19 affects ALS patients and caregivers. This article is a compilation of questions that gives a comprehensible idea on how COVID-19 impacts the people with ALS, their families, and their caregivers. If you have further questions, contact us online at [email protected]

How COVID-19 Affects ALS Patients And Caregivers?

Anyone with ALS is at a very high risk of COVID-19 and related complications. ALS patients with any respiratory muscle weakness are at the most risk. Although ALS patients, in general, have a decent immune system, the lack of being able to cough strongly in order to clear secretions that might have a viral load, is a problem. ALS patients should make sure to avoid much contact (this is more important for their caregivers) and in case that have been prescribed a cough assist and/or breath stacking device, it is better to follow the instructions religiously.

What precautions should people with ALS and their caregivers take?

To prevent COVID-19, people should reduce their risk of exposure. Most importantly, the practice of hand-washing and avoiding face-touching will make a big impact in avoiding COVID-19. Staying atleast6 feet, staying indoors, and avoiding a certain size of group is also helpful. We encourage patients and their caregivers to follow local health advice carefully and avoid catching cold or flu. A regular checkup with the doctors will be appreciated.

Many ALS patients have a chronic cough. How will they know when the cough is possibly due to COVID-19?

Although people with ALS generally have a chronic cough, the development of other COVID-19 symptoms such as fever, body aches, shortness of breath, or sore throat, is a point of concern. ALS patients should immediately be tested for COVID-19 infection in such a situation.

Is it safe for relatives and family members to visit ALS patients?

The reason for not suggesting the same is to take a strong step towards flattening the COVID-19 curve by maintaining social distancing. Moreover, we never know who is affected and who’s not, in this dangerous virus affected world at present. As ALS patients are prone to infection, it is better for relatives and family members to avoid visiting in person so that they do not risk the health of the patient. In these times, online calling or video calling is a much better option to stay connected and show one’s care and concern.

What are the tips for caregivers?

Good caregivers are almost irreplaceable and mostly stay 24*7 with ALS patients. They should be extra careful in preventing the risk of COVID-19 exposure. They should seriously practice hand washing every time they touch the patient or are close to them. In addition, they should practice wearing a mask so that any sneezed particles can be prevented from spreading in the air.

Although it is difficult to practice social distancing for a caregiver, they should opt for minimal contact with the patients and only resort to helping the patient when required. Along with these tips, it is very important for a caregiver to not go outdoors frequently for getting groceries and other goods. Instead, they can store supplies and practice staying indoors most of the times to avoid the risk of being a carrier of the virus.

The whole world is going through a very tough time and therefore we need to make tough choices against our goodwill and helping nature. People with ALS and their caregivers or family should be all the more careful regarding preventive measures against the risk of COVID-19 and we all hope that this will pass soon.