Support Services

COVID-19 & ALS: Frequently Asked Questions

Home Health Care, Medical Appointments and Urgent Care

We recognize that as the COVID-19 (coronavirus) pandemic continues to evolve and new cases are diagnosed in the US, concerns surrounding infection and prevention measures continue to grow as well. We continue to consult with physicians at our Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine  to determine recommendations specific to people living with ALS.

Please continue to visit our Coronavirus (COVID-19) Information & Updates page for the most up-to-date information from the Foundation.


I HAVE IN-HOME NURSING (CARE AND/OR INFUSIONS). SHOULD I ALLOW THEM TO ENTER THE HOME? WHAT PRECAUTIONS SHOULD WE TAKE?

CARE: Although our Lois Insolia ALS Clinic recommends limiting non-necessary visitors to your home, some aspects of home healthcare are essential. If possible, limit the number of outside healthcare workers that enter your home. Ensure your home health nurse(s) takes all necessary precautions including hand washing and wearing personal protective equipment (PPE) including properly fitting surgical (paper) masks and gloves. In addition, nurses who are sick, or have had potential exposure to someone infected with COVID-19 should NOT work in your home. If you have any concerns, you may reach out to your home healthcare company to discuss a plan that is safest for you or your loved one.

HOME INFUSIONS: If a person living with ALS receives infusions at home, you may continue to do so, if possible. Take the same precautions as mentioned above, and if you have any concerns about receiving the infusion, please contact your ALS clinic team at our Lois Insolia ALS Clinic by calling 312 695 7950 or using MyChart: Message your Northwestern Physician to ask any non-urgent questions.


MY CAREGIVER CARES FOR OTHER PATIENTS AND/OR HAS OTHER JOBS.  SHOULD I BE CONCERNED?

It is important to have open communication with your caregiver to better understand additional risks you may be exposed to and help limit major disruption to your life. If you are uncomfortable with the potential risks, please call the home health agency for additional guidance. Below are some tips to help mitigate risks:

    • Caregiver washes hands immediately upon coming into the house and regularly throughout your shift.
    • Caregiver to wipe down and clean surface areas, doorknobs, medical equipment and tubing and other bacteria/viral-ridden areas during your shift.
    • Caregiver to monitor use of supplies and prevent waste as much as possible, while also protecting caregiver and family.
    • Caregiver must immediately call if members of their household or other patients they care for have signs and symptoms of a respiratory infection. The caregiver should not report to work.
    • Request that caregiver leave an extra set of clean clothes to change into while working.

SHOULD I QUARANTINE MYSELF FROM HOUSEHOLD MEMBERS WHO WORK OUTSIDE THE HOME?

For adults living with you who are unable to work from home, consider decontamination practices upon returning home: removing clothing worn outside of the home, immediately showering upon arriving at home, practicing hand hygiene, covering their cough, wiping down frequently touched surfaces and staying 6 feet away from you. Minimize contact with at-risk people in the home.


I HAVE (CLINIC, PHYSICAL AND OCCUPATIONAL THERAPY, INFUSION) APPOINTMENTS AT THE HOSPITAL/INFUSION CENTER. SHOULD WE CANCEL OR KEEP GOING?

The CDC recommends cancelling all non-essential appointments. Currently, our Lois Insolia ALS Clinic advises against in-person visits for the safety of our patients. There are  options for virtual care during this time including a phone consult, video visit, or MyChart encounter. If you have a scheduled visit within the coming weeks, our clinic team will be reaching out to explore the appropriate option for your care. You can also send a message to your physician using MyChart to ask any non-urgent questions.

Talk to your ALS clinic team and discuss an alternative plan, such as PT or OT therapy you can do from home. If you have concerns about traveling or going to an infusion site, consult with our ALS clinic team about the safest option for you.


WHAT IF I AM SCHEDULED FOR A FEEDING TUBE PLACEMENT OR AN EXCHANGE?

The ALS clinic team will be reaching out to you to discuss your options since your feeding tube placement may need to be rescheduled. You can also contact the ALS clinic team directly.


WHERE CAN I FIND MORE INFORMATION ON CARE RECOMMENDATIONS FOR ALS RESPIRATORY CARE DURING THIS OUTBREAK?

If you do become ill, do not go to the emergency room or urgent care before speaking with your ALS clinic provider first.

Depending on the situation, they may try to manage the illness remotely. If it is necessary to come to the hospital, they may provide unique instructions for entrance and triage to minimize risk of exposure to COVID-19.  Please visit our webpage for more information on best practices for respiratory issues in ALS.


COVID -19 Homepage

Care. Community. Cure.

We provide individualized care, local community support and hope through
scientific research.