Flexibility is always a virtue when serving people with ALS. No two situations are ever the same, and no two people with ALS need exactly the same things to fight the disease. So those who care for people with ALS go into every meeting with a family facing ALS knowing there isn’t a one-size-fits-all solution they’ll be able to provide. And every doctor or nurse who treats a patient with ALS knows finding the right way to meet the needs of an individual patient requires flexibility.
So when the COVID-19 pandemic began impacting the nation and our community, our Care Service team and the staff at the ALS Clinics we support did what they are used to doing: they assessed the situation, they remained flexible, and they found the best solutions possible.
For the safety of everyone involved, in-person visits were suspended in March and replaced by video chats, text messages, and even good old fashion phone calls. And shortly thereafter all the ALS clinics in the area migrated so some form of virtual or telehealth services for their patients. Even for the staff of the ALS Association St. Louis Regional Chapter, what was once in-person has become virtual—staff meetings that were previously held around a conference table are now held via laptop and video conferencing software. To be sure, it has been an adjustment for everyone.
Associate Director of Care Services Melissa Smith says that while conducting visits with people with ALS and their families entirely remotely has taken some getting used to for everyone involved, the needs of those we serve can still be met. And now more than ever, communication is key, as well as that flexibility.
Some of that flexibility has been required when a trained set of eyes is needed. “It has been a little bit of a challenge but we have made it through being able to see the patients home to recommend a specific piece of equipment,” says Care Service Coordinator Lori Dobbs. “I just had a patient in Illinois I was working with and was able to look at their house virtually and then get a ramp and some other equipment delivered.”
While it is difficult to say there have been many silver linings within this pandemic, the opportunity to spend time with family has been a comfort to many. Care Service Coordinator Mary Love found that one of the families she has begun working with has put that time to good use. The husband was diagnosed with ALS just prior to things shutting down due to COVID-19.
“(They) have four children, three of which were away at school at the time. Their youngest will start his senior year of high school in the fall,” says Love. “We had our initial home visit via Facetime, and in discussing things being shut down due to COVID-19, (his wife) pointed out that being forced to stay home allowed them to process (his) diagnosis without outside influence and concern, just as a family. She felt this helped them communicate more than they may have if they’d have had to deal with this while things were ‘normal.’”
Still, things are not normal, and that is causing stress for many. Dobbs says she has heard from people with ALS and their families that they miss the “hands on” aspect of being able to see their doctors in person. Care givers too are feeling the stress of staying at home, with it being difficult for anyone to “get out” for time to rest and recharge. There are have also been situations where a person with ALS needed to be admitted to a hospital for non-ALS related reasons and limitations on having care givers present created difficulties in communicating the needs of the person with ALS to the hospital staff.
Even while we all try and plan for what the next months will look like, some of the changes put in place for these extraordinary times will likely last beyond the current situation. Our chapter has begun piloting virtual support group meetings, and it is likely the flexibility and ease of access these meetings provide will find a place as part of our care services even after the current situation passes.
As we bring an end to an ALS Awareness Month like no other, we are all reminded that we all must be willing and able to find different ways to make a difference for people with ALS in our community. ALS does not stop, and neither do we.