Answering Your ALS Questions with Jessie Meier, MSW, LSW

Each month, a member of the Chapter’s experienced care team answers three questions about ALS and their role in supporting ALS families.

   

You started a podcast with Lenny Rafalko to share ALS stories. What has that experience been like and have you learned anything special from those podcasts that you would like to share?

Roots Radio is a podcast that is completely inspired by our friend Lenny Rafalko, who is living with ALS. He told me early in his diagnosis that he wanted to find a way to give back to the ALS community and get involved in helping others who are going through what he is going through. From his idea, our podcast Roots Radio was born. The purpose of our show is to help others who are living with ALS to feel less alone, by hearing stories of other incredible folks who are living with ALS as well. The inspiration for the title, Roots Radio, draws meaning from the belief that the roots of who we are in this world, are and always will be a part of who we are, especially in the face of ALS. The roots of our experiences in the world, the companionship we seek, the love that we feel, and the reflection of what we have meant to others…these are the roots that will continue to nourish our community despite the ever-changing nature of ALS.

Creating this podcast together has been such a privilege for me in so many ways. It has allowed me to be a part of conversations with folks living with ALS that I might never have had the opportunity to do so. Our conversations are filled with laughter and sometimes tears – but mostly it is all about connection and friendships. New friendships have been born because of our show that we never would have thought could have been a possibility. It never ceases to amaze me – the power of connection between two what may have been strangers – but once our show is over – we all feel like we have gained another friend and support person along this journey. The beauty of our show is also its inclusivity. If there are speech or bulbar issues – we find ways to still have our guests’ voices heard – because everyone has a story to share. Roots Radio can be found for free on Apple podcasts. https://rootsradioals.captivate.fm/

October is National Depression and Health Screening Month. How do social workers help patients and caregivers address issues around depression?

This is such an important topic to talk about for so many reasons. One of the things that I often feel is our duty as social workers, is to help families understand, not just the physical aspects of ALS but sometimes even more importantly the impact that ALS has on our emotional well-being. There is often a stigma associated with depression or anxiety in our culture – that it is a sign of weakness or inability to handle life’s hurdles – but this could not be further from the truth. I often describe it to families using this metaphor – that if ALS is driving the car, depression/anxiety is riding in the passenger seat. The two are so deeply connected and intertwined that it is so crucial that we talk about this with our community. And this applies just as much to the person living with ALS as it does the caregivers in his/her life. Because we know that ALS impacts the whole family – not ever just one person.

If I could plant one seed for our community to consider and think about it, it would be to consider talking to your social worker, clinic team, or neurologist about depression/anxiety. In many cases there are ways to help treat these symptoms that can have an impact on one’s quality of life. It is no one’s fault for feeling depressed or anxious. It is a very normal emotion to feel because of ALS being in your or your loved one’s life. Talking about it to your care team can help lessen the heaviness of feeling alone, open the door for conversation about how ALS is impacting our emotional well-being, and possibly create the space to treat the depression and or anxiety in a way that can help alleviate some of the stress that those feelings can cause. You are not alone for feeling depressed or anxious and it is not your fault for feeling that way. There are ways that we can help.

How has Telehealth changed the way that you and your ALS Treatment Center team provide care and support for ALS families?

The ability to be able to connect with our ALS families through Telehealth has been a game changer for the ALS Community. There are certainly so many perks to being able to physically be in the same room with someone – but we know that sometimes just getting out of the house poses a huge amount of stress on a family. The ability to be able to connect with our families virtually has allowed our bonds with our families to deepen. There are things that people sometimes feel more comfortable sharing or talking about with us, in the comfort of their own home, which I think we could all relate to. There is also such a huge benefit for the ALS Treatment Centers to be able to picture our ALS patients in their own space – that is so helpful for us as a team to be able to help our families in the most holistic way.

If we can find one positive from the COVID era – it most certainly has to be the outcome that we can now see our ALS families virtually. If gives us the option to still see patients even if the weather prevents them from driving into clinic that day, or they had a tough night and getting out the door to drive to clinic is just not an option, or if transportation fell through and someone does not have a way to get to clinic – Telehealth has allowed us to continue our continuity of care for our families.