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Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Melissa Enfinger:
One of the things that's really exciting is that we really have an opportunity to grow it well beyond Alabama but throughout the entire United States, so this referral network is really open to any mental health professional within United States.
Jeremy Holden:
Hello, everyone. And welcome to Connecting ALS. I am your host Jeremy Holden. August is National Wellness Month, an opportunity to reflect on self-care and to identify ways to manage stress and cultivate healthy routines. Wellness means more than simply the absence of illness. According to the National Wellness Institute, wellness is a conscious, self-directed and evolving process of achieving one's full potential that encompasses lifestyle, mental and spiritual wellbeing and the environment.
The journey to wellness is unique to each person. It starts with self-awareness, understanding our strengths, weaknesses and what areas of wellness need more attention. Practicing wellness and self-care is key to improving your ability to live a longer, healthier life. Making a concerted effort to keep your mind healthy is just as important as keeping your body healthy, particularly for people living with ALS and their caregivers. Be sure to check out the link in the show notes to learn more about a pilot study on mindfulness and self-compassion for people with ALS called Compassion pALS which was inspired by the mindful self-compassion. Learning to apply the concepts of mindfulness to daily life can be helpful in finding a path to living in the moment. To understand the role that wellness plays in making ALS livable, we turned this week to Melissa Enfinger, a Care Services Director for the ALS Association based in Alabama. Melissa, thank you so much for being with us this week on Connecting ALS.
Melissa Enfinger:
Thanks for having me, Jeremy.
Jeremy Holden:
I couldn't think of a better person to have on to talk about this supremely important topic and that being of wellness. I have an intuitive sense of wellness means, and if forced to define it, I would say it's the state of being well, but what do we really mean when we talk about wellness?
Melissa Enfinger:
Jeremy, I think that you'll find that there are different ways to frame and discuss wellness depending on who you ask. But when I consider wellness, I really think of it beyond just a state of wellness. And actually if you go to the Global Wellness Coalition, they really define it as the active pursuit of activities, choices and lifestyles that lead to a state of holistic health. And I think what's really important is they really give two important aspects of that definition.
And the first is that wellness is not a passive or static stage, but it's an active pursuit. A lot of times in Care Services we talk about the importance of being proactive in your treatment and care. So that's how I really think of wellness is that you are proactively making choices, setting intentions that are helping you work towards an optimal state of your health and being, and that is in whatever circumstance or stage that you're in at that point. And the second is that it's holistic. So we have self-responsibility for our own choices, behaviors and lifestyle, and those are, of course, influenced by a lot of external factors, but we're making positive, intentional choices about what our wellness looks like.
Jeremy Holden:
I want to come back to that individualistic component that you were referencing there toward the end, but thinking about our audience, whether it's the audience listening to this program or the audience that we serve, or the audience that the ALS Association serves, how does wellness fit into the work of making ALS livable?
Melissa Enfinger:
Jeremy, when I think about it, I really think about our five major strategic priorities at the ALS Association, and one of the [inaudible 00:04:16] is empowering people with ALS to engage with the world in the way they want to. So wellness really speaks to that, "What are my individual goals and what is going to influence me and living the life that I want to live?" And then the other piece of that is our strategic priority to reduce physical, emotional and financial burden for people living with ALS. And physical, emotional and financial are often seen as major components of wellness overall. So if you are helping reduce those harms and burdens, you are effectively supporting a person's wellness.
Jeremy Holden:
You've talked a couple of times about that word individual, and I guess, I want to think about that individual component of this from maybe healthcare provider's perspective is, how do you empower somebody to define wellness on their own terms, but also trying to get towards something of a universal understanding of wellness? How do you balance those two? What is the extent of the individual defining wellness on their own terms versus, "We have some best practices in some ways that we collectively think of wellness?"
Melissa Enfinger:
That's a pretty loaded question to be honest, but I think it's really important that we always come back to person-centered care. And when you look at person-centered care, you can have some domains that you're looking at, but you allow that person to say, of these domains, "These are the things that I really want to focus on. These are the things that are really important to me." So you can look at a ton of different, what we would call wellness models. In my own self-care practice, I consider wellness and the goals that I use for my personal self-care practice, five pillars of health. So there's mental, physical, social, emotional and spiritual, but I've certainly seen models that include a minimum of six or 12 and add in elements such as financial and environmental wellness. And I think all of those things are important. We can talk about them.
I have worked with many people affected by ALS who say they like to really focus in and not get overwhelmed with lots of different categories. I had one gentleman who was telling me, "Okay, you're telling me that I need to conserve energy and focus on what's really important, but then if I listen to every single provider in my world, there is a to-do list of a hundred things that I need to get done in a day. So how can I do both of those things?" Talking back to balance, and that's a really fair question. If there are 20 things that would be really good for you to be able to do today to optimize your health, once we talk through all of it, it's still ultimately going to be up to you about which of those things that you give your intention and care and energy to. And those things are very much personal and really factor into you engaging in the world the way that you want.
Jeremy Holden:
It was a loaded question, but this is why we have you on because you defanged it and got right to the meat of what I was trying to ask. We recently had Brooke Eby on this show and talking about social media influencer living with ALS, and she's using her platform talking about using her sense of humor and what she thinks of as her inherent ability to make jokes, crack jokes and disarm people with humor. And earlier this year we talked to a team of researchers who are working to make video games optimized for people living with ALS. And I guess, my question is to what extent, you touched on this a little bit in your last response, but to what extent is pursuit of things that bring us joy, to what extent does that factor into say my definition of wellness, an individual's definition of wellness?
Melissa Enfinger:
Oh, I think it's essential because a lot of times people think of wellness in a healthcare kind of component as like, "Am I physically well?" But to me, I think of your physical health as being the form that allows the function of full wellness pursuits and activities. Those personal things that you enjoy are the things that add value and life to your life, and that's very different for everybody. And I've seen people do all kinds of things to adjust their environment and their life in a way that allows them to continue to do those things that bring them joy and wellness, so I think the video games is a really great example. I live in Alabama, so there's a lot of our state that's very rural and nature-based. For example, I worked with a gentleman who very much enjoyed nature and his farm, and being able to interact with animals and see things on the farm.
He wasn't interested in TV or video games at all. So one of the things that they did as he continued to progress is that he took out one of the walls in their bedroom and turned it into a picture window, and then set up what I would call almost an animal sanctuary at the front. So he had bird feeders and squirrel feeders and different types of plants that were seasonally blooming so that he could still really enjoy nature anytime that he was sitting in his bed or in his chair from the room if he couldn't get out onto the farm that day, and that was an important part of his wellness, very much person centered. And I've seen people do it with all kinds of things. Some of those things take a considerable more amount of effort than others.
Jeremy Holden:
Sure.
Melissa Enfinger:
Where you might have a need for more assisted technology or other supports, and that's really where your support in your healthcare team come in to say, "All right, if this is the thing that's important to you and this is how you experience joy and feel yourself, then how can we, given your current circumstances, help you best experience those things?"
Jeremy Holden:
What resources are available for people listening who may want to think about ways to enhance their wellness?
Melissa Enfinger:
I'm sure that will vary depending on where your audience is, but certainly assistive technology, durable medical equipment, all of those things are going to factor in hugely. There's also rehab engineers and specialists that are available pretty much anywhere through a various referral system. So I would reach out to your healthcare team, your care services coordinator and say, "Hey, this is the thing that I want to think through, and who can you connect me with that might be able to help me?" And I do have to give a shout-out to the ingenuity that people show all of the time continues to astound me. I worked with the gentleman who was the creator of the power beach wheelchair because he and his wife moved down, built their dream house in Orange Beach, Alabama, and then he was diagnosed with ALS.
His thought was, "All right, I'm not going to have this amazing beach house and not be able to enjoy it." So he pulled together his own team of people and they had many iterations to where they got to this amazing power beach chair that they then turned into a business and ran out to people when they visit the beach. It's just amazing to me that when people have a wellness goal and they have the right supports and the right motivation, how they can do things that really not only add value and joy to their life, but affect the overall community.
Jeremy Holden:
That's a great story. And as a lover of all things beach and coast, that really touches me quite deeply. It strikes me, Melissa, that wellness has a tangible connection maybe to mental health. And I wanted to ask about the mental health referral network and the role that it can play in wellness but in just overall health.
Melissa Enfinger:
Yeah, absolutely. And there's certainly been more of a focus on mental health overall, I believe. But back in 2001, the ALS Association here in Alabama was fortunate to receive some funding from MT Pharma America to start the building of our ALS Mental Health Referral Network, and we are continuing that goal and there's really three major components of that. One of them is education. So we partnered with Mental Health America, the Montgomery Chapter to provide some continuing education content for mental health professionals that are interested in supporting people affected by ALS with their mental and emotional wellness. We also have some resources and materials that we like to share and connect people with that have been created and are internally available from the ALS Association and then building that referral network.
Some of the feedback that we receive not only from people living with ALS but from caregivers, family members, is that when they are seeking a therapist or a mental health professional, they want to know who it is that might already be familiar with some of the individual's struggles that come along with an ALS diagnosis because otherwise the burden can very much be on the person affected by ALS to then do the explaining and education with that therapist. So that puts more of the burden on them. So one of the things that we're doing right now, and maybe you can put the link in the show notes-
Jeremy Holden:
Absolutely.
Melissa Enfinger:
... is that we are working on a survey through the University of Minnesota and Dr. Malda [inaudible 00:14:48] is supporting us this to survey mental health professionals that are interested in supporting mental health for people affected by ALS. And we want to know from them what kind of training services and supports do you need to where you feel most competent and able to support people living with ALS and their mental health care needs. We're excited to see what that survey turns out and then certainly continue to build content and education around the resource.
Jeremy Holden:
We will definitely share a link in the show notes to that resource. Thank you for bringing that up. And it strikes me, this referral network has been around for some time and it's interesting to see the growth and the development of that model overlapping with a time in the last 20 or so years where there's increasing acceptance that mental health is health. Certainly a lot of work still to do on that front, but we've come a long way since the referral network first came into being.
Melissa Enfinger:
We have but we have so much further to go. And one of the things that's really exciting is that we really have an opportunity to grow it well beyond Alabama, but throughout the entire United States. So this referral network is really open to any mental health professional within the United States. So we would encourage any of them to please not only take this survey, but then to get on our mailing list so that when there's trainings, again, it's with Mental Health America, so it is nationally based and you're going to be able to get your continuing education credits no matter which state you're licensed in.
Jeremy Holden:
It's a great program. Really great work. I'm Melissa, thanks for being with us and hopefully we can have you back on Connecting ALS.
Melissa Enfinger:
I had love to, Jeremy. Thanks again for having me.
Jeremy Holden:
I want to thank our guests this week, Melissa Enfinger. If you like this episode, share it with a friend. And while you're at it, please rate and review Connecting ALS wherever you listen to podcasts, it's a great way for us to connect with more listeners. Our production partner for this series is CitizenRacecar, post-production by Alex Brouwer, production management by Gabriela Montequin, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.