Recording — In This Together: Life & Caregiving with ALS

We have just a couple of housekeeping items before we get started. This webinar is scheduled to run for 60 minutes. It is being recorded, and the link will be sent to all registrants following the web webinar. As an attendee, you are muted, but we do want to hear from you. So if you have a question, please drop it into the QA box and we’ll get to as many questions as we can. And finally, without further ado, I’d like to kick us off with introductions of our

Very esteemed family of panelists. We have award-winning actor Russell Andrews, his fiance and actor Erica Tazel, Anya Andrews, Kai Andrews, and President CEO of the ALS Network Sheri Strahl. So I’d like to ask each of you to introduce yourselves, starting with Erica and Russell, please.

Russell Andrews
Hi, I am Russell Andrews, fiance of Erica, parent of both Anya and Kai. I am a person living with ALS and I’m actually finding a bit of joy in the journey.

Erica Tazel
My name is Erica Tazel. In addition to what Russell said, I am also partners in crime with Anya and Kai as a caregiver. And they are my bonuses, by the way.

Juliet Taylor
Anya, Kai?

Anya Andrews
I’m firstborn, so I get to go first. My name is Anya. Dad is obviously Russell Andrews. I am an educator and artist and I am very grateful and humbled to be a caregiver in support of my dad and also return for all the caregiving that we have received as we’ve been growing up. So happy to be here and thank you for having me.

Juliet Taylor
Thank you, Anya. Kai?

Kai Andrews
Hi, I’m Kai Andrews, second born to my dad, New York based actor and have been you know, living with everything from a distance. Yeah, so doing the best I can while three thousand miles away.

Juliet Taylor
Thank you, Kai. And last but absolutely not least, Sheri Strahl of ALS Network.

Sheri Strahl
Thank you so much. Yes, president and CEO over here at ALS Network. An absolute privilege to be here with everyone. And this is such an incredible family for us to learn from today. And very quickly, ALS Network is a patient advocacy organization, really focused on being there for families navigating ALS today while doing everything we can to come up with effective treatments and cures and prevention strategies for tomorrow.

Juliet Taylor
Thank you, Sheri. So we’ll get started with our questions and answers. We’re going to start with Russell and your family. It is pretty incredible to see how you all navigate, playing an active role in Russell’s ALS journey, which is really all of yours journey, even from other countries and as you’re traveling around with your own projects. What have you found to be most helpful for navigating the distance?

And what advice or resources would you share for other families that want to be active in their loved ones’ care but face physical distance as a barrier?

So maybe we’ll start with, let’s start with Russell and Erica and Kai and Anya, please chime in.

Russell Andrews
I will start with the word if not the idea of honesty. I was diagnosed at Cedars-Sinai alone surgeon at the moment. At that time whether my son was in New York and Anya and Erica were both in two different places in the same country.

So I had to wait until they were home respect respectively to share the information. I told Erica, of course, first when she got home, but I could not share with my children until I saw them months later in Houston at with my family. I

Could not tell them on the phone. I could not do it via Zoom or any other way because I needed to see them. This was obviously I’m you know preaching to the choir it was going to be rather heavy as heavy for me to say to them as it was for them to receive but

I began with honesty and have to refer back to it because I had to be honest with myself that we were now in a new world and moving forward I would have to be up front. I cannot hide these things from them or I could not shield them from what I was discovering to be the unknown. So moving forward I couldn’t be the protector.

In that way anymore because it I I learned that that would take I won’t say the power, but it would take something from them to not allow them to absorb it and deal with it in the way that they were raised to. They are very very intelligent, very broad young people and I have to trust that

Whatever I would receive from them is what they got from me. So we were gonna take this journey moving forward. And I’ve always had a base here. With Erica and she is walk with me through this. And we’re doing it, you know, as a we’re doing it as a unit. I I wish we were all together at times, but

The the honesty and the trust that we can all get through it. Is where I would start. That is the Alpha and Omega for me.

Erica Tazel
I was in Ghana at the time and I think he was sending me pictures that day of all the tests and things that they were running and I didn’t really think it was something serious. He had had a similar appointment in that regard. So in terms of the distance, it was only four it was less than twenty four hours after that appointment because I returned back to the States the day after. And so for me after we got back home and settled and he gently shared the news with me and as I’ve said before uncharacteristically calm and my immediate response or need was to let him know that he wasn’t gonna walk it alone walk this path alone that I was gonna you know run and just say that I couldn’t deal with it. I wanted to nix that

In the event that that was something that he was anxious about. And yeah, that’s it in terms of the distance. It was just a few hours, well, more than a few hours. That’s a long flight between that appointment and me getting back home.

Juliet Taylor
Thank you, Erica. Kai and Anya, how about you? How how did you experience th that initial news and how do you stay connected with your dad and Erica across the miles?

Kai Andrews
Yeah, I’m happy to start this one off. Yeah, I mean, just as dad said, we Anya and I had both flown into Houston. We were there for a book festival because my dad wrote a book. I’m wearing the hoodie. It’s great. And he sat us down one of the first nights, I don’t remember, and just kind of laid it out flat.

We don’t really like to do a whole lot of fluff. In our this family, we don’t like to over-exaggerate things, you know. So just kind of sit down, talk, lay it out as it is. It I think that was probably the best way that I could have taken it. Just objective and fact, and this is what it is. This is the diagnosis. Here are the

Here’s a letter that we got from Cedars-Sinai. So it was it was a lot to to handle, and obviously I’m still going through it. And being at a distance is certainly something. I’ve been used to having a three-hour difference between New York where I am and LA where they are. So communication is kind of the biggest thing that I need to stick with. It is it’s hard to schedule around. Late nights are usually best, but you know, it’s it’s something that you get used to over time. Especially with the family that you have. You don’t really want to stop talking to them.

Anya Andrews
Thank you.

Juliet Taylor
Anya, do you anything you’d like to share?

Anya Andrews
Yeah, I think I’ll pick up from what Kai’s saying ’cause I really resonate with it. My brother and I both, like we were in New York for mu many years, right? I’ve lived there for eight years. I went to school out there, was teaching out there. And so I think a a big thing is getting creative anyways, with the way that you keep in touch with your family when you have a distance. And our extended family, we all live very far apart. So I think that

There are elements of the way in which we send love and remind each other that we’re there for each other and the way that we show up. I think on a regular basis, being far apart if we’re not in the same state, if we’re not even in the same country, it is really being thoughtful about what that looks like. My dad sends me a lot of like Instagram posts or Facebook posts and we’ll have conversations and those kinds of things. So when it’s hard to make the time, because we all have busy schedules and we’re in different time zones.

We find other ways to really stay connected with each other in this sense. But I think that I’m very feel very fortunate. I just happened to be coming home at the same time that this was all happening. So moving back to LA. And so I have been very grateful for the opportunity to be home and to be figuring out how to be present in the space and also being, you know, being an an adult prefrontal cortex development and all the things, you get to show up also in a different way.

And you get to continue building that relationship with your parents. I think that’s such a great gift. And Erica has been amazing. So to be doing this on the ground side by side, I’m very grateful. And even when I’m not here and Kai’s not here, we have to find creative ways to be present for one another and show up for one another. And I think to be honest, we are still figuring that out. It is still the beginning in many ways of how we support each other through that part.

But we know, you know, we practice, we let each other know and we communicate. And like I said, we get creative. And, you know, that might mean like look, you know, scheduling things around the same time. Like we’re gonna watch this movie, you watch this movie, and then we’re gonna talk about it later, or we’ll just, you know, live tweet and live text and and finding finding joyful ways to stay connected, even across the distance, that I think it transcends

Just diagnosis, but then also expands the possibility of what it means to care for people who are navigating this diagnosis.

Juliet Taylor
Very insightful answers. Thank you all. This next question sort of pulls on that thread a little bit in more detail as it relates to caregiving. You’re all very busy, accomplished people with demanding careers in your own right. Where do you find harmony between living your life and being a caregiver? And for you, Russell, how do you encourage Erica and Anya and Kai to continue with business as usual, life as usual during this time?

You’re on mute, sorry, Russell.

Russell Andrews
Have to say this in regards to encouraging them, that I don’t have to do. They are very attentive to everything. I try not to because I to ask because I’m still very aware of my healthy ego. So I have to

Put things in perspective. There are a few challenges, you know, hands and what have you. But they are there. I don’t ask, but I know in their quiet moments individually they have to be tired. If not indeed in actual emotion.

Of wondering how am I, what am I thinking, what am I feeling? My cough in the other room, am I having trouble eating? All of the things that come with the unspoken care that is that is here that sometimes our beloved caregivers don’t speak of because it becomes by ro their nature, their routine, their

Their governance, if you will, of taking care of us. I don’t really like to think of it as being taken care of, but there are no better words than care because that’s the essence of what they do and what I’m receiving. I have to get out of my own way and kind of stop beating my own self up because it’s needed.

But I’m never without it. I’m never without it. So I can’t speak to how I encourage them because I think it’s more reciprocal that they encourage me. And I’m still working to whatever degree in my chosen career. If anything the encouragement that I can still do it comes from them.

But they are without need of my motivation. I think by grace they are doing what they do as humans and I just happen to be the recipient

Erica Tazel
The only thing I would really add to that in terms of distance, as fate would have it, I have been here every single day since the day after he got his diagnosis. And that I guess if there is a blessing of the combination of COVID and the the triple strikes that our industry had a few years ago that has caused there to be a very rapid decrease in opportunities as work has left California as you know there are a few projects being financed and things like that the gift of that is I have been here every single day since the day after. And so what that has gifted me is to see all the nuanced changes. Some of them I have forgotten about if they’re a cues, if it’s a sound, if it’s a grunt, if it’s silence, you know.

To always one of the things I will do even if if I go into if we’re not in the same room, just to check in and see, or even just ask him. So unlike Anya and Kai, I haven’t had the challenges, certainly emotionally, of distance, not being able to see him every day. We thank goodness for FaceTime and things like that. But I’m sure for them it’s not the same. I’m

Don’t mean to speak for you all. I imagine that it’s not the same being able, you know, to have the tactile touch and to hug and and the things like that. So I hope that answers your question in terms of the distance.

Juliet Taylor
Kai, Anya, you both spoke about communication both in traditional and more creative ways, as ways that you, you know, participate in your dad’s caregiving. And because of that, I I’d love to go in a little bit different direction here because you know, an ALS diagnosis brings a lot of emotions. And I’m curious for both of you, what was the most unexpected emotion that you felt?

So far and how you’ve been processing that.

Kai Andrews
Yeah. I don’t know. I I have in past I’ve had a lot of weird times thinking about emotions in general. As an actor we are constantly bombarded with every single emotion that the human spectrum can give and are just kind of expected to show it.

At a random Tuesday and 9 a.m. So there’s been a lot of surprises when it comes to just random bits of grief that’ll show up in the middle of the day, versus like bits of joy where I’m excited and I’m happy that I get to see and get to talk to my dad, you know. And there was a

There was a statistic that said like there was a like an eighty percent, like eighty percent of the time that you’re gonna spend with your parents is before the age of eighteen. And I think about that a lot. And I think about the fact that I’m not 18 and that I have been so lucky that I’ve been able to get that time and and have that experience and live at home and I can go back. And I have a place where I can stay, of course, and I have family who I can always go back and see. If I ever choose to go back home to LA.

And it’s it’s that kind of surprise. It’s both like a nice warmth, as well as a sadness, as well as grief, and there is going to be so many more emotions. And time will tell what those are. I we aren’t really privy to exactly what all of those are yet, but I’m really happy with how we’re communicating, how we’re running through everything.

Juliet Taylor
Thank you, Kai. Anya, how about you? What what emotions have surprised you the most, and how are you processing those?

Anya Andrews
It’s such a good question, the idea of like being surprised by an emotion, ’cause there’s always emotions, right, involved in it. I think I was expecting when when we first heard about it, I was like, Okay, you know, there’s grief and you know you’re gonna encounter it. And there’s sadness and there’s, you know, it’s my dad, so there’s gonna be joy and there’s gonna be laughter because he always knows how to find it. I think I was

Really surprised by the little bouts of relief. And they came one from having a diagnosis after I think some fears that I had had and my cousin and even maybe Kai and I discussed with like what could be going on with my dad. Because there’s some things that were coming up for years prior to the diagnosis that we were concerned about. But we didn’t know how concerned to be and, you know

We weren’t sure really what was going on. And so there’s like this kind of immediate, like weird feeling of both like, you know, how do you process this and maybe some confusion and some dissonance and then also some relief because there’s like, okay, there’s something to work with. And then there was relief again meeting my dad’s like medical team at Cedars-Sinai, who were incredible, right? Every single one of those doctors and the care and the way that they showed up. And then relief again meeting

Folks from ALS network. And it was all very fast. But I know that we, you know, we had some months before kinda found out. But all of that process, I mean, like actually it’s just there’s like this nervousness and this tension and this fear that like what what do you do? And how do you trust people? And how do you trust systems that maybe you haven’t had a great relationship with before? Like how do you really fall into it fully? And then you meet them and you’re like, okay, this is how because we’re meeting people that are

As human as they can be showing up for you, knowing that you were being as human as you can be in the face of something so difficult. And so there’s been a lot of joy and there’s been a lot of laughter and there’s been a good deal of fear. And there’s definitely been some emotions that have been heavy. And there’s definitely been grief and the grief is slow. But there’s also been relief and there’s also been an immense amount of gratitude.

Which I don’t think is surprising, but it’s so paired with that relief. And it’s so paired with that also that pride in in my dad and how he has decided to take this on and the advocacy work and in my family and how we are showing up for each other and also navigating this, knowing that he leads the way.

Juliet Taylor
I think our audience is going to find a lot of comfort and inspiration from your answer, Anya. That’s beautifully said. Actually would love to turn to Sheri at this point and just if you could sort of guide us a little bit here on you know, this gamut of emotions and what resources are available and you know, what caregivers and family members need to think about in terms of

What the Andrews family is talking about right now.

Sheri Strahl
Yeah, and I I see some of the beautiful comments coming in too from people here watching the webinar live who are witnessing the connection of this really special family. And I think it does, of course, everybody’s journey is unique. And it does speak to the values of vulnerability and trust and communication and self reflection and for other families.

In you know navigating ALS to contemplate some of that as a way to help smooth smooth the journey. Being a caregiver related to ALS is is incredibly challenging. And somebody commented on sort of the the the vigilance of the caregiver in the home and you know attending listening for your loved one leaning into resources

Such as ALS Network or your local patient advocacy organization, I always strongly encourage that because there are so many ways we wrap around our caregivers, helping to fund respite, providing community within support groups and connection groups. You know, we recently lost Brooke Eby, an icon in the ALS world. She founded an online community called ALS Together.

We encourage our caregivers and our people living with ALS to come into ALS Together, which is by and for the community. You know, it’s really interacting with others and saying, hey, this is happening. What does it mean? How have you dealed? How have you dealt with it? What advice do you have? So leaning into the resources that are there. And I know from conversations that sometimes people

Are reticent to be sort of that transparent with what’s happening in the home. But I can tell you that the the providers, your patient advocacy organizations, ALS Network in particular, like we have walked this journey with many and we we are there, we are open, we are listening, and there is absolutely no judgment whatsoever. And then Juliet, if I if I can take one second too, I just don’t want to get through this webinar without sharing

With everyone that one of the gaps, and there are many gaps, and I’m sure we’ll talk about this a little bit later, just in terms of our system and how the the challenges for for caregivers, we found that a lot of our caregivers were having to facilitate transfers, physically transferring their loved one from point A to point B, and that oftentimes the initial demonstration was quick and

And perhaps unclear. So we created some videos in partnership with Your ALS Guide that are on our website, available in real time. You can just click into them. So for any of our caregivers who find themselves having to do a transfer, please know you can lean on those videos that will walk you through that process and help demystify that a little bit. We don’t want anyone getting hurt. We want our caregivers staying whole and healthy.

That includes, you know, lifting and and backs and all of that. So I just wanted to say that out loud.

Juliet Taylor
So glad you did because so many of us that are or have been caregivers are not medical and don’t have that expertise and it can be very scary to you know to be to be faced with needing to know how especially at at the beginning. Thank you, Sheri. That’s actually a really good segue into some of the realities around caregiving and back to Russell and Erica and then the kids Reflecting on your journey so far, what is one thing that you wish people understood about the daily realities of living with ALS and how it impacts all of you on a personal level, on a physical level, on a professional level? You know, what’s what’s it what’s it like?

Russell Andrews
I of course am not sure about everyone else as part of the the session here or anyone else including my family, but it’s hard not to think of the elephant in the room.

Which is mortality.

There is the hope that, you know, I’m in the room when somebody comes in with that bottom or that box or that printout that says, We got it. But there’s also the is that I have to I have to

Set that aside so I can have that anticipation every morning of being happy, of finding some joy in this next twenty four hours. And to not hide my emotions but keep a face that says I’m not afraid. So my day to day

It’s not without thinking, you know, everything I do. If I’m here another ten months or like my neurologist said, it could be ten years, we just don’t know. Whatever the time is, I want to be able to say that I carried it and I walked with my family.

The way I did the day before my diagnosis. And that is I’m finding more difficult than one would think, but it is worth the anticipation when I wake up that today is a day I’ve not seen. Today is a day that

Because I am from a family of people who know what service is. There is a day that I can be about the business of living the word that I was brought up with to be of service to others. And I think we as a family have found among other things we do with is

Quite extensive, but we found a place that we can collectively make an offering to this community and that of the other people on this walk.

Juliet Taylor
Yeah. Thank you, Russell.

Erica Tazel
Yeah.

I think for me, as he just spoke about, I have I have admitted that I am a tough love kind of girl. Personally. Just tell me straight, don’t you know, coddle me, just give it to me straight. And sometimes that is not always useful for everyone. And I recently said, you know, how does one

Reframe terminal illness that involves hope that involves you know a bold fight and how does one encourage that without dismissing t days that that may not be the desire or the energy for and so As I am very new to I feel very new to the care this caregiving journey and that we have been in a way eased into it because there’s still so much that he can do. How what is that gentle encouragement that can be given, but also acknowledges that it just may not be a good day emotionally for him. Whether it’s

He hasn’t gotten up to take that second dose of medication or I haven’t noticed that he’s hasn’t done his resistance training in several weeks, you know. And just the check-ins again, because I don’t know what it feels like to to face my mortality every single day. And so in my love and in my care and my encouragement, I always want to be sensitive to what that may be.

Like every day or several times within a 24 hour period. And so I am learning and adjusting as I observe, as I watch, as I feel, both of us are very empathetic people. What is right for this moment? What is right for this day? Because I certainly don’t want to be any of us, I believe, a source of agitation, but also always a source of comfort and support.

One that is anchored in trust and belief. And so I if I’m being completely transparent, I’m still working with that balance. I think I’m doing I think I’m doing okay. I do self-assess every single day. Like did I say did what was my tone when I said that? Was it with you know, but I’m knowing and I think also he knows that all of it is with love and with encouragement. That we still have work to do and

I I wonder Yeah, we’re gonna go ahead, Sheri.

Sheri Strahl
No, that’s just so beautiful what you said. And it cut out for a moment. And maybe it was just on my side. But I I this is such an important topic that isn’t covered very often. The this existential part of navigating ALS for both the person living with ALS and the caregiver. And just 30 seconds thinking about resources related to that. You know, again, every family finds their way, but we do we it’s easy to talk about the biological medical stuff.

But this goes really deep for families of faith. We always encourage those families to lean into their faith journey and to work with their faith leaders alongside their the rest of their team. And then we have a Beyond Medicine program where we offer things like adaptive yoga that does helps with some of the mind-body connection processing this. There’s a Zoom adaptive yoga class for people living with ALS.

We have access for for people living with ALS and caregivers to a deep meditation app that helps just process some of this for for families. And then we partnered with person living with ALS, Aaron Lazar, on the Impossible Dreams podcast. And there are some episodes of that podcast that specifically lean into some of this emotional and spiritual aspects of an ALS journey. So I just wanted to take this rare moment to.

Say that out loud.

Juliet Taylor
So glad you did, Sheri. And you know, one of the things that’s so important as we all know is, you know, there are gaps in care for caregiving and finding those resources and programs is so important. Is there anything else in particular that you’d like to call out right now?

Sheri Strahl
Well, I think something that comes to mind that that hasn’t come up yet, too, is, you know, we talked about distance and and Erica mentioned, you know, the sort of blessing that she has been able to be there every day. And we have families for whom that is not the case, or there is somebody who’s going into an office all day. And that is really difficult to solve. That’s a difficult problem to solve, particularly.

As ALS progresses. So there’s something too about broad who who is the support network. You know, there there may be non-traditional people who come into somewhat of a caregiving or companion role and starting to plan that early is wise, right? It’s wise. We know that ALS caregiving can eventually

Require 18 hours a day of support. And that is not realistically provided by by one person in a household. So figuring out the plan, troubleshooting some of that, alongside of course, professional professional in-home caregiving support is really important. And there are a lot of gaps around that. And just in the interest of time, should we not circle back to it?

There are policy and advocacy things that need to be done related to access and how our caregivers are supported. So, another way if someone wants to be involved and has the capacity to be involved and wants to be a part of changing the system that demands so much from loved ones to come into these roles as caregivers, I encourage you to register to become an advocate.

You can do that through ALS Network and Caregiving is a policy priority for us at the ALS Network as shared with us by our community.

Juliet Taylor
Thank you so much. That is incredibly helpful. And I, you know, I realize as we’re talking, all these things are so very closely interrelated with, you know, caregiving and the experience of living with ALS as a family. I want to go back to Anya and Kai for just a moment. You know, we had started talking about sort of what’s been the biggest impact on you. And in some ways I think it’s it’s a it’s a very broad big question. But

How are what have those impacts been on you, you know, early in your dad’s diagnosis and how do you take care of yourselves?

Kai Andrews
Yeah. I can go. Cover it. Yeah.

Anya Andrews
I I noticed that this came up in the questi in the chat as well, this question about like how do you balance caregiving with your own well-being? And I will say the biggest advocate for doing that is my dad. Like he’s the person who’s getting on me about my own self-care and the things that I need to be doing to take care of myself. Knowing and and this hasn’t changed pre-diagnosis, post-diagnosis, right?

That your ability to take care of yourself means that you are then able to take care of others with as much grace and as much humility and as much compassion as you can. It’s a lot and it’s a lot of new things. And I think if you I have a tendency of overanticipating, like I want to be able to anticipate the needs and especially knowing like when I’m here, I’m trying to figure out what the best ways to show up are. And if I’m not present like in room or if I’m at work or if I’m on the other side of the country or on the other side of the world.

It can be really difficult to feel like you are showing up well. Like I I often am now re-oriented asking myself, like, is this decision selfish? And I think pivoting away from that and really thinking about how important it is to be grounded and how port important it is to be healthy and clear, those things don’t only make you a better caregiver, they make you a better person.

They allow you to be the best family member that you can be, but they also allow you to respond to things as thoughtfully as you can in the moment. Because it’s not really about overanticipating, it’s about how well can you respond to things when they happen. Right? If you have emergencies happen, how well can you respond to them? And you respond to them best when you’re clear and when you’re steady and when you’re not in a state of anxiety or panic that you’ve

Created for yourself in some ways. Those realities are there. They are true. There are things that we are dealing with that we’ve never dealt with before. But that doesn’t mean that they’re impossible to encounter or to deal with or to move through smoothly. And I think we are at our best when we are calm and when we are also excited about about life, when we are excited about all of the things when we take each day and we value it.

And living more in the present and not that kind of you know, trying to think about what tomorrow’s gonna be and how difficult would this be later down the line. It can be very easy to fall into those patterns, especially if you are encountering or speaking to people who are are in a different position at a different stage in the progression of the disease. But reality is is that if you live as presently as you can, then you can navigate all of those things and you have a wonderful

Friend and advocate we met in DC when we were doing advocacy work. I’m so grateful gave us these happiness journals. And it was about like writing down this this task of like what brought you joy today, like what made you happy today. And even on the days that I miss it, I still know to do that practice. And I think that’s probably the most powerful thing that we can afford ourselves as caregivers and also as people who are navigating the world. And I hope that my dad sees, you know, those things the same way too, which I believe he does. But I I understand also that that’s, you know, I have the privilege of navigating this. And it is a privilege of navigating this more presently with my dad, like in the room, you know. And so I’ll pass it to my brother because I will speak for him about what that experience has been like.

But knowing he is handling it with such grace and such like I’m so proud of him and the way that he is also living so fully and how we are all rallying for him to do that because it feeds us too. And and that is such an important thing as well, to uplift each other and to know we all take on different roles and we’ll be, you know, some of us will be on the front lines and then we’ll take steps back and

We’ll be able to care for ourselves and go forward. And again, the person who is allowing that space and encouraging that space more than anyone that I have met is my dad. But yeah, go ahead, go ahead.

Kai Andrews
Yeah. Thank you. Yeah, I mean

Being at a distance is always gonna be a hard thing. I moved out here for college. And I’ve kind of gotten used to the being at a distance from people in general. My you know, my grandmother in like part of my family lives in Puerto Rico. My mother lives in Italy right now. I have

Friends across the country, it’s it’s a whole thing. And so I’ve gotten used to making phone calls the main way of communicating. And when I see my dad and when I talk to my dad, I it’s I don’t think of disease first, whether that’s just me out of

Personality or t maybe like a twinge of ignorance maybe or just I I it’s just a thing of that I don’t think about that first. Usually I’ll call my dad because I need a reader for a self tape that I have to record in an audition, you know? Yeah, it’s That’s the best way that I can describe of you know, staying connected and staying within the moment and just living in the moment. You take every day as if it is your only day, no matter who’s around you, no matter what’s happening. You know, all the world’s a stage and all the men, women just players.

Juliet Taylor
Thank you.

You know, as we’ve been talking, all of you have come back to this concept of joy, which might surprise someone who isn’t familiar with the ALS community. And I I’d love to I mean clearly it’s a theme in your lives. I’m sure it predates ALS, this concept of living with joy. Can you can any of you talk about how that’s given you sort of a lift and positivity and this and how you how you live with joy in small ways and in big ways while you’re living with ALS in your family.

Kai Andrews
Dad’s a funny person. Yeah, my dad’s my dad’s a funny guy. Yeah, and it’s a it’s a thing of like being happy is fun. Doing comedy is fun and and having fun is fun. And I’m I’m doing my best to not let that get in the way of anything. Just again, like you live every day as if it’s your last. And when you’re off of work, if you’re working five days a week, one of those days you want to do something that’s fun, you know, you want to watch a fun movie or a funny show or something. That it it it’s part of human nature to have joy, to have an expression of love and excitement.

And I don’t think that that should end based off of a diagnosis of anything.

Juliet Taylor
Beautifully said. And I see Anya nodding as well. Sheri says

Russell Andrews
So I really I think

No.

I like to be careful, though confident when I speak of the joy that I have found, because the walk is going to be very long and at the stage that we are

I have met people who are f further along of course.

And it’s not to say that they can’t find joy in their day to day, but I don’t want to be so cavalier as to think that what I feel can easily be felt in every household. But I don’t want to not lift the idea

Of the joy that we are finding in the service that is a refrain for me as I go through this day to day. I was fortunate enough, Juliet, to be in Africa, in Ghana this past summer with Anya. I was fortunate and I say that in joyful quotes to see the highest of the high in that country, Accra, Kumasi, Cape Coast.

But also the lowest of the low. And in those moments I didn’t think about what my diagnosis was. I didn’t think about anything other than there are seven point two billion people on the planet.

Why not me?

But not why not me as a as a place of looking at it being the end, but something I’ve taught my children which is something I learned many years ago is it’s not what happens to you that matters. It’s what are you going to do about it? And I’ve chosen to

Lean heavily into that that brings me joy and that is service. I’ve done it all my life. My children only know that from as far back as they can remember with our volunteering, our giving their moments. I’ve seen my daughter on the soccer field and

I never forget this. A little girl was her stomach was upset and she was regurgitating on the field and in the middle of the game Anya goes over and she holds the little girl’s hair so she can finish losing her lunch as it were. Without thought, without any reservation.

Because that’s what she knows. I’d like to think if she was a child of some other fortunate man, she would do the same thing. I just think that’s her gift in life. And those are the things that I find joy in in those memories. And in that whatever the distance, if you will, of this walk for me.

That it won’t be over if if that makes sense because beyond the cliche of picking up the mantle that is rooted in them, I got it from my parents who obviously got it from theirs. And I am I am very very happy

That I’m able to find it even in these trying times. I’m still able to find it. And it is not an exaggerated place in my spirit. It’s it’s where I I live. And I I plan to do it as long as I can.

Juliet Taylor
I wish we had six more hours today to talk. You are such an extraordinary family. I think I can speak for all of our audience members. This has been so eye-opening and so uplifting and encouraging. The connection that all of you clearly have with each other.

The closeness that your family has, the way you’re approaching this together and individually is something that we all can learn from, not just as it relates to ALS, but anything that might that our families might encounter. And I am really grateful to have had the chance to connect with you today. And I know our audience feels the same. Sheri, thank you so much for

Everything that ALS Network is doing to support people living with ALS and their families, as someone who has used your services in the past, I can attest to how incredibly valuable it is and how important it is to have resources outside of the family who have been through this before and walked this road before. So like I said, I wish we had a lot more time, but I want to thank

Each and every one of you for your honesty, your sense of humor, your compassion in sharing part of your journey with all of us. And I just purely selfishly, I want to know about Russell and Erica, your projects where we can catch you on the big or small screen or stage so that we can keep an eye on what you guys are doing. So would you share with us?

This was not scripted, but I’m just I would like to

Russell Andrews
I I’ll start because my glass is half full. Yeah, I have a couple of projects that I’ve done. I had an appearance on Paradise and Criminal Minds that I was fortunate that the writers blessed them because they knew my diagnosis rewrote the character to have

ALS, so that is a through line in the part that I played in that. And I’m very active in the theater community here and there are things and works, but that’s my spiel. But over here, over here is something that’s broke this morning or at least was released this morning. And I will stay away from that.

And give her that moment.

Erica Tazel
Well, if there are any boxing fans, specifically of Muhammad Ali, there is a prime video series that I worked on last year called The Greatest that is now available. There eight episodes and I play Geraldine Liston, the wife of Sonny Liston, who was one of Muhammad Ali’s big nemeses. I’m introduced in episode three and I got to play in five of the eight episodes. So

I think we’re gonna dive into that finally when we leave you all today. So that’s what I have. I actually had an answer this time. But while we’re here, I also wanna just share that with the caregivers on the call today with us. Thank you first of all for being here. I read this a couple of weeks ago. And it really resonated with me. And it’s from a woman named Tia Walker. And she says that caregiving often calls us to lean into a love we didn’t know possible. And I know that that is very, very, very, very true for me. I didn’t think I could love this person more. And every day as it grows, I’m I I should stop being surprised at this point. But that resonates with me. And I just want to leave you also with this quote by Les Brown.

That really has been a blessing to me. It says, he says, regardless of what challenge you’re facing right now, know that it has it has not come to stay. It has come to pass. During these times, do what you can with what you have and ask for help if needed. Most importantly, never surrender. Put things in perspective. Take care of yourself. Find ways to replenish your energy, strengthen your faith, and fortify yourself.

From the inside out.

Have not met many of you, but I just want you to know that if you if you’re you’re on this because you’re walking this path, and I just want to say that I love you and I see you. And even though we have not met, your stories already inspire me by your presence here on this on the webinar with us. We don’t know each other, but we know each other, if that makes any sense. And so thank you. And thank you too.

Everyone who organized this and gave us this opportunity to share a little bit today. Thank you so much.

Juliet Taylor
Thank you. Thank you all. That was beautiful, Erica, and leaves us with a lot of food for thought. So this concludes our webinar. Thank you everyone for joining. We appreciate you and your time and look forward to staying in touch.