Episode 3: How to Feel Prepared and Supported With the Flying Solo Support Group

Eugenia: One of the things I learned is that we are not the disease. Friends and family have to understand that we are still who we are.

~

Oscar: Eugenia Aguirre faced a choice when she was diagnosed with corticobasal degeneration. Overwhelmed by the rapid lifestyle changes that accompanied her CBD diagnosis, Eugenia says that she made the choice to be happy and to fight as hard as she could. Living on her own, managing the disease became a lonely and daunting journey, with numerous decisions that needed to be made as symptoms progressed. In 2023 she connected with Flying Solo, a CurePSP support group for people diagnosed with PSB, CBD and MSA that are living alone, and met a community of similarly independent individuals within a space where they could share the realities of their situations: the fear, the unknown, as well as the moments of strength. Each day brings a new challenge, and the support group taught Eugenia how to embrace the chaos and live in the moment. By leaning on each other for advice and emotional support, Flying solo members are living the way that they want to and learning how to be prepared for whatever these diseases might throw at them. I spoke with Eugenia and the two support group leaders, Adriana Gonzalez and Diane Breslow, to find out why Flying Solo is such a necessary and empowering support group.

~

Oscar: Diane, I remember last time we talked you mentioned the group started in 2022, is that correct?

Diane: Adriana and I started it together. Our first meeting was in May of 2022 which is hard to believe. It's really hard to believe it's over two years.

Oscar: And where are you all located? I'm curious if there's any geographic connection or anything.

Diane: I'm in Chicago, and the groups began on Zoom during COVID. So our leaders and our participants are from all over the country, and actually all over the world. Members show up from different countries.

Oscar: Eugenia, how did you learn about the group? And could you tell me a little bit about your background?

Eugenia: Yes, I am located in Wisconsin. In the northwest area of Milwaukee, and I was diagnosed with corticobasal degeneration in October of 2021 and I started looking into information, and took information about the illness and what to expect and all that. Everything led me to CurePSP, because it was the only website here in the states that had a lot of information, and I found out about this Flying Solo group at that time I was living alone with no expectations of having a dedicated caregiver. So it fit, I fit perfectly into the group. I think I attended one of the first meetings. It was sometime in 2022 and during the summer, and that's my connection. So I've been there. Sometimes I cannot attend the virtual meetings, but for the most part I am present, and it's a great place to really share our situations and our feelings and emotions with the progression of the illnesses. It's all patients, so it makes it very unique, and we support each other.

Oscar: Yeah, before finding out about the group, what was it like living alone and managing CBD?

Eugenia: It was nerve wracking, and I didn't know if things that had happened to me were because of the illness or because, you know, just normal stuff that happens to normal people. Oh, but I felt really lonely trying to fight depression on my own, because I'm a very uplifted person, but it was really hard just to feel that there's nothing that neither the medical field or other fields could help us with. So you feel like you are abandoned to your own destiny. And then I realized that I was not alone, and there were people that could understand, because unless you go through this, you cannot understand what someone is feeling.

Oscar: Yeah. That's what I've heard from a lot of different people living with these diseases. How did it feel to attend that first meeting and what was it like to meet other people that understood?

Eugenia: Well, it was great. It was great to meet Adriana and Diane and the other patients that were participating. I met people that were in a more advanced stage than me, and others that were similar to me, similar personality and attitude in life and others, not so much. But we were all going through times when you have to make decisions. A lot of decisions have to be made to change your life and to make sure that you are equipped to deal with all the changes that come in your way.

Oscar: How do you approach that? There's so much going on with the disease. It's progressing, there's a lot to deal with. How do you approach making those important decisions about your life, your daily life, about care, without having other people there. How do you make those big decisions on your own?

Eugenia: Well, to begin with, I have always been very independent, and I'm a quick decision maker, so I know what I have in front of me and I don't waste time. I just take all my issues and challenges head on and say, “Okay, what do I have to do now for that?” So, yeah, there were a lot of questions at the beginning, once you are diagnosed, there are a lot of decisions that you have to make, like, is this the best doctor? Is this the best hospital network for me? Should I keep working or not? How would I financially deal with this if I'm not retired or if I'm not able to retire? Personally, I had to decide whether to take disability at work or not, because my job was extremely demanding, intellectually and time-wise. So intellectually my brain, I had experienced cognitive loss, so I wasn't able to do my work the same way. So I had to decide to take disability and long term disability in order to be able to meet all the requirements on therapies and doctors visits. At the beginning, they are overwhelming, so many things you have to do. But I wanted to have a baseline of where my body and my illness was and how to deal with it. There's an emotional part you have to manage. I had to decide whether I wanted to let myself get depressed or be happy. I decided to be happy no matter what, and fight against this disease with all I had, which is my body, my spirit. Spiritual strength, emotional strength, and all the people that I know and people that I don't know, you know, just being nice to people, they smiled back at me, and then I feel better.

So, then I had to sell my house because it was a two-story house and I couldn't live there anymore. Decided where to live. Decided to get a service dog, which was unusual for people with this illness. But those are the kind of things that I had to adapt to. And I lost my handwriting. So many things and people and the other patients they deal with something similar in terms of housing, housing needs, help to honor your daily life, help to carry things around the house that you cannot do anymore because you don't have the functionality.

Oscar: What perspective do the other group members bring you? Because you sound like a very independent person, are they similarly independent? Or do they offer different perspectives?

Eugenia: Well, each person's life is totally different. We deal with different issues. At the time, like I said, I was single, I was divorced, and I didn't have children. I didn't have family or friends around, because I came to Wisconsin for my job I was relocated, so I had no connections. But there are many other people who have family members around, or they have a network of friends. So each situation is different. A lot of us are very independent, and I guess that is a requirement to do this on your own. And well, it's different personalities and people make decisions in different ways, but in the end, we had something in common that we needed to make changes and to adapt, and everything brings a new challenge, and it's just about being open to the changes. At some point, we all get to the point that we accept the diagnosis and in a way, we embrace it, because you cannot just fight it. It's with you for as long as you live.

Diane: Could we at this point, Adriana and I may have some things to add to your question, Oscar about what are some of the topics that other people have raised that may be a little different, or even not so different, from Eugenia, but just to illustrate the different kinds of things we talk about, and let people know that this group really serves people in earlier stage or later stage, newly diagnosed or having lived longer with the disease, and like Eugenia said, going through changes. For example, one of the topics that comes up often in the group is, should I move from living totally alone in my apartment to living alone, but in a group situation like independent living or assisted living. And somebody will come to the group one day and say, “How have other people made this decision to move?” And discuss that with each other. You know, did the pressure come from a family member? Did a person take the initiative to make that decision themselves, so that they felt more in control of the decision than having someone else make it for them. So that's one of the topics. Another big one is social anxiety, or the difficulty in explaining or telling other people what a symptom is, what it means, so that others understand what you're going through and don't jump to conclusions that it's something else, or just walk away from you because they're scared of the unknown. So finding ways to talk about the disease, I think, is an issue. There's a lot of topics, just in terms of the symptoms themselves, like sleep issues, or going out socially, those kinds of things, how to ask for help. I think that's a big subject that people talk about. A lot of people are not yet used to asking for help, but then share with each other, once they do, they realize people are more than happy and more than gracious to help them. So those are just some of the topics that people living alone are navigating.

Oscar: Yeah, as you're explaining it, it sounds like it's a really wide range of people at different points, and then also the topics you're discussing. What is it like for all of you being in the meetings, how do you decide what to talk about? Because there's so much to cover.

Adriana: Diane and I, as the facilitators of the group, we really take the approach that we are facilitating the conversation but we're not leading it, because we're not the ones with the lived experience. And so we allow our group members to bring up either what was hard today or what was hard this week, or what's on your mind right now. And because the group even with new members and old members, the dynamic of the group is such that there is this connection that happens, where there's a universality, I think, to some of the things that we talk about, where if somebody brings something up, it kind of triggers either a conversation or questions or suggestions. And so for Diane and I, the goal is always to allow for people to bring up what they're dealing with in that moment, to not have it prescribed by us. And then if people are having a little bit of a shy time, or there's only one person who's talking, then we kind of push the conversation along by asking other people for their feedback. But that's why we started this group. We recognize that living with some of these diagnoses is really challenging, and navigating it without a dedicated what we call care partner or caregiver, can bring up a lot of different worries that weren't being addressed by other support groups. And so I think because people know that and know that either someone's widowed or divorced or living far away from family, there's a very easy connection that's made, kind of from the very beginning, when we started this group that allows people to feel safe being vulnerable, and that me and Diane remind people that as social workers, we might have some ideas of what might help and what could alleviate some of their symptoms or some of their worries, but other people in the group who've actually lived through that or are moving through that, they're the ones with the wisdom. They're the ones that can really give feedback that just kind of makes the light bulb go, “Huh, I'm in a different situation, but that resonated with me,” or “I love that you're so positive, Eugenia, and I have a difficult time being positive, and I feel really angry or worried,” and we recognize that everybody, the way they approach their disease, is different, and we can take from each other. If today we’re going to be angry, that's okay to be angry today. If today, you leave the group with a little bit of hope, because Eugenia found love and an apartment in a new city, then we're going to leave with hope. And so I think that's the beauty of our group, and why we continue doing it, and why we want people to know about it.

Oscar: Eugenia, are there any specific moments that have been particularly resonant with you?

Eugenia: Yeah, at the beginning, I used to cry a lot in every meeting. I got to a point that I couldn't hold it anymore. All my emotions were like a thunderstorm of emotions every single day, and when people sometimes ask me, “How are you doing?” I would say, “Fine.” And then I started crying.

But then I smiled, and I was okay. So it's what Adriana is saying that we don't know until we find someone that is going through the same, and I think a common place for a lot of us is that we have hope. We choose hope to have a good day, to think that the next day is going to be better. We know that this is a degenerative illness, and it's not going to disappear, it's gonna get worse, but every single day can be a hopeful day that you're gonna have a good day. That's where we are, that every single day can be a good day, and we're going to learn from that and accept what we cannot change, and keep living.

What I have seen in this group is people get to the point where they truly believe that you need to keep living your life a good life. You still live your life the way you want to.

Oscar: What do you tell yourself on the harder days, the days where it's harder to do that. How do you get through those?

Eugenia: Well, I can tell you a typical hard day for me is when I go to my follow-up appointment with my neurologist. I go there really upbeat, and I leave almost kissing the floor, because for example that was yesterday, and we were looking at my symptoms and how different they are from six months ago and at some point he told me, “Eugenia, you know that the medications, there are no medications that really help, but they are just making it better. But this is not going to get better. It's always going to progress. And he said, “Your progression is very slow,” which is good because of all the things that I do day in, day out, like being very active, a lot of exercise and specific exercises, but then I leave the doctor's office, and I feel terrible. And then for a moment or two, I'm in that same mood, that everything is terrible. And then I just tell myself, “Okay, it's enough. Go away,” and for the most part, I become happy again, and enjoy little things like laughing about myself. I just don't find the words, or I say things that seem funny, because the way I am using the words now is different than before, so it's hard to tell you how exactly you do it, but you find the strength within yourself to just leave the bad feelings and the feelings that make you feel different. And different from other people, I told someone at CurePSP yesterday, it was a call, and I told her, “Well, I decide to choose happiness and joy instead of fear and anger.”

Adriana: And we talk about that, I feel like Eugenia in the group, where it's okay to have a hard day, it's okay to be angry and to be worried and to be fearful of the future. What we hope our group is is a space to explore those feelings and to come up with ways to move through them, instead of, you know, deny that they're there. And so if you're worried about, how am I going to care for myself when this progresses? Then let's talk about what some of the options are. Let's talk about what some other people in our group are doing. If you're scared about your speech changing, let's hear from other people on how they have adapted to changes in their speech and how they maybe utilize different devices to help them communicate with loved ones. And so let's talk about the scary stuff, not just to stay in that fear, but to talk through solutions and to find ways to get to that side of living well, living as best as you can with each moment and reminding people that they get to define what quality of life means, and that we all explore that together and talk through what that means. And so I do agree that our group is a very hopeful group, and that's why people come back, and it's infused with hope, and we utilize humor a lot. But that's not to say that people don't come with what's worrying them, and we don't dismiss that. We go there, you know, we go there and we talk about it so that we can help that person think through their own either support network or system or their own internal mechanisms that they have to cope to be able to move through it.

Diane: Yeah, I was thinking the same thing too, because Eugenia got through the initial stage and the hard times and the crying sessions, but some people come in at that stage and they're in no way shamed or excluded. They're welcomed, and their feelings are accepted, and they also see that this is a process, this is a journey, and the way they're feeling today may not be the way they're going to feel in six months, and that is part of the strength of the connection that they make with each other. Adriana used the word wisdom, that people take away wisdom. And it's just so true, everybody in the group seems to have some pearl of wisdom, some gift that they say almost each week, each month, that uplifts one another. And actually, some weeks I'll take notes as to the hopeful ways that people use in their lives and are willing to share with one another. So one week somebody said, “Well, I've learned that I can pivot in my plans. I don't have to stay on the course I thought I was on, because it may not work out that way. I have to be flexible.” Another time, somebody said, “What I've learned in this group is to be open to new information,” so I take notes so they're coming up with this, these personal experiences within the group that will help one another. And I think that's the kind of tone that we want to set and then it's more than often a free-flowing discussion from there.

Oscar: I'm also curious you mentioned seeing the neurologist and having those appointments, the healthcare system can be difficult to manage. They might not know much about these diseases, you might know more than the doctor you're talking to. I'm just wondering how does the group help manage that? And create a better quality of life and a type of treatment that is more suited to your needs and is based on how you're actually feeling. Does the group help manage the healthcare system?

Diane: That's a good question and an extremely relevant and important question. Yeah, I don't know who you want to tackle that first, but yeah, we have some people in the group that are just getting started, and they're still on the road to diagnosis, and they may not even recognize that a good and better approach to these complex diseases is a comprehensive care team. So we very much promote the idea that we want people to have access to and be aware of the need for physical therapy, speech therapy, occupational therapy, a healthcare network that supports them and also a network in their community that supports them. So we talk about the kind of formal network, support network and the informal support network. A lot of people in the group, and Eugenia is one of them, receive their care from a comprehensive care team in a designated PSP, CBD, MSA Center of Care, and so they can talk to the other members about the value of a coordinated healthcare team.

Eugenia: Yeah, let me add that we don't talk about a specific treatment, we talk about our experience. So then the person that is asking the question or going through a difficult time because they don't have a definite diagnosis, then they can see that there are options, right?

Diane: That's a good point, in our group we don't give medical advice. We give routes to getting it, more or less experiences around accessing it, but yes, we don't give specific treatment or advice. Excellent point.

Oscar: Diane, last time we talked, you mentioned that a guiding principle for you is that if one person has the diagnosis, then the whole family is affected. And I want to know what that means for people who might be managing this on their own or with less of that system in place?

Diane: Yeah, let's see. Even if somebody is living solo, their family may still be out there, calling them, asking questions, advising them, giving them conflicting information, maybe, on the other hand, not being able to talk about it. So yeah, I think the same rule, the same kind of principle, applies whether somebody's living with their family or not living with their family, that there are reactions, and some are more helpful than others, and some less so. So I think people who carry diagnoses like these still have to navigate and determine how much they want to take in or accept or not from others who may or may not understand or want to. And I remember Eugenia going through some of this with her out of town family, and kind of having to set the boundaries on how much did she really want to hear from them in terms of their opinion, you should do this, you should do that. So yeah, I think an individual is still a part of a family. That's definitely one of my underlying principles or approaches to practice.

Oscar: And for anyone, is there anything that you've noticed from the group meetings that you think is important for people that are not a part of them, that might not be living with someone directly with these diseases, what have you noticed from people's experiences that you think is important for outsiders to understand? What do people overlook about these diseases?

Eugenia: One of the things that I learned is that we are not the disease, and that's one of the things that sometimes people that want to help or friends and family have to understand is that we are still who we are, that we happen to have an illness, but we haven't stopped being who we are, and so the illness comes in the forefront when in reality, we are the ones that should be in the forefront. And that was the struggle I had with my family, that everybody knew a solution until I told them the solution is that you call me and you tell me hi and tell me a joke so I can laugh. But please do not ask me, “How is your arm doing? Or “Have you fallen? Or “Can you go to another doctor?” No, I don't need that. I just need the human contact, and they learn that. And in my family, we don't talk about my illness. And I think that has happened to all of the participants of the group that they have to deal, and like Diane said, set boundaries and realize that you are more important than the illness itself.

Oscar: Yeah, that seems unnecessarily stressful when you already have so much going on. Eugenia, what would you tell someone who's dealing with this diagnosis and might be feeling lost or struggling?

Eugenia: I would just say to never lose hope. Hope to find the right person. Hope to find the right place where to feel better and at the end of the day, we continue living, and live to the fullest, because we don't know whether we are going to be here for two months, three years or 10 years. We know we have a time and that the time is clicking faster, maybe for us than for all, but we still can live our life to the fullest.

Oscar: Yeah, everything I've heard about you, it sounds like that’s what you're doing it's really inspiring to see. Thanks so much for taking the time to talk. Eugenia, congrats again on your wedding, too.

Eugenia: That was something I would have never expected. Yeah, I thought that I was going to be alone for the rest of my life, and now I have a wonderful person to take care of me. And it's not that what I was looking for it but he decided to do that, and he said from the beginning, “You are more than the illness.” That's why he is the person that showed me that I was more than the illness.

Diane: Yeah, there's a quote: “I have the disease, the disease doesn't have me.”