JAC:Welcome to #WeGotGoals, a podcast by aSweatLife.com on which we talk to high achievers about their goals. I'm Jeana Anderson Cohen; with me, I have Cindy Kuzma and Maggie Umberger.

CK: Good morning, Jeana.

MU: Good morning, Jeana.

JAC: Good morning. Cindy, you talked with Lynne Nieto.

CK:I did. I spoke with Lynne Nieto, who is the wife of Augie Nieto and also an incredibly accomplished person in her own right. She is, of course, many more titles than just wife, but her story is remarkable because Augie is the founder of Life Fitness, a manufacturer of fitness equipment that's based near here in Chicago. He was diagnosed with ALS 13 years ago and the journey that they've been on together since then has been really incredible and I'm so grateful to her for sharing with us.

MU: So the Nietos are doing a lot for ALS research and more than just fundraising, right?

CK: That's right. I mean they have raised a ton of money, like more than a hundred million dollars, so they've done that, but they've gone farther. Augie has really brought his entrepreneurial spirit to trying to find a cure for this disease. So they have built a research institute called the ALS Therapy Development Institute that is set up to streamline the process of finding a cure and they already have one drug that's in clinical trials. It's really exciting what they've been able to do.

JAC:It's interesting to speak with someone who's going through something like this because as a partner of someone who has a disease or who sort of has their freedom taken away, their movement taken away by a disease, it's easy to lose hope. Did you get a sense from her that she has that sort of positivity and hope that's carrying her through?

CK:I certainly did, but it was really interesting to talk with her about how she got to that place. It was definitely an evolution for both of them. It's a heart wrenching story to hear her talk about how they both reacted to the diagnosis. Augie took it very hard and she kind of went into fix it mode and was just like, how do we fix the house to make us able to stay here? How do we fix our finances? And she became his caregiver for a long time too and was really doing those day to day tasks every day. It wasn't until two key things I think happened. One was that his disease progressed very quickly and then he eventually got a tracheotomy, which is where they put in a tube to help him breathe and eat and that seemed to slow down the progress of his disease and that gave them a little bit of hope. And, she also actually stepped away from being his primary caregiver and they were able to hire people to caregive so she could go back to her role as as wife, partner, supporter.

And those two things helped them adjust to this disease being kind of their new normal instead of being a hopeless, devastating experience for them. And what's really interesting too is that she talks about their relationship actually being better now because of the way they've had to solve these problems together. And obviously I don't think she would wish this kind of a diagnosis on anyone. But wow, what a powerful message of positivity to be able to say that something in your life is better after something like this has happened to you.

And one other thing I'll say too, we mentioned the documentary in, in this interview, AUGIE is the name of the documentary and it's going to be on Netflix and Amazon beginning on March 20th. So if you are interested and inspired by their story, which I'm certain you will be, you can check it out.

MU: Here is Cindy with Lynne.

CK: This is Cindy Kuzma and I am here with Lynne Nieto. Lynne, thank you so, so much for joining us today on the #WeGotGoals podcast.

LN: Thanks for having me. I appreciate it.

CK: Lynne, the first big question we usually ask people on, #WeGotGoals is about a big goal you've achieved, why it was important and how you got there and we'll kind of get to that. But you know, first of all, you're a person who's had your life and presumably your goals within that life kind of upended. I had the chance to see the incredible new documentary, AUGIE, about your life and your husband's. But for those of our listeners who haven't had the chance to see it yet, I wonder if we could start by filling them in a little bit on the basics of your story.

LN:OK. Well, about 14 years ago, Augie—who started Life Fitness when he was in his early twenties—super great athletes, very, very fit, began feeling, actually could see tangibly that those weights when he was lifting weights was he was less able to do the same amount of weight. And about that time he kept telling me that and I’m, I was basically saying, hey look dude, you're getting older, you know, things like that not work quite as well as they did before. And he noticed some twitching and some they call them fasciculations, which is basically twitching of your muscles in his pec region. And then kind of the real telling thing was he was having a hard time putting shaving cream on with his right hand. And so coming up, this is coming up March, 13 years ago, we went to the Mayo Clinic in Scottsdale and received the first of seven diagnoses of ALS.

And for, if you're not familiar with ALS, it is a progressive neurological disease that's typically fatal and two to five years. The brain works fine and it's basically almost like an electric cord gets cut where the brain is sending the impulse for movement, but the voluntary muscles aren't receiving it. So in Augie, it started out in his arms, progressed to his legs, progressed into his bulbar area, his in his mouth region where he could no longer speak and then finally into his diaphragm and he was trached, is on a ventilator, has been trached for six and a half years now, so about halfway through his diagnosis and he uses his computer and does all this business work using his feet. So he has a roller ball on his right foot. He has a left click on his left foot and he has his computer mounted on his wheelchair in front of him and he basically works a lot now.

So he always worked a lot. His golf game sucks now so he doesn't spend time playing golf that. But that being said, I just left him a few minutes ago upstairs and he was working out in our garage, so he about three years ago, four years ago, he started working out again with special coaches that up until Augie, had only worked with spinal cord injury patients. So he does three, three hour workouts weekly and that's just been really special for him to go back to something that was so core to his life before.

CK: Did you say the first of seven diagnoses?

LN: Yes. We kept going to try to find somebody that would tell us we didn't have ALS. We were unsuccessful in that. Yeah. My brother, who's an oncologist really kind of took us under his wing when we got our first diagnosis and we traveled the country to the ALS specialists all over and unfortunately got the same answer six more times.

CK: I can't even imagine what that must've felt like for you. How did you process this and how did it change the way you looked at life and at goals and at the future?

LN: It's I think any time you receive a life altering message, whether it's health or it's, there;s sort of just the shock factor that you can't quite wrap your arms around. In Augie’s case, he went into a deep depression. Couldn’t—here's this highly functioning guy, started the world's largest health equipment manufacturing company and he basically couldn't function and ultimately tried to commit suicide about three months into the diagnosis. About that time—we live in a home that’s down the side of a cliff that has at least three to five stairs in and out of every room and I kind of went the other direction to hypervigilance mode of trying to figure out how we could remain in our home and get an elevator installed and so I went into kind of fix it mode and that was sort of how I tasked myself through it and it was almost like you were trying to just keep your head above water. That's the only thing. I look back at that time as a real just kind of foggy time, really like, stopped working out, stopped of doing everything that was positive and good in our life and just trying to stay on top of things.

CK:How and when do you feel like the kind of—because obviously you all have accomplished so much since then. I mean, how did that start to shift for you, do you think?

LN:It started shifting probably about five years into the diagnosis. Actually, no—it really shifted about the time Augie was trached and put on a ventilator. Up until then his disease progressed in a pretty, a slow clip for ALS, but it was definitely, Augie was going downhill and a lot of things were thought of in terms of, you know, is this the last birthday, the last Christmas will he ever get to see our kids graduate from college? So a lot of things were kind of looked at it that way. Then in that last six and a half years since he's been trached, his disease seems to have stalled out. He's healthy with the exception of ALS. So now this is just sort of our new normal and we've lived with it so long—we were fortunate enough or we are fortunate enough to have lived this for so long that this is sort of normal. It's our normal, at least.

CK:We’ll get back to my Interview with Lynne in just a minute, but first a word from our sponsor this week. This episode was brought to you by Chicago Sport and Social Club. With them, it's more than a game. It's a social sports experience. Whatever your personal goals are, big or small, Chicago Sport and Social Club can list many reasons why you should play. It might be the sand between your toes, meeting people and moving your social life outside for a season. Whatever your goals or reason for playing, Chicago Sport and Social Club has a beach volleyball league for you. You can create a team of all women. You can grab a group of co eds or you can sign up as an individual and get set up with the team. In any case, if bump set and spike are the words that punctuate your summer, you're going to want to register for the league built around you. To do it, go to www.chicagosocial.com, and use code goals. That's G-O-A-L-S when you register for 5 percent off and hey, that's good through March 15. And uh, now it's back to my talk with Lynne

CK: So let's kind of then go, go back to that big question, what a big goal that you have accomplished is why it was important to you and how you got there?

LN:It’s interesting. When you first posed that question in the email, I was thinking back to career goals and that— as the more I sat and thought about it, the more it, it occurred to me, it wasn't my career goals that really are today the things I'm most proud of. It's our personal, our family, our four kids there who are all married, all have kids, all graduated from college. They're happy, they're fulfilled, they're productive, they're smart. That, that goal I think is probably my proudest and that we’re responsible for another human being's life and that that's a pretty hefty thing to take care of. And so I think that's, even though I'm not certain that was a conscious goal, it ended up being that way. I think how Augie and I were able, not that we can take all the credit because they're just great, great individuals, but kind of living our life by example and invest in their lives. So I think that would be probably, you know, at almost 60, that would probably be my proudest goal to date.

CK: Remind me, how old were your children when Augie was diagnosed?

LN:Our youngest was 17 and our oldest was 21. So we had three in college, one in high school,

CK:And I know it's touched on in the film, but what do you think are some ways that, that this diagnosis and the way that you and Augie have dealt with it, how has that affected your children's lives and do you think that they have taken some examples from the way that you've dealt with it?

LN:I think I'm most proud of personally of showing how a marriage can go through struggles and face very difficult times and still come out the other side in a in a good manner. I think I've been a good example to our four kids of what for better or worse means and for staying. And as I touched on in the documentary, I'm not really super certain that Augie and I would be married today without having gone through what we've gone through. Honestly, I know it sounds really weird, but we are the best part of our marriage we've ever been. So if having lived that example for our kids makes—that's a huge goal too. I'm not certain again, was a goal as much as an outcome.

CK:Yeah. Sometimes the most compelling goals are ones we didn't necessarily intend to set out for us specifically, but ones that we just reach. Lynne—you did mention, and I thought that was a fascinating part of the documentary that your partnership with Augie has changed through all of this. Can you talk a little bit more about about what you just said about how it is that you two have been able to work together and how your relationship has changed as you've, as you've grown to face these challenges?

LN: Well before ALS, I think you had two of the most independent people on the face of the planet that probably in our heads thought we didn't need each other that much. And that's not always a great way to go about a relationship. So we went from Augie being on the road all the time to us being together all the time. I became Augie’s caregiver as he needed more help. We were never apart, so that was quite the transition and never expected that to be that way and I think just in general through the struggles that,  and and through the communication difficulties, we've had to learn to be more thoughtful in what we say to one another because Augie’s having to type it with his feet. I've had to learn to listen and be patient and in that quiet thoughtful time, I think we're better people. It’s so much easier to fly off the handle and it's say things without thinking.

CK:And obviously you have these common goals now with the foundation, with Auggie's Quest and with the ALS Therapy Development Institute. I wonder, does having those sorts of goals jointly also change the your relationship and the way that you work together?

LN:Absolutely. I think that’s, we're in lock step together now and have a common goal and not unlike being a proud of having taken care of our kids as individuals and and hope to have formed them in some manner into the people they are today, I think we carry that same spirit of because we are the lucky ones. We've been able to live with this disease a lot longer and adjust and we really feel like we have a responsibility to take care of those suffering with ALS that can't because of either their family situation, their progression rate. That we need to make a difference, and so we are solely dedicated at the ALS Therapy Development Institute to finding effective treatments and ultimately a cure for ALS. And we have a unique situation in that we can, Augie can bring his huge sphere of influence to bear. The fitness industry has been behind us since day one. They continue to do that, so I think we have a sense of responsibility.

CK:I know that the ALS Therapy Development Institute is a little bit different from the way a traditional academic medical center or research institute is set up. I wondered if you could talk a little bit about how you worked to find the right people and resources to to go about this goal of a cure in a slightly different way.

LN:Well, I think what's been really fun for me to watch because I wasn't around when Augie was starting Life Fitness, was to see his entrepreneurial spirit and how how he looks at things differently. He runs the institute as if it's a for profit business, it’s the world's largest not for profit, ALS only research institute, and he's gone at this as if it were a business and with the same laser focus and consideration for needing lightning speed in a disease that kills people in two to five years. So that's where I think he's done such just a unique approach to it because he is approaching it as if it's a business.

CK:And for you, I, I've read, I know that you had to get a little bit more comfortable with, with being in the spotlight then you might have been before. So I wonder if you could talk a little bit about that and how you've sort of worked on that aspect of all this.

LN:Well, I can't say I am comfortable. I'd like to say I was. I am not comfortable, but I have learned to be in discomfort and just lean into the discomfort and be okay with it and not to worry so much about how something's perfect or not perfect and just try to speak more from the heart. Sometimes I'm better at it than others, but um, and, and I know that, um, if, if Augie could, he would be the spokesperson, but now I feel that sense of responsibility to being his voice.

CK:That so clearly comes through in the documentary too. And you and I were talking a little bit before we started recording about what, what it was like to, to go through that process of making the film and, and watching the film. And could you talk a little bit more about what that, what that felt like and um, you know, you mentioned that your opinion on it has changed a little bit now that you've seen it a few

LN:Yeah. I think this was something that—Augie really wanted to do this. I being pretty much an introvert, this isn't something that would be on my radar screen and my deal with Augie was that I would agree to go through with doing the documentary, but we weren't going to sugar coat our lives that we were going to share the, the bad as well as the good. And that was very cathartic in many ways. It was also really strange to have people in your bedroom with booms and lights and cameras and, and trying to, I guess just ignore them the best you could to try to be genuine. And that was interesting at times. I'm glad in retrospect we did it. It took a year in chunks of time. It was intrusive. On the other hand, I feel like now we have something that can shed some light on ALS, on trying to find treatments and a cure, on others living with the disease and how we really can make a difference. I do believe that we will have, we know we will be in phase one trials with our first drug in the first quarter of 2018, money willing. We'll have it in phase 2A trials in the third quarter of 2018, where it's actually in people with ALS. That's huge. That's huge in a disease that's an orphan disease only because people die so quickly with it.

That's so exciting. I can't tell you. It felt like we felt like we were kind of like the little little train that could going up the hill, going up the hill, going up the hill, asking for money and just telling people to trust us that we'll do well with it and now we have something tangible and that that's, that just makes it all worthwhile. And we have two other drugs in the pipeline that look promising. So I think the difference today versus when we were diagnosed 13 years ago is that there's hope today, you’re not necessarily told to just go home and get your affairs in order like we were.

CK: I mean, it seems clear that watching Augie fight must have changed your kind of perception of what's possible, right?

LN: Absolutely. It's, it's exciting. It. I have a big smile on my face right now and there's nobody here mean it's just.

I mean, you talk about goals, we get this accomplished, we get a treatment and ultimately a cure for ALS? That's a lofty goal and uh, we're, that we quite possibly will get there.

CK: As I said, I mean, that's the other big question we ask on this podcast #WeGotGoals and I'm, I'm not really sure you could come up with a more compelling goal than, than curing this disease. What else do you think it will take to get there? And what else would you say about your plans to, to continue this effort in the next, you know, five, 10, few years, however long it takes?

LN:I hope it doesn't take that long for those living with the disease. What we've really shown here, Cindy, is that ALS is not an incurable disease. It's, it's just underfunded. So when you ask what we need, it's all money. It's money, it's a plan to accomplish what we're looking to accomplish at the institute, which is treatments and ultimately a cure for this disease. So right now that's the only thing holding us back. If we had a huge windfall of funds coming into the institute tomorrow, we have a plan in place to spend it. So we wouldn't be scrambling around trying to figure out what we're going to do with it. So that's how forward thinking our institute is.

CK:You all have raised a pretty incredible amount of money so far. Right? What have your total's been?

LN:So Auggie’s Quest has raised about $62 million in the last 13 years and Augie as the chairman of the ALS Therapy Development Institute overall during that same period of time has, has raised total between Augie’s Quest and the institute. $110 million. That's huge. It’s the biggest thing that's ever been done in ALS and we've spent it all. Yeah.

CK:What I do and I think that helps people get their, wrap their heads around a little bit. What's, what's required here. How can people. I mean, I know that everyone listening is going to want to watch the documentary as soon as they're able to. Um, what are some of the other ways that people can keep tabs on the work that you all are doing and get involved?

LN:Well, Augie’s Quest is part of the ALS Therapy Development Institute, we’re a fundraising arm of it so you can see the work that we're doing and events that we have coming up at www.augiesquest.org, and for specific things at the institute to see AT-1501, which is a drug name not too sexy, but something better will come up in time at our website at als.net. Takes you to our institute's website and I think just to see the things that we're doing and even see other people living with this disease, to put a face on it. So we also have a program within Auggie’s Quest called Team Quest for ALS.

Uh, it is, we've done. We just finished our fourth half marathon, Rock ’n Roll half marathon. They’re around the country. We did our first one in Brooklyn, followed by Philadelphia, Denver and just recently in Las Vegas. That was crazy. And we've so far through those four by getting thorough our fitness industry contacts, getting people to get teams together, we've raised over a million dollars. So if you have people that are interested in participating, you can see that on augiesquest.org website for future ones, we're doing one in San Diego, Nashville and Denver again, and New Orleans. It's a cool program.

CK:Lynne, it's been so wonderful talking with you and I can't thank you enough for sharing your story and sharing a, a glimpse of your, of your life through the film and, and through this talk today. I thank you so much for taking the time.

LN:Well, thank you for having us. And thank you to the listeners for anything you can do to help us get to our goal of finding treatments and a cure for ALS.

CK:This podcast is produced by me, Cindy Kuzma, and it's another thing that's better with friends. So hey, share it with yours. You can subscribe to it wherever you get your podcasts and please while you're at it, leave us a rating or review. Special thanks to J. Mano for our theme music; to our guest this week, Lynne Nieto; and to Tech Nexus for the recording studio.