I'm Dying to Tell You
I'm Dying to Tell You
Life After ALS: A Journey of Healing and Hope
The emotional aftermath of losing someone to ALS is a journey rarely discussed but vitally important to understand. Caroline, Jill, Jenny, and Deb—four remarkable women who lost husbands and a sister to ALS—share their paths through grief toward finding purpose and even joy again. Years after their losses, these women formed "Antiques Roadshow for ALS," a cycling team of women over 60 who donned pearls, vintage clothing, and tutus while raising over $28,000 for ALS TDI's research. Their stories reveal the complex reality of grief—how it never truly ends but evolves into something you learn to carry alongside new experiences and memories. These women candidly discuss experiencing depression, anxiety, and PTSD years after their losses, normalizing these ongoing struggles while demonstrating that healing doesn't mean forgetting. For those currently caregiving or recently bereaved, their stories offer a glimpse into a future where community, purpose, and even joy remain possible. Enjoy the listen and thanks for sharing with a friend. Hugs, Lorri
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Hey, I'm Paul and I'm Christian. Welcome to. I'm Dying to Tell you inspiration shared by our mom, who is dying from ALS. There is no cure for our mom or anyone else with ALS, but right now she's on a mission to find and share stories of inspiration Coming to you from Cincinnati, ohio. We're happy to introduce the one lady we've both loved since the first day we laid eyes on her the queen of the queen city, our mom, your host of. I'm Dying to Tell you.
Speaker 4:Thank you for being here, welcome, welcome if this is your first time and if you have been here before, welcome back. So so grateful for each of you. Well, I'm really excited about today's episode because there are some powerful, amazing women that I am getting ready to talk to. I know them because they are a part of the ALS community. Unfortunately, each of them has lost someone to ALS, so for them, the season that they are in is after ALS, and the way that they are handling grief, the way that they have leaned into community, really, really inspires me. And even if you don't have a connection with ALS, with ALS, chances are pretty good that you have lost someone in your tribe and man. That is just the toughest and it can really take you down. Which is why I am encouraging everyone to into this episode, because each of these women have learned so much about grief and about living with grief and about moving forward in the new season of life without their very important person. And I don't think that they're going to tell us that they have all the answers or that life is great every single day, but I bet they have some really good insights on what they have done to best live in this season and one of the things that they have recently done, they formed a team in ALS TDI's Tri-State Trek, and it is a cycling event and they had a lot of fun with it, starting with the name of their team, which is Antiques Roadshow for ALS. So I'm sure we're going to hear all about their team, how this even came to be and what they want you to know about their experience there. So I'm going to let my guests introduce themselves.
Speaker 4:But I, her sister to ALS, jenny Dwyer, jill Bratton and Deb Poust and all three of them have lost their husband to ALS. Here they are fighting for all of us that are living with ALS. They are getting on bikes, they are riding who knows how many miles, they are dressing up in tutus and calling themselves antiques, all in the name of trying to find effective drugs and treatments for ALS. We had a heck of a time trying to schedule these for women. They are busy, busy, but today I've got them jumping on Zoom and super excited for you to meet them. So let's go on over to our chat. Let's go.
Speaker 1:Good morning. Good morning, I'm at my brother's plastics company in Pennsylvania. Those are the silos that are full of plastic, whatever.
Speaker 6:I am in a hotel room in La Crosse, wisconsin, so we're coming to you all over the place.
Speaker 3:Hi everyone, hi Jen, hi Jenny, I'm coming to you from Blakely's bedroom in Alaska.
Speaker 5:I'm coming to you from a spare bedroom in Jacksonville, florida, my brother's house.
Speaker 4:I love it. I love you, ladies.
Speaker 4:Oh my gosh. We did it All right. This is the accomplishment right here, and thank you all so much for sacrificing. I know traveling and up at all hours in the morning to try to get together, so I'm so in awe of those of you that stay in the community, because how easy that would be to walk away and say I don't ever want to hear ALS again. I don't want to witness all the heartache that people are going through, and so, first of all, thank you for continuing to be here and do everything that you all are doing, so I appreciate it, and do everything that you all are doing, so I appreciate it.
Speaker 5:Thanks so much for saying that, Lori.
Speaker 4:Yeah, really, I mean, I don't know, I don't know if I was in your position when I went to it's easier because we have each other.
Speaker 5:We have found each other, yeah, and yeah, I don't know how long I'd stay in this if I would, if I wasn't hanging out with these ladies, you know.
Speaker 6:Yeah, yeah. And there are so many people that say, and it's true, we get it. We get what each other are going through, and the support that we find in each other helps us continue to do this. I don't think any of us want to walk away. We have a commitment to ALS for different reasons, but it also is so helpful to have people that understand you and understand the trauma and the PTSD that you carry with you from this disease and are there to support you.
Speaker 2:Yeah.
Speaker 5:Yeah, and the other thing is is I think there's a misconception that all we do is talk about als and and we don't. We, you know we're friends. We talk about other things. So it's not like we're a you know als 100 of the time, and a lot of us are the same age, we have children, we have grandchildren, and so it's not specifically an ALS relationship, it's a true friendship.
Speaker 3:Yeah, I like that and I think too for me. You ask how we can still continue to stay in this fight. And it's because, number one, we have to end this disease. But we continue to meet new people along the way, like you, who inspire us. And you know after I've always said after you met ALS, you can't walk away from it. And you know I can't turn my back on the people that are fighting this disease now, because I know what the end is going to be on the other side and I will do whatever I can to make that not happen for somebody else.
Speaker 5:And I think the other piece of that too is that the heartache, especially for those of us who have children and had to see our children go through this disease with our person. I would love to have a cure in my lifetime and, I think, my children. We don't have a familial component to ALS, but I think there would be a collective exhale and relief and probably a better quality of life if there was a cure, and I want that for my kids and my grandkids and for every family that has endured that diagnosis.
Speaker 1:And no family should have to go through this. That's what we're fighting for. No family should have to go through this. And Deb's right, hopefully at some point in our lifetimes, boy, wouldn't it be nice if that were the case.
Speaker 6:Yeah, and I'll just. I'll just add to that. You know my husband, dave, was a veteran and, as we know, veterans are at least twice as likely to be diagnosed with ALS. In 99, there was a military medicine study that said it's more to six to 10 times more likely to be diagnosed with ALS, depending on your job. Our son, who is active military, has one of those jobs. So you worry about what this next generation is going to face, and Jenny said it so well you can't walk away from this fight when you've been so intimately involved in it.
Speaker 5:Yeah, yeah. One thing I do want to say is that, you know, I have a lot of friends that I have met years ago that don't stay in the fight, and I respect that too, and I know everyone here does as well. It's not for everyone and there's no shame or guilt or judging for those who don't, who are not able to do that, and that's just important to share.
Speaker 4:No, no, I love that. That's a great point, and I feel like even those of us that are living with ALS, I mean, for all the people that you see out there on social media, there's way more than that that you don't see and you know. Again, that's okay, like. However, you have to process, however, you have to live with it, totally okay. Yeah, good point, you guys are doing great, like. I love how you're just jumping in, absolutely perfect. Let me go back. Why doesn't everyone just go around introduce yourself so that the listeners know he's talking, since we have a full house here. Since we have a full house here, caroline, why don't you go first?
Speaker 1:I'm Caroline Shredway. I live just north of Manhattan and my sister Nell was diagnosed with ALS in 2009. She was the youngest of four siblings that I had five children in total. She was diagnosed in 2009 and when I tell you, she lived with ALS, she went on cruises, she wrote newspaper columns with her Toby Dynavok, but sadly we lost her in 2017. She was the mother of three children and the aunt to 10 children. She lived for eight years with the disease. She was on a ventilator.
Speaker 4:three years in she developed pneumonia and was on a ventilator for the rest of her life with ALS. Mm-hmm, that had to have been really hard, as a big sis for sure.
Speaker 1:Mm-hmm.
Speaker 4:Yes, yeah, okay, jill.
Speaker 6:Hi, I'm Jill Bratton and I live just northwest of Indianapolis, indiana. My husband, dave, was diagnosed with ALS in May of 2015. He was an Army veteran that served during the Vietnam era, did not see conflict in Vietnam, but served during that time frame, and he passed from his journey with ALS in January of 2019. We have three amazing kids that helped us immensely during that time. Those three kids have blessed me with six grandchildren, soon to be eight grandchildren. Dave got to meet one of those grandchildren. He absolutely loved our family, he loved adventure and we loved our life together.
Speaker 4:Okay, Jenny.
Speaker 3:Okay, composing myself here, I know I'm like I was starting to cry when you first got online, lori, and started talking. I'm like, oh, this is not going to go.
Speaker 4:Well, I know I'm like wait a minute. I didn't think this was going to be emotional.
Speaker 3:So my name's Jenny Gordwyer. I live in Seattle, washington. My husband, pat, was diagnosed with his ALS in 2005 and lived with it for eight years, passed away from his disease in 2013. He hated everything about ALS. He was type A personality and you know you do things right the first time and with ALS that doesn't happen but in spite of that he made the most of every day. He always said ALS wasn't going to define him and in the course of his disease we bought another boat, we got it ready to fish in Alaska and he set us up for living without him, which you know. I can't even imagine how he was able to do that with everything he was going through with his ALS. We have two kids, my daughter Brenna and my son Sean. They're 36 and 33. I have a beautiful granddaughter, blakely Jade, who's almost four, and it's been 12 years since Pat passed away and every morning I wake up stunned that he's not with me. We just miss him every day with me.
Speaker 4:we just miss him every day yeah, yeah, I know a lot of people have said to me that you know they feel like it's a bad dream that one of these mornings they're just gonna walk through the door like they were on a golf trip or um, you know, just hard to believe that's your reality. All right, tim.
Speaker 5:Hi everyone. I'm Deb Paust and I live outside of Chicago and my connection to ALS is that I lost Tim, my husband. We were childhood sweethearts. He was the love of my life and we were blessed with three great kids Brad, sammy and Jake. I am a grandmother of three and another one in about three more weeks. So that's me and Tim had.
Speaker 5:Al was this great guy who loved life, he worked hard and he played hard and he just wanted to have fun and that's what we did. We had a very nice life and we were just devastated, as everyone is when they get that diagnosis. But I have to say, you know, tim was a stubborn guy and he wasn't going to let ALS win and we had a bucket list that we worked mine and his and we really had some good quality time despite ALS. Yeah, yeah, yeah. So you know. So he's been gone for 11 years now and it feels like yesterday and forever all at the same time. And I also agree with what Jenny said is, like you know, she wakes up stunned and sometimes I I just can't believe that it happened and I feel like that sounds a little crazy, but I know my friends here understand that.
Speaker 4:Oh, you know I listened to you ladies talking about your children and your grandchildren. Anyone want to comment just on like how does that feel? I would imagine that it's such a blessing to obviously see your family grow, have that community, have that extra comfort and joy in your life, but yet I would imagine that you're also saying I wish they were here to see this. Or do you look at anyone and say I see my sister or I see my husband in you and you know, kind of get that daily earthly reminder of their spirit absolutely go ahead, jill, do you want to?
Speaker 4:go ahead. Everyone's shaking their hand.
Speaker 6:What a great, great question and what a great point, lori. It is such a bittersweet thing, I would say, for me and probably for all of us. Every grandchild that is born to our family has chubby cheeks and it was kind of known for his chubby cheeks and so we always say Papa sent chubby cheeks with this one, and you know the kids are so good about talking to their kids about Papa that they feel like Papa is still part of the family.
Speaker 6:And he is, of course, still part of the family. He may not be physically here, but he is still a big part of this family and it brings me joy to see his mannerisms show up in our kids and then show up in the grandkids, see how they resemble him so much and see how he is still part of this Bratton family and will always remain part of this Bratton family.
Speaker 4:Oh my gosh. Yes, absolutely yeah.
Speaker 5:Yeah, that is super sweet, Jill. I definitely see it in my three children and it's really a great joy. It's those ordinary experiences of a regular day. Yeah, that and yeah, they're just great reminders of Tim in the best ways, and sometimes not in the best way, because Tim was stubborn.
Speaker 4:And you're like and there he is again, yeah, yeah, oh, that's awesome. Anyone else jen?
Speaker 3:um, I definitely see pat in both my kids. They both have different qualities that were him I'm starting to. You know I obviously I did not know Pat when he was a young boy or growing up, when he was 25, I was 24. But as I watch Blakely, there are definitely some mannerisms that I see. And probably the most striking thing for me about Blakely is that Pat was born on April 14th, so 4-14. And those are kind of like our numbers, that anytime a 4-14 pops up we're like hi, pat. And it happens more often than I anticipate and usually at the most strange times when I'm really needing him, at the most strange times when I'm really needing him. And Blakely was born on August 28th and if you divide those numbers in half it's 414.
Speaker 3:And we all were like oh, she was born.
Speaker 4:If she couldn't be born on 41414,.
Speaker 3:She was born on 8-28.
Speaker 4:Oh my gosh.
Speaker 3:So I feel like Pat will be a part of her life for forever.
Speaker 4:Yeah, so that's super special, absolutely.
Speaker 3:Absolutely.
Speaker 4:Yeah, yeah, caroline, is there anything about your sister that kind of fueled you to be a part of this antique road show? Like you said, that she was really adventurous and you know, did you think of that when you decided that you were going to do the Tri-State track?
Speaker 1:Oh, definitely, Definitely she. Well, first of all, she would have been right there with us. She would have loved the idea that we were cycling for monies to go to research yeah, Most definitely. And secondly, she was I'm sort of the conservative one between the two of us and she would have been right there with the jersey, with the tutu, with loved being with a group of women in a college dorm. She, just she was the adventuresome one. She was a big equestrian and would drive those horses, those huge animals, around cross-country courses and around dressage units and between dressage units. And though I wasn't riding a horse, I was riding a bike. And when I was out there riding my bike, I thought you know, I'm one with Nell really.
Speaker 1:Yeah, I really did. She would have loved it.
Speaker 4:Oh's awesome. So let's talk about the antique road show first of all. How many ladies? 70, 60, 70? Wait a minute. Wait a minute, caroline. How are you? 70? You are jill. How old are you?
Speaker 3:I'm 62, jenny I'm 63 damn 61.
Speaker 4:Okay, you're all over 60, all right, so, and then uh, team captain jen.
Speaker 3:Yes, but in name only. All these other ladies did all the work.
Speaker 4:Okay, all right. All right, let's talk about the Antique Roadshow. So, for the listeners who are not familiar with the Tri-State Trek, it is one of the signature fundraisers for ALS TDI and it takes place in June and it is a weekend of cycling 200 miles in a weekend 100 miles on Saturday, 100 on Sunday. Tell me, ladies, you did not do 200 miles.
Speaker 5:No, they switched it up. They used to do a three-day trek that was 270-ish miles, and I don't know how many years they did that for, but in the last past several years they've changed it to a 100-mile course or a 30-mile course.
Speaker 4:Oh perfect.
Speaker 5:So you're looking at the 30-mile girls.
Speaker 4:Hey way to go. So you did 30 miles on Saturday and 30 on Sunday.
Speaker 3:Yeah, no, we did not do 30 miles on Sunday. We all accomplished our 30 miles on Sunday. We all accomplished our 30 miles on on Saturday. Deb actually did 44, because that's Tim's number. So she, she and a couple of her friends rode to 44. Sunday it was thunderstorms and raining and the roads were wet, and I'm a picky bike rider, so I decided not to ride on wet roads. Uh, just because you're not.
Speaker 4:Antiques are smart you're right, there we go. All that experience and wisdom have led you to very good decisions. I love it. So how did you guys even decide that you were going to get together and ride?
Speaker 5:I think it started last year I was riding, I decided I wanted to ride. And then Jenny's like well, if you're going to do it, I'm going to do it. So then we were a two-woman team and a lot of our friends were like you're riding, I think. People were like you're riding, you're you know, I think people were surprised we were riding, yeah and um. Then people were saying well, you know, we had a lot of fun. We were. We were really all about the connecting with the community, um, and and the snacks. They have really good snacks. They feed you so well on the track or on the track. And so we were all about we were just having fun. And people could see that. And so people were saying last year, you know what, I think I'm going to ride with you next year.
Speaker 3:Oh good, well, and I remember being at Caroline's rest stop and and you know we came in and we're, you know, having fun and eating good snacks and you know Caroline was, caroline was like I should ride, I'm like you can totally ride 30 miles, 30 miles, and so that kind of that kind of started everything. It's like everybody that we talked to, it's like it's 30 miles, you can do it.
Speaker 5:And we weren't even sore, like we didn't feel like we trained very well for it, and we were kind of nervous Like what if we can't and we could, so do it. And we had a blast, and we weren't even sore the next day. So we were bragging about it, weren't we?
Speaker 4:yeah, I think we were right, jenny yeah, you're like no big deal, because none of you are like big bikers, right? No, no, I mean maybe, maybe me a little bit.
Speaker 5:You know big, but I do it somewhat frequently yeah, and laurie, I mean laurie.
Speaker 6:When you listen to jenny and deb, how can you say no, maybe me a little bit. You know big, but I do it somewhat frequently. Yeah.
Speaker 2:And.
Speaker 6:Laurie, I mean Laurie. When you listen to Jenny and Deb, how can you say no, I mean they are. They're like come on, we'll have this great time, we'll be, it'll be wonderful, and I'm like okay.
Speaker 1:I'm in and I kept telling Jill what a wonderful experience this was. I've been. This was my fifth track, I think, but I had always been the person at the rest stops. I've been through for those years, and and Jenny's right, when they came in and I saw how much fun they were having, I said, geez, I can do that, I can do that. So that's how we were born, and we came up with some very good fundraising ideas too, and currently, you're at $28,420.
Speaker 4:So you have crushed your goal. So I don't even care what happened on the track, but you guys are killing it here with your fundraising goal and, of course, all of that money goes directly to ALS TDI for the research that they're doing to try to find effective drugs and treatments for ALS. So that's great and I love that. You guys are showing that. I mean, you're showing so many things by coming together and doing this and showing that age doesn't matter. You know in this season of life that you can do something and in some cases, do something new, something physical, something independent. You're showing the power of community and coming together within your team and within the entire ALS TDI community.
Speaker 6:Lori I would love to kind of speak to that. You know, when Dave was diagnosed we had a phenomenal clinic here in Indianapolis and we became good friends with those people and we really felt supported and loved and we had a support community that came together other people with ALS and I made connections with the wives of those veterans and it just felt so good to be part of that community. And I feel like our ALS community is like that. When you're diagnosed there are people that come beside you and support you and love on you and communicate with you and then when your loved one passes it's almost like a door is shut. You know you are not part of that integral ALS community anymore. You have your own grief that you're dealing with. You have your own difficulties that you're dealing with and I find myself looking around and saying now what?
Speaker 6:Where is that wonderful community that I loved so much and just felt like family. And then I found these ladies and I found people that knew exactly what I was going through and wanted to support me through that and knew they were going through the same thing and we had that in common. And that love just exudes even more when you get together with these people anybody who has lost a loved one to ALS. And so there's a community out there for people who have lost their loved one, and I don't want them to feel left out in the cold. I don't want them to feel like they have to do this alone. That's what we're all here for.
Speaker 4:Yeah, I love that.
Speaker 5:Lori, you said all those really great things. What we were demonstrating as our team. But my hope and I kind of think we do this is we show other people who are caregiving now that the after ALS there's joy, and I hope we're showing that we're surviving this. There's joy and I hope we're showing that we're surviving this. We're surviving the after ALS. Even though it's hard, we are creating joyful moments and we're doing good to the community.
Speaker 4:That's a great great point.
Speaker 1:You're here, definitely and honestly. It's almost like an adult sleepaway camp this weekend, the weekend up there in New Hampshire, and it's just all these people we've said it, but all these people who know exactly what happened and what you've been through. I this year met a woman who had lost her sister and it was such a lovely time that we spent together, you know, a couple hours just sitting there talking, remembering our sisters, and it's just lovely, you know. Yeah, yeah, it's a wonderful. Like Jenny spoke on Saturday night, they have an open mic night when anybody can go up and speak, and Jenny put it very well that there was a whole lot of love under a big tent that we had our meals and had our programs in, and it was just lovely, full of love.
Speaker 5:And it was palpable, Like you could feel the vibe. As soon as you get on the campus there's a vibe and it's really special.
Speaker 3:Yeah, and I think one of the other things too is that you know most of the people that do the track have a connection to ALS. Sometimes other fundraisers that we do or go to there are people there that are supporting you, that but they haven't lived through the whole journey. And I think at the track because most everybody is there for the same reason, you know they've been affected and they want to end this disease. And I remember last year when I walked on, like Deb said, when I walked onto the campus, or was it Carolina, I can't remember. But you're just all of a sudden there's this fantastic vibe that you are not alone and people understand what you've been through and we're all here just trying to do the best that we can and and support research and support those families who, who might not have the ways or the means to help in any way. And it is, it's a temple of love.
Speaker 6:Yeah, and if I could add, just quickly add to that too, the Halas TDI group is amazing. Every person who works for ALS TDI, I feel like, is there. Every person who I hadn't even known came up to me this is my first year, this was my first year Came up to me and hugged me and said why is it taking you so long to get here? We're so happy to have you here and I'm like wow, these people are amazing.
Speaker 1:Yeah, and you're riding your bike right beside research scientists, who quickly left me in the dust, but they're riding right there with you. Yeah, it's wonderful.
Speaker 4:Yeah, and that's great. And, Jill, you said something that struck me about you know, you have this community and then afterwards you were like now, what kind of thing? And you know, I've been in this community living with ALS for 21 years, so I have seen that and I have seen so many caregivers like where do I go? I was really involved in the community, not only taking care of my person, but how can I help? And where do I go? And like for us and our local support group I don't know if it's still this way, but it was If you had lost someone, they wanted you to go to a different meeting.
Speaker 4:They wanted you to go to like a caregiver's meeting or a legacy meeting, because they didn't want to. They didn't want it to be a downer. Or like to scare people in a support group by like saying, oh, my husband died, which is unfortunate, but I have always thought it was really important. Like saying, oh, my husband died, which is unfortunate, but I have always thought it was really important. Right next to me I have a wall you can't see it because of the camera but full of people that I've lost. And they're not just like people that I know their name. They're dear friends, and so, to this day, I continue to bring together those people that have lost. You know, we all do it at a Mexican restaurant or we'll do it here, but we, they're family. And now, because it's been so long, some of them are getting remarried, some of them have a boyfriend of them are getting remarried.
Speaker 4:Some of them have a boyfriend and it's kind of funny to see because they're kind of like unsure to tell me. You know, I'm like hey, you're living your life, you found love again. That's amazing and it's just different for me because I've been here so long that I'm seeing that rotation of life from those people that you're talking about and to have any kind of support and love out there is really, really important.
Speaker 2:So, yeah.
Speaker 6:Yeah, yeah, I think grief is a funny and difficult thing and, however, you need to manage it and get support for it is extremely important. And yeah, your life goes on, whether you want it to go on or not, your life goes on and it changes in different ways, but that doesn't mean that you're over grief. You're never over grief. You learn how to carry it with you, and so to have people that understand that, whether they're still in the ALS fight or after they've lost their loved one, they're in the ALS fight. It's important to connect how is most meaningful for you?
Speaker 5:Yeah, I think part of what keeps me afloat and keeps me like I said, tim was all about having fun and I think I do it for I do for myself, I do it in even more. So I think that's my driving force to living fully, because Tim couldn't and Tim lived like he was dying, before he was dying he just had that zest for life and did all the things and you know I tagged along on that. But now I try to channel my inner Tim and find my happiness and it. You know I'm up and down a lot. You know I have PTSD, depression and anxiety and it fluctuates for me, but I really am trying to live fully and he's my inspiration for that. Yeah.
Speaker 3:Yeah, to follow up on your point, deb, I think it's also important for people living in the after ALS that you know, yes, we go out and we have our fun and we find our joy, but there are moments where you do have depression, where you do have anxiety and PTSD, and it's okay, we all go through it. And you know, a lot of times you're sitting there going, oh my God, no one does anyone even know what, what, what this like, and finding these group of women and and the ALS community. You know again, you realize you're not alone. The things that you're going through everybody goes through at some point and hopefully that will bring others comfort when they're, when they're going through their issues, when they're going through their issues.
Speaker 4:Yeah, and you know you guys didn't just lose your person yesterday, you know, so to say that it's still an occurrence, you know, depression after years that have gone by and then that is okay, is really reassuring and it's like emotions are okay and ups and downs are part of life and I love that you all continue to talk about your person. I feel like when I was younger, if someone passed away, you didn't talk about them.
Speaker 4:You didn't say their name because you don't want to upset the person, but I feel like, as a society, you know we need to talk about the person. I talk about my mom all the time, all the time, and so I hope that people talk about me when I go, like my kids tell their kids. I think it's really, really important.
Speaker 5:Yes, laurie, our people are unforgettable, and so are you, but I don't think we have to worry about them talking about you for a while. No, no.
Speaker 1:And Laurie on the back of our jerseys. We are peddling for all of our people and everyone affected by ALS. That was on the back of our jerseys, so we kept them all with us, yeah.
Speaker 4:You guys are amazing.
Speaker 5:I just want to go back to what we were talking about before, about having each other. We all are on Zoom at least once or twice a week together through our advocate work and we can just tell, like nobody's. You know, if someone's not sharing that they're struggling. We know each other and we can see it. And if I'm not myself, I have no game face. And you know Jenny's calling, she's like all right, what's going on, like you don't? You know she can just tell, and vice versa with all of us. We know and you know we'll send an encouraging text or I'm here for you and I mean that's just another um. You know it's a, it's an after blessing that we share in our friendship. You know it's an after blessing that we share in our friendship. We have each other, yeah, yeah.
Speaker 1:Yes, Just last week was the anniversary of my sister's passing and it was so lovely. I got so many messages, texts from people you know, just saying I'm thinking of you, Know that you're with me, and it was. It was just beautiful. This is how do we describe our community. This is the worst community that you want to belong to, but it's also the best, because ALS really is the worst disease. But it's the best because there are so many wonderful people in it.
Speaker 4:Oh, I agree for sure, I see that every day.
Speaker 3:Yeah, I was just going to say I. I remember that one of your questions was how did we, how did we get our team name? Yeah, and so the lovely Miss Caroline actually came up with it. We, we were talking with caroline and she had decided she was going to join, and a couple weeks later, deb and I got this email from her. She's like I've come up with the most fabulous name for our team. And we're like what, what? And she said antiques roadshow for als and we're like, of course, that's our team name caroline, you were beaming from new york and I saw it from chicago.
Speaker 5:I could, she was.
Speaker 1:You were just happy as can be with that name, and we are too yes, yes I love it and I tell you what it brings a smile to everybody's face when they saw us. Yeah, yeah, and Lori, we just didn't wear bike jerseys and shorts. No, no, we had our. You know, because we were antiques, we had our pearls on Deb.
Speaker 5:Deb, deb, deb. I had my mother's pearl earrings, my grandmother's pearl brooch, and then Jenny and I went to Goodwill and we got the most antique-looking purses and sweaters.
Speaker 4:Oh, that's great, I love it and the tutus and the tutus and the tutus. Absolutely yeah. Well, if I ever get to the trek in person. I will join your team because now I am 60. So I feel like I qualify for the Antique Roadshow now. When I was 59 a month ago, I would have said uh, no.
Speaker 5:But Now, when I was 59 a month ago, I would have said no, but so we just we had antiques ranging from 40 to 70. So you do not discriminate against young people.
Speaker 4:They just have to be fun.
Speaker 4:Yeah, yeah, ok, I love that. So for next year, anyone that's listening if you want to be a part of the Antiques Roadshow, you want to be a part of the ALS TDI Trek, definitely. I'll put a link in the show notes to ALS TDI. You can sign up and get connected with them, learn all about it, how you can get involved. And if you absolutely cannot bike but you want to be at one of the stations, there's a lot of opportunities for you there as well. Yeah, I know that I only have I have four of you here, but I know there were other people that were on your team and in person biking with you. Yeah, tell me about who else was on your team.
Speaker 5:My friends from Chicago, Bill and Trudy Falk and Don and Scott Fransgrove and they joined me when I rode the first time in 2018. And they kind of saw pictures online and saw how much fun Jenny and I had. So they're like we're doing it next year and they're saying they're going to come back, so they travel a long way. And then I'll mention my cousin, Allie McGrath. So that's part of our team and I'll let the other girls share the other ones.
Speaker 3:Yeah, well, I'll talk about Lori Larson Heller, and her person was Jim, who has been part of the track for I'm not sure how many years, but she's always there as part of the cheer team, and so she was our antiques cheerleader and just a great, great part of our team, and we appreciate all she does to keep us pepped up.
Speaker 4:Heck, yeah, that's an important role.
Speaker 6:Absolutely.
Speaker 1:Yeah, and who drove with you from the Midwest?
Speaker 6:Yeah, tina, tina Lee, who joined. She lost her husband, brent, two years ago. She lives just south of me in Indiana and when she all of us get together on our after ALS Zoom calls on Wednesday and Tina met all these ladies and she's like I want to be like them, and that's a great example of someone who just lost her loved one and has found solace in this group. And so she came with me and my cohort, mandy Bailey, who is amazing. She's our youngest antique but she is always up for a challenge and to spend time with all of us. She lost her stepdad, fred, and she was part of the team. Unfortunately was not able to join us because of a death in the family, but was there in spirit and cheered us on.
Speaker 1:Jenny mentions. A great thing about the trek is that. You're right, laura, you can ride, you can be at the stations handing out food the rest stops but you can also be a cheerleader. Yeah, and you can do road support. I saw so many cars drive by me just being road support. Are you OK? Do you need anything?
Speaker 6:No, Nice, sorry. One of the questions asked was a word that we thought of and I'm going to share a word. I felt like this trek was redeeming. I felt like you go through so many difficult things in ALS and you also go out and you educate as advocates and you are on patient advisory boards and you do as much as you possibly can, but this trek is for you and it is redeeming the love and the support that you're engulfed in when you step out of the car and onto that campus and people rush up to hug you and meet you and greet you and spend the next two days with you. Just total redemption, yeah.
Speaker 5:I can jump in with my word, and it is well I couldn't just pick one. But my word is healing and love fest.
Speaker 3:And I will say my word. Two words are resilient joy.
Speaker 3:Yeah, very good, resilient joy yeah enjoy, yeah, and mine would just be fun, yeah, fun, fun. Yeah, if I can just again give a shout out to alstdi and the fabulous, fabulous event that they put together, and there is not one thing that they will not go the extra hundred miles for for you to have a successful ride. And, yeah, it's just a a fabulous event staffed by fabulous people. And, yeah, I know that that through the hard work that the scientists do at alstdi, we will find a treatment, or 20, and a cure.
Speaker 4:Yeah, absolutely. And to my listeners if you have tuned in before, you might have heard me talking to Fernando, who's the lead scientist there. Other scientists have done a entire episode on ALS TDI, so you can go back and look for those as well. And yeah, and even if you can't get in the track, you can do it virtually. So I finally wrapped up my virtual component, doing 200 miles in 25 days, which was kind of insane because I did it over vacation. Insane because I did it over vacation and I've never like put a goal and challenge out there while I was on vacation.
Speaker 4:So it was really good for me and I was like walking or biking however I could, if I was home for a few days and can get on my incumbent bike or find a bike in the gym. So I was just trying to figure out how I can log that. So, yeah, you can be a part of it virtually and you can design your own trek however it works for you. So you ladies have been amazing. Before I let you go, I want to ask you all what you're dying to tell us. Caroline, what are you dying to tell us?
Speaker 1:I am dying to tell you that. It may not seem like it, but there's a whole lot of life after ALS.
Speaker 4:Perfect Jill. What are you dying to tell us?
Speaker 6:Well, caroline stole mine, but I'll come up. I am dying to tell you that, although grief will now live with you forever, if you've lost someone to ALS, you are welcome to join our community and we are here for you, no matter what.
Speaker 4:Thank you, Jenny. What are you dying to tell us?
Speaker 3:I'm dying to tell you that within this community, there are people who are here to support you and love you through every step of it, and you are not alone and you are always welcome to join and you're always welcome to step out when you need to take a break. We're here for you at any point during your journey.
Speaker 4:Good point, Tam. What are you dying to tell us?
Speaker 5:I'm dying to tell you that, although the aftermath of ALS is hard for those of us left behind, there are incredibly thoughtful, loving and supportive friends and organizations who know and understand at least part of your journey and, although the loss and the grief never goes away, there are true joyful moments in and out of the ALS community. So, like the trek, especially going, you know, to one of the many fun things that you can do and joining the Antique Roadshow is one example and everyone is welcome, all ages.
Speaker 4:Yeah, example, and everyone is welcome, all ages. Yeah, oh, thank you so very much for being here today, for sharing your experiences, but, most importantly, for continuing to really be here for all of us. I really appreciate you all.
Speaker 1:No, Lori, you're so incredible. You're amazing, Lori, and you know, from the minute I met you, that was the first thing you told me Was thank you so much for staying in the fight. That was the. I'll always remember. That was the first thing. You told me, that I wouldn't be anywhere else.
Speaker 4:It's the one thing that brings me to tears every time, like I, I just feel it in my bones.
Speaker 6:You are a shining star in this community and you bring so many people together and you've done such stellar things and we are all indebted to you for everything that you do, and we love you, girl.
Speaker 4:Aw, love you all back. Yeah, I appreciate you all sacrificing.
Speaker 5:This was so much fun, lori, it really was. We love you.
Speaker 4:What I absolutely love about these women is that they remind us that, no matter your age, your skills or your grief, you still have something powerful to give. Yeah, look what they are giving each other every day and the hope that they are giving all of us who are living with ALS. Whether it is riding 30 miles, 300 miles, whatever they are out there, in this season of their life, they're all over 60. They are making a difference. One mile at a time, one hug at a time, one encouragement after another. Thank you again, caroline, deb, Jenny and Jill. Keep moving forward and sharing all the love and experience that you have with our precious community.
Speaker 4:It is not too late to support the Antiques Road page, and you can find the show notes on Facebook and the website, both at I'm Dying to Tell you podcast. Hey, if you are new here and you want to stay connected, you can find me pretty much everywhere on social media, all at I'm Dying to Tell you podcast, facebook, twitter, instagram, linkedin and even TikTok. Okay, thank you so much for being here. Until next time, know you are loved and not alone. Thanks for listening.
Speaker 2:Thank you for listening to our mom. Make sure to visit her website at imdyingtotellyoupodcastcom, where you'll find photos and show notes about this episode. If you liked this show, please subscribe to the podcast and share it with a friend. Thank you.