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Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Lindsey Vonn:
So, I think just having the information, knowing that it exists, trying to spread the word that ALS needs more support, I think those are the important points to keep in mind and what I hope that people take away from our conversation. And the more we can support each other through this journey, the better.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host, Jeremy Holden. May is ALS Awareness Month, a time to take stock of momentum in the fight to create a world without ALS, a time to shine a spotlight on the people living with the disease and the researchers, advocates and care professionals working to make ALS livable for everyone everywhere until we can cure it. It's also a time to honor the lives and legacies of loved ones who have lost their battles with ALS along the way.
When Lindy Krohn Lund lost her one-year battle with ALS in 2022 at the age of 70, she left a void in the lives of her family and her community, including her five adult children and three grandkids, who mourned their loss while also celebrating Lindy's spirit, her strength, and her tenacity. In fact, one of her daughters, Lindsey Vonn, an Olympic gold medalist and one of the most decorated downhill skiers of all time, cited her mom's strength when she was inducted into the US Olympic and Paralympic Hall of Fame in June 2022.
Lindsey Vonn:
To achieve great things, you must have great people around you because no one gets to the top alone. So, I stand here today with those thoughts in mind and I would like to dedicate my induction to everyone who's helped me get here, to the team who has stood by me through thick and thin, to my family for sacrificing so much without any hesitation.
But mainly I would like to dedicate this to my mother. She's having her own battle right now with ALS and she has taught me so much about strength and character, and it's because of the example that my mother set that I was able to overcome whatever obstacle was thrown at me. Thank you, Mom.
Jeremy Holden:
I recently caught up with three of Lindy's children, Laura and Karin Kildow and Lindsey Vonn, to talk about Lindy's legacy and the importance of raising awareness of ALS. Lindsey, Laura and Karin, thanks so much for being with us this week on Connecting ALS.
Lindsey Vonn:
Great to be here.
Karin Kildow:
Thanks for having us.
Laura Kildow:
Thanks for having us.
Jeremy Holden:
Yeah, sure. I'm very much looking forward to bringing this story to listeners. Before we get into it, I want to just give you all an opportunity to introduce listeners to your mom and tell us a little bit about your family's connection to ALS.
Laura Kildow:
Our mom's name was Lindy Lund, and she was 70 years old. She was 69 when she got diagnosed with ALS, on August 26th, and she died a year to the exact day, a year later. So, she was a strong and athletic, intelligent mother to five kids and she was always a positive role model. She was a lawyer. She was a drug counselor, and there was really nothing that could stop her. She was just a light in the world. And I miss her.
Karin Kildow:
Yeah. And one of the [inaudible 00:03:42] I would say is that she definitely overcame many battles in her life. She had a stroke when she was having Lindsey, so she lived with a slight disability, but she never let it hold her back. And so ALS was definitely a doubling down of unfortunate things, but she just took it with stride and kept her positivity her whole life through and through, no matter what came her way.
Jeremy Holden:
Laura, you mentioned strong. It's a word that came up in some of the research I was doing, some of the profiles that I've come across about your mom. And Lindsey, I think at one point you said she was the strongest woman that you had ever met. So, for all of you, how did you see that strength? How did she tap into that strength during her battle with ALS?
Lindsey Vonn:
I think my mom has shown strength her entire life, but especially so when she was diagnosed. It really hit her hard when she first learned about it, but she took every day, and we keep repeating her sayings, "Today is another great day." She appreciated every moment that she had and she never let it get to her. Obviously towards the end it became very difficult, but she took it in stride. Always strong. While her stroke and ALS took so much of her physical strength from her, she never wavered in her mental strength.
I think that's one thing that we have all learned from her, whether consciously or subconsciously throughout our lives. And I think just the ALS battle, everything became more apparent to us how strong she really is, was. And that has definitely guided me specifically in my life and how I've approached my injuries. I always thought of my mother every time I was injured because I had the luxury of working hard and coming back from whatever knee surgery I had, but my mom did not have that luxury. And I think she just always gave us that perspective and that's definitely, as I said, guided me throughout my life.
Laura Kildow:
Well said, Lindsey. To me, her strength was her humility. She really, for the people suffering from ALS listening in, she didn't see feeding tubes or wheelchairs or bipap machines as a negative. She was really used those as optimism of how she could make her life a little bit better.
And then I just also wanted to say that it was a detriment, her strength at times. Because with ALS, it's a physical fight, not a mental one, and her mind was writing checks that her body couldn't cash. And I think that's important to remember that no matter how strong you are, just have a little bit of that humility that and have the people around you caring for you that they can understand that you're, you're not going to have the energy every day and to moderate that.
Karin Kildow:
Yeah, and I would say to add on to that, her positivity every single day, we really did in an odd way make every single day fun and happy. And when we were in the hospital room, we were still joking. She was always making it fun and making it at adventure. I think that, yeah, really came through to me. And again, even when her body wasn't able to keep up with what her mind wanted to do, she would always be thinking of things she wanted to do or try to do.
And that was the important part as caregivers to just help her under like, Hey, let's try to do one little thing today and maybe one little thing tomorrow versus trying to do everything she wanted to do every day, but she never wavered in making it fun and positive and something we were all like adventure we were going through together. It wasn't like, oh, I can't travel the world anymore. She was like, let's get together and watch Natural Geographic or something.
Jeremy Holden:
I want to come back to that point on caregivers in a moment, but I'm curious, what did you all know about ALS before her diagnosis was confirmed?
Lindsey Vonn:
Honestly, nothing. And I feel pretty ignorant to say that we all did the ALS challenge and I knew we were raising money for ALS, but I didn't actually know what ALS was. And now having gone through this with our mother, I think I feel that I didn't do what I should have done with ALS ice bucket challenge, I didn't do my due diligence and look into what I was supporting and educating myself. And now when my mom was sick and we would say she has ALS everyone's, oh, we hope she gets better.
And I can't blame them because I was in the same position. I didn't understand either. But I think that's one thing that the three of us really want to do is to help educate other people to raise awareness and to help other caregivers that are dealing with this and just educate others in ALS and the process of caregiving because we wish we would've known more and it was our mother's wish for us to help others through her battle as well.
Jeremy Holden:
You mentioned caregivers and Karin, you talked about this just a moment ago, and as listeners are all too well aware, ALS does affect the whole family, family members often taking on the role as primary caregiver. How did your mom's diagnosis impact you?
Laura Kildow:
Yeah, it's definitely from the second you get the diagnosis, it becomes part of your life every day. Something that you're always thinking about, trying to plan for, trying to research, and it becomes a big part of your life. Laura was definitely the primary caregiver. She was living in Minnesota where my mom was, so she was on the front lines of going to the doctor's appointments, hearing all the information, and I would say she was amazing.
And they're always, I think comes to be somebody who's the main caregiver, who's got the accumulation of all the knowledge, all the updates, everything. And she also is great at sharing those with everyone from aunts and uncles, people who are in state and out of state. And I think I watched it become such a heavy load to carry to be the one always there. And so every caregiver needs a village of other caregivers to help, and I think that was, we luckily have a lot of siblings, a lot of extended families, so we were able to divvy up some of the things like, you're going to go visit this day and you're going to go to this appointment and help make it not all on the one primary caregiver.
So, I think that was a really big strength in us being a team, making Google docs, making shared calendars so everyone knew what was going on and could try to help take some of that off of Laura. So, Laura can probably speak more to the weight of being the primary caregiver. Oh yeah. And I think we did a great job of all taking a turn in it and helping mom when we couldn't, but it is hard to, you do need one person there all the time.
And I would say it takes a toll on your life. I took time off of work and I think I stressed about it 24 7 and it was always on my mind. And I would say the one thing to other caregivers I could share is just don't go, don't worry about 10 steps ahead, just worry about two or three because my biggest regret was just not relaxing with my mom when I was with her.
I was worried about did she have everything she needed and is she okay, what can I do? And I wish I just could have just sat next to her and had some quality time because those 10 steps ahead sometimes we never even got to the voice banking and the wheelchair accessible everything and sometimes you just don't make there.
Laura Kildow:
Yeah, I, and that was the hardest thing for me with ALS in general is no doctor could really say, okay, this is going to happen next and this is the pace at which it's progressing because every single person is different, which was very frustrating at times because you're like, what should we do?
And they couldn't ever really quite tell us. So, I think it was really important to just, we definitely all had a mentality of every day at a time, free every day as a lucky, great day that we get to spend together and yeah, don't go too, go far down the line and also don't live in the fact, I think I went through a couple weeks of living almost as if it was the end and thinking of all the worst case scenarios.
And then I realized we don't know what's going to happen, so it's better to just take every single thing in stride and try to fix the next problem versus trying to extrapolate out everything you're going to need at every point.
Jeremy Holden:
You mentioned the need for a village to support caregivers, to support the person living with ALS. I'm curious, Laura, I'll throw this to you first, but curious for everybody's take on this. How were you able to connect with the Al S community for support along the way?
Laura Kildow:
I started, I think the week after my mom was diagnosed with ALS support groups for caregivers. And it was the best thing I did. What I say there helped you phenomenally throughout the process, probably not, but I think that's the only way I got by is looking forward to those groups is just a way to get it off your chest and share it with the people who know what you're going through.
And also you get a different perspective of your situation could be better or worse than someone else's. Nice to just share it with someone. And they were great with everything that we needed. Wheelchairs, hospital beds, we needed it the next day and it was there the next day. ALS association was 10 steps ahead of us. So, really use, I would say just use Al s association as much as you possibly can.
I think they also have respite care for caregivers and to use that and just a great resource and a great community. You just feel like you're a part of something. And I know that that was a big thing for my moms too. I think they send a quilt and she just felt at least I know what it is and at least I'm with other people who are going through the same thing. So, definitely it was a great help.
Jeremy Holden:
You've made the decision to share this story. I know you've talked about it in other forums individually and collectively, but for folks who are going to learn about ALS maybe for the first time or think about it deeply for the first time since maybe they took the ice bucket challenge on account of you sharing your story, what do you want them to know about the disease?
Lindsey Vonn:
I think that I just want people to know that there are resources available and I think to Lauren and Karin's point, I think we were focused on 10 steps ahead and what could happen. And I think it's just so important to be present and in the moment and take it one step at a time. I think it's important to know what could happen and potential possibilities of what you would need for that.
But I think staying present is so important and what I want, what I guess what I hope people take away is just ALS needs more funding. ALS needs more acknowledgement. Less is a horrific disease that affects more people than we think. It's always, no one really cares about it until it affects someone that you know, and I'm the first to admit that, but as I have gone through this with my family, there's a lot more people that have ALS than I realized.
And I think it just opens your eyes to how people and what people are dealing with. And a friend of mine that I grew up skiing with lost her father only a month before we lost our mother. A good is suffering from it as well. And I think I've become a, when we have all become resources to different people going through ALS and as caregivers what to do.
So, I think just having the information, knowing that it exists, trying to spread the word that ALS needs more support. I think those are the important points to keep in mind and what I hope that people take away from our conversation and the more we can support each other through this journey, the better.
Laura Kildow:
Yeah, I would just add on just that it is a rare disease, but again, as soon as you have it affect you, all these people come out of the woodwork and everyone seems to know somebody who's affected by it.
And I think the hardest part is there is not a ton of cures or drugs or anything that's really out there right now that are making a big impact on it.
So, I feel like the research, and I know it's exciting because there are a few drugs and studies that are happening that are close to finding something.
So, if we could just get to that point and there was something that could be done to feel like, okay, we're going to be able to fight this a little bit, I think is a huge hope and would change a lot of people's lives. So, I hope that people keep pushing on the research and keep pushing on next steps to find a cure or a at least help slow it down in some way that I think that was a hard part about ALS and some small change can make a big impact on people.
Spreading awareness is the really important thing in that even a little bit of progress in the research that we're doing it would give the people with ALS so much hope and even just three months more of their family is big.
Jeremy Holden:
Before I close things out, I'm going to do the interviewer cop out and say, is there anything else that you want to share that we didn't get to or that you think is important for listeners to take away from your experience from your mom's legacy? And just any closing thoughts?
Lindsey Vonn:
Maybe this isn't a good closing thought, but just something that I wanted to share is that I think people should really utilize hospice more. I wish I had known about hospice earlier.
I think we could have used that as a resource for my mother several months before we did. I think everyone views hospice as you're basically, you're about to go, but that's not the case at all. And they offered so many resources from music therapy to having pastors come in and talk with my mom. They had massage therapy, they had all of these resources that were available that we had no idea.
And I think we were searching for things through doctors and through the care center she was at, and no one had those resources except hospice. And so I think knowing that's an available to you I think is so important. And again, it's about quality of life and that's what we wanted to give our mother was the best quality of life possible and in however much time that we had with her.
And I think that as a resource that is very underutilized and can be a huge help. So, I would recommend even if it's not the end, give your, whoever you're caring for, give them as much support as you can and that sometimes means hospice.
Laura Kildow:
Yeah, I would also add on, these are just tips and tricks I guess, but since ALS is rare and not super well known, I think by a lot of people when you're in the hospitals, when you're talking to BiPAP people really be an advocate because as the caregiver or someone who's going through it, you probably know a lot more than sometimes like a nurse.
So, we found a lot of huge things of just double asking and triple asking. And my mom had the BiPAP machine and it was really hard for her, and I was like, she's very strong woman, and this looks very painful. And they're like, nope, great. It's good. They set it up and they walked away and we called back many times and then were like, this doesn't seem right and advocated for her.
And then they ended up coming in and they're like, oh, settings were wrong. This wasn't right. Fixed it and it changed towards the end. That was a huge thing. And just advocating for it and asking one more time is really can be powerful. So, don't just take everyone's word for it, like double ask and triple check.
Lindsey Vonn:
And I would say one more thing. I just want to say thank you to all of the support that we had from our doctors and the medical staff that did help my mother, especially Dr. Lyle Jones from the Mayo Clinic. He was such a huge help to us and to my mother, and we leaned on many people for support and Dr. Jones was a big supporter, so I would be remiss if I didn't thank him for the help.
Jeremy Holden:
It's an important point. I think that finding specialists who have experience in ALS from the folks that we've talked to on this program seems to make all the difference in the world. So, I'm glad you're able to find the right care team who is able to help you through that process. Karin and Laura Lindsey, thanks so much for your time today. Thanks so much for sharing your story and really looking forward to bringing this out to listeners.
Laura Kildow:
Thank you so much. We appreciate the opportunity to share our story and wish everyone the best who's going through this right now. I hope that mom's story and our story gets out to a lot of people and helps others. So, thanks for listening. Thanks for having us and thanks to everyone who helped us through it.
Jeremy Holden:
I want to thank my guests this week, Lindsey Vonn, Laura Kildow, and Karin Kildow. If you like this episode, please share with a friend. And while you're at it, rate and review connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is Citizen Race Car Post-Production by Alex Brower, production Management by Gabriela Monte Keen, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.