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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.
Knowing that I still have my voice, I still have a slow progressing case, knock on wood. I was like, I think it's my responsibility to share my story. And once you see someone like me who could be your daughter or your sister or your friend or your mom, depending on your age, you can start saying, wow, this might actually affect me, so I'm going to care a little bit more.
Hello everyone and welcome to Connecting ALS. I am your host Jeremy Holden. On a June night at Oriole Park in Camden Yards this summer, Brooke Eby peered toward the batter's box, shook off a few signs from her catcher and tossed out the ceremonial first pitched to Oral Bird. It was part of ALSs awareness night in Baltimore, and it was just one of the countless things Brooke has done to raise awareness of the disease since her diagnosis in March 2022 when she was 33 years old. If you get a chance, make sure you check out her recent appearance on The Today Show and her conversation with Lorri Carey on the, I'm Dying to Tell You Podcast and please find her on social media where she uses humor to raise awareness and funding for ALS research under the handle Limp Bruise kit. We'll share links in the show notes so you can track her down. So this is definitely one of those weeks where the less you hear from me the better. Brooke, thanks so much for being with us this week on Connecting ALS.
Thank you for having me.
Yeah, looking forward to sharing your story with listeners. I was just reading The New Yorker piece last week about the fight for AMX 35, and you reportedly told The New Yorker that you were not what your doctor's picture for ALS. What did you mean by that and what needs to be done to change what people think ALS looks like?
Yeah, I think most people picture, I guess I can only speak for myself, but I always pictured it as affecting much older people, largely male. I think it's really because the two people, Stephen Hawking and Lou Gehrig that are the faces of this disease are older, white male, maybe not necessarily older, but I think even they were considered young to be diagnosed at the time. So I think we just have this idea in our head of what someone with a ALS looks like, and it's not a young woman who seems very much alive. So in terms of what we can do about it, that's a problem I'm trying to tackle with doing stuff on social media. Just putting my story out there, making sure that everyone in my network knows that ALS can affect anyone at any time and hoping that the story gets shared over and over again.
Yeah. I want to get to your social media platform and how effective that's been in a moment. That comment in The New Yorker about what ALS looks like in the picture, that was from the doctor's perspective, and I know your diagnosis took some time. Just walk me through that process, and many listeners have gone through the lengthy diagnosis process, but what was that like for you?
Yeah, it was a four-year process, so it was a very long diagnosis. For me, it started in 2018. I noticed I had a limp. I just couldn't seem to push off my left foot very well. It was slapping on the ground and I assumed it was some sort of workout injury. I was like, wow, I must be really in shape if I am starting to limp from a basic workout. But then I had my sister and her husband who were both doctors, take a look and they both agreed it was something called drop foot, which I hadn't heard of, and that sort of kicked off a very long diagnosis process. I went, first I got a bunch of MRIs because they thought maybe I pinched a nerve. Then it went into X-rays, then it went into CAT scans, then it started going into blood work and lab tests.
Then we started getting into more of the neurology specific tests like EMGs and genetic testing. But it really took four years for my presentation of ALS to show as ALS. In the early days, it was just denervation in one limb, but nowhere else. So it couldn't be considered progressive really until it started affecting a second limb, which it didn't do until 2022. So I think the combination of my slower progression and the fact that I am younger, a woman I think all led us to more hope that it wouldn't be ALS, but ultimately ALS stopped hiding.
Yeah. Yeah, and it sounds like from how you've talked about this story and a little I know about what you've said that you had a sense before the doctors said, and it's a common story that we hear from folks who've talked to on the show.
I was really hoping that they would prove me wrong. I don't, in the first probably three years, I thought I was scot-free, mostly because the genetic testing came back clear and just lack of education on my part. I assumed it's not in my genetics, I don't have it. Later to find out only 10% of cases are genetic. So there was some learning to be done on my side, but it wasn't really until the last few months where I started being like, okay, this is, everything I've searched for with slow progressing ALS, I'm starting to match these, so when is someone just going to come out and say it? We had a couple doctors say it as options, but seemed tough to want to give that definitive diagnosis to someone. And I understand that. I mean, you're telling someone a death sentence in a sense, so it's a hard task, but ultimately my ALS clinic doctor was like, it's looking like ALS.
You mentioned social media earlier. I can't speak to the overlap between connecting ALS listeners and TikTok users, but you've been very effective at using that.
We're going to find out.
We're going to find out. Absolutely. But you've been very successful at channeling the power of social media to tell your ALS story. Why is it important for you to share your story with people?
Yeah, this answer I think is changing and evolving. In the early days, it was really frustrating for me to tell people about my diagnosis. Maybe frustrating is not the word, but it was really upsetting. Every time I would tell someone I felt like I was just ruining their day. Here's a very heavy weight for you to carry for the rest of the week, just no way to prepare someone for telling them that news. And so after I told my close circle of friends after that, I was like, I really don't want to keep having these conversations anymore. And so I started toying with the idea of doing it on social media and just I think it's easier somehow to tell 1000 people versus telling five people individually. It started off as helping me be able to tell people and talk about it. I'm a lot more comfortable talking about it than I was a year ago, but now the goal is really become awareness and really galvanizing people to be eager to help the ALS community.
I think we have these other diseases out there that have huge groups of survivors. We have cancer survivors or people living with MS, and then Selma Blair gets to go on Dancing with the Stars and talk about MS, and everyone can see her and say, wow, someone who looks like her can get MS. With ALS, it's such a quick death sentence that most people only have a matter of months or a couple years. They don't have time in that short period to do anything except for take care of themselves medically. They don't have time to advocate and share their story all the time.
Knowing that I still have my voice, I still have a slow progressing case, knock on wood. I was like, I think it's my responsibility to share my story and hopefully people will start caring more. It's such an easy thing to look away from because you're like, I don't want this. I don't want to hear sad news. This isn't happening to me, so I can just turn away. But once you see someone like me who could be your daughter or your sister or your friend or your mom, depending on your age, you can start saying, wow, this might actually affect me. So I'm going to care a little bit more.
I'm going to come back to some of the impact of your online activism and engagement in a moment. But something you just mentioned struck me. You talked about the sharing your sad story, and I love something that you said. You were recently on the Today Show, and during that interview, Savannah Guthrie, the host, made a quip about the sixth sense, and you said, I see nice people, and I think that captures so much of your public persona and the joy and laughter that is foregrounded in what you put out into the world. And you were part of that New Yorker article and they described you as a sportive goofball where do you,
I had to look up, maybe I'm the only one, but that article took me two hours to read because it was so many SAT words.
Yeah, The New Yorker,
[inaudible 00:09:16].
The New Yorker, yeah it makes you smarter by the end of most articles, doesn't it?
Oh my God. I can't believe people read that for leisure.
But I guess I'm curious, where do you draw that positivity while living with ALS?
I think my approach is just in life has always been humor. I'm the youngest of three kids by a lot. Six and eight years older than I am, so the only way I could even enter into a conversation was usually through making a joke because I rarely understood what they were talking about. And so I think that's always been my default mechanism for approaching anything is just making jokes about it. And so when I was diagnosed the first couple months, I was in such shock that I almost, it was just survival. But as I started coming out of that, I think my natural inclination to making jokes about it just kicked in and I was like, there's so many comical things that happen when you get a diagnosis like this when you're young. Imagine trying to date when you're like, by the way, I'm using a cane now.
I might have a wheelchair in a week. Who knows? There's just so many things that I guess I find them funny. I'm not sure everyone does until I put them in a funny light. But I also think making jokes about it makes people more comfortable asking questions. Like I said before, I don't think a lot of people want to watch, they want to turn away when they hear about ALS. That is natural human instinct, just this is devastating. I don't want to consume more content about this. So if I make it a little bit lighter, I find that people are more eager to ask questions and to have conversations about it and hopefully carry on conversations outside of just TikTok and Instagram.
You mentioned dating while living with ALS something again, you also talked about that with Savannah Guthrie on Today. A couple months ago we had the opportunity to talk to some of the women that are involved with Her ALS Story, and I know you're part of that community as well.
Yeah.
And one of the things that really jumped out to me was the power of performing a community of people who are going through a similar lived experience, and that's not just living with ALS. Young women living with ALS may have different concerns about maintaining intimacy with their partners that maybe not everyone in this space has. What do you draw from being part of that community of Her ALS Story?
It's been amazing. I found them I think a month into my diagnosis and I'd initially been referred into a support group that was local to me through the ALS Association through my clinic. And when I hopped on for the first time, it was me and mostly older men and I was like, did lightning just strike with me? Why am I the only young woman here? There's some exceptions, there's some younger people, but it is mostly steering towards older people. After that, I went on a quest to find if there was anyone else like this, like me living with ALS and luckily found that group. I'm so grateful it had already been started before me because I just got to hop right in and start reaping the benefits. But it's nice. There are questions. Imagine me going into my local support group and being like, guys, how do I date?
Yeah.
I feel like a lot of them would be like, we've been married for 40 years, we have no, we don't even know what dating apps can do,
Right.
These days. And so it was really nice to have another outlet for me to go to just to ask the weird young people questions that only a certain group can relate to. I still am in both support groups, though I love them both. I shouldn't mention, that the local one has been super helpful in terms of local resources, but the Her ALS Story, girls are like my people.
And you've been now a year since your diagnosis was confirmed?
It was March of last year. So yeah, we're 15 months.
So if somebody were to come up to you and ask that question, a younger person say, how do I, because we talk about making ALS livable, and I think a lot of times we think about that in terms of treatments and access to care services, but I think there's a component of some of the things that bring us pleasure in life, the joys, whether it's listening to music, playing video games, creating music, dating. If somebody were to come to you and new to their journey and say, Brooke, how do I date while living with this disease? What advice would you give that person?
Oh my gosh. I don't know that I'm, I was never the person my friends would come to for advice about anything because I would always make a joke out of anything they were asking for. But the dating aspect to me was really intimidating, especially on dating apps, you're one swipe away from a much easier option than I am. So I think there's a lot of insecurity I think that pops up when you're on an app like that. And I think that's probably outside of ALS too, just having your face be a yes or no is you have to get a thick skin. But yeah, there are girls in the group who are newly married. There are girls in the group who are single and dating. Some are divorced because ALS can take a really big toll on a relationship.
And I think it's, in my mind, only do it if it's additive to your life because for me it has been. I started dating someone last year and it's been much more additive to my life as opposed to a stressor in my life, which I know sometimes relationships can be. Yeah, I like your concept of making ALS livable outside of just the treatments. I've never really thought about it like that, but there are things like support groups that make things a lot more livable, so I'm going to keep that one. I like it.
Good. I'm glad I contributed. We've talked a lot about kind of the joy and the levity and the laughter that you bring to what you put out into the world. That being said, we all have bad days. So what is your life hack to get through the bad days and coming out on the other side as a sportive goofball again?
Yeah, Sportive. I don't know that I have fully bad days. I definitely have bad moments. So for me, that usually means I fell. Usually that's like where my spirals begin is if I fall because I can't get up. And then you start thinking, I am helpless. What am I supposed to do? I'm just going to be living on the floor for the rest of my life. I think those are the moments where ALS just is always reminding you that it's moving. It's not stagnant. So I just let myself be sad honestly. I think it's normal to get upset and angry at having ALS. It does feel unfair. And so I think it's okay to wallow in that for a little bit. I think my tactic has always just been trying to let myself be sad and then maybe throw on a happy show and just forget about it and just escape.
Escapism is underrated. But those first couple months after I was diagnosed, those were three full bad months. Not just bad moments, but bad months. And I think the way I came out of that was through my friends just pushing me to live my life again. They're like, look, you have this diagnosis, but all they did was put a name on it. You've been living with these symptoms for years, so let's just try to make the best of it. And there were a couple times where they had to really push me, like a wedding I went to. They had to push me to go and go with my walker and dance with my walker, but they got me out of that sad thinking into being like, okay, maybe I can make this purpose for my life.
We'll share a link in the show notes too that Today Show interview because they had some great footage of that wedding, some B roll and some photography and people can really see pictures of what it is you're talking about. We talked earlier about your social media presence and raising awareness, and I know you recently raised a significant amount of money for ALS research. So what gives you hope that we are on the right track in the fight to make ALS livable and eventually find ways to treat and cure it?
I think living with ALS, you naturally have to be hopeful because it's the only option. There are three medications that I am able to take today, none of which are really moving the needle by any means. It's extending life by matter of months or by a percentage, but nothing is out there that's like stopping symptoms, reversing symptoms. And so I think the data helps me stay hopeful in the sense that one of those three medications was approved in 1995. Then there was nothing until, I think it was 2017, I want to say with RADICAVA, but then RADICAVA and RELYVRIO were both approved in 2022.
So if we're looking at data, there's clearly been an increase in research being done. Nothing was done until 95 and then it was one. And now in the last year there's been two more, actually more than that if we're including the genetic medications too. So I think it's clear that research is trying, I don't fault anyone. I think it is a really hard problem to solve, and there's a ton we don't know about it, but if we look at the data, I think there has been more of a focus on it. And then there's an upcoming adcom for Neuron in September, so hopefully there'll be one more medication to add into our list of options. But yeah, I think a lot of it is honestly somewhat delusional hope, but I think that's just as helpful.
So what's next for you?
So I'm still working full time. I work at Salesforce during the day, and then at night I mostly focus on ALS stuff. So I do, I make videos. I try to post a ton of content. I think in terms of what's next with the content I want to make, I'm trying to get more people involved in the fundraising aspect. So you mentioned I started a fundraiser at the beginning of June and we blew it out of the water. It was incredible. My original goal was 25K. We hit that before I even went to bed the night I posted it,
Wow.
And I was like, okay, this is amazing. I did a video every day in May, and I think because I gave, as soon as I asked people to give something back, so many people were jumping in. So we ended up raising it again and again. We eventually got an anonymous donor that said, if you get it to a 100K, we'll match it. And so I posted that video again. The next morning we hit a 100K. So people are there, they want to help. I think the trouble is like, how do you help a disease that requires so much research and so much scientific help? And so I'm just trying to control the piece that I can, which is rallying people, getting them to donate, getting them to call their congress person.
I also want to start trying to get more celebrities and high net worth individuals talking about ALS, because I think more of them need a platform to stand on, and I think this could be a really good one. So honestly, it's just like wherever the wind takes me when it comes to social media, I'll wake up with an idea and hope that it works and post it. But yeah, just like living my life beyond that.
I, for one, look forward to continuing to watch it unfold on TikTok. But Brooke, thanks so much for your time this week.
Thank you so much for having me. This was fun.
I want to thank my guests this week, Brooke Eby. A quick note before we close. August is ALS Advocacy Action Month. The ALS Association Advocacy Team is empowering people all over the country to meet with their lawmakers during congressional recess, to push for public policies that will make ALS livable for everyone everywhere until we can cure it. Follow the link in the show notes to the Association's Advocacy Action Center to learn more. If you like this episode, please share it 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 CitizenRacecar, post-production by Alex Brouwer, production Management by Gabriela Montequin, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.