Transcripts are auto-generated.
Courtney Townley 0:00
Welcome to the Grace and Grit Podcast made for women who want their healthiest years to be ahead of them, not behind them. Join your host Courtney Townley right now. As she breaks down the fairy tale health story, you have been chasing all of your life, indispensable action steps and lasting change.
Courtney Townley 0:28
Hello, my friends, welcome to the Grace & Grit Podcast. This is your host, Courtney Townley, thank you for being here.
Courtney Townley 0:34
Now, for those of you who are regular listeners of the show who keep up with every new episode, I want to tell you from the outset of the Podcast today, that on May 22, which is just a few days away from when this episode drops. I’m hosting my five day Consistency Code Crash Course.
Courtney Townley 0:51
This course is the very thing that I asked all of my private clients and all of my Rumble & Rise members to go through first when they start working with me. So if you are someone who has ever considered working with me as a private client, or becoming a Rumble & Rise member, you can think of this as sort of initiation week. This is the gateway to all of the work that I teach.
Courtney Townley 1:17
And even if you never work with me on either of those levels, you never become a private client, you decide that you never want to join Rumble & Rise, here’s what I can promise you will walk away with from this course, you will walk away with less overwhelm about what to do next, in order to move your life to higher ground, you will be very crystal clear on your next action steps. You will walk away with strategies that you can employ on the days that you don’t feel like showing up to do the work that you’ve called yourself to do. And let’s be honest, there’s a lot of those days.
Courtney Townley 1:53
And most importantly, you’re gonna walk away with this four part framework that you will be able to recycle over and over again throughout the rest of your life, to make sure you are traveling in the direction you intended to go. So I know that sounds like a lot of big promises, but I assure you, you will walk away with all of that and more. So you can get yourself registered at graceandgrit.com/crashcourse.
Courtney Townley 2:22
Now today, we are going to talk on the show about health in the face of dis ease. Because health and disease often feel at odds with each other like the two can’t coexist. And yet they do all the time. Dis-ease or disease sucks. No one’s going to argue that and it’s a fact of life. Sometimes dis-ease is going to show up for you in the form of a relationship challenge. Maybe a financial hardship, the loss of a loved one.
Courtney Townley 3:01
And sometimes for some people, it looks like an actual diagnosis that you never could have seen coming. So a literal disease. And today on the Podcast, my friend and client, an amazing human. Claire Schulz Bergman shares her experience of being diagnosed with ALS at 52 years young and how she is still pursuing health in the face of that diagnosis.
Courtney Townley 3:39
In this interview, Clare and Clare generously shares the road that led to her als diagnosis. She shares how her life journey prior to the diagnosis is really helping her now to move through this. How she is coping with uncertainty. And why she’s decided really hard, who she wants to be in the face of this and so much more. Claire is such a remarkable human. I am so grateful to know her. And I want you to know her. If you or someone you love has been handed an unexpected hardship as of late. You’re gonna really love this show. So let’s get into it.
Courtney Townley 4:31
Claire, welcome back to the Grace & Grit Podcast.
Claire Schulz Bergman 4:34
Hello.
Courtney Townley 4:35
How are you?
Claire Schulz Bergman 4:36
I’m good today. Thank you. Okay, good.
Courtney Townley 4:39
Now, this isn’t your first time on the show.
Claire Schulz Bergman 4:41
No, and it’s so funny because I never thought I’d do a Podcast and now here I am again.
Courtney Townley 4:46
I know and having you Isn’t this your third time? Yeah, yeah. So good. So for listeners who may not be aware, you came on once, I think to talk about your experience inside of Rumble & Rise exclusively. Yep, you came on to talk about atomic habits because you are actually hosting grace and grits first ever Book Club, which is going amazingly well. Yes, yes. And on that note, I’m just going to do a plug right here and right now, because this has just been an awesome experience for the people attending this book club. It’s been an eight week journey. And you in the fall are planning on tackling emotional agility by Susan David. Yeah. So I know people who are longtime listeners, just that might really pique their interest, because it’s a book that we talk about a lot on this show.
Claire Schulz Bergman 5:34
Yeah. And I also plug it I recommend that book a lot to clients in my therapy sessions. And I just think it’s a really good book for anybody who is interested. So absolutely good.
Courtney Townley 5:46
Absolutely. All right. So tell listeners, because obviously, not everyone has listened to the previous episodes that you have been on. So let’s just refresh or tell people for the first time who you are. Sure.
Claire Schulz Bergman 5:56
So my name is Claire, I am from Madison, Wisconsin. And I am a member of Rumble & Rise, and I am a therapist, and I’m a mom of two adult children and I’m a wife of 30 years. So yeah, I’m
Courtney Townley 6:16
an avid athlete.
Claire Schulz Bergman 6:18
I’m an avid athlete. Yes, yes. A yogi. Yep. I my yoga teacher. I teach spinning. Yeah, I’ve been in the movement world with sports and running, swimming, biking since I was in third grade. So yeah,
Courtney Townley 6:36
yeah. So movement has always been a big part of your life. And I think that’s a big part of this conversation that we’re having today. Yeah. So maybe share with listeners also how we met? Because yes, you came into Rumble & Rise, which for anyone who may not know that is my membership community. And I think you’ve been a member in there for a year and a half, maybe a little bit longer. Yeah. But what brought you into that space?
Claire Schulz Bergman 6:58
So I was thinking about that a little bit. And so I reached out to you after I completed Ironman in 2021. Yeah, September of 21. And I was feeling a little bit lost. I always had goals that I was really moving toward, I’ve done several long distance bike rides, several marathons, half marathons, all of those types of events, endurance events, events are my love. And so I had finished Ironman, I was having some issues with my body, my body was not feeling like it was normal. Moving along, normally, I was in a job that I felt was very complete, and I didn’t know how to get out of it. And that was causing a huge amount of stress in my life.
Claire Schulz Bergman 7:50
And so I started to think I started listening to your Podcast, and I just really resonated with the message that you have that health is multifaceted. And then all of the really amazing strategies and just information that you have it was it was stuff that I had heard before, not all of it, some of it was new. But it was also like I needed to hear it again. And so then I reached out and we did private coaching. And I really feel like you and this community have brought me back to myself. And that that feels like the beauty of coaching and the beauty of being in this community is that we get reconnected to who we really are underneath all of the noise that’s going on outside of us. So thanks for that.
Courtney Townley 8:41
Oh my god, thank you for trusting me to kind of walk alongside you through that, because it’s been nothing but an amazing journey. So you came in, and I want to circle back to this, obviously, you know, because there were some things that felt off about your physicality. Yeah, but I remember in the early stages of our coaching, there was a lot of conversation around body image. Right that you were really wrestling with that. Do you want to speak to that a little bit?
Claire Schulz Bergman 9:07
Yeah, body image has been an issue for my whole life, I think ever since I’ve probably ever since puberty, literally. Just the messaging that comes across from society about how a girl and then women should look and how you know, it just I heard it and I internalized it and so I it’s been an issue for my whole life. And so it’s also been like having a having an Inner Mean Girl standing on my shoulder and telling me what she thinks I should do and all of the shoulds which I actually think is a swear word. I’m connecting the the strategies and mind, mind work thought work that I learned in This community or that I relearned as well, yeah, really helped me think differently about body image issues. And then this whole diagnosis on top of it has helped me, although it’s not gone, I have to say, even after this diagnosis of ALS,
Courtney Townley 10:20
Let’s, let’s talk about that for a second. Because I think it’s so interesting that you know, the body image issues, if you will, which I’m putting in quotation marks in case you know, because not everyone’s watching this video. It’s a habit, like, we have made it a lifetime habit to hyper focus on the physical self, especially externally, what it looks like, how to shape it, how to mold it, all the things. And like any habit, when we start changing behavior around that for the better, the old patterns don’t just go away. Right? We weaken them, right? We give them less attention. They’re not as strong as those neural pathways aren’t as strong as in our brain, but they’re still there. And I think this is so important for everyone to remember, regardless of what the habit is that any listener may be listening, maybe wrestling with right now, that nothing is wrong with you, if your old patterns don’t completely disappear. Right, right. So I would imagine that on some level, this is going to travel with you. Right?
Claire Schulz Bergman 11:21
Yeah, and especially because and we can go backwards to talk about the ALS diagnosis, but this disease will attack has been attacking my muscles, so I don’t look. And I mean, somebody can look at me and go, you look like you did, you know, two years ago or whatever. But when I look in the mirror, I can notice that one arm is smaller than the other because that arm doesn’t have strength in it anymore. And I have this is maybe TMI, but I have a little cellulite in my arms where I had muscle previously. And so there’s, it is a practice to look when I see myself. And I think this just happens with aging too. Like we feel younger. And when we look in the mirror, we’re like, who that heck is. So so when I see myself in the mirror, I, that Inner Mean Girl can come out really quick. And I have to remember to shut her up, put her in the corner and just, you know, see myself for for who I am actually, I’m sort of what I look like.
Courtney Townley 12:27
Yeah, and this is where all that self coaching comes in, right? Like realizing where your brain immediately wants to go, and then pivoting it to the place that is more useful to you. All right, so you kind of let the cat out of the bag. So let’s backtrack for just a second. When we started working together, you had you mentioned already on the show that there were some things that were feeling off physically. And I remember this really distinctly I think you had told me that there was some maybe tingling or challenges you were having with your right hand. You were having it looked into. And your doctor had told you that it might be one of two things. Is that right? That’s vaguely what I remember. Yeah. Yeah. And those two things being what?
Claire Schulz Bergman 13:10
Yeah, so um, that actually started I started having, I started having cheat my my right hand started feeling weak. And then my right arm started feeling weak while I was training for Ironman, so I I turned 50 and 2020. And I was going to do Ironman for my 50th year, and then COVID happened. So I ended up doing it in 2021. So training for two years in July of 2021. I had spine surgery on my neck because my right arm weakness, they thought that it was just that were pressing on my spinal cord, okay. And then, six weeks later, I did the Ironman, which I would not recommend to anyone to Ironman six weeks
Courtney Townley 13:55
after surgery, brilliant.
Claire Schulz Bergman 13:58
For anybody listening, not a good idea. But then it didn’t get better. And the doctors were saying, you know, this surgery should take care of it. It should you should get strength back in your arm didn’t get better. So I was till I went to so many tests, and I was told that I might have something called multifocal motor neuropathy, which oftentimes is misdiagnosed as ALS, ALS, but it’s treatable. So every three weeks I would get admitted to the hospital and I would get infused six hour long infusions for this disease called Mmm. After seven months of doing that it didn’t work. And so the doctors said that they believe that what I have is ALS.
Courtney Townley 14:44
And so you ended up going to Mayo Clinic correct to get your formal diagnosis. And they diagnosed you with ALS specifically because I do believe you told me it’s a specific type of ALS.
Claire Schulz Bergman 14:58
Yeah, it’s a it’s a limb onset rather than bulbar onset, which is the throat and swallowing muscles, I believe. So limb onset tends to be more slowly progressing. So let me just back up to ALS amyotrophic lateral sclerosis otherwise known as Lou Gehrig’s disease, otherwise a 10 attention given to it through Tuesdays with maurey. That’s what more he had. And the disease basically affects the nerve cells so that it’s the messaging, they’re dying. And then the messaging is not getting to the muscles. And so all of the ball of voluntary muscles are eventually affected. And basically, they stop working.
Claire Schulz Bergman 15:46
So at this point, the prognosis for people who have typically progressing is two to five years after diagnosis. For a limb onset, or more slowly progressing, it can be longer than that. And they won’t tell me how much longer than that. The doctors describe it as a life shortening illness, which I actually think is was probably very helpful to the how I’ve processed it. Since then, I’ve I mean, it’s a terminal illness, basically. And I think hearing that in the beginning would have been very difficult. Yeah.
Claire Schulz Bergman 16:24
So right now my right arm is affected, my writing is affected fine motor skills, I have some progression in my left arm, my breathing is fine, my legs are fine. My heart won’t be affected, people usually end up passing away when they’re when their lungs stop working, and their diaphragm stops helping them breathe. So none of that has occurred yet, which I think is also why I can talk about this so openly. Yeah.
Courtney Townley 16:57
Let’s talk about why we’re also having this conversation. I think that you and I, even before this diagnosis, we’re having conversations about health in the face of disease, and even dis ease, right, because life is disease. I mean, it’s just there’s always going to be something that we’re rumbling with, sometimes that’s a massive diagnosis. Sometimes it’s marriage trouble. Sometimes it’s financial problems, right. It’s so many things. And I think, especially in the realm of health, you know, the sort of as, as people think of it, they often think of it as the absence of disease. Right? And I just I’ve always challenged that right, you know, that like in workshops that I teach and, and webinars and things like that, I’m always saying that really, that health is how we face it. And so can you speak to that a little bit just on sort of your own thinking around maybe that notion of health in the face of disease and what that might mean for you now?
Claire Schulz Bergman 17:59
Yeah, first, I think, you know, I’ve been really open about having this diagnosis. And sometimes I feel very vulnerable about it, I think, What crap, my, my, my business is out there to everybody, because I’m just talking about it. But I’ve also had moments where people, like, let’s, for example, Lance Armstrong, had cancer, and he talked about it after he had it. So people talk about the story, after they’ve been through the process, and they’ve learned all the things and then they can come out the other side and tell tell everyone how it was for them.
Claire Schulz Bergman 18:41
And for me, the other side of this is a life well lived. I mean, I’m gonna have this until I die. And so my, my mission and the reason not I don’t know if Michigan’s right word, but the reason that I keep talking about it is because I just, I want people to know that whatever it is that they’re going through, probably somebody else is going through something too. And if you talk about it, you might connect with somebody and there might it allows people to think about their situation a little bit differently.
Claire Schulz Bergman 19:17
There’s no way that I’m ever going to pretend that this isn’t a really scary diagnosis that is serious. But I also know just like you said that other people are going through things that feel like they’re terminal, and feel like it’s like oh my gosh, the end of the world my husband just died or my you know, I’m getting a divorce or whatever and, and if we can face it and talk about it, and also think about it a little bit differently. I think that it can help walk us through the process of it.
Courtney Townley 19:57
You know, I have to say this, I don’t cuss on the show. Very Often, but it’s I think it’s this is one of the shittiest things ever that you’re having to rumble with this right. And I wish so much that we could all take it from you. That being said, it is your reality, it is your curriculum for whatever reason, right. And I also, you know, you are in such a unique position, to go through this in the way that you are. And I’m not saying that it’s necessarily easier for you or anything like that. But your entire life has sort of been readying you in a way for this ultimate rumble, in terms of what you have done for work, and the pursuits that you have had in the realm of sort of education and coaching and supporting others. So will you speak to that a little bit about how maybe the work that you have done prior to this diagnosis has been helping you?
Claire Schulz Bergman 20:56
Yeah, yeah, I, so I’ve been a therapist, mostly working in well, starting out working with people who had HIV and AIDS, so that I know that that’s, you know, huge diagnosis right there. But then moving into the adoption world and watching low birth parents walk away from the hospital without their baby and, and, and then watching the other side of that with families being built. And it’s what is Glennon Doyle calls it beautiful, it’s a beautiful, brutal thing that’s happening to people in both of those situations.
Claire Schulz Bergman 21:38
And so it’s watching people make decisions that are aligned for their authentic self, like the decision that feels right for them in in any of these situations, living their life by design, basically, we talk about that a lot. That I’ve been, that’s the work that I’ve been doing with people helping them kind of find their truth, and then move forward in it. But then even more, five years ago, my dad died suddenly. And that was a horribly traumatic time.
Claire Schulz Bergman 22:14
For me in my life, it was very unexpected. And I think that that prepared me for this too, because I feel like going through that personally, really has taught me that there’s just nothing that’s guaranteed. And so we we take what’s put on our plate, and we move through it with as much grace as we can, knowing that it’s not always going to be graceful, I use a lot of swear words, often around my house, I drop things multiple times a day, and if anybody’s in my vicinity, they might hear some comfortable light or colorful language. Um, but but it’s just kind of relax, relaxing the expectations, and moving forward with what is, you know, in the way that feels the most aligned with who I am as a person, which is, I would rather be loving than fearful.
Claire Schulz Bergman 23:18
I would I want to move forward in my life with an open heart and, you know, connecting with people and sharing stories, and, you know, talking real talk, than being afraid that, you know, somebody’s gonna think something of me because of, you know, whatever I might say, or however I might look or whatever.
Courtney Townley 23:39
Yeah. Well, I see you as such a helper to I mean, long before any of this right that you have spent your lifetime raising kids helping others through their own turmoil. And in a way, like you were saying earlier, the sharing, although it feels vulnerable, it is also a way of normalizing the human experience that we do have to talk about it. Yeah. And so I, you know, I know for I’m so grateful, because I know, You’ve been very vocal in the community about the things that you’re wrestling with, which I think really puts a lot of things in perspective and helps another woman sort of look at her challenge through a different lens. Yeah. And that’s what conversation does.
Claire Schulz Bergman 24:24
Yeah. And I think I think either people have said to me, Well, mine, my challenge, whatever it is, is nothing compared to yours. And I just don’t agree. I mean, I have this, you might have that. Yeah. In in the realm of let’s compare challenges, like who wants to do that game? And so really, it’s about what, what are you facing right now that you could maybe tweak the way that you’re thinking about it or do something that feels like you have some control in the matter and you No, doesn’t matter what somebody else’s challenges this is what you’re facing today.
Courtney Townley 25:04
100% 100% Yeah, I have a friend years ago who hurt her son passed away, I think he was 13. And she was sitting in a restaurant by herself and really just in the thick of, of grief. And this woman who she didn’t really know, but it was kind of a, you know, she knew her around town came in and, and sat down for a minute. And the woman had no idea what she was going through. Like, I don’t think she had she had any clue. And she was just going on and on about this difficult customer where she worked. And, you know, and my friend in her grace was just like, that’s her paradigm. That’s her real right now, that is her rumble, you know? So yeah, I totally get what you’re saying.
Claire Schulz Bergman 25:45
And then also, I think that sometimes people want to spare me, they’re like, you know, I’m like living ALS. And so obviously, think about it every single day, multiple times a day. And so sometimes maybe talking to me about your unhappy customer is like a relief, you know, so I think yeah, I think we don’t even realize that when we’re talking to people like maybe actually, I can talk about this, because, you know, the thing that seems bigger might, you know, there might need to be a little relief from that. So
Courtney Townley 26:24
I love what you said earlier, too, about just kind of like deciding, right, like, we talk a lot and Rumble & Rise about life by design, and really deciding your standards for life and, and then deciding hard on how you’re going to show up and dedication to that. So you have decided hard to be a person who is more committed to love than fear. What else
Claire Schulz Bergman 26:48
to do? Well to, like I said, In the beginning to get the Inner Inner Mean, girl off my shoulder, I named her, by the way, like chip on your shoulder, flick her off every once in a while. Yes, I might have to borrow that. So yeah, so like, you know, choosing the thoughts that I want to live by, and not letting the ones that are actually just habitual come in. But then also, and this is where the multifaceted health comes through.
Claire Schulz Bergman 27:22
As you know, it’s the mind, it’s the it’s doing things that actually bring me challenge, which meant having to leave the job that I had been doing for almost 20 years, and now doing something else that I feel much more love, and I feel much more challenged by. But it’s also paying attention to what I’m putting in my body. Like, you know, I’m not 100% Great about all of it. But I’m also just like, making choices to be as healthy as I can be physically going to sleep on time, drinking water, eating whole foods, all of those different things. Because, you know, I can only think that that would be helpful.
Courtney Townley 28:11
Yeah. And isn’t that interesting from like, where I met you? Where it was kind of like pursuing those things? Not exclusively, but in part, because we want to look a certain way. Oh, well, yes. Right. Now, such a radically different place where it’s in dedication to something so much bigger. Yeah. Yeah. So you mentioned Glenn and Doyle earlier, and that word beautiful. And so obviously, I don’t think we need, like, there’s a very common understanding of the beautiful the brute the brutal part of this. Right. But what has been sort of the, what had been the bright spots? Like what what are you learning about you or about connection or about life itself? By going through this?
Claire Schulz Bergman 29:00
Yeah, um, I think so. This is so funny, because I’m a mindfulness coach, too. I mean, I have a certification in that. And so like, mindfulness should really come easily to me. You know, as I say, like, jokingly, it comes probably more easily to me than some other people. But, yeah, so one of the things that I have really noticed myself doing is being really present like, in I would have to intentionally be present previously. And now I feel like I’m catching myself being present.
Claire Schulz Bergman 29:36
So this morning, I was out on my bike. And I was just like, I think I would have been in a different mindset. I would have been thinking about things and instead I was just enjoying the day I was watching the birds go by it just as a different I’m showing up differently, I think in my life, and then I don’t know if I can win 100% Sam resting more. That was, that’s been an issue for me for it’s I like to keep going, but I am being better to myself when I feel tired. I am saying, you know you’re tight and actually having the disease is probably helping me be a little more kind to myself when I’m tired because I know I have to rest.
Courtney Townley 30:25
It’s so interesting, because I feel like so many of the things that, you know, were sort of the issues at the beginning, have really sort of been just pushed off into the fire. And I’m not saying that they aren’t somewhat an issue anymore, but like the job you finally let go of it. Yeah. Right. That stuff is an all consuming. Yeah. And you know, and I know, you’ve talked to me before, like, now I really get to become sort of a yogi, because that is the practice of, of presence and acceptance and all the things that are certainly this invitation.
Claire Schulz Bergman 31:02
Yeah, yeah. And so, you know, there’s still we talked about at the very beginning, how some of these habitual things are still here. And being in a yoga class, teaching yoga is totally different. I love it. And I feel really connected with my students, it just I love it, being in my yoga class, is pretty difficult for me, because I used to be able to do all the things, and pretty really easily. And now it’s hard for me to I can’t do a chaturanga, I can’t, I can’t lower down and push up and push back up. Didn’t even hold it even is hard for me to hold my arm over my head for a period of time. And so it it has caused, you know, I, I feel that envy at other people who are able to do things really easily. And then I have to remind myself that, you know, this is where I am right now. And and I think I said to you before, like, this is the most yoga that I’ve ever practiced, because it is standing in what I can do now and breathing through it and being kind to myself.
Claire Schulz Bergman 32:16
And, you know, I remember being in the room when the doctor told me that I had ALS. And the feeling of wanting to just plug my ears and run out of the room was really strong. But sitting there and listening to that and asking questions, which thank God, my husband was there, because I don’t think I heard anything after you know. But that also is the practice of yoga. And I think that also is how we are healthy in our lives is that we are able to just be asking for help when we need to get help, which is you know, having my husband come with me to these appointments, but also just like, be in the thick of it without running and screaming from the room. Because we know that we can handle whatever is put on our plate, even though at the moment it probably doesn’t feel like
Courtney Townley 33:14
it’s such a powerful thing to remind everybody of. And so on that note, you know, for someone who might be listening today to this, who is obviously in their own rumble and who isn’t to be honest, I mean, everyone has something. But specifically, people facing their own diseases in life, like what would you say to them?
Claire Schulz Bergman 33:37
You know, I think it’s really important. If there’s something that is going to be a change, and maybe there’s a loss in it. So a health diagnosis or a job change or a relationship ending or something like that empty nesting kids going to kids going to college and then and what that’s such a, I remember that feeling, it’s such a joy now what happens there is there is some kind of benefit in recognizing the grief and the loss that’s happening. And feeling that as much as as possible because feeling it instead of pushing it aside by numbing by, you know, whatever else we can choose to do is the thing that’s going to help us get through it.
Claire Schulz Bergman 34:27
And then finding the person or the people that are supportive that will be there that you can talk to that aren’t afraid to talk about your rumble with you that will talk really plain talk with you ask questions and you know, aren’t afraid about it. I think that’s really very helpful. And then just knowing you know, we don’t have control in any of it. We have, we have some kind of guides that we can give to ourself with the way We take care of our mental health and our physical health and spiritual health. But, you know, we don’t really have a say on how things are gonna go on our life. Yeah. Keeping that in mind, I think.
Courtney Townley 35:13
So where is the research with ALS? Like we don’t have a cure? Obviously, there is treatment, like, is there other treatments that you’re engaged with right now that helped to maybe delay the onset or?
Claire Schulz Bergman 35:27
Yeah, so I’m not really sure. I don’t know how close they are. There’s no cure. There are three medications, that all start with the letter R, so don’t ask me, because I get confused about all of them. I’m on all of them. They are super one is not expensive. The other two are very expensive. One of them is $10,000 a month, if you don’t have insurance, there’s some pretty good programs out there. So I actually only pay for one of the medications, which is like $8, it’s really not expensive. They’re not easy to take, and one of them is actually really awful.
Claire Schulz Bergman 36:15
And so besides having to take, I never took medication prior to this, I took some Advil if I had a headache, but that was about it. Yeah. So besides having this periodically, the meds will be delivered to my door. And then I have to take this very horribly poisonous tasting medicine twice a day. And the treatments are they can’t tell you for sure if they will help. And if they do help you, they will only probably help you for a period of three to six months. So there’s they’re not great, the treatments aren’t great. And so if anybody out there did the ice bucket challenge that created that helped fund one of the the medications that I’m on, so thank you. But yeah, there’s there’s just not not a lot out there.
Courtney Townley 37:13
Yeah. So let’s talk about because you’re in the throes of doing a fundraiser right now for ALS. And this so we tell listeners a little bit about that.
Claire Schulz Bergman 37:23
Yeah, so back when I thought I had multifocal motor neuropathy, I met a man from New Zealand who was doing a bike biking fundraiser to raise money for that. And I was want, I was jumping on that bandwagon, because distance cycling was what I want to do. And then when I got the diagnosis of ALS, I was like, I was going online to the ALS Association to see what fundraisers I could do. One of the fundraisers is climb up a mountain on the Tour de France in the south of France. And I was like, that’s what I’m going to do. And then my husband reminded me that I really hate climbing. And so we decided that probably, I would not be happy the whole time.
Courtney Townley 38:10
What a wise guy.
Claire Schulz Bergman 38:12
Yeah. So we decided to create our own fundraiser. And so we and some friends are cycling from Madison, Wisconsin to Minneapolis, the last week of July, through the first week of August, it’s a distance of 350 miles. We’re going to take a week to do it. And we’re going past the Mayo Clinic where I get my care and I’m probably delivering doughnuts or bagels or something to them. And then and then ending in Minneapolis where I was born and raised. So Madison, where I live now to Minneapolis, where I was born and raised via Rochester where the Mayo Clinic is,
Courtney Townley 38:56
and the funds will go to the ALS Association.
Claire Schulz Bergman 39:00
Yeah, so we’re asking we’re trying to raise 35,000, which feels really grand, it’s a lot of money. But that funds six months of a research fellow doing research on treatment and cure. And so all of the money that we raise will go to research for this.
Claire Schulz Bergman 39:24
I just looked and we just passed 10,900 So we’re on our way and it feels good. Yeah, yeah. Anyway, so in our in our own expenses, like our we’re staying in hotels on the way and you know, any food or whatever, we’re just that’s gonna be out of pocket. So it’s truly anything raised here goes to the ALS Association for Fundraising or for research for for trying to figure this out trying to get better treatments and a cure. Yeah.
Claire Schulz Bergman 39:55
And I and just one thing to say on that research on als US is like, also going to help find cures for Parkinson’s and Alzheimer’s and other diseases that might affect other people. ALS is rare. But these other diseases,
Courtney Townley 40:13
it’s neurodegenerative. And that’s a large class of.
Claire Schulz Bergman 40:16
Yeah. So it’ll be helpful for that, too.
Courtney Townley 40:20
Yeah. Okay, so just for listeners to know that, if they would like to contribute to this fundraiser, you can do so here. And I’ll post it on social media and other spaces as well. Because I would love for people to contribute, we’ll certainly contribute. And yeah, we’ll help you get the word out there, hopefully.
Claire Schulz Bergman 40:42
Yeah. Thank you. Thank you.
Courtney Townley 40:45
It’s such a pleasure to know you, Claire. I just love having you a part of the community. I love having you as a client again, you know, it’s I wish this wasn’t your wrestle. But it is, too. Yeah, no kidding, right. Amen. Yeah. But even coming here today, and sort of sharing that realness, I think with listeners is it just reaches further than you’ll ever know. You know?
Claire Schulz Bergman 41:12
Yeah. So I mean, if it helps one person, I think that’s, that’s great. So
Courtney Townley 41:18
Great. Well, thank you for making the time. I’m totally cheering you on.
Claire Schulz Bergman 41:23
Of course. Thanks.
Courtney Townley 41:32
Thank you for listening to the grace and grit Podcast. It is time to mend the fabric of the female health story. And it starts with you taking radical responsibility for your own self care. You are worth the effort, and with a little grace and grit, anything is possible.
