Anthony Lobosco (00:00.462)
Welcome to Threading MS Journeys, a podcast for people recently diagnosed with MS. I'm your host, Anthony Labosco, and I was recently diagnosed with relapsing remitting MS in March of 2023. This week is really exciting for us for a couple of reasons. Number one, we have an awesome guest on, Kathy Chester, and I'll introduce her in a second. But the second reason is Kathy is our first guest.

Besides myself, that was in episode one, Kathy, you are going to love Kathy because she is resilient individual who manages multiple health conditions, including multiple sclerosis, rheumatoid arthritis, and epilepsy. Kathy is an inspiring person, inspiring woman with a podcast called move it or lose it. And if anyone thinks that mess hold people back, you got to reconsider it and you got to listen to this.

because she actively promotes healthy living movement, nutrition, and provide support for the newly, for newly diagnosed women. And if that wasn't enough, she is writing a book. yeah. And she has five children. Okay. So today, Cathy is going to share her MS journey with us, highlighting the importance of acceptance, support, and exercise.

She's going to discuss her experiences, managing symptoms and balancing nutrition and lifestyle. It was a great conversation, but we split this into two. So this is the first of two episodes series. So stay tuned for part two next week. And if you like this conversation and think someone else will too, hit this subscribe button so you can get all of our latest episodes.

Anthony Lobosco (01:51.384)
Cathy, how you doing? Hello. Great. How are you? Doing great. Thanks. Thanks again for coming on. You bet. So why don't we start by, if you can share your initial diagnosis and what those early experiences were like for you. Sure. Absolutely. So I was diagnosed back in the nineties, late nineties, first off with rheumatoid arthritis. So that was my first one. And he did tell me at the time, like I

I know what this is, but I would like it if you would at least go see a neurologist and get some other tests, because I feel like there might be something else going on. And having never been sick, I was like, yeah, I'm good. I'm OK. And so I just kind of thought, you know, I'll deal with it later. Rheumatoid doesn't really hit you till you're old, so I'm good. And then, you know, just I didn't really think too much about the numbing in my feet and hands and shins and things. I just kind of let it go and didn't tell anyone about it.

And then I woke up Mother's Day and I had my first child very young. We don't need to go in that today. That's a topic for another time. And so then I woke up and I'm like, something's in my eye. I can't see anything. It's gray. And so like I told you before we started, I feel like for our newly diagnosed patients and for clients, it's always on.

a special day, whether it's a birthday or whether it's a holiday, it just always seems to fall on that. So I finally say, yes, I'll go to the ophthalmologist. And what I didn't know is that it's very common that an ophthalmologist will be the person to diagnose an MS patient. And so he first looked into my eye, asked me a bunch of questions, diagnosed that it was indeed optic neuritis.

which we've got a lot of things that go on with our eyes. And back then, I only thought that was it. You get optic neuritis. So it's a swelling of the optic nerve. And typically it goes away. doesn't, back then with some steroids, it would go away. Mine was very unique. It just never went away. I still have it. I still can't see out of my right eye. And there's a lot of pain with it. So that was something that I had that...

Anthony Lobosco (04:08.43)
caused me to go to the ophthalmologist and then the ophthalmologist started asking me some questions and I was like, you're asking me, you're getting kind of personal. So he seemed to have all these ideas like, do you have numb spots? And I'm like, what do you mean? He's like, you know, anything in the hands tingling? And I was like, no, he's like, you sure? And I'm like, dang it. Okay, maybe a few. And so he's like, that's what I thought. And so we talked a little about a.

multiple sclerosis, but I still couldn't wrap my head around that. Like, what are you even saying? So he said, I'm just gonna send you to our big hospital here where I'm located is Beaumont. So there's two big Beaumont hospitals. And they sent me there and immediately the lumbar puncture and then of course the MRI. And so unfortunately I had had it for so long, so don't do what I did. I didn't go to the doctor for so long. They found...

least 30 lesions on my brain. So I definitely had that in high school and looking back, I think a lot of us newly diagnosed as we go through a couple of years, you can kind of see like, that makes sense now. Cause I had this, you know, I had this happen and now this makes sense as we learn about the disease, right? So that was kind of the beginning of multiple sclerosis for me. Wow. Yeah. I mean, it's, it's terrifying.

when you don't know what it is initially, but it's almost like you feel better when it actually has a name. Yeah, definitely, absolutely. And it's funny because my grandfather had it, but he was so old that we never knew that that's what it was. We put it together later. My aunt had it, but she was in Canada. So she never even got an MRI till she was...

It was so far gone that there really wasn't a lot of hope. And I was too young. I didn't really understand what she had. so MS was such a foreign concept that I didn't really get. So I think that it's just such a big thing. It's such a confusing thing for us. And back then, it was something that there was no internet. We didn't have the internet to search. We waited snail mail for the app.

Anthony Lobosco (06:27.854)
society's newsletter to come out to tell us what was happening. And there wasn't a lot that we really knew. We were waiting for the, you know, Avanax and that was what I started on. And it was like waiting for some medications to come in. And so those were kind of like the highlights of things coming. I think Avanax might have come out in 2000. I might be wrong about that. It might have come out earlier. And then the big news was, you know, waiting for Tysabri to come out. That was like the big, it's going to like,

heal us all. And so, those were back in the, you know, the olden days when it was like, you didn't tell anybody about it. You didn't, you were very secretive. You told your family like a little bit and you did not tell your employer. You did not tell them at all. You were terrified of losing your job, losing your family, your kids. So you were just, it was a very different time and support groups, terrifying.

Our first support group was literally at a scooter shop. So we'd be sitting there looking over at these scooters thinking, are they just getting them ready for us or what are they doing with these? So it was just a very depressing place to go. I always kind of say, if you've ever gone to an adult child of an alcoholic meeting, those are extremely depressing. That's kind of what they were like back then. we're now they're so different and

Just, and I know we'll get into that later, but so different than how it was back then. Yeah. You're absolutely right. you you, you, you answered my next question, which was going to be some of the challenges, but looking back on, you know, in 1996, the late nineties of when that was, when that diagnosis happened and look, you know, think about when that was, when that was happening, when your grandfather or

you know, anyone back in the seventies or even sixties, what that was like. It's, it's just, it's just night and day. that's something that, know, newly diagnosed people like myself 2023, 2024, the whole different ballgame. still have a way to go. now, you know, that's why people like yourself, people like me, I've been coming with my podcasts and everything.

Anthony Lobosco (08:48.78)
But that being said, it's a much different world. And I think we all need to appreciate that. And we all appreciate everything that you guys have done for all of us, no doubt. How has your journey with MS influenced your decision to start your podcast, Move It, Don't Lose It? Sure. Well, actually, I always had wanted to do a podcast. And once I was diagnosed with MS, it wasn't

You know, everybody's got something different. always say someone next to you could have it for two days and they could be in secondary and not walking. I can have it for 20 years and you know, run two miles or three miles. And so we all have a different, I always wanted to do a podcast. And I think once I knew that I had MS, numbers were the first thing to leave me. I could not count to save my life. And

any sort of, I love to write, I could not write any, I would write a paragraph and I was like, everything was a run on sentence. So that was difficult. Speaking was not, that was not difficult. Those were things that were easy. They were just things that were tough for me. My clients, their movement is tough, I can do, but cognitively they do well. So we're all a little bit different.

You know, think that that's like move it or lose it for me. I wanted to do podcast and I wanted it to be something very meaningful. And I also didn't like the podcast where you'd have like you and your best friend. And like, let's say we were doing it and we're best friends and we're laughing about something that we went out last night and we had a great time and there's an inside joke, but no one else has any clue what we're laughing about. I never liked those that it was like you're trying, you know, you're listening to it on the way to work and

you don't know what's going on. once I had MS, it just really inspired me to, especially really during COVID, more so because I had more time to really focus on it. And you know, what, what I really want to do with this, how do I really want to market it? How do I want it to be? And I really kind of settled on, I want patients. I want people that are inventing things that are really

Anthony Lobosco (11:09.036)
really cool for us that make our lives easier, but are also just kick ass neat. And then doctors tell us more, give us some information, what's happening, what are we on the cutting edge of? So those are my like big things that I wanted to really make sure of. And also to bring out all the other autoimmune diseases as well so that we're not like pigeonholed in just one. So I guess that's how it came to life.

No, it's great. I love it. And you you bring up a lot of great points here. Number one, I do not underestimate, you know, you don't in terms of being relatable, right? And that was at least for me, I haven't done as much research on, everything that, that obviously you have, I mean, you have years of it, but podcasting and everything like that too. I honestly have not seen many MS podcasts and the ones that I've seen.

have been more on the clinical side have been more, you know, I don't know, just seemed they were biased and having people that like yourself and hopefully even me as well being relatable to people, even your guests and things like that. Relatable. The second thing, I want to talk about as well, you brought up a great point about, you know, how you are

I get coping with the MS and really accepting it in terms of, I know what my, you know, what I can do, what I can't do. And I think when we spoke earlier, you talked a little bit about, I really want you to talk more about this too, in terms of having the MS, the metaphor that you talked about, that really comes into play here because that metaphor really,

dictates in terms of how you are. I should have looked at the movie because I think it was called, it was an older movie. It was called What About Bob, I think. And it was this guy that came to the house and they were on a family vacation and he came and he just wouldn't leave. They tried everything to get him out and then you just, then all of sudden there he was at the window, he was everywhere. So it always reminded me kind of comically of this is our MS, right? It's a visitor that came, unwanted, this visitor was unwanted.

Anthony Lobosco (13:30.902)
And it's not leaving. It's not going to leave us. At least as we know right now. So what do we do with it? We've got to find a spot for it. It doesn't mean that it owns us. Doesn't mean it defines everything about us. But it means we've got to find some kind of you know, a piece with it that we still go on with our daily life. That yes, there's things that suck. We've got to plan for everything. You know, it's like, am I going to pee my pants when I go here? You know, we've got to plan for every single thing.

And like I told you before, when I was newly diagnosed, if we are diagnosed with like relapsing remitting, and it's the beginning of the years with it, I remember my neurologist asking me, like, how's your pee? Great, how's yours? How's your stool? Great, how's yours? How's your sex life? Awesome, how's yours? I couldn't understand, and they didn't do a really good job of explaining why they were asking me these questions. And I hope that they do a better job at that.

Yeah. Cause when you're newly diagnosed, you're like, I don't know, is it going to change? And then all of a sudden you're like, yeah, it does. I just peed for no reason. And so those are scary things. And sometimes it happens right away. And sometimes telling a new newly diagnosed person that, you're going to pee for no reason. in public. mean, that's enough to really terrify you. And if you're in a group with a bunch of people that have it.

and you feel supported in it and they tell you in funny ways how it happens. A lot of times we'll tell stories with a newly diagnosed and say, you don't have MS until you your pants in public when everybody's there and you don't have anything to change into and you can't have black pants on. Don't wear black pants when you're newly diagnosed. I remember I had a light blue outfit on.

had no clue and it just was there. was like, well, can't hide that. So you gotta have a sense of humor about it. Or it will just, I always call it the black hole. You go to the black hole and it's so hard to come out of that. And so you gotta have that group of people. And I don't think it's a lot. mean, once we're adults,

Anthony Lobosco (15:49.038)
You know, we don't have that opportunity to have those really tight, tight friends. You know, I would say you're blessed if you have like two or three of those because, you know, we've got jobs, families, we don't have that much time. And so I think that having those close people, even if it's one that you're able to say, I just need to get this out, this day just really sucked and I just need to talk. And those are important things to grieve it that you just were diagnosed with this disease.

and you're gonna grieve it, like not just that one time, but over through the years. Things that you lose, things that changes that happen, that's the reality of it. Now those are kind of the crappy things, but there's also some amazing things that happen. I don't think that, I know you're still in your first year, but I don't think I would have taken the time to enjoy sunsets. Sunsets.

sun rises, wouldn't have slowed down enough. I am like the Energizer Bunny. So I just go, go, go, go, go. And like I said to you earlier, that when I found out I had it, I just kept going out to the track and running, thinking I'm gonna run this damn thing out. That's what I'm gonna do. And I would have to call and say, I guess it didn't work. I'll try tomorrow. And so...

For me, my energy just kind of came down to a normal person's energy and the kids were like, good, we can catch you. So for me, it was a lovely time where I could just really love on my kids and not be so busy and so crazy. It kind of gave me a chance to slow down. So I would say to our newly diagnosed, like take the time to research, research, research. Learn what it means to be an advocate, because most of us don't do that.

Unless you've had someone sick in your family, we don't know what advocating means. Like what does it mean? How do I advocate for myself? And I would say take notes. And sometimes like we shared together, it's hard to take notes for ourselves when we're trying to listen and understand what they're saying. And it's hard even for our significant other. So I try to say, take someone with you that is kind of...

Anthony Lobosco (18:09.486)
Not extremely close or easy, easy now push memos on your phone and you got it. So you can go back to it. And I mean, I don't know how long your memory is. Mine's now about 10 seconds, 30 on a good day. I'm trying to process some questions without writing things down that you were there. saying before, so I'll let you know how, my memory goes and you're giving me a good test right now. So good. You're doing good. So I think.

That's easier to do the memos because then you don't, it's harder for me to write down when they're speaking. Right. I agree. I think, I mean, you, there's so much on pack here in this, in this, in this conversation that we just had, right? I think the first thing that really, that really jumped out at me. Sorry. think you asked me one question and I think I answered 20. No, it's phenomenal. It's phenomenal because you're actually saving me time from reading, reading everything that I have here. So it's great.

You're awesome, Cathy. So the first thing is acceptance, right? I think that when as a newly diagnosed person and I mentioned this in the introduction when people are listening to this, that you run support groups for newly diagnosed women, right? And you are very much in tune with it. Even though it's been a while since you were

you were newly diagnosed, but you're very much in tune with it. And we mentioned a couple of things that really hit home with me is acceptance. And that's the first thing. Once you accept what you have, then all of a sudden you can start to test boundaries. And I think that I'm still in that stage of testing boundaries in terms of what I can do and things like that.

We're a little different in terms of our symptoms. My main symptom is trigeminal neuralgia. It's a bit painful. Yes, it is. flare ups do happen. Now, that being said, I've learned how to push the envelope and what I can do what I can't do. But that is painful. It is painful. But to your point, that also stems back to having that house guest.

Anthony Lobosco (20:32.704)
inside of you as well, right? Because as you mentioned, you all, you know, you, we want to do certain things, that, that house guest that we have, which is Ms. Is going to be push, pulling us back or say, helping to set those boundaries. We may not have been used to. So that's part of the acceptance, but you know, also the other, the other thing, and I think I'm doing pretty well with remembering this. are. I'm like, look at you.

the third thing is grieving, right? Yes. I was newly diagnosed. That is, mean, that's, that's exactly how I felt. a lot of people, that are recently diagnosed as well feel that and, and, and, and you have to let yourself give yourself permission to.

grieve and everyone grieves in much different ways but I'll tell you I'll share I'll share a quick story with you but the night before my my my birthday before I had after I was dying after I was diagnosed in March of 23 my birthday in May of 23 the night before my birthday I was hysterical and you know why I was hysterical because I said I am never

going to be a person without this disease. yeah. know, when that enormity hits you and everything like that, I'm not saying that it's easier to do, but to your point, have to do that. You have to do that. You have to walk through those steps, whatever they are for you, in order for you to come to an acceptance and then to move forward. If you don't do those steps, you can't move forward.

You're just stuck. I write. And I think the best thing also, Kathy, and you know, you may know this directly or inadvertently, but having people like yourself and support groups and everyone that share stories, you're like, my goodness, I felt this way. You feel the way through. I just couldn't believe it when I was on Instagram. Yeah. I look down mass and I see all these people and I'm like, my goodness. Some of these, you know, a of these people are thriving.

Anthony Lobosco (22:53.762)
They're warriors. my goodness. I can't believe this. So it's, it's really, it's really great. I think that's a big part of a big part of awareness. So I'm going to stop talking. But I really want to do, I wanted to just, you, you touched on so many awesome things, Kathy. No, thank you. I think that's, I think that's really good. And I think it's awesome that just in the year, what you've done, talk about advocating, you started a podcast from us. I mean, that's.

for newly diagnosed people and that's so important. And like we talked about before too, I think it's crucial to, once you're ready to start something, try something you haven't done. Because especially like, you know, I told you I work a lot with men and women. And I feel that men take this harder when they are really good in sports, so they've done something that they really enjoy. And they go to play that sport again and they can't do it. It's so frustrating and heartbreaking.

really brings them down. And I owe my advice is always try something you haven't done. Now, I'm very athletic, so I've done a lot of running in my sports, but I never did any distance running. So I thought, I haven't done that. Why with MS? I thought that would be a great idea. I don't know, but I did it. I thought, I can't feel my feet, but they hit the ground. I know that. So now I have to tell you that people that didn't know I had MS, after they were like, wait.

you have MS and you're doing this with us? I'm like, yeah. And they're like, you're crazy. But it was something I really enjoyed. And so maybe that's not your thing, but do something you haven't done and find some joy in that before you take everything out. You know, find something new. And sometimes that will bring you some joy that you were like, why I've never done this before. And this is something I'm really enjoying. I always like, I always try to encourage people to do that. And

Thankfully, the MS Society in 2020 said that movement was our biggest defense. So thank God. are actually building into the next, my next object, which is great. and MS, right? In terms of managing MS with movement. And that is obviously your foundation. That is. Yeah.

Anthony Lobosco (25:15.545)
You're an expert on that. So talk a bit about that and how important that is for people. So important. would say, and a lot of it that really struck me was when I learned more about my grandfather and my aunt was that they had told her, told them both, but especially my aunt is, is absolutely no exercise. Rest, rest, rest. And I thought, well, she was older. So that was back then. And then when I was diagnosed.

Even in the night I got the VHS tape that you go for a stroll, you'd be in a wheelchair in five years, you'll do this. And I just tossed it. And I was like, absolutely not. Nope. You know, my then my body will autography and yes, all that was stuff will happen because I've had no movement in five years. So it made no sense to me. And I just started to really with my knowledge and an anatomy and my knowledge with exercise. I thought.

Okay, I may not be able to do everything I did. Right now my body is out of the flare and now my body can do some things and I'm kind of where you are. I'm testing the waters of what I can do, what I can't do. I started doing some water aerobic kind of things with the senior citizens, which is hysterical because I'm in my 20s and these old people are like laughing at me. But I kept my eye in the gym thinking I'm heading there. I'm going there. That's my goal.

So I think just like find the little goals, know, hit a goal, then go to the next one. And so my goal was to get to the gym. Then my goal was to get on that dang treadmill. And then my goal was, okay, I can do this. Maybe I can find runners that run. And so I started running. So I think it's really important to find the things that you maybe haven't done and get that exercise in. Thanks for tuning into the first part of a two episode series with Kathy Chester.

We had a phenomenal conversation and glad you listened to it, watched it. we broke it up into two episodes, obviously, and we will continue the conversation around her experiences, managing symptoms, balancing nutrition and lifestyle. So part two is going to be released next week. Look out for the clips for the upcoming episode on our threading Ms. Journey's YouTube channel, and you can reach out to Cathy.

Anthony Lobosco (27:38.453)
at msdisrupted .com and all our contact info will be in the show notes. thanks for listening and see you next week.