Series Wrap-Up

For the final episode of the MS Diagnosis Journey podcast, regular host Laura Kolaczkowski and editor Steve Woodward reflect on the stories that they've heard throughout the series.

In this chat, Laura and Steve look back on what they found most interesting in previous interviews. Mostly what they take away from the series is the generosity with which guests have shared their own personal stories.

Thank you to them and to everyone who has listened to and shared the MS Diagnosis Journey podcast.

If you or anyone you know can help with future sponsorship of this podcast, please email msdiagnosisjourney@gmail.com. 

Edited by Steve Woodward at The Podcasting Editor
Podcast artwork by Jackie Zimmerman at Queen of GSD
Background Music is “Old Photos” by Olexy 

Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Transcript

Laura 0:00

The intention was to be a resource for people who were experiencing their own symptoms that they weren't quite sure what it was, and what would getting an MS diagnosis really look like. I think for me, what I found with everyone I talked to was the graciousness of every last guest willing to share intimate details of their lives and this diagnosis journey that they underwent. This is the opportunity for these people to be able to tell their story uninterrupted. Everyone has a story to tell, and we invite you to join us for the Multiple Sclerosis Diagnosis Journey Podcast and listen to these unique stories. Greetings and welcome to the MS Diagnosis Journey Podcast. I'm Laura Kolaskowski, your host, and with me today, I have a very special episode planned with my editor, Steve Woodward. Hi, Steve.

Steve 1:12

Hi, Laura.

Laura 1:13

What we're going to do today is Steve and I thought we would just take a look back at the episodes that we've done on MS Diagnosis Journey and see if there are any key points that we should pull out and share with our listeners for this final episode. We have come to the end of the sponsorship of this series, but we hope that in the future we'll find another sponsor who's willing to help us continue to produce more of these chats with people who've gotten their diagnosis of MS. So, Steve, I'm just wondering, you know, how many episodes have we done? Do you have a final count?

Steve 1:52

This will be number 40. But didn't we do a bonus one with Aaron Boster? I think we did, yeah.

Laura 1:59

Well, and we did a good job, I think, of trying to produce these once a week. So we have some regularity for our listeners who wanted to learn more. And for those of you who weren't familiar with this podcast, the intention was to be a resource for people who were experiencing their own symptoms that they weren't quite sure what it was. And what would getting an MS diagnosis really look like to real people? So, what I found in these 40 episodes was absolutely everyone's diagnosis looks different.

Steve 2:37

Yeah. People talk about MS being a snowflake disease. Uh everyone's different. But there were a lot of commonalities. I mean, there was everyone seemed to have a series of sometimes hilarious misdiagnoses. Um, everyone's had the brain tumor thought. I mean, you had the heart attack, which trumps everybody, but talking about pinch nerves, trap nerves.

Laura 3:03

Yeah, you know, and I think you're right about that. There are those same common symptoms that run through a thread of this.

Steve 3:10

Yeah.

Laura 3:11

I think for me, what I found particularly interesting was this historical look back, this historical journey of how an MS diagnosis journey progressed. If you think back like with Sue Casey, and she talked about grab the happy, but she underwent some excruciating tests.

Steve 3:32

Oh gosh, it was like the air thing.

Laura 3:35

Yeah, where she actually had was hospitalized and they injected air into her brain to look for lesions.

Steve 3:43

I can't imagine.

Laura 3:44

This is a barbaric test that is no longer, should no longer be done anywhere. I'm not sure it should even be discussed in medical books. It is that barbaric.

Steve 3:55

I'm pretty sure we made it clear that that is not around anymore. Either that or the um the hot bath test.

Laura 4:01

Yeah, that with Ed Tobias and his actually being plunged in the hot water bath test, which is a test which was developed in the 1600s to test people for MS. They were plunged into a tub of hot water and then forced to stand up. If you couldn't stand up, that meant you had MS. So a pretty wild journey for those early people who have been diagnosed and living with MS for 30, 40 years. I also find it very promising, though, that those people are still around to share their stories with us.

Steve 4:34

Yeah. I mean, I thought um a lumbar puncture was was bad enough, but um, I think that's horrific. And I heard about the kind of the hot bath test when I was being diagnosed. And you know, it's it's like going back to the witch trials. If you can stand up, you haven't got MS, but you are a witch.

Laura 4:53

Yeah. But you know, and that's funny. Dunk you in the tub, and if you're still breathing when we pull you back up, I guess you're a witch, and we're gonna get rid of you by burning you at the stake.

Steve 5:04

Yeah.

Laura 5:05

I find it interesting you bring up the lumbar puncture. Very few people talked about actually having one in their diagnosis. Although I'm pretty sure that almost everyone did.

Steve 5:17

Yeah, I mean, I didn't have one as part of my diagnosis. I was I was an MRI, and that was that was enough. But again, it was it was enough with the historical evidence and my story and my symptoms that I'd noted and the different times I've been to doctors, it all kind of added up. It's like the breadcrumb trail, and then kind of you get the MRI and it kind of put it all together.

Laura 5:41

Yeah, I think you could do a whole series of podcasts just on what it's like to do some of these tests. You know, what does the MRI look like? What does all the blood tests look like? What does a lumbar puncture look like? I don't know if people would find that informative or not, because you could learn that from medical journeys, journals as well. Yeah, what I did find with everyone I talked to was the graciousness of every last guest willing to share intimate details of their lives and this diagnosis journey that they underwent.

Steve 6:17

Yeah.

Laura 6:17

And I think it's reflective of the community of people that live with MS.

Steve 6:23

Yeah, definitely. I mean, I think there are so many little kind of indignities that MS will kind of bestow upon you. And we have to talk about this endlessly to medical practitioners and nursing staff and things like that. And when we're talking to, in air quotes again, our people, they get it. It's the kind of thing that if you live with somebody and you've got close family, you don't want to burden the people around you, but you've got to get it out and it's your story. And hopefully they got something out of sharing it.

Laura 7:04

One thing I didn't discuss is that was there was a pre-interview and a post-interview survey we did with all the people who participated, and everyone shared it with their friends and their family. Many people shared it with their coworkers, some even shared them with their neurologists. So, this is the opportunity for these people to be able to tell their story uninterrupted.

Steve 7:27

Yeah.

Laura 7:28

Well, granted, I interrupt it often with questions or like my little asides, but but to truly to have have the spotlight on them and to share that story was really important.

Steve 7:41

Without somebody going, oh, I get tired too. Or I know someone who had that. I I mean, I had this from a friend who said, Oh, I know someone who had that and they died. Brilliant. Thanks.

Laura 7:57

You know, and in this series too, I think we'd really be remiss to not discuss the diverse participants that we have. Yes, we had some true key influencers in social media. I'm thinking of like Damian Washington, who has a huge YouTube following, and he's a great representative of the black community of young black men who have MS. We also had indigenous people. We had a Canadian from a native tribe up there talk about her diagnosis. So I'm particularly proud of that we were able to reach our tentacles out and attract people from all the the whole composite of MS is not strictly what we originally thought, which was a middle-aged white woman's disease. But instead, we were able to show that this affects everyone.

Steve 8:57

It's truly equal opportunities, is MS.

Laura 9:00

Uh, yeah. It has a it pick doesn't discriminate, it will pick on everyone. So and we had some people who, interestingly, I'm not even quite sure how we connected, that have absolutely no social media, no social footprint at all.

Steve 9:18

Yeah.

Laura 9:19

That they're just quiet people living their ordinary lives and and getting along with MS. And they shared their stories with us. And then we had the superstars, you know, like Kathy Reagan Young, who is brilliant with her own FUMS um channel and network and has been doing this for years. So we had such a diverse group of people that I would hope that the listeners found something in every episode, but found at least one episode of a person that they could identify with.

Steve 9:54

Yeah, I think so too.

Laura 9:56

So I'm just wondering, Steve, I I interviewed these people, I had the opportunity to talk to them, and you had to edit our words. So I'm wondering in that editing process, how did that impact you as you listened to? I I kind of wonder, did you get little like flashbacks of your own MS journey as you did this work?

Steve 10:22

I suppose so. There were certainly some, like I say, commonalities between certain stories, and there were some things that kind of made me think, well, they got diagnosed really quickly. Mine was it wasn't epically long, but piecing it all together took about five, six years, something like that. But when I edit podcasts, a lot of the podcasts that I edit are nothing to do with MS. And some of the podcasts that I edit are to do with MS. And being a person with MS myself, sometimes I do get a little bit worried that they might be triggering, but I didn't get anything that made me feel like I'm uncomfortable doing this. It was more a sense of, well, that's interesting. I've never thought about that. And I'm glad I didn't have to have that procedure to come by my diagnosis. But it was interesting how many people talked about advocating for themselves. And I don't know if that's necessarily to do with different healthcare systems. Obviously, in the UK we have the NHS system, so it's more a case of that's the person you talk to because you live in this area. So you are not necessarily stuck with them. You can always kind of make requests to move to a different person, but it's not the kind of thing where you have to almost shop around for your for your medical team. But obviously, there have been times when I've had to kind of say, look, I'm not happy about this. Like I say, I don't know if that's necessarily something which is natural to people in the UK, but certainly for you guys in the States, it was right. You stand up and you kind of demand, but but then you're paying for it.

Laura 12:05

Yeah, and I think that's the big difference too. And I would be remiss to not point out that this not only was a diverse group of people we talked to, but an international population. That we had Canadians, we had folks from the UK, we had um a woman from Ireland. So in the future, I would love to expand this to be even more global because I know MS is a disease that's found worldwide. It's not just not just in our Western um world.

Steve 12:41

It's not necessarily northern hemisphere any anymore either. Correct. They did talk a lot about when I was first diagnosed, it was for northern hemisphere, white women, and now it's it's gone global. It's gone, I'm not gonna say viral.

Laura 12:59

Yeah. And I'm not sure that it's gone global or if it's always been there. It's just that we're recognizing that it's a disease that impacts more than white women.

Steve 13:08

Yeah. That was really interesting for to me, the way the different ways that people of color were treated, that was horrible in some instances.

Laura 13:18

I think it's reflective of a lot of what we've learned, particularly coming through COVID, that the disparity in care for people is is real. Yeah. And being able to discuss that in terms of even diagnosis of what specialists were willing to look at as possible diseases, just is another example of that disparity.

Steve 13:44

Yeah, yeah.

Laura 13:45

And it's frightening because it's not just in MS care, but it's in all care. You know, it's in, I think the statistics this week were about heart disease and heart attacks. You know, the black community in the US is definitely disproportionately affected by it. Why? What are the root causes?

Steve 14:03

Yeah. But I was just looking at uh one of the past episodes uh while we were talking, and I think it's quite positive that people talked about the things that they'd gained from MS, because I I say that you know it does take things away in various ways. But personally speaking, I've gained a lot from having MS. And and I know some people will be listening to this and saying, right, okay, just get out of here. But I think if you're able to kind of look at it and go, right, okay, this is this is crap, but this has made me not to go all hallmark, it's made me a better person. It has made me a better person in some ways. And I think it was nice to kind of get that through the interviews as well, because and again, if I'd been editing it and it was just, oh, I got MS and everything's been dreadful since then, then I would be too depressed to edit them. But the fact is I've edited them and I've enjoyed editing them and I've enjoyed listening to people's stories because people were not in a happy clappy sort of way, but were positive and thinking, right, okay, let's get to work. This is what I've got. Let's let's let's take it on. And I think that's been really valuable.

Laura 15:29

And to that point, we didn't hear anger from anyone.

Steve 15:33

No, I mean, God knows we've all felt it, but yeah, that certainly didn't come across in any of the interviews.

Laura 15:40

So, Steve, we're at this juncture now where we've got this volume of really great information that people are listening to and using hopefully in their own personal reflections of what's wrong with them and sharing it with their family, friends, and neighbors, whoever wants to listen. But moving forward, I'm certainly hopeful that we'll find someone else who'll be interested in picking up this podcast and helping us with the sponsorship of us. I don't want to ever monetize this MS work, but it does require resources to sustain it. So that's my little pitch for anyone who's listening out there who might have a friend of a friend at a foundation or a pharmaceutical company or anyone who would like to have some, like to just do good in this space because there's a lot of people in this world who have MS, and I'd like to expand even to a larger global reach of capturing their stories. And I think that's possible.

Steve 16:44

That was very subtle the way you did that. That might be the title. That might be the quote that I put at the start of the episode.

Laura 16:53

Yeah, please open your checkbook, damn it, because we need money to keep this going. Come on, give it up here. So, and it's a small investment. You know, what we have here really is it's a small investment for people who have deep pockets for a project that has large returns.

Steve 17:11

Cool. Very good. Well done.

Laura 17:14

So, do you have anything in some mission you want to say here?

Steve 17:17

No, no, just thank you for um letting me be part of the process. I've I've really enjoyed it, and it's been good to hear different stories. And as I say, they've all been fairly positive, and there's been no anger, and again, it's been really nice to to work with you, Laura.

Laura 17:38

And I've got to say, Steve, one of the best things out of this project was connecting with you because you've made this seamless. I know nothing about doing podcasts, starting out, and I still know nothing. I just know how to talk to people, and you took care of everything else. And to that, I will be eternally grateful. So thank you, my friend. And for those of you out there, you've been listening to our summary wrap up of the MS Diagnosis Journey podcast. Thanks for joining us.