C (2:45)

So in your writing, and we'll put links in the show notes to your work. So the. You published personal stories on chronic illness, so why did you feel that it was important to share your story? And. And do you get anything back from hearing about other people's stories?

A (3:02)

100. Like, I think it is definitely not selfless sharing my story. If anything, it's selfish because I get more from my audience than they probably get from me. Um, I think there I felt so required to do it because I wanted to show a side that I wanted to see when I was first diagnosed. So I wanted to see someone that was still thriving in spite of it and with a positive but also honest attitude. So I do want to show the bad times, which there are a lot, but I want to also show that, like, in spite of that, how successful life can be.

C (3:33)

And we're also talking about a bit about family. So that's one of the overcoming Ms. Pillars now is family. So you're a mother, and you mentioned you've written a children's book, so you've written the picture book some days about a mother with Ms. So tell us a bit more about the book and support you give for children and parents with chronic illness.

A (3:55)

Yeah, I. I have to say the book isn't really written by me because it's based on my son's interpretation of our life together. So I decided when he was young, I was going to write him letters of, like, moments. I felt like I failed him as a mom. The nights that I cried myself to sleep when my legs didn't work or I had to race the bathroom. And at the end of the night, I would ask my son, like, how did you feel about this? And he'd be like, batha potty or air conditioning, mission day or train day. And he just saw it, life through a different lens. And that kind of. I think it took a huge weight off my shoulders that even those moments that I feel like I'm failing, he doesn't see them that way. And I was on a mission. I was like, I have to write this because I think all mothers and fathers feel some level of guilt, or, did I give enough vegetables or too much Screen time, all the guilt that we carry as parents, but it's compounded when you have a chronic illness. And I think the most key component is, listen to our children, because they, they don't see these as the failures, and they're not as hard on us as we are. So I think give yourself a little bit of grace.

C (5:01)

And, and how do you see the role of family when you're talking about ms? So there's the role of you as a parent, but there's also the role of the rest of the family. And how's that affected by a chronic illness like ms?

A (5:14)

I think that's a great question. A lot of times, you know, I have ms, but my family does too, in a way, because they have to live with my limitations. So I think that's a hard pill to swallow for anyone. But adjusting and adapting is a part of life, and I am so proud of that. Like, my son is the most empathetic and kind kid. He's always looking out for his friends. He's always looking for the most adaptable way that everyone can be included. I think those are qualities that are more important than running around a zoo for too long that I can't handle necessarily, you know, So I, I do think I have to look at the full picture. There are moments, you know, we just had a big adventure day the other day, and it, it was hard on my body and I hated the way I looked walking back to the car after it. But I did it. And I think him seeing me do it in spite of the challenges is going to teach him resilience.

C (5:59)

Yeah, I think, certainly for me, I think it was never. I never anticipated my daughter helping me with things physically, not until I was much older. Certainly not while she's still, you know, a teenager.

A (6:12)

I know, and I'm hopeful. I am very hopeful. But I. And I'm. I hope that I'm not too stubborn to do what's right. Like, I don't currently need a walking aid all the time. Um, I genuinely. I like my husband's arm and I hold onto him, but I also am realizing that it's getting harder and that, that, that walking stick that was so far out of my realm is sitting in a closet for when I need it now. So I see the changes, and I think it's really important to, like, notice those subtle changes. Even buying a house that has stairs, you know, four years ago, didn't look the way it looks now. And now we're. Do we need to move to a ranch type thing? So I think just adjusting to the challenges is a hard part for us to adapt to, but we do it and we do it with grace and that's what's important.

C (6:59)

So you've mentioned as well that you, that you work as an Ms. Advocate. Could you tell us a bit about your experiences and impacts in Ms. Advocate and, and also how someone could get involved if they wanted to start doing advocacy work. How do you start doing that?

A (7:16)

Yeah, I absolutely love advocating. I think the best starting point is to reach out to your local societies. I know in the UK you have the MI society like we have here in the States and I think that's the best starting point. I do peer to peer advocacy. So people that are newly diagnosed I talk to and try and help them through that. And I say newly diagnosed. I think the first five years you're really newly diagnosed, like getting your head around the journey. And then I have a support group that's virtual which I'm proud that we, you know, people from the UK join people from, you know, Ireland, everywhere, Switzerland. It's wonderful that we have such a diverse group and I think that's the beauty of zoom and you know, being able to connect to people all across the world and get different journeys. But I think share your story, decide what your platform is and what you find important. So you know, TikTok, Instagram, those things have you give you a greater reach and I think finding, giving, coming up with your own individual voice because like mine is definitely focused on being a mom with Ms. And the challenges that we face and a wife. But you know, newly diagnosed is a different. There's pediatric Ms. Patients, there's so many, everyone has like a niche part and I think there's so many, is it 2.8 million across globally that have Ms. Of us? So finding the people that can relate to your specific challenges is very important. But it's good to put your voice out there and there's, there's room for every voice. So whenever I'm like at a conference or anything, if I'm on any job with a pharmaceutical, I think of my other advocates. So I think remembering that there's enough room at the table for all of us that it's not a competition is really important in my mind.

C (8:50)

And another thing I want to talk about is a deck that you've produced or your co creator of called Fit to Essential Inclusion Skills, an A to Z guide to kindness, compassion and respect for diverse abilities. So could you tell us a bit about that deck and why inclusivity is so Important to you, I think I

A (9:08)

am so proud and grateful that I got to work on this deck with Jenny Woo. She is brilliant, Harvard educated dog. She's phenomenal. But I was first very excited for the opportunity to collaborate with someone of that calorie but also to help highlight different diseases and obstacles that we overcome and start the conversation. So it's a fun and interactive way that you can start using words, especially with children like A is for abled, D is for disabled and they kind of look the same. So it's having. And each card has a QR code on the bottom that links you to an individual's specific story, whether it be a school shooting survivor. You know, like we have such a diverse group, only a 52 on the deck, but there's a website dedicated to more individuals that want to share their story. So I think that was important for me to have people highlight and make them proud. We asked them all five questions and those questions were to empower them like and at the end it was like what do you want the world to know? And it was beautiful the things that they would come up with that. And I learned. So I feel like I'm pretty well versed in disability and advocacy and I learned so much from this project.

C (10:21)

So you are obviously quite positive as a person. You seem to have a very positive mindset. So. But you're living with Ms. And that's obviously challenging and you've touched on some of those things. So how do you find strength and positivity despite the challenges of having ms? And, and specifically I believe that you have a gratitude practice and how does that benefit you and help you with that?

A (10:44)

I think, I think realizing that we all have something has helped me because you can look at someone and think they have everything completely put together. Majority of times like whether it be depression or anxiety, everyone has something that they're battling underneath the surface. So I think you can get stuck in a sad and depressed headspace over this disease and worry, but it doesn't serve a purpose. We can't really predict where the world is going to go. We didn't know Covid was going to happen. And look at, you know, there's so much. So it's been a long time. I'm going to be 19 years in. You know, it's taken me a while to get here and each loss I have to allow myself time to grieve. As if it's like getting newly diagnosed because you have progressive also but it's relentless and you know that it's know Next year is not going to look the same as this year and that's a hard pill to swallow. But I think both of us remain hopeful that all of these strides that we're making are leading somewhere that we could benefit from. And we are still youngish and hopefully we can experience some of the benefits that are coming from these things.

C (11:41)

And you touched on that. You have a peer support group. So we have a thing at overcoming Ms. Called Circles. And I think that is. You touched on Covid a couple of times as well. And maybe that's a benefit to come out of that is that I think that virtual community because we were forced to we couldn't meet each other particularly people who were risk additional risk when our immune systems are playing up anyway. So we were isolated for that times. We got these virtual communities. So. So circles came out of that overcoming Ms. But you have your own virtual support community. So. So firstly, why is finding others who understand you important people with conditions like ms? And also what is your virtual community? And this. We'll put a link to it. But what community do you have?

A (12:28)

I think, I think it's finding. I remember when I was newly diagnosed going to support groups and seeing where the disease could go and leaving not feeling motivated but more feared like for fearful of the future. And I was kind of driven to make sure that we had support groups for everyone. But also that showed that this disease has evolved into a different disease than it was 20 years ago and that there is hope. So we have our group, it's called Voices of Ms. We're on Facebook. We're virtual free group that meets through the Ms. Society. And it's great. We all sit. It's the best thing about Ms. Is like the people that you meet, you skip the small talk. We don't care about the weather. We don't care about. We just go straight to here's how our day is. How many spoons do we have left? What's going. You know, did you pee your pants today? Those like we just don't. I think we skip at the small talk and I love that. I love the community that we have and I think that's what the support groups are like. Okay. We don't need to know how your day was apart from like how is Ms. Impacting? Let's celebrate the joys, but let's also honor the sadness.

C (13:33)

And I think no one, no one gets it unless you've got it. I know it's even your neurologist or your partner. You can't fully explain what it's like. But if you say to someone with ms, like, oh, my fatigue's really bad today, they know what you mean immediately. They know it's the same as just being tired from something else. They know it's a different thing.

A (13:52)

Yeah. I mean, just like you said, like going to a bar and, you know, and I definitely drink, but sometimes even when you haven't had a drink, it looks like you have. And you slow your words when you're exhausted. And there's so many things that it's hard for the outside world to get. But when you're a part of the club.

C (14:07)

Yeah. And you get advice. So I don't. You and think people will have had a similar thing when they've tried to try the drug that you're considering all these things. And as a final point, we like to ask if you've got any advice or anything else, particularly for newly diagnosed people, what hopes do you have for the future? Is there anything else you'd like to add?

A (14:28)

I'm kind of, like, naively optimistic. I think that there's so many great strides that we're making. You know, I just. We have some conferences here, like AAN and cmsc, which are big national conferences that talk about Ms. And the strides that we're making are huge. There's so many new trials that are coming out, but then some that are coming out of trials already. So that's already within, you know, the next year we're going to have a few more drugs on the market that are available for all forms of the disease, which, you know, some kind sometimes fell by the wayside. So I'm hopeful. And I just was in a clinical trial, so I was hopeful with that. It didn't work as well as I had hoped that it would, but they're. They're tailoring it and gonna try again. So I think that they are doing stuff, you know, the future is a lot less bleak than it used to be.

C (15:14)

So someone who's newly diagnosed is cautiously upset.

A (15:16)

You're gonna be fine. Yeah. You're gonna. No, it's not the same disease. It's hard to. Like, there's just so much you can do and there's so many more options for you and, you know, especially when. Cause I'm really big into parenting. If you wanna be a parent, don't let this disease stop you. You're still gonna be an epic, phenomenal parent if there's something you wanna do. This disease might slow it or change the dynamic of it, but it will not stop it. So keep at it, okay?

C (15:40)

And with that, I'd like to thank you very much for joining us. Judy Stam thank you.

A (15:44)

I'm so happy to meet you.

B (15:46)

Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mab Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share? Email us@podcastvercomingms.org we'd love to hear from you. The Living Room with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.