S8E6: Parenting with MS: advocacy, resilience and raising children with honesty

Overcoming MS (00:38)

Welcome to the latest edition of Living Well with MS. And I’m pleased to say joining me on this edition is Julie Stamm And we’re here to talk about parenthood and advocacy. So welcome, Julie.

 

Julie Stamm (00:49)

Hi, thank you for having me. I’m so excited.

 

Overcoming MS (00:51)

So to start off with, could you introduce yourself, your work and also your personal journey to living with multiple sclerosis?

 

Julie Stamm (00:58)

Yeah, I’m Julie Stamm and I was diagnosed in 2007 with multiple sclerosis and my symptoms started in 2001 so it took a really long time to get diagnosis which was frustrating but I decided to turn my diagnosis into advocacy and I’ve worked really hard on that from then and when my son was born I shifted my focus to supporting parents with MS and their children.

 

Overcoming MS (01:23)

So as an advocate and you’re also an author I could you tell us a bit about your mission behind educating, advocating and supporting people with MS and other disabilities as well?

 

Julie Stamm (01:26)

I am, yes. I have a children’s book, yeah.

 

Yeah, yeah, I think not being transparent with our kids is kind of a disservice because it’s such a major part of our lives. So I always wanted to be transparent with my son and in an age appropriate way. Obviously, we’re not going to talk about demyelination or like where this could lead or all those things we’re going to focus on where we are now that there’s an abundance of love and our days might not look the same as everyone else’s, but they’re going to be extraordinary adventures. And so that’s my hope is to start the conversation. And I love that parents that haven’t talked to their children have used my book as a tool to tell them about their MS. I love the feedback. I love talking to children at school and, you know, empowering them to embrace their difference. So I go to schools and read and kids are like, I have epilepsy. have, you know, diabetes and just embracing what we have instead of being something to be ashamed of.

 

Overcoming MS (02:26)

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

 

Julie Stamm (02:44)

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 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.

 

Overcoming MS (03:15)

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.

 

Julie Stamm (03:37)

Yeah, I had 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, spot the potty or air conditioner mission day or train day. And he just saw it life through a different light.

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 listening to our children because 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.

 

Overcoming MS (04:42)

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 is that affected by a chronic illness like MS?

 

Julie Stamm (04:55)

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 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 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.

 

Overcoming MS (05:41)

Yeah, 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.

 

Julie Stamm (05:49)

Yeah, and 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. I genuinely I like my husband’s arm and I hold onto him, but I also I’m 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. Now we’re doing 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.

 

Overcoming MS (06:40)

And so you mentioned as well that you work as an MS advocate. So could you tell us a bit about your experiences and impacts as an MS advocate and also how someone could get involved if they wanted to start doing advocacy work? How do you start doing that?

 

Julie Stamm (06:50)

Yeah, I absolutely love advocating. think the best starting point is to reach out to your local societies. I know in the UK you have the MS 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 had seen 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, know, people from the UK join and 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. 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 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.

 

Overcoming MS (08:32)

And another thing I want to talk about is a deck that you’ve produced or your co-creator of called 52 Essential Inclusion Skills and 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?

 

Julie Stamm (08:38)

I think I am so proud and grateful that I got to work on this deck with Jenny Wu. She is brilliant, Harvard educated, she’s phenomenal. But I was first very excited for the opportunity to collaborate with someone of that caliber. 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. We have such a diverse group, only 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. And at the end it was like, what do want the world to know? And it was beautiful, the things that they would come up with. And I learned so, I feel like I’m pretty well versed in disability and advocacy. And I learned so much from this project.

 

Overcoming MS (10:02)

So you are obviously quite positive as a person. You seem to have a very positive mindset. 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 specifically, I believe that you have a gratitude practice and how does that benefit you and help you with that?

 

Julie Stamm (10:09)

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. The majority of times, 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. didn’t know COVID was going to happen and look at what, 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 next year’s not gonna 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.

 

Overcoming MS (11:23)

And you’ve 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’ve 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 at risk, at additional risk when our immune systems were playing up anyway, I think. So we were isolated for that time.

 

Julie Stamm (11:47)

Right.

 

Overcoming MS (11:51)

we got these virtual communities. So circles came out of that overcoming MS, but you have your own virtual support community. So firstly, why is finding others who understand you important people with conditions like MS? And also what is your virtual community? this we’ll put a link to it, but what community do you have?

 

Julie Stamm (12:10)

thanks. 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 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 is called Voices of MS. on Facebook, we’re a virtual free group that meets through the MS Society. And it’s great. 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 things like we just don’t. I think we skipped 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.

 

Overcoming MS (13:12)

I think no one gets it unless you’ve got it. Even your neurologist or your partner, you can’t fully explain what it’s like. if you say to someone with MS, like, my fatigue is really bad, they know what you mean. They know it’s not the same as just being tired from something else. They know it’s a different thing.

 

Julie Stamm (13:18)

I know, it’s so true. Immediately. And then like you can cancel.

 Yeah, I mean, just like you said, like going to a bar, you know, and I definitely drink, sometimes even when you haven’t had a drink, it looks like you have and you slur 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.

 

Overcoming MS (13:49)

Yeah, and you get advice as well, don’t you? think people will have had a similar thing when they’ve tried to 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 have for the future? Is there anything else you’d like to add?

 

Julie Stamm (13:57)

I’m kind of like naively optimistic. I think that there’s so many great strides that we’re making. You know, I just, have some conferences here like AIN 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 sometimes fall 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 tailoring it, and going to try again. So I think that they are doing stuff. I think. The future is a lot less bleak than it used to be.

 

Overcoming MS (14:56)

So someone who’s newly diagnosed is cautiously optimistic. Yeah.

 

Julie Stamm (14:58)

You’re going to be fine. Yeah, you’re good.

 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, because I’m really big into parenting, if you want to be a parent, don’t let this disease stop you. You’re still going to be an epic, phenomenal parent. If there’s something you want to do, this disease might slow it or change the dynamic of it, but it will not stop it. So keep at it.

 

Overcoming MS (15:21)

Okay, and with that I’d like to thank you very much for joining us Judy Stam.

 

Julie Stamm (15:25)

Thank you.

 

I’m so happy to meet you.