S5E16 Giving Back with Circle Ambassador Jesse Mirsky

03:02 “[Professor] Jelinek’s voice really spoke to me like I’m a relatively intelligent adult. It was the first time I heard ideas like ‘follow this very healthy evidence-based lifestyle program, and still take your DMT with your neurologist’s guidance, if that’s a good fit for you.’ It was also the first time I felt like I had a say in my health, in my approach to my MS.”

04:02 “I discovered the concept of grieving for the loss of my former self and finding the new me. That concept really resonated with me. In a lot of ways, I actually saw it as a really positive thing. Through that I embraced dietary, exercise and mindfulness initiatives fully. Through the process of discovering who this new me is, I made a lot of decisions to cut out toxic elements from my life, whether that’s food and lifestyle related, people, or even something like social media. Overcoming MS was a major factor in helping all this.”

07:40 “I really struggled for about two years with smoking. Whereas [with] my drinking, getting that under control was actually almost easy and immediate in comparison. It feels like I tried everything to quit before I got a handle on it, which included things like tracking every time I smoked, and then trying to reduce the number of times each day, going cold turkey, reading about how horrible smoking is for your health, the scare tactics, etc. All those things. At the end of the day, I actually found Allen Carr’s ‘Easy Way to Stop Smoking.’ That book really worked for me.”

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Overcoming MS  00:01

Welcome to Living well with MS. This podcast comes to you from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about living well with MS by signing up for our newsletter at overcomingms.org/newsletter. And now here’s your host, Geoff Allix.

Geoff Allix  00:37

Welcome to the Overcoming MS Coffee Break. And joining me on this episode is Jesse Mirsky, the Overcoming MS Circles ambassador from Toronto, Canada. So welcome, Jesse.

Jesse Mirsky  00:47

Thank you for having me. I’m very happy to be here.

Geoff Allix  00:50

And to start off with, could you introduce yourself and tell us a little bit about where you live and what you do?

Jesse Mirsky  00:57

For sure. Yeah. So as you mentioned, my name is Jesse. I’m based in Toronto, Ontario, Canada. I work for a tech startup here in Toronto. And I also do a lot of volunteer work in the MS community for MS Canada, which is formerly known as the MS Society of Canada, where I lead a support group for people who are newly diagnosed, and also as an ambassador for Overcoming MS where I facilitate the Greater Toronto Area online Circle support group. The Greater Toronto Area, representing in this case, Toronto proper, as well as the surrounding area. So anyone in that geographical location is welcome to join our circle.

Geoff Allix  01:38

I just think because it’s Canada is that a massive area?

Jesse Mirsky  01:42

It’s quite large. Yeah. Large enough that we’ve never met in person, even COVID aside, because we’re talking about in the summer, maybe doing a meetup like one, because people do live quite far away. And yeah, it’s many different municipalities, encompassing.

Geoff Allix  02:03

Yeah, I was just we had a circle meet up over the weekend. And we’re complaining about how large our circle is and they said, “Yeah, there’s people in Australia and Canada.” Bigger countries. Can you tell us a bit about your MS journey and how you found out about Overcoming MS?

Jesse Mirsky  02:20

For sure. Yeah. My journey started just over three years ago, I was diagnosed with clinically isolated syndrome in February of 2020. And I went through all the available tests and imaging or MRIs, etc. Eventually, I was diagnosed with relapsing remitting MS in August of that year. And early on, I made a decision to learn as much as I could about MS. So I read a lot of books on the topic. Eventually, I found your podcast. So thank you for that. Which led me to the book. I read the book in late 2020. And when I did, I felt like I had found something really special.

Geoff Allix  02:57

And what was it? What did it why did Overcoming MS sort of resonate as something to follow?

Jesse Mirsky  03:02

Yeah, I think the book in particular, it was Dr. Jelinek’s voice. It really spoke to me like I’m a relatively intelligent adult. And it was the first time I heard ideas like “follow this very healthy evidence-based lifestyle program, and still take your DMT with your neurologist guidance, if that’s a good fit for you.” It was also the first time I felt like I had a say in my health, in my approach to my MS. So as I mentioned, I’d read a lot of books on MS at that point. And they all seem to say the same thing, which was “this is what we know about MS. And take your DMT.” And there really wasn’t much else.

Geoff Allix  03:39

And has your perspective changed at all since diagnosis? And finding Overcoming MS?

Jesse Mirsky  03:45

Yeah, I love this question. It’s something I think about a lot. Because honestly, everything’s changed. Things that used to worry or scare or give me anxiety, they really don’t take up a lot of my time anymore. Through an MS support group here in Toronto, I discovered the concept of grieving for the loss of my former self and finding the new me. And that concept really resonated with me. And in a lot of ways, I actually saw it as a really positive thing. So through that I embrace dietary, exercise and mindfulness initiatives fully. And through the process of discovering who this new me is, I made a lot of decisions to cut out toxic elements from my life, whether that’s food and lifestyle related, people, or even something like social media. So Overcoming MS was a major factor in helping all this. So today, I spent a lot of time as I mentioned, reading books, and exercising wereas just a few years ago wasn’t the case. I think of that as my mindfulness time really. And a major accomplishment for me has been getting my drinking under control and quitting smoking.

Geoff Allix  04:52

Because I mean, I think if there was a cure and miracle cure tomorrow, then a lot of the things I would still do in fact, I’d do pretty well. It’s all of the things. So I don’t think I would change very much. Because I’ve sort of friends and relatives just think they say, “Oh, it wouldn’t it, because then you could go back to these things”, but I’ve given up Facebook. And I just think that just makes me feel so much better in myself. And the mindfulness and the exercise. And actually, yeah, okay, we’re having a restrictive diet. But actually, that’s it’s not just MS. Because when you listen to people who are following diets for cancer, or for diabetes, or heart disease, it’s like, okay, they’re basically pretty much all the same 90% the same. You think, well, actually, I don’t really want to get cancer either. So that, you know, I would just carry it. And once you get, you know, once you get eating a diet actually realize that the whole food side of it, you’re actually eating proper food. Before, I think I was eating a lot of junk.

Jesse Mirsky  05:55

I couldn’t agree more honestly, everything in the Overcoming MS program and a lot of the different lifestyle based programs. They may seem extreme at first, but the reality is, it’s just a healthy diet. I think anyone could benefit from the Overcoming MS diet and lifestyle program, I don’t think you’d have to have MS for this to resonate. Obviously, having the disease is is a major catalyst for why you adopt it in the first place. But I totally agree. And I love that you mentioned that all of my lifestyle changes. I don’t think about jeez, “I really wish I could do X thing that I used to do.” I feel just better for it. And I feel like the mindfulness is a real thing for me, whether it’s social media, whether it’s drinking, whether it’s smoking, eating garbage, essentially, all those things I don’t miss and I do feel better for it, not even in relation to my MS.

Geoff Allix  06:51

So smoking is one we don’t talk about a lot. It’s not actually one of the Seven Pillars of Overcoming MS, which I find slightly strange in a way, but it’s almost like, “Yeah, well, that’s obvious.” There’s like, you do the seven things. It’s like, yeah, but don’t smoke as well. So you were a smoker. So how did you find quitting smoking? Did you just stop instantly? And what would be your tips for someone who is is a smoker? Who’s got MS?

Jesse Mirsky  07:23

Yeah, I really love that you’re asking about this, because of exactly what you just mentioned, it often feels like it’s just something that we throw in, hey, change your whole lifestyle. Oh, yeah, and then also just quit as if it’s an easy thing to do. I would actually say is probably the toughest part of my lifestyle changes. I really struggled for about two years with smoking. Whereas my drinking, getting that under control was actually almost easy and immediate in comparison. It feels like I tried everything to quit before I got a handle on it, which included things like tracking every time I smoked, and then trying to reduce the number of times each day, going cold turkey, reading about how horrible smoking is for your health. So the scare tactics, etc. All those things. At the end of the day, I actually found Allen Carr’s “Easy Way to Stop Smoking.” That book really worked for me. And it’s not unlike what I mentioned about Overcoming MS in that book. “The Easy Way to Stop Smoking” really spoke to me like I’m an adult who just needed to better understand that I didn’t want to be smoking. Once that light went on in my head, it actually became a lot easier. So today, I don’t wish I could smoke. I don’t have cravings, nothing like that. To me, it all goes back to the emphasis on mindfulness that’s promoted in the Overcoming MS Program, diet, exercise and reading books have essentially replaced smoking as an area of focus in my mind.

Geoff Allix  08:49

I went with a different approach. My now wife, when we got together originally, it was about a week into one of my many attempts to stop smoking. And she asked if I smoked and she was not a smoker. And I said no, because I wasn’t smoking at that point for about a week. She’s very anti smoking, very, very anti smoking. And then I was kind of committed. It’s like well, I said if it’s the girl or the cigarettes, I think I’ve told her I don’t smoke, so I need to not smoke. That’s what tipped it over the edge. And we’re still married. So yeah, I haven’t smoked since.

Jesse Mirsky  09:23

There were a lot of periods of, you know, making progress and then caving after a week. And honestly, it was, like I said, it was probably the hardest part of the lifestyle changes because I really sort of beat up on myself. I really got down about you know, I failed and back to square one. So when I finally got a handle on it, it felt like I really overcame a major, major hurdle in this whole process for sure.

Geoff Allix  09:50

Yeah, no, it’s hard, though. I mean, it’s that I think people don’t say you know, smoking’s enjoyable. That’s a bit they don’t think it’s if you’ve never smoked you think why on earth would you put that flaming material in your mouth and the first time you ever smoke, you know, you’re young, it’s I think you overcome the dislike for it and that but then it is, you know, you enjoy it. And that’s a problem, isn’t it? It’s very hurtful. So, in the the Overcoming MS seven step program, or 8 step program with “Don’t smoke.” What aspects do you like most? And have found most straightforward to implement?

Jesse Mirsky  10:28

Yeah, so I think exercise is probably my favorite aspect of Overcoming MS. It’s something I work at every day, whether it’s long walks, or going to the gym. More recently, I started boxing. So taking the boxing class as well, which has been really awesome for me. And yeah, in addition to smoking in terms of what’s been difficult, I think the the usual answer that I hear from the people I talked to in the community is usually meditation. I would say diet and figuring out what works best for me, was not a simple process either. So I actually follow a different diet that emphasizes a lot of the same values as the Overcoming MS diet, dairy-free, being whole food based, low saturated fat content and very similar supplement regimen. And that’s the Best Bet Diet. So I eat lean meats, as opposed to the vegetarian approach of Overcoming MS. I was actually a vegetarian for five years before my diagnosis. So when I decided to change my diet, reincorporating meats was actually an important area for me. I really love and appreciate that Overcoming MS has always been supportive of incorporating other evidence-based approaches into the program, or my own personal program. We had a long and really helpful talk about this in my Circle recently. And I came out of that chat feeling supported by my group and encourage overall too.

Geoff Allix  11:48

And we’ve had had Matt Embry, who’s, who came up with, I think his dad came up with that diet, and he’s been on the podcast and equally he’s, you know, similar. He’s saying, “Yeah, the Overcoming MS Diet will work for a lot of people. You might have a gluten problem, which is very common with people MS. Best Bet doesn’t have gluten, Overcoming MS does have gluten. It’s finessing, isn’t it the core, dairy-free, Whole Foods, low saturated fat diet, I think is core across all of them.

Jesse Mirsky  12:20

For sure. And I think, because MS is so unique to each individual. I mean, I talked to people with MS all the time, and none of us have the exact same symptoms, or MRI readings, anything like that, you really have to find what works best for you as an individual. So I think listening to your body is a big part of it. And there’s always going to be an element of trial and error too, just to find what works best for you as an individual.

Geoff Allix  12:45

Yeah, I think that’s the weird thing. So I met with my Circle at the weekend. And it’s good, because they will understand what it’s like to have MS. And someone was saying that, but the thing is, we’re actually understanding the fact that we’re all different. It’s not like we have a thing that we’re all the same, we’re actually all completely different to each other. But we kind of get that and we understand the that it’s nerve damage. So it could be anything. And it could be completely different symptoms, each we have but we kind of understand them and think there’s some core things to think, like fatigue tends to be. And we know, there’ll be some symptoms that people have. Okay, and that’s gonna be MS. And well, that probably isn’t MS. That’s probably as my doctor likes to tell me the fact that I’m a middle aged man. So I have got a bad back I do now with glasses. So you’re the ambassador, as you mentioned, for the Toronto area. So what, what’s the value of being the ambassador for Overcoming MS?

Jesse Mirsky  13:45

Yeah, I mean, I do a lot of volunteer work, as I mentioned, but with Overcoming MS. It’s really the people and I mean, that’s true across the volunteer work, but it’s definitely a special type of person who shows up to the Circle meetings each month. And we have a really special and amazing community. It’s it’s truly just unique. So I come out of our monthly meetings, always feeling informed. And I feel like I’m part of an incredible community, which I am. We talking about difficult things and it’s not always easy, but I leave feeling validated and positive just because I know that there are others out there on the same journey as me, which is really consistent with what you just mentioned about. It’s we just understand each other as people with MS. It’s not necessarily that, “oh, you have that symptom. This is what you do.” It’s really just empathy and listening. And with the Overcoming MS group, it’s a certain type of person comes where they’ve educated themselves, they care a lot about the lifestyle changes that they can embrace. So we have a really, really strong group and it’s usually the same people coming back every month. And then we grow a little bit each month. So it’s really amazing to see the impact that we’re having, just by getting together virtually and having conversation.

Geoff Allix  15:03

And could you tell us a bit about your volunteer work with MS Canada as well?

Jesse Mirsky  15:07

Yeah, for sure. So MS Canada, recently rebranded, but it was formerly called the MS Society of Canada. It’s a national organization, obviously here in Canada that provides services to people with MS and their families. Similar, I think, to the MS Society in the UK. In 2021, I started the support group for people who are newly diagnosed through MS Canada. And I’ve also had the privilege to speak at various events and education, webinars, etc. The Newly Diagnosed Support Group is a place where anyone still in the early or discovery stages of their diagnosis and come to chat virtually once a month with a group of others who can relate like we were just talking about. Support groups are really just such a vital sort of part of your health network in those early stages. I know that for me, support groups have been a major part of my healing process. The group has grown and continues to grow a lot over the last few years. And we are now also expanding the offering to include more focused smaller group chats, which is really exciting too. This support group is currently only open to Canadian-based participants or attendees. But I encourage anyone who’s listening and interested and not based in Canada, find your local Overcoming MS circle or other MS support group. If you’re in Canada, you can contact MS Canada through the Navigator Network and ask about the ND or Newly Diagnosed peer support group.

 

Geoff Allix  16:37

And how do you find the people that are coming along to that? So with the MS Society in the UK,  I’ve given a talk for newly diagnosed people. What I found strange the the number of people who weren’t prepared to do anything other than take a tablet or an injection. And they literally nothing there were like there was they wouldn’t change anything about the lifestyle and actually said, “Well, I’ve got MS that’s bad enough, I don’t need to change” and do you know might be you might be better. Or your disease my progress less, that’s what I found. And I don’t know if that’s a UK, Canada thing, we do find that sometimes there’s quite a lot of resistance to doing anything?

 

Jesse Mirsky  17:23

Yeah, with the newly diagnosed group, it’s definitely a far more mixed bag, if you will, of people. So Canada has a really, really high incidence rate of people being diagnosed with MS. So I think it’s just natural that our group is going to grow, we get a lot of new people. Every month, a lot of people come back each month, but we also see new faces, every month. And like I was saying with Overcoming MS, yhat’s a certain type of person with MS who has taken it upon themselves to embrace a new lifestyle. Whereas you’re absolutely right. Sometimes people are not interested. Sometimes people are just like we get people that are you know, “I was diagnosed on Tuesday,” and we’re meeting today on Wednesday. So in that case, you can’t really expect them to to change their lifestyle or read a book about it or anything like that. But really what what we do in the newly diagnosed support group is we offer our experiences. So if someone is curious about a diet, I can tell them about the success I’ve had with my dietary changes or other lifestyle changes. But we’re definitely not, you know, trying to sell them on anything. It’s really just a place where if you are that type of person that is not interested in changing their lifestyle, that’s okay, too. If we can guide you in a direction that will, you know, improve your quality of life following an MS diagnosis, we are more than happy to do that. But if you’re that person who is just not interested, you are still absolutely welcome. And your experience is completely valid and important to be shared with the group because I think everyone regardless of their approach to their MS diagnosis and journey, I think it’s extremely valuable to have your input and your experience and your contributions to the community. But yes, to your question, you will get people that just don’t want to know about that. A lot of the time, they’re coming to the group because you know, someone told them they should and they’ll come one time and maybe they’ll hear something that resonates. But it’s definitely a different sort of profile of person, generally speaking, compared to say, the Overcoming MS circle that I also volunteer with.

 

Geoff Allix  19:37

So as someone who gives a lot of advice to newly diagnosed people, if you were to give advice to yourself as a newly diagnosed person, what would that advice be?

 

Jesse Mirsky  19:46

For sure, and I let me just start by saying I do my best to not give advice, at least to others to my to my former self, yes, of course. But I think the real value of volunteer work in support groups is so that I’m not there to fix your MS, I’m not there to tell you what you should or shouldn’t be doing. Like I said, I can share with you my lived experience, what’s helped me what’s going well for me. So just as a starting point, I always try to not tell people what I think they should do. But I’m always happy to offer my lived experience. And that’s true for anyone in the newly diagnosed support group. In terms of giving myself advice, if I could talk to my younger self, I would say find others who are living with this disease. I have some amazing people in my personal life, and they’re here to support me, too. And I consider myself very lucky for that. But finding my community and connecting with people who can relate and understand when I’m talking about things like fatigue, or double vision, or that jelly and tingly feelings in my legs. When I found those people, that was the turning point for me. So through my involvement in the community, whether here in Canada, with MS Canada or Overcoming MS, I get to speak to a lot of people living with this disease on a regular basis. And it’s become the most valuable and important aspect of my life in a lot of ways. So we’ve done surveys and ask support groups I work with why they come to the meetings and what they get into the groups. And the answer is almost always the same. They say things like I’m here to find my community. I’m here to find my people. And that answer always inspires me and encourages me to keep going.

 

Geoff Allix  21:29

Right. And with that, I’d like to thank you very much for joining us, Jesse Mirsky.

 

Jesse Mirsky  21:33

Thank you so much for having me.

 

Overcoming MS  21:38

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at overcomingms.org/podcast you’ll find useful links and bonus information there. Have questions or ideas to share? Email us at [email protected] or you can reach out to Geoff on Twitter at @GeoffAllix. We’d love to hear from you. Thanks again for tuning in and see you next time for tips on living a full and happy life with MS.