Samantha Balistreri , Physical Therapist & Mitchell Bodnar , Living with MS
1 Oct 2021 | ~28:20 Engagement Time
Reminiscing on Jimmie Heuga’s can do spirit, Mitchell Bodnar shares how he thrives with multiple sclerosis and focuses on all that is possible in celebration of Can Do Month. Special thanks to our Can Do Month sponsors: Bristol Myers Squibb, Sanofi Genzyme, and Genentech.
Can Do Month: Interview with Mitchel Bodnar
Host: Welcome back to the Can Do MS Podcast. This episode features Mitchell, who lives with MS and has attended several Can Do MS programs. We’ll hear how his life has changed since his diagnosis and how Jimmie Heuga’s legacy continues to light the path forward. We’ll also talk about Can Do Month and how you can get involved and inspire others. Thanks for tuning in. So, Mitchell, thanks for joining us.
Mitchell: Thank you so much for having me. I’m really excited to be here.
Host: Well, why don’t we start by getting to know you a little better? What was your life like before your MS diagnosis?
Mitchell: So, before my MS diagnosis, which happened very early in life. I was actually diagnosed when I was 20 years old. I had a pretty normal upbringing. I thought I was going to graduate high school, go to college, go to graduate school, get a job, and just live my life. That all changed when I was diagnosed with MS. I had a wrench thrown into my life that I didn’t really know how to deal. I’m not going to say it changed me for the better at first, but it did.
Host: Yeah, and your mom actually recorded a podcast with Can Co MS back in August 2020. She talked about how she realized something was going on, but you were no longer comfortable driving. Do you feel okay talking about that and what led to your diagnosis with MS?
Mitchell: Sure. When I was 20 years old, I almost got into a car accident because a car literally came out of nowhere. When I got back to my home at the time, I told myself that I was just not comfortable driving and it was at that moment that we really started to realize something was wrong. I had been symptomatic for years before I had actually gotten my diagnosis, but we just didn’t know that it was all caused by MS. So, I went from having near perfect vision to being legally blind in about three months. So, you can
imagine how much that really changed my outlook and change my life.
Host: Absolutely. And you are 20 at the time, you said?
Mitchell: Yes, I was 20 years old when I was diagnosed with MS. But they think I had
been symptomatic for years before I was diagnosed.
Host: You also mentioned about how Can Do MS really helped shape your life and your
views of having multiple sclerosis. Do you remember attending your first program and
what that was like?
Mitchell: I do. My first program was actually a JUMPSTART. It was in Reno, Nevada.
When I first got there, I kind of had this mentality that my disease was going to control my life and there was nothing I could really do about that. But once I got to Can Do MS
and I started to learn more about Jimmie’s story, I started to realize that the disease isn’t
going to control me. I can control the disease. It is amazing how long of a journey it’s been since I began this change, but it has been an amazing journey, and I can’t thank
Can Do MS enough for helping me change my life.
Host: Wonderful to hear. How old were you when you first attended your Can Do MS
JUMPSTART Program that you mentioned?
Mitchell: I want to say I was 22, so, about two years after my diagnosis. My mother actually stumbled across the fundraiser in Squaw Valley, the ski for MS. She learned a little bit more about the charity and what they were doing and realize that it was just the
kick in the pants that I needed to really get my life going in the right direction again.
Host: That’s great. Your mom has attended several events too. So, Can Do has been a
family affair for all of you.
Mitchell: It has. I can’t thank my family, my friends, I can’t thank them enough because
the amount of support that I have gotten from everyone around me, in regards to Can
Do MS and taking charge of my life has been an absolutely invaluable resource.
Host: That’s great. Well, as you know, we’re celebrating Can Do Month to celebrate Jimmie Huega’s birthday. You once mentioned that the story of Jimmie really inspired
you. Can you tell us a little bit more about that?
Mitchell: There are actually a lot of stories about Jimmie that inspires me. One of the
ones that comes to mind right off the bat was actually a story from another person
about Jimmie, but it was how the person showed up to take Jimmie on a bike ride, and he had expected Jimmie to be resting all day, maybe reading a book, watching some TV, just doing something that you would expect a typical MS patient to do. But instead of that, Jimmie said, “Oh yeah, I want waterskiing.” This was back when he didn’t have the use of his legs, and that story still to this day inspires me to know that I can do anything that I set my mind to.
Host: Yeah, you absolutely can. So, Jimmie Heuga, he is someone that you really have admired and looked up to, and you even have some things of his that you kind of wake up to. You told me that you look at every morning and it sets the tone for your day. Mitchell: I do, I actually have a photo of Jimmie skiing on my wall that I look at every morning when I wake up. It reminds me that I control my disease and that I can take the day and do whatever I want with it. I can be successful.
Host: Yeah, and that’s a very big Can Do attitude that Jimmie really wanted to give to all the people that participated in his nonprofit. So it’s wonderful that his legacy continues. I know this is a big topic for you, but I was hoping you could share how you thrive with MS
Mitchell: I thrive with MS through a couple of different things. There are some things that I have found over the years to be incredibly helpful and some things that actually Can Do MS has introduced me to. Before I was diagnosed with MS, I should mention I had a horrible diet and I didn’t really exercise that much. So, changing my diet to a plant-based diet has been incredibly helpful for managing my symptoms personally as well as including consistent exercise and stretching. I stretch every morning when I get up now and I exercise two to three times. Whether that be going for a walk, riding my exercise bike, it doesn’t matter. I just have some form of physical cardio activity and that has been incredibly helpful.
One of the other ways that I thrive with MS is the support group I’ve spent time creating. I have an incredible support group, both online and in person, that I can reach out to pretty much at any time of day, and I know somebody is going to be there to help me through any specific difficult time I’m having. That has been an incredibly useful moment or that has been an incredibly useful thing for me to have.
One of the other things I do to strive with my MS is, I found the right MS medication. This took a lot of time, it took a lot of coordination with my medical team and it took a lot of trial and error, but eventually we got on a medicine that I have been thriving on. I’m consistent with my medication dosage. I’m taking it when I’m supposed to and it has really helped change my life.
Host: Were you active prior to your diagnosis? Did you participate in sports or other types of exercise? Or is this something new that you jumped into after the diagnosis?
Mitchell: This is something completely from Can Do MS.
Mitchell: If you talk to my parents, which I’m a little bit ashamed to admit but it’s the truth, I ate no vegetables and I didn’t really exercise, play sports or do anything like that. So, this has been a complete change to come from Can Do MS and it’s a change that I’m really happy that’s been made.
Host: Do you remember anything about the program that really inspired you to start exercising or what made you get motivated to stick with it?
Mitchell: So, I remember I saw a graph and on the graph they had the progression of the disability for MS. And then they had another line that showed the progression of the disability if you just make dietary changes, progressions of the disease if you make exercise changes, and then progression of the disease if you do both, and the both line was half the size of the other two in terms of slope. So, I just knew that by doing these things, I’m setting myself up to live the best possible life I can.
Host: Yeah, that’s great to hear. You mentioned something else that helps you thrive with MS is the support group. Can you tell me a little bit about how you set up a support group and how you started your own?
Mitchell: So, this actually took a lot of time but it was a very worthwhile investment. I just found people with similar interests to me. I started taking up new hobbies. I just tried to introduce myself to as many people as I could. And over time, I found people that I wanted to surround myself with, and those people became my support group. I started telling stand up after my diagnosis because I just wanted to make people laugh. In doing that, I met some absolutely fantastic people that have really changed my life. One of my friends, Tate, who I know is actually listening to this right now is a huge supporter of Can Do MS. They actually set up reoccurring monthly donations in my name, just because they’ve seen how much Can Do MS has changed my life. So, it’s incredible to know that I have such a loving and caring group of friends and family that will always, and I mean always, be there no matter what.
Host: That’s incredible. I know sometimes we invite family and friends and people from support group to join in on JUMPSTART programs and other coaching sessions. Have you had several different family and friends attend the Can Do MS program with you?
Mitchell: I know my mom has attended the JUMPSTART with me and she also attended the five-day program in Atlanta that Can Do MS did. But I know there are just so many people in my life that have pledged financially to support Can Do MS. They’ve donated their time, they’ve taken up fundraising on behalf of this organization just because of me, and it’s such an inspiring thing to know.
Host: Wow, that’s great. What do you wish other people understood about Multiple Sclerosis?
Mitchell: The biggest thing that I wish people understand about Multiple Sclerosis is how hard it can be to make plans, because you’re not going to know how you’re going to feel the next day. You’re not going to know how you’re going to feel next week. So, just be flexible with people with MS. We really are trying our hardest and sometimes plans just don’t work because “Hey, I’m sorry. I woke up feeling symptomatic or MS-y today”, but know that we really are trying.
Host: Yeah, I love that. It’s a diagnosis. You wake up and see how today goes and it’s really difficult to make plans because you’re not sure what your day is going to entail and how you’re going to feel that particular day. In your mom’s podcast that she did back in August of 2020, with Can Do MS Podcast, she mentioned that at one point, you were using a cane and it was difficult for you to use it at first, but you realize that it kind of helped your balance. I was hoping we could talk about that a little bit because I think mobility and assistive devices are very important for a lot of people, but it can be difficult to start to utilize them. I was hoping you can talk to that a little bit. Mitchell: Sure. I will say that I’ve gotten to the point now where I’ve done a lot of abdominal strength exercises and I can actually walk without the cane, and I spend most of my time walking without an assistive device. But they’re still good to have. It took a lot for me, 21-years-old, to admit “Okay, fine. I need to use a cane” but of pride and I always try to have the best outlook I can. So, it was like a statement that no matter what I’m fighting with, I’m going to succeed and I’m going to prevail. Oh, yeah, my balance may not be as good as it once was, but now I’m taking control and I’m fighting for myself. There was a couple of funny instances with a cane. I remember I had to cut across the quad at my school at my university to get to one of the buildings that I always had trouble getting across during the passing period. But when I had my cane with me, it was almost like Moses parting the Red Sea, and everyone just kind of formed a little bubble around me and gave me space. So, I’m not saying that using an assistive device should be used only for the benefit. I’m just saying, if you look hard enough, you will find benefits to using an assistive device.
Mitchell: I have my dog Rio, who’s also a balance dog, and he has become my best friend. Hands down.
Host: What kind of dog is Rio?
Mitchell: He’s a German Shepherd.
Host: Okay, and he’s a trained support dog?
Host: Okay. How long have you had Rio? Mitchell: Four years now, I think.
Host: Okay. Mitchell: I honestly couldn’t tell you how long I’ve had him because he feels like he’s been there forever.
Host: Yeah, that’s great. I hope that you might have heard mine. I hope you didn’t but he was kind of making some noises and going round to. My dog is a rescue. He is definitely Rhodesian Ridgeback, but definitely some Lab too.
Host: Your diagnosis story is very interesting. Will you talk a little bit about how you were diagnosed and who actually was integral in helping you get the diagnosis?
Mitchell: Sure. When I was coming up to get my diagnosis, we couldn’t really figure out what was wrong and there was a lot of doctors that were puzzling over it. But I went to
my ophthalmologist who recognized that there was something going with my optic nerve. So she sent me to an optometrist who then sent me to a neuro-ophthalmologist. He was really the integral one in getting me diagnosed. That’s how quickly my vision was deteriorating. I had three eye doctors telling me something’s wrong. There were just symptoms that I look back on and I see, “Oh, that happened. I had muscle weakness. I had balance problems. I had vision problems. I had some bladder and bowel issues, and it just all kind of adds up when I look back on it, obviously, hindsight is 2020. So it can be very difficult to think about my life beforehand, but I realize that I’m in a much better place now and I am a much better person. Because right after I got diagnosed and while I was kind of leading up to diagnosis, I thought I was dying. I really did. I thought I had brain cancer, which was hard to grapple with as a 20-year-old.
Host: Yeah, that’s very difficult. Mitchell: What I was going to say is it was very difficult to kind of grapple with the severity of my illness at the time, and that really impacted me after my diagnosis. I mean, I was 20 years old laying in the hospital right before Christmas thinking to myself “Oh my God. I’m either going to completely go blind or I have multiple sclerosis.” At the time, those both didn’t seem like good options. Host: Right.
Mitchell: After I was diagnosed officially, I had a lot of time to sit there and think about what was happening to me, and I gave up. It’s hard to admit still to this day, but I let the MS take control of who I was. So, when I found Can Do MS and they kind of showed me that I can be whoever I want to be, it lit a fire inside of me to say, “I don’t want to be dead. I want to be the living.” It just made me kind of re-evaluate my whole situation and I can’t thank them enough for that.
Host: You got a really inspiring story, understanding where you started with your diagnosis and how young you were to know how far you’ve come and how much Can Do MS has helped you. I think it’s really inspiring for a lot of people. What Can Do advice do you have for others living with MS?
Mitchell: The Can Do advice I have for people living with MS is build yourself a support group. Go to meetings with other MS patients. Find other people online that had MS. Surround yourself with people that understand what you’re going through because I can promise you that you’re not alone no matter how much it might feel like it. And that support group will always be there, especially if you find the right people.
Host: I love that. How many Can Do programs you think you’ve been involved with over the years?
Mitchell: If I’m counting the fundraisers, seven, I think.
Mitchell: Can Do has been a huge part of my life and it’s going to continue to be a huge part of my life.
Host: I love that. Well, thank you so much for being with us today and sharing your story, Mitchell.
To everyone who’s listening, if you’d like to be part of Can Do Month movement, check out our website at cando-ms.org/candomonth and share a photo of how you thrive with MS. Special thanks to our Can Do Month sponsors, Bristol-Myers Squibb, Sanofi Genzyme and Genentech.
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