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A
Welcome to the MSGYM podcast. I'm your host, Jodi Feltham. And today we chat with Ms. Gym member Michelle and learn about how she navigated the early years of balancing an Ms. Diagnosis, post secondary education and a career. She will also share about how she continues to volunteer, pursue her passions while keeping her health as a priority. Hello, Ms. Gym family. I'm so glad you could join us for another msgym podcast episode. Today we are chatting with long term member Michelle. So, Michelle, thank you so much for joining with me today.
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B
Thank you so much for having me.
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A
Where are you joining us from, Michelle?
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B
I'm in South Carolina right now.
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A
So, Michelle, when did Ms. Show up in your life? When did your symptoms start?
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B
I was diagnosed in 1997 at age 22. And it just, it's funny because other people I know say they've had, they had symptoms long before they were diagnosed, so they think they had it a long time before they were diagnosed. But I, that didn't happen with me. I just. One day I woke up and I was actually getting out of the shower and everything on my right side was completely numb. Everything. My, my face. So that was strange. At the same time, I had had a, an ear infection that was not going away. So I went to an ears, nose, throat doctor and he did an mri and at that point he saw that I had some lesions. So I was sent to a neurologist and then he diagnosed me. After a second MRI and a spinal tap, they diagnosed me with Ms. But I had had, I had it for five and a half years and I could still walk, I could still do exercises, things like that. But 2002, at the fall, I had a relapse and it left me with my, was hard for my right leg to bend, so the muscle was, was weakened. And at that time I was relapsing, remitting. I, now I'm secondary progressive. I probably switched. I probably transitioned maybe 2006, 2009, around that. And so I've just, since then I've just been trying my best to stay the same. I walk with a cane, but the last couple of years I've been walking with a walker. I actually, I do both. Walking with the cane has just become, it makes me very tired. So the walker is just to conserve energy when I'm out.
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A
Fair enough. So when all this came about. So you, you said you were 22 and you said it was in 96.
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B
Not. Yeah, my first, my symptoms started in 96. I was diagnosed in 97. Yeah.
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A
Okay, so 22 obviously you're done school, maybe you're starting secondary education. I don't know if you've were married or thinking about getting married at that point. Like what, what life challenges or what life situations were you in? 22 is so young.
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B
Yeah, I had just graduated college and I was just embarking on my career. I started working in a residential facility for young girls who with traumatic histories. So then I, I started my career in social services and then I went back to, for grad school to get my master's in school counseling. I also speak Spanish, so I, I had lived in Spain when I was in college and so every job that I had after college, I with the social services, I, I worked with Spanish speaking population.
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A
Okay.
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B
In and around Boston.
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A
That sounds like a very valuable skill to have and it certainly has, has lended use for you. So did you like you were diagnosed with. Well, it took a little bit within the year you were diagnosed. Did. Had you heard of Ms. Or.
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B
Yeah.
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A
Family have other neurological conditions?
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B
Yeah, my dad has Ms.
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A
Okay.
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B
And I was told that it's not hereditary but familial and it's often passed down from the male to the female. My father's brother's daughter, so my cousin has Ms. So that's just very interesting. So it was when I was diagnosed because he, he just, he had, I think he had an isolated incident syndrome or whatever. However, because he had an optic neuritis and he had a, you know, he had steroids. I do remember him. I was in 8, 8th grade I think. So he was in his mid-40s. I remember he did walk with a cane for a bit, but that's it. So it was just Ms. When I was diagnosed. It wasn't a big deal to me. It was just a word to me was until, like I said, the relapse that it kind of, that's when I started, you know, having trouble. At the same time as the relapse, I was having pain in the left side of my neck, the neuropathic pain. It felt like somebody cutting me with a butcher knife that was on fire.
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A
Oh dear.
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B
And that was constant. And it was, I was in agony. It also kind of climbed up to my, my head and felt as if hot iron was kind of rusting on my head.
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Okay.
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B
So I was, I was tried on many pain prevention medicine and then I, I would have, you know, Percocet or some kind of opiate for the breakthrough pain.
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A
Yeah.
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And thank God that lasted, let's see, about four, three years now I have don't have it at all.
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It.
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B
It ended just as quickly as it started.
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A
Okay. So, yeah, I'm glad to hear that. I don't know if it's trigeminal neuralgia. I know that a lot of people with ms, they have that where they have excruciating face pain and it's like lightning bolts in the face. So I don't know if that's. If that's some of the symptoms that you were experiencing. So from the time of 22 to now, have you been on any medications or done any lifestyle changes?
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B
Yes, I started when I was first diagnosed. Back then, actually, in 97, they didn't put you on medicine right away. They wanted you to wait. They wanted you to wait for. To have another relapse and then. Or another incident and then go on medication. So diagnosed in 97, I didn't go on medicine until 2000.
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A
All right.
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B
And that. I was on Avex, and that was back when the Avenex, you had to mix it yourself.
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Okay.
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B
So that's kind of the timeline of how long I've had it. And then that wasn't that really. I didn't have success with that. So a year later, I went on Copaxin. And I loved that it worked until it didn't work because I had had an MRI and I. They saw lesions in my spine. So before that, I had had it just in my head. Then I. They were in my spine. So. So then I went on tapery, and I was on that for a couple of years, and that was the best. But I'm GC positive.
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A
Yeah. JCB vi. Yeah.
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B
Yeah. So I only could stay. I was on it for about two years, like I said. And then I switched to Jalenia after Julenia was, I think, Retexab.
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A
Okay. Yep.
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And then O Crevis.
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A
That's quite a list of. Yeah. You must feel like a little bit like a guinea pig with all those different trucks.
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B
Yeah. I loved Ocravice, but at one point, I had gotten myself. And I want to kick myself. I had gotten myself on a. On a website that said, you know, has a crevice failed you? And I kind of was getting a little bit worse, so thinking, oh, my God, did it, you know? So I tried Mason.
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Okay. Yeah.
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Or secondary progressive. But unbeknownst to me, the Mason is something that you go on when you're first transitioning to secondary progressive. Now, I had had it for a while, so the Mason really didn't do anything for me. So at that point, I went on Symptom. So monkey something now.
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Okay, that's. Well, kizimta is like a variation of Ocrevus.
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B
Exactly. Yeah.
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A
It works the same way. That's interesting.
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Yeah.
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A
So when, when did you go about finding exercise or finding the Ms. Gym? Like, at what point did you say, okay, I've got these medications, I'm, I'm plugged into this. When did you adopt any lifestyle or exercise changes?
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B
I was always into exercise before the diagnosis and nothing changed after. I continue to exercise. I still continue to exercise. I don't stop moving. I get very anxious when I'm not moving. When, you know, a couple of people, my doctor, one of my doctors and many physical therapists have told me that exercise is the best medicine. And then of course, you know, the Ms. Gym. And I actually found the Ms. Gym, I'd say about three years ago. And I think it, I don't know how it came about. I think maybe, you know, our phones kind of follow us and know what we're, what we want to see and, you know, see what we're looking at. So I was looking, you know, I always, actually, I always research Ms. I'm always online about trials and things like that. And it must have just found me. I don't actually really remember when I started, but it's been a few years now and it's the best thing ever happened to me. Yeah, I, I feel like it's kind of along with the exercises I do myself and the PT I do myself, I feel like it's, it's keeping me, it's maintaining.
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A
That's great. Yeah, that's great. So you said you were involved in social work. Is that something still that you're doing or have you stepped away from it?
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B
No, I was, was about 2008 and I was working as a guidance counselor in the city outside of Boston. And it was getting harder for me to do an 8 hour day or 40 hour work week. 8 hour day. I was getting so incredibly tired. So I left that job and then I started another one briefly. And I just, finally I said, I can't do this. So I applied for disability and in 2009, you know, I, I got it. And then I. Shortly after, I worked part time at a. Being a counselor and actually also teaching reading in Spanish to kids three to seven years old. And I was there for ten and a half years.
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A
Okay.
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Yeah. And I loved it at that point. I was walking just with my cane. And then I. 2019, I came down here. My. It was very stressful. My. We, We Moved. My mother passed away when she got here. So I've been down here with my dad ever since then for about five years. So when I first got down here, I volunteered interpreting at a women's clinic. And at that point it was, it was actually very far away from where I live. So that was kind of. I was getting tired from that and so I didn't work for a while. I don't work anymore. It's too much for my body. But I do volunteer once a week at a, at a school here.
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A
Okay. Okay. So you're, you're keeping yourself busy, you're doing some volunteer work, obviously exercises front center in your life. So that's great. What other, what other passions do you. Well, obviously helping other people is a huge passion of yours.
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B
Yes.
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A
What would you say in the next few years? Like what, what goals or what things are you working towards? Or maybe there's some events that you're excited for?
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My passion is, is my passion is again doing volunteer work. I take Spanish lessons. I, I speak with a woman in Mexico just to kind of keep up my Spanish. So I don't know in long term goals. I would love to, I've traveled a lot in my life and I'd love to go back to Spain, but that's it for right now.
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A
What would you say maybe your, your biggest achievement, whether physical or mental, since you've been in the Ms. Gym? Like, what are you super proud of?
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B
Many therapists have told me when I talk about my regimen, they. I've been told that I'm, I'm the exception in all the work that I do compared to what people that they've known. I'm just proud of the work that I, that I keep doing. I also have osteoporosis and I know that a lot of people with Ms. Have that. So I walk, I walk outside every day with my walker, mainly to keep walking and also it's beneficial for the, for osteoporosis.
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A
What would you say to the. Michelle at 22, like looking back, what, what advice would you give her?
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B
It's something that was impossible then, but to go on medication right away to find yourself not a neurologist, but an Ms. Specialist. And I did, I did that. My, my brother is a, is in the medical field and he. Once I was diagnosed, the, the neurologist that diagnosed me wasn't that great of a, of a doctor. So we went into Boston and we kind of interviewed different Ms. Specialists and every neurologist I had or Ms. Specialist I had after That I made sure they knew me, that I wasn't just a number, that I had a relationship with them. So I think that's important too, to not be a number. To make sure your Ms. Specialist hears you, sees you, listens to you, and to keep moving. No matter if they're feeling awful or if they're feeling great and don't think they should move, you know, keep moving. And I know it's hard when you're depressed and thinking, you know, why me? Or this is horrible. I mean, I've been there and I haven't been able to get out of bed sometimes. Not physically, but emotionally. I mean, also find a counselor that if they have trouble, you know, explore any medication that could help you through this.
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A
Absolutely. So it sounds like your advice would be like, plug into all the resources that are around you, whatever you have access to, and really be an advocate for yourself. Like. Yes. No. No one's gonna baby you or pamper you. You have to fight for you, fight for your rights. Right. You have to, you have to pursue treatment or counseling or the right medical team that you need, because no one, it's not going to be just, it's not going to be served up to you on a golden platter. So I think, I think that's really good advice and I think that's something in, you know, people learn in the chronic illness community that, that we have to become advocates for ourselves. And it's so important.
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Yeah.
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And it's, I think it's good for our mental well being as well.
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Your sense of power, sense of that you have a voice.
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Absolutely. Yeah. It's.
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It's definitely one thing I've learned since being diagnosed to be, to speak up, to be your own advocate. Because a lot of times if you don't, you'll just be passed by.
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We learn words like tenacity and persistence and all those things that other people might perceive it as annoying, but we know, we know what it takes. Like repeated phone calls and things like that.
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Exactly, exactly.
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So, Michelle, what it, what does your support system look like? It, does it look any different now than when you were first diagnosed? Obviously on your, your mom was there in the beginning and obviously, you know, there's a loss that you haven't had her to help you. Over the last five years, from the.
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B
Time I was diagnosed, my friends and family have been there 100. I couldn't ask for anything better. I'm lucky, very lucky just to put in there as far as employment. I'm very open about my Ms. I'M very open to everybody. I'm not because it's, this is what I have. And so my father always taught me, you know, disclose after you get the job.
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Absolutely.
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So never disclosed before. And that's what I've always done. So the first, so I had my first job out of college. I had, had, I had Ms. So that's what I had done, that's what I did for my whole career was get the job first, then tell them.
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A
Okay. And when you were first diagnosed, people wouldn't have that much knowledge about Ms. Like obviously it's been around, but there's not in, in 90, 96, 97, it wasn't as prominent it is now. So there'd be a lot of misinformation out there as well.
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B
So I, I didn't know. I mean I, I know a lot more now about it than I ever did. Certain facts about cigarette smoke or alcohol and just, just other things in terms of, you know, facts about like familial things and how, how Ms. Came to be and just about your, your descent, you know, being a Northern European descendants being more, it's more prevalent in people of, that were grew up above the equator before the age of 15. They have a better chance than getting Ms. Than below the equator. Just other, just facts I've learned.
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A
Absolutely. There's so many, there's so many more resources and there's so much more information they gathered. But at the same time too sometimes they realize they, there's so much that they don't know. Yes, there's just so many different causes of Ms. And they don't know all of them. And, and there is what you talk about being familial, there's obviously some sort of genetic component, but they, but they don't know. You know, they can't say, oh, it's this gene. So there, there's a lot to, to learn that they know now, but there's also a lot that they don't know. And I, when I meet someone, you know, recently diagnosed with msp, I say to them, I said it's, it's never good to be diagnosed with ms, but I think now with all of the medications and with all that they have, people have the best chance of living disability free for a lot longer.
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B
Yeah, I completely agree with that. I had said to one girl, girlfriend of mine was diagnosed after she had her third child and she went right on to Tysabri. And I said, well like you said, it's not a good time. You know, it's never a good time to get diagnosed, but at this point, that's the best. They have the best things, best medications and stuff like that.
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A
Absolutely. Well, Michelle, it was nice to get to know you a bit better. It's so great to learn more about our Ms. Gym family members. And, you know, we all have some things in common, maybe the diagnosis, maybe the symptoms. But it's always nice to, to learn more about others and about how they have managed their Ms. Journey. So thank you again, Michelle, for joining me today.
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B
Thank you so much.
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A
Thanks for tuning in to another episode of the msgym podcast. You can find more about the msgym on Facebook, YouTube, Instagram and@themsgym.com.