Episode 445: It's MS Awareness Week with Kristine Werner Ozug and Kim, Kim, and Kim

Summary

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RealTalk MS – Episode 445: It's MS Awareness Week with Kristine Werner Ozug and Kim, Kim, and Kim

Host: Jon Strum
Air Date: March 9, 2026

Overview

In honor of MS Awareness Week—and in keeping with this year’s theme, “Unseen Seen MS”—Jon Strum brings together stories centered around the invisible and visible symptoms of Multiple Sclerosis. The episode features two main segments:

1. Interview with Kristine Werner Ozug: A member of the RealTalk MS team who lives with mostly invisible MS symptoms, sharing her long road to diagnosis and how “invisible” disability has shaped her life.
2. Roundtable with Kim P., Kim W., and Kim Fredsall: Two people living with MS (one with largely invisible, the other with visible symptoms) and their physical therapist, reflecting on the challenges of different MS presentations and the value of individual support and therapy.

The conversation seeks to raise awareness about how MS is uniquely experienced, and how support and understanding can be crucial for patients, families, and caregivers.

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Segment 1: Kristine Werner Ozug – Living with Invisible MS

Guest: Kristine Werner Ozug
Main Topic: Navigating Invisible Symptoms, Diagnosis Challenges, and Advocacy

A Long Path to Diagnosis

• Kristine’s Timeline:
  • Began experiencing non-specific, invisible symptoms for almost five years before receiving her MS diagnosis at Shepherd Center in Atlanta (Diagnosed: March 30, 2012) [02:19].
  • Experienced skepticism, misdiagnoses, and medical gaslighting, including being told her pain could not be MS because of her age and appearance.
• Notable Diagnostic Journey:
  • “I saw a community neurologist for almost five years before I got a diagnosis at shepherd center in Atlanta... I had a lot of maybe what you would call non specific symptoms.” — Kristine [02:19]
  • Describes being misdiagnosed with epilepsy (“sharp wave in my left temporal lobe”), being denied the right to drive, and eventually demanding to see an MS specialist who properly recognized her symptoms as MS [03:34–10:12].
  • Faced dismissive attitudes: “She looked into my eyes and she said, you don’t have MS. You know, look at you, you’re young, you’re fine, everything’s fine. You know, there’s no way.” — Kristine, recalling a neuro-ophthalmologist [approx. 06:45]

The Reality of Invisible Symptoms

• Daily Life:
  • Symptoms include cognitive dysfunction, a paralyzed vocal cord, and severe trigeminal neuralgia.
  • Lost her career due to cognitive dysfunction, which led to personal grief and identity loss.
• Quote:
  • “Looking at me, you would not know these things… you wouldn’t understand the recovery time it takes. You wouldn’t understand the grief, the quiet grief that I went through, losing my career, losing relationships, the traumatic divorce I went through after I lost my career...” — Kristine [10:27]

Feeling Understood—and the Need to Explain

• Explaining MS:
  • Felt the need to over-explain and overcompensate, especially right after diagnosis, due to guilt and her identity as an “overachiever.” [13:50]
  • Describes an advocacy moment: confronting strangers about her need for accessible parking and educating them about invisible disability. [13:50–15:50]

Planning for an Uncertain Future

• Impact of Unpredictability:
  • “MS is an unpredictable disease. How do you plan for the future when your symptoms can change literally at any moment?” — Jon Strum [16:46]
  • Kristine relies on adaptable solutions (moving to a home with an elevator, flexible planning) and regular therapy for cognitive issues. [16:58]
  • Financial planning is complicated by her transition to disability after career loss.

Advice for the Newly Diagnosed

• Coping with Uncertainty:
  • “It always comes back to uncertainty...and I understand that.” — Kristine [20:13]
  • Stresses the value of focusing on what can be controlled, taking things day by day, and seeking therapy and support.
  • “MS kind of just magnifies what’s already going on in life. MS is uncertain, but life in general is uncertain.” [21:30]
  • Credits years of neuropsychological therapy as essential for redefining her sense of self after diagnosis.

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Segment 2: Kim, Kim & Kim – Navigating Visible and Invisible MS

Guests:

• Kim P.: Diagnosed with relapsing-remitting MS (2008), mostly invisible symptoms
• Kim W.: Diagnosed with primary progressive MS (2022), more visible physical symptoms
• Kim Fredsall: Physical Therapist, Gaylord Specialty Healthcare

The Contrast Between Visible and Invisible MS

• Kim P.:
  • Experiences fatigue, cognitive issues, and “word salad.” Symptoms are largely invisible, leading to both strangers and family sometimes overlooking her needs.
  • Quote: “Often, even with our own family members, sometimes they can forget that I have MS because Kim Ward’s symptoms are so visual and mine aren’t. So they often forget that I also am fighting the same disease.” [27:24]
• Kim W.:
  • More pronounced physical symptoms (balancing, walking issues, spasms).
  • Reports mixed societal responses: greater assistance when she uses a walker or wheelchair, sometimes ignored when “walking normal” but struggling internally.

The Emotional Toll

• Validation & Defeat:
  • Kim P. describes feeling “defeated” by the lack of acknowledgment from others: “So it feels like I’m a little always behind the eight ball, if you will.” [28:13]
  • Kim W. discusses the emotional rollercoaster of acquiring a primary progressive diagnosis and the initial sense that “my life was over to me.” [35:59]

Rehabilitation & Individualized Therapy

• The Gaylord Approach:
  • Kim Fredsall emphasizes the necessity of tailored interventions:
    • “I guess the best treatment is one tailored to the individual and one based in up to date research...promoting activity to not lose activity and be as independent as possible, but making it salient to the individual.” [30:12]
  • Both Kim W. and Kim P. highlight how individualized therapy at Gaylord has been positive and adaptable, meeting their changing and distinct needs.
  • “It's very customizable and I do appreciate that because a lot of times I feel like people are telling us what we need to do and not so much talking to us about it.” — Kim P. [32:10]

Support, Community, & Advice

• Getting Through the Hardest Times:
  • Peer support (support groups in person and via Zoom) and finding people who relate is crucial.
  • “I learned, like, this isn’t the end of the world. Like, I can adjust my life and do things maybe different, but I can do them.” — Kim W. [35:59]
  • Normalize seeking group support: “Having an opportunity to talk to somebody who also has MS can help ease...the discomfort or the wallowing that you may be in or unhappiness.” — Kim P. [35:13]
  • On sharing the “embarrassing” symptoms within patient groups: “That kind of camaraderie is indispensable.” — Kim P. [37:59]
• Words for the Newly Diagnosed:
  • “Breathe through it.” — Kim W. [33:56]
  • Allow time for self-compassion, but then move forward; having support in the home (Kim P. and W. together) made a huge difference.
  • Therapy and support groups were universally valuable.

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Notable Quotes & Memorable Moments

| Quote | Speaker | Timestamp | |-------|---------|-----------| | “Looking at me, you would not know these things… you wouldn't understand the recovery time it takes. You wouldn’t understand the grief…the ongoing grief that occurs with the loss of function and ability over the 14 years.” | Kristine Werner Ozug | 10:27 | | “People always are trying to take pictures of us in our cars because we look young and not like we're handicapped until I have to get her walker or her wheelchair out.” | Kim P. | 27:24 | | “I learned, like, this isn’t the end of the world… I can adjust my life and do things maybe different, but I can do them.” | Kim W. | 35:59 | | “That kind of camaraderie [support groups] is indispensable.” | Kim P. | 37:59 | | “MS kind of just magnifies what’s already going on in life. MS is uncertain, but life in general is uncertain.” | Kristine Werner Ozug | 21:30 | | “Breathe through it.” | Kim W. | 33:56 | | “The best treatment is one tailored to the individual and one based in up to date research.” | Kim Fredsall | 30:12 |

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Key Timestamps

• 00:01–10:12 – Kristine’s journey to diagnosis; invisible symptoms
• 10:12–16:46 – Living with invisible MS, over-explaining, advocacy
• 16:46–23:40 – Coping, planning, uncertainty, and advice for the newly diagnosed
• 24:02–28:10 – Kim, Kim, & Kim introductions; contrast between visible and invisible symptoms
• 28:10–32:10 – Emotional impact, societal reaction, and therapy experiences
• 32:10–38:39 – Therapy, support, community, and advice to listeners

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Final Thoughts

This episode is a raw, candid exploration of MS—from the lengthy, often lonely diagnostic journey, to the lifelong balancing act between invisible struggles and visible disabilities. The guests remind listeners that MS is fundamentally unpredictable and deeply personal, but that custom support, community, and the courage to advocate for oneself make all the difference. As MS Awareness Week centers on the theme “Unseen Seen MS,” these stories underscore the realities and the resilience inside the MS community.

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Transcript

[A]

I'm john strum, and this is real talk, mississippi. It's March 10th, and we have a lot to talk about. This week is Ms. Awareness Week, and I think the best way to raise awareness about Ms. Isn't just to talk about it. After all, we already do that every week on this podcast. But I find that what makes Ms. Real for most people, what truly raises awareness is meeting someone and learning firsthand about their Ms. Journey. One of the unique aspects of multiple sclerosis is the way that it can impact people so differently. So I'm devoting this episode of the podcast to sharing a couple of quite different stories. First, we'll hear from someone who may already be familiar to some of you, especially if you follow our research conference coverage. Christine Wernerozog is part of the RealTalk Ms. Team. And in this episode, Christine shares the details of living with mostly invisible, but nonetheless very real symptoms of Ms. In a moment, you'll meet Christine wernerozig. It's Ms. Awareness Week, and this year the theme is Unseen Seen Ms. Christine Werner Oza lives with Ms. And she's also a member of the Real Talk Ms. Team. So when I thought about talking with someone who's dealing with the unseen, invisible symptoms of ms, I immediately thought of Christine. Thanks for sitting in the interview chair today.

[B]

Of course, it's good to talk with you again.

[A]

Most people think that when you're sick, you go to the doctor, you get a diagnosis, and you begin treatment. So I think the first invisible aspect of Ms. That a lot of people have to deal with is the amount of time it can take just to get a confirmed diagnosis. So let's start there. When were you diagnosed? How long did it take to get that diagnosis? And what kinds of things did you have to overcome before receiving your diagnosis?

[B]

I was diagnosed in 2012, March 30, 2012 to be exact. So we're coming up on 14 years. I had quite a long and difficult path to diagnosis. I saw a community neurologist for almost five years before I got a diagnosis at shepherd center in Atlanta. And yeah, it was, it was very difficult. I had a lot of maybe what you would call non specific symptoms. And my primary care doctor, who I had seen since I was a very young teenager, suggested I see a neurologist. And so that's when I kind of started on this journey.

[A]

So it's interesting that every symptom you were dealing with at the time, they would all be considered invisible symptoms.

[B]

They were. And, you know, I did go to the neurologist and I I did have imaging and nothing showed on the imaging. I also had migraines as well as the imaging. He ordered blood tests. He also ordered an eeg. If people don't know what that is, it's to test your brain waves to see if you have seizures. And I remember I came back to a follow up appointment and I heard him in the hall talking about some brain waves and seizure activity and someone's not going to be able to drive for six months and epilepsy. And I was like, oh, that doesn't sound good. And he was talking about me. So he came in and said I had a sharp wave in my left temporal lobe. And he thought that, that that was the cause of all my symptoms. And, you know, was there epilepsy in my family? Had I been having seizures? And I was like, no, no. And I was prescribed a large dose of Topamax and I couldn't drive for six months. So that was one of the first diagnoses I received. And then we moved on to nerve conduction studies. And the whole time my MRI images weren't, they were clear. For a number of years, I did a neuropsychological evaluation that showed I was not depressed, I was not anxious, but I did have some mild to moderate cognitive dysfunction and my motor skills were somewhat affected as well. This was really alarming for me because I was a college athlete and I have a master of science and, you know, technical and scientific communications. And I, I didn't understand what, you know, what was going on. But they couldn't still contribute it to a specific diagnosis. At the time, they said it was a neurological disorder, probably the seizures I was having, which I was still like, I'm not having seizures. So I kept seeing them, giving the updates on my symptoms, getting MRIs. And in 2011, at the end of 2011, it was the first time I had a few little spots on my MRI and I had severe left eye pain. I was sent to the neuro ophthalmologist because of the severe eye pain. And she looked into my eyes and she said, you don't, you don't have Ms. You know, look at you, you're young, you're fine, everything's fine. You know, there's no way. And I said, well, what is this eye pain? And she said, it's a swollen eye socket. And I said, well, what is that from? How do you get that? She said, oh, it just happens. And I remember her, literally, she had her hand on my shoulder, like pushing me out the door. So a few months later in March, I still had this horrible eye pain. And the nurse practitioner that I had been seeing all of these years begged me to do another mri. I had gone to that appointment in March ready to tell her that I was done with all the tests, all the MRIs. I was saying to her, whatever this is, it's not killing me. And I feel crazy. Everyone thinks I'm a hypochondriac and I can't do this anymore. And she said, one more mri. So I did it. And the next morning I get a phone call from the nurse practitioner and the neurologist. And they asked if I was somewhere where I could talk and sit down. And they told me that there was a mass, a large mass on my MRI and asked if my family had a history of cancer and that they had an appointment for me with a neurosurgeon in a few days, that they needed me to go. So I was very shocked and very surprised to hear after years of Nothing on my MRIs, now all of a sudden, I have almost a 4 centimeter mass. So I went to the neurosurgeon and he said, not quite sure what this is. It could be a brain tumor or it could be a very large tume factor of Ms. Lesion. Let's wait four weeks or so and see if it changes and decide if we want to do a biopsy. I left there very angry, and I called my nurse practitioner and I told her, no one is going to cut into my head. I have a long history that points to Ms. More than it does a brain tumor, and I want a second opinion with an Ms. Specialist. And she agreed. And wasn't but a week later that I had an appointment with Dr. Ben Thrower at the Shepherd Center. And he walked in and he said, tell me your story.

[A]

So many people hear Ms. Just like the neuro ophthalmologist that you saw, and they immediately look for a cane or a wheelchair. So how do you describe your Ms. To someone who says, but look at you, you look so healthy.

[B]

It's very interesting, the situation that I'm in. I attend Ms. Talks, I give talks, I attend research conferences. And more often than not, there are people that live with Ms. Or others that ask me, oh, are you a nurse? Are you a farm, you know, a farmer, rep, or are you a researcher? And on the one hand, it's a little gratifying in a way. On the other, can feel isolating. I have a paralyzed vocal cord that, that we found during these five years of, you know, what is going on with me. I have cognitive dysfunction, and three years after I was diagnosed, I had to leave my job that I loved. I had severe trigeminal neuralgia that got uncontrolled up to a couple years ago where I decided to have a gamma knife radiation surgery on the nerve right at the brainstem. Yeah. So looking at me, you would not know these things. You wouldn't know the time it takes for me to plan, to attend an event, to give any kind of talk, to collect my thoughts. You wouldn't look at me and understand the recovery time it takes. You wouldn't understand by looking at me. The grief, the quiet grief that I went through, losing my career, losing relationships, the traumatic divorce I went through after I lost my career, the ongoing grief that occurs with the loss of function and ability over the 14 years. These are things that I rarely talk about and share. I think this is the first time I've ever talked about my personal Ms. Because I like to come at it more from a community standpoint, a collective standpoint, and a science and research standpoint. And that I'm very careful not to put myself in the center of those things. And when I talk about myself in this respect, it does get a little emotional.

[A]

Do you find that you have to over explain your Ms. To others because the kinds of struggles you describe aren't visually obvious?

[B]

The first few years I was diagnosed, I felt like I did. I had a tremendous amount of guilt to understand that. I think people would need to understand that the kind of personality I am, that I was an overachiever. And maybe I shouldn't put that in the past tense. But, you know, being a college athlete, being, you know, an overachiever in school with my job, if I wasn't giving what I felt was my hundred percent, which was probably more like 200%, I had this guilt and I felt like I needed to over explain or over compensate for what I felt were huge gaps in my abilities where I don't think a lot of people noticed. I do think I did come at things more from an awareness and teaching standpoint. For example, I remember one time I hadn't been diagnosed very long, and I. I went to the mall, which is something I don't really ever do. And it was in Atlanta in the summer, so it was like 95 degrees, and I parked in a handicap space, and when I get out of my car, there were two women walking and staring, and I overheard them talking about me. And, you know, why is she parking there? She doesn't look like she Needs to park there, those sorts of things. Things. And I took the opportunity to walk up to them. I introduced myself at the time I was serving on the board of trustees in Georgia. I handed them my card and I decided just to educate them about Ms. And tell them why I was parking there. And they were really nice about it. And you know, I told them I would love their support and the upcoming walk. That's how I started approaching things with people I didn't know and I didn't find. I had to do a whole lot of explaining with my friends and I think with my family. It just, it takes time because it was a shock. Shock for them as well.

[A]

Ms. Is an unpredictable disease. How do you plan for the future when your symptoms can change literally at any moment?

[B]

I wish I had like some great pearls of wisdom after living with this for 14 years. Honestly, it's a struggle for planning anything is a struggle for me. And that's one of my big cognitive issues. And I go for cognitive tune ups every so often with my speech therapist because planning and executing tasks, which I used to be just fabulous at, I struggle with. But into the future, into, you know, what, what does my future look like? You know, I don't want to get caught in the what ifs, but then again, you don't want to be caught with not planning or not having resources or, you know, or not having some type of plan. So for example, my husband and I moved last October, a year ago in October, to a home that has an elevator. And right now I, I try to use the stairs, but if I'm carrying things or maybe I'm having, you know, a few days where I don't feel great on the stairs, I do use the elevator. You know, planning for trips is a little difficult. You know, I like to plan things in advance and I also like to know what's going to happen on what days. So I know what to bring and what to expect. And you know, you can't always, you can't always count on that. I've learned to be a little more flexible and go with the flow with things. Financially planning is important, but when I lost my career and being on disability. You have quite limited options of saving for your future though. Yeah, there's a lot of decisions and just day to day planning, you know, a month or two out planning for trips and then you have far into the future planning. And I think when, when I was first diagnosed, I was just trying to do, you know, day to day, week to week planning because that's all I could wrap my head around at that point.

[A]

I heard you say a moment ago that you didn't have many pearls of wisdom to share. I would disagree with that. And for someone newly diagnosed who also has primarily invisible symptoms, what advice would you give them about advocating for themselves?

[B]

I meet with a lot of people who are either on the journey to diagnosis or who are newly diagnosed or their families, and it always comes back to uncertainty. Uncertainty about the new medication that they're going to start, the uncertainty about what the immediate future is going to look like or even, you know, in a few years, what it's going to look like. I mean, it's really uncertainty, and I understand that. And what I tend to talk with people about is uncertainty around medication. People always want to hear what my DMT journey was like, and I hesitate to tell people because, you know, I'm on my sixth dmt and that's only because they didn't have my DMT when I was diagnosed. But now the people I know get to start, you know, on that one or one like it. They, they don't have to go through, you know, what I went through. For the most part, people get on a high efficacy DMT and can hopefully stay on one. And that's what I hope for, you know, that, that all the things that are happening right now and research and everything are things so people don't have to go through everything I went through to get a diagnosis or to, to get on a med, you know, those types of things. And the other thing about the uncertainty is that I think, like you and I have talked about before, Ms. Kind of just magnifies what's already going on in life. Ms. Is uncertain, but life in general is uncertain. And we've all had the best laid plans and then for one reason or another, they don't happen. And I don't try to discount the feeling of having Ms. And the uncertainty because I understand that the fear around that is real. But just taking things one day at a time in the beginning and trying to put into perspective the things that are within your control and the things that are not in your control and focusing on those and making sure you have a good support system, you know, a few good friends, a few good family members, and even a therapist or a counselor, you know, I'll share. I saw a neuropsychologist for six years for therapy, and it did wonders for me. I don't know if I would have gotten through losing my career trying to understand who I was without that identity and how I was going to live in this world now without the identity of being somebody with a career, without having that therapy and that resource.

[A]

Christine, I want to thank you for being transparent and being brave enough to talk about really what amounts to the very worst aspects of your day to day life. Thank you for helping raise awareness during Ms. Awareness Week.

[B]

Oh, thanks for talking with me and I hope this helps somebody that's listening.

[A]

Kim P. And Kim W. Have been together for the past 16 years. Kim P. Was diagnosed with relapsing remitting Ms. About 18 years ago and Kim W. Was diagnosed with primary progressive Ms. Just three years ago. Although Kim W. Was diagnosed much more recently, her Ms. Symptoms are much more visibly apparent than the invisible symptoms that Kim P. Lives with. Kim and Kim are joined in our conversation by a third Kim, Kim Fredsall, who's a physical therapist at Gaylord Specialty Healthcare in Connecticut. In a moment you'll meet Kim, Kim and Kim. This year, Ms. Awareness Awareness Week is focusing on the unseen, invisible symptoms of Ms. And I want to welcome Kim, Kim and Kim to the podcast. Kim W. And Kim P. Have been together for more than 16 years. And the third, Kim, Kim Fredsoll, is a physical therapist at Gaylord Specialty Health Care in Connecticut. When I say welcome to the podcast, Kim, you can each interpret that as I'm welcoming Kim you. So Kim P. Tell me, when were you diagnosed, what was your diagnosis and what sort of symptoms are you experiencing?

[C]

I was diagnosed in 2008 and with relapse remitting and my initial symptoms were optic neuritis and weakness in my legs. So right now it's a lot with fatigue, brain fog and like word salad, just forgetting things. I'm more cognitive and the other Kim is more physical. So we're opposites of each other.

[A]

So the other Kim, Kim W. When were you diagnosed, what was your diagnosis and what sort of symptoms are you experiencing?

[D]

I was diagnosed in 2022 after I had a nocturnal seizure. My first and only one so far. They saw the white lesions in my back and some in my neck. So they did all the testing and I had primary progressive Ms. My symptoms are balance and walking strength spasms kind of thing. It's still new to me to try to figure out, like, is it the seasons, you know, what's going on. But a lot of it is more physical than it is me forgetting things or brain fog. So we kind of balance each other out.

[A]

Yeah, I guess so. So one of you has been diagnosed with Ms. Much longer than the other, although Kim P. Happens to be dealing with largely invisible symptoms, while Kim W. Has a much more recent diagnosis but more visible disability.

[D]

Yes.

[A]

So this question is really for both of you. When you're out in the world, do you find that you're treated differently based upon how apparent how visible your disabilities happen to be?

[D]

Yes.

[C]

Very often I am immediately dismissed. You see it the most, I guess, when you even go handicapped parking, for example. People always are trying to take pictures of us in our cars because we look young and not like we're handicapped until I have to get her walker or her wheelchair out. But often, even with our own family members, sometimes they can forget that I have Ms. Because Kim Ward's symptoms are so visual and mine aren't. So they often forget that I also am fighting the same disease.

[A]

How does that make you feel?

[C]

Defeated. You know, for everything that we go through with this disease, it's a mental battle as much as anything else, because we're constantly trying to guess if something is a symptom, and we deal every day with different symptoms that people don't see or don't know about. So it feels like I'm a little always behind the eight ball, if you will.

[A]

I understand. Kim W. What's your experience in terms of how the world sees you, how the world treats you?

[D]

If I'm having a good day and I might look like I'm walking normal and I'm pushing a cart around the store, people treat me, you know, whatever. Even though my leg might be dragging, they might not care. When I'm in the using the role later, I think I've noticed more that, oh, this woman has problems. I don't necessarily think sometimes people care and they push whatever. They don't care. But I think it's more noticeable with me. When I'm having a roll later day or something like that, people will hold the door open for me or, you know, get out of my way. But there's other times when I'm kind of walking on balance, but I'm able to push a cart using it. They. It's, you know, they don't notice it.

[A]

Right. I'm very familiar with the shopping cart as camouflage for mobility.

[D]

Yes, It's a great. It's a great method.

[A]

Yes. So, Kim Pretzel, you've worked primarily with Kim W. But you see both. Kim's in your Ms. Support group, right?

[E]

Correct.

[A]

So in your experience, which kinds of rehab interventions have the greatest impact on someone living with ms?

[E]

That's a almost impossible question to answer because, as you know, everyone with Ms. Is different. Highly Variable, really. I guess the best treatment is one tailored to the individual and one based in up to date research and really understanding the benefit of exercise in a safe way and promoting activity to not lose activity and be as independent as possible, but making it salient to the individual.

[A]

Kim W. How do you think physical therapy has impacted you?

[E]

No time to answer that question because

[D]

she just said she just tired me out.

[E]

She's not particularly pleased on me.

[D]

Honestly. When I first started coming To Gaylord in 2023, it was kind of right after I could barely walk. It was really like my spas. It was like almost like a relapse of Ms. That I never had before. Like I just went from walking and stuff, normal life, had a seizure and then I couldn't do anything. And coming here, they really have changed me. Like I work hard because like me, but they change everything every time to go with my symptoms, things like that. So honestly, they have changed the way I do things outside of here, like pushing myself, using things in here. But everything's always changing. It's not just coming in scripted, like today's Tuesday, we're doing this. It's. How do you feel, Kim? What's this? Let's work on balance. You know, it was always. It's always subjective to me. And we work on things that I need, not what the book says, let's do this next. And that's what I love about Gaylord. They're looking out for us.

[E]

And Kim P. Also sees a different therapist for her needs. And do you feel like that's the same experience you have with your other Gaylord therapist?

[C]

It's very customizable and I do appreciate that because a lot of times I feel like people are telling us what we need to do and not so much talking to us about it. So it's nice to have therapists who sit down and have the conversations with us and check in with us constantly to make sure that we are getting what we need from it. So I have seen wonders with Kim's therapy from. Even if she takes some time off because she had to have an operation done, so she took some time off for it and she couldn't go to therapy. It made a huge difference in her daily life. So I am very thankful to Gaylord for that. But they've also helped me even with simple stuff. And I like how the therapists don't make us feel like we are injured or lacking in any way. So it's, it's always a really positive environment and I, I really feel good about It.

[D]

It's.

[C]

It's the best place that I've been for any kind of therapy.

[E]

Thank you. When you're here, you're going to work hard, despite whatever diagnosis you have. That's not your car to get out of any therapy.

[C]

Lack of tiredness, but, yes, you're going

[E]

to do hard things, but be proud of yourself. Yeah.

[A]

Yes. So let me ask you, Kim W. There's probably someone listening to our conversation right now. They've been recently diagnosed. Based on your experiences, what advice do you have for them?

[D]

Breathe through it. Yeah. I was devastated when I got diagnosed, and I think it almost made it easier for me to have Kim in the house with me, because for 16 years, I've seen things happen, and she says this feels like that, and I never understood it. So when I got diagnosed and those same things were happening to me, I understood the feeling, but it also kind of defeated me at first because it was a new thing. And being diagnosed with primary progressive versus relapse, it really threw me. And I was down in the dumps for quite some time. Like, nothing, anything, my whole life was ruined. Kim used to say to me, you have a year to wallow in your pity. And then after that, you need to realize that you're still living, you can still do stuff, and let's go. So, yeah, I had a year of couldn't. Woe was me. Couldn't do anything. The pity party. And they also, you know, with the support groups and therapy and things like that, it helped me through the first couple years, year at least.

[C]

I feel like it's important to seek out at least some type of support group, whether it's on the phone or in real life, to seek out somebody that you can talk about your symptoms with, that understands where you're coming from. Because I think a lot of times with ms, we feel so isolated because it's like nobody really understands where we're coming from because we're all so vastly different. But having an opportunity to talk to somebody who also has Ms. Can help ease that. You know, the discomfort or the wallowing that you may be in or unhappiness.

[D]

And even coming here, seeing other patients that, you know, there's people with other injuries and other things that are going on with them, and they can. They're in wheelchairs. And here I am walking. So I learned, like, this isn't the end of the world. Like, I can adjust my life and do things maybe different, but I can do them. And that's the first. The first year that was the Hardest thing to even realize. My life was over to me. What am I going to do? Life is over and it's. It's not. I just needed to believe in myself and work and change things, get a different way to do something.

[E]

If, you know, you feel like you need support or therapy, go to the National Ms. Society. Look up therapy in your area, support groups in your area. Our support group at Gaylord is also offered virtually through Zoom. So we've had people from. She was from, like, Indiana.

[D]

Yeah. That she had nothing around her. I think it was Indiana. She had no support, support groups, nothing. And she came on ours and she was, like, so thankful that she could look at people in this room that all had Ms. And when she said, I feel this. And we all went, yeah. And she was just so happy because she's like, I always feel like I'm crazy. I tell people this and they look at me like, what are you talking about? And then here's people in a support group and she says something. We're like, yeah, we know that. So, like, the support groups and things that Gaylord does, like that with the Ms. Has been so helpful being around and talking to other Ms. Patients or Ms. Clients and things like that. Like on the support that we don't even know and just talking and not feeling like you're crazy when you say this feels like this, and they know.

[C]

So you don't feel as embarrassed to talk about some of the more embarrassing side effects that we have to deal with. You know, so being able to be with a. Grow a bunch of people and. And coming out and asking the questions when you're talking about whether it's like, incontinence, which can be super embarrassing, people don't want to talk to their family about it. They don't understand. But you can talk to other people with Ms. And they understand, and they can give you helpful hints or can help guide you in the right direction. And that kind of camaraderie is indispensable.

[A]

Well said. Well, Kim and Kim, I want to thank you for sharing your stories. And Kim, I want to thank you for lending your expertise to this conversation. I think you have all. All made a difference in terms of what and how people think about now that I'm diagnosed, what comes next? Thank you all so much and I appreciate you talking with me today.

[D]

Thank you for having us.

[A]

That's going to wrap up this episode of Real Talk. Ms. Real Talk, Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser. [e-mail] 445 you'll find that link in today's show Notes, so you can easily copy and paste it right into an email or a text. Iconquerms is where the entire Ms. Community, the patients, the care partners, and the researchers all come together to find answers. It's the ultimate example of people powered research in action. So what's it like when Iconquerms attends a major scientific meeting? I hope you'll join me next week as I talk with the iconquerms Leadership team, CEO Sarah Loud, Chief Science Officer Stephanie Buckshoveden, and VP of Scientific Operations Holly Schmidt. We're discussing their experiences at this year's Actrooms Forum and the vital research Iconquerms is currently driving forward. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.

[E]

Sam.