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.

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.

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.

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 |

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

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.