Mind Over MS: Strategies for Staying Positive

Summary

Podcast Summary: MS Living Well – Mind Over MS: Strategies for Staying Positive

Host: Dr. Barry Singer
Guests: Ardra Shephard and Tyler Campbell
Date: October 1, 2024

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Episode Overview

This episode explores the psychological challenges faced by people living with multiple sclerosis (MS) and highlights real-life strategies for maintaining hope and resilience. Dr. Barry Singer interviews two prominent MS advocates—writer and media producer Ardra Shephard and former college football player turned motivational speaker Tyler Campbell—to discuss coping with a new diagnosis, navigating progression, finding meaningful support, and embracing change.

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Key Discussion Points & Insights

Ardra Shephard: Embracing Change and Redefining Support

Early Symptoms and Diagnosis

• Initial Symptoms (01:35): Ardra experienced optic neuritis and hearing loss at age 23, mistaking initial signals for more benign issues:

  “Honestly, I kind of thought I had a hangover. I was 23.” — Ardra (02:06)

• Diagnosis Experience: Rapid diagnosis due to classic symptoms; experienced significant fear and lack of knowledge about MS.

Finding Peer Support

• Peer Connection (03:15):

  “It was super important for me to find people who were the same age and life stage and disease stage.” — Ardra (03:19)

  • Created a local support “wine club” with other young women.
  • Noted drawbacks of traditional support groups for newly diagnosed younger patients.

Navigating Progression and Disability

• Transition to Progressive MS (05:51):
  • Emotional struggle and lack of resources as she moved from relapsing to progressive MS.

  “Almost as hard as being diagnosed was the transition from so-called relapsing disease to progressive illness.” — Ardra (05:51)

  • Concept of “smoldering MS” only recognized much later in her journey.
• Stigma and Equipment (09:00):
  • Psychological challenge of adopting mobility aids, facing public reactions, and overcoming self-judgment.
  • Used social media to destigmatize assistive devices:

    “I was no longer going to let the world tell me what these devices mean about myself.” — Ardra (09:33)

Advocacy and Creativity as Purpose

• Adaptive Fashion and Media (10:01):
  • Created and hosted “Fashion Dis,” a show highlighting inclusive fashion for people with disabilities.
• Coping on Bad Days (12:49):

  “I’m a fan of having a good old-fashioned meltdown. I think it doesn’t help to pretend that everything’s okay when it’s not.” — Ardra (12:51)

• Role of Real Support:
  • Emphasized needing multiple sources of support—spouse, friends, dog, and MS peers.

  “Ms. Or not, you need multiple resources to manage your psychology and your emotions.” — Ardra (13:35)

Becoming an Advocate

• Starting ‘Tripping on Air’ Blog (14:25):
  • Motivated by a desire to be understood and normalize stigmatized topics like self-catheterization.

Advice for Struggling Patients

• Medical and Social Help (15:37):

  “If you have anxiety and depression, I think it’s really important to get those things looked at medically. They’re medical issues, and there are many, many things that can help.” — Ardra (15:37)

  • Stressed the importance of finding new purpose and community, creatively reinventing identity post-diagnosis.

Final Reflections

• On Future Possibilities (18:43):

  “What I learned having MS that I didn’t know when I was diagnosed is that all my best days weren’t behind me.” — Ardra (18:43)

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Tyler Campbell: Acceptance, Advocacy, and the Power of Movement

Diagnosis and Athletic Challenges

• Onset as an Athlete (19:36):

  “My first symptom was a wealth of fatigue. I did not understand why I was so lethargic during training.” — Tyler (19:39)

• First Major Relapse (20:39):
  • Sudden paralysis and loss of function after a football game:

    “Instead of getting out of bed and walking, I got out of bed and I fell on my face.” — Tyler (21:03)

• Quick Diagnosis (22:18):
  • Access to collegiate sports medicine led to rapid identification of MS.

Concealing Diagnosis

• Hiding MS from Coaches (23:40):

  “To this day, I never had a conversation with a coach about my disease.” — Tyler (23:43)

  • Feared losing his scholarship and educational opportunities.

Hitting Rock Bottom

• Lowest Point (25:20):
  • Isolation from teammates and first experience of erectile dysfunction.

  “That thing that I thought defined me bigger than football was taken. And that was the lowest of the lows.” — Tyler (26:26)

Turning Point and Advocacy

• Path to Advocacy (26:56):

  “When I started to accept...life started to give me back. I understood what patient advocacy could potentially be for me.” — Tyler (27:19)

  • Channeled personal struggle into supporting other African American men and young people with MS.
  • Openness and public speaking started three years after diagnosis.

Building Support and Village

• On Disclosing to Others (29:18):
  • Stressed readiness and self-acceptance before sharing diagnosis, especially in dating.
• Support Network (28:37):

  “My mother and my father embraced and loved me...those were the individuals that helped me pull.” — Tyler (28:37)

Practical Coping Tips

• Finding Your Village (30:07):

  “You have to continue to work to find your village. And your village can be one person...You can’t fight it by yourself.” — Tyler (30:07)

  • Encouraged participation in support groups, in-person or online.
• Movement as Medicine (31:13):

  “If all you have is the functionality of a finger, then doggone it, move the finger more than you did yesterday.” — Tyler (31:21)

  • Advocated for physical activity at any level and time in nature as mental health boosters.

Evolving Perspective

• Shift in Values (33:04):

  “I value time probably a lot more...the gift that came back to me was I started having more relationships of meaning with people because MS slowed me down.” — Tyler (33:04)

  • Developed deeper listening and appreciation for others’ stories.

Overcoming Shame

• Final Thoughts (36:04):

  “I just hope that today we can move shame out of the window and we can help people begin their next steps on their journey mentally and physically with MS.” — Tyler (36:04)

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Notable Quotes & Memorable Moments

• “It was super important for me to find people who were the same age and life stage and disease stage.” — Ardra Shephard (03:19)
• “Moving into that gray area of progression is much more subjective...for me it was a real struggle.” — Ardra Shephard (05:51)
• “I was no longer going to let the world tell me what these devices mean about myself.” — Ardra Shephard (09:33)
• “I’m a fan of having a good old-fashioned meltdown.” — Ardra Shephard (12:51)
• “My first symptom was a wealth of fatigue.” — Tyler Campbell (19:39)
• “You have to continue to work to find your village...You can’t fight it by yourself.” — Tyler Campbell (30:07)
• “If all you have is the functionality of a finger, then doggone it, move the finger more than you did yesterday.” — Tyler Campbell (31:21)
• “I value time probably a lot more...the gift that came back to me was I started having more relationships of meaning with people because MS slowed me down.” — Tyler Campbell (33:04)
• “What I learned having MS that I didn’t know when I was diagnosed is that all my best days weren’t behind me.” — Ardra Shephard (18:43)

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Important Timestamps

• 01:35 – Ardra’s first MS symptoms and rapid diagnosis
• 03:19 – Importance of finding peer support
• 05:51 - 09:59 – Navigating progression, stigma, and embracing mobility aids
• 12:49 – Coping with bad days and need for multiple support sources
• 14:25 – Ardra’s advocacy journey and breaking taboos
• 18:43 – Message of hope for newly diagnosed patients
• 19:39 – Tyler’s initial symptoms as a student athlete
• 21:03 – First major relapse and sudden physical loss
• 23:43 – Concealing diagnosis out of fear for athletic future
• 25:20 - 26:36 – Rock bottom: isolation and erectile dysfunction
• 27:19 - 28:35 – Acceptance and path to advocacy; support systems
• 30:07 – Value of building your “village” and support group
• 31:13 – Importance of movement and being outside
• 33:04 – Perspective shift and the value of connection

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Conclusion

This episode provides an honest look at the emotional landscape of life with MS, from the shock of diagnosis to the hurdles of adaptation and ongoing mental battles. Both guests model vulnerability, resilience, and proactive self-care—empowering listeners to seek the support they need, redefine their identities, and find purpose beyond MS. The enduring message: no one has to face MS alone, and a fulfilling, meaningful life is possible at every stage of the journey.

Transcript

[A]

Foreign welcome back all to the Ms. Living well podcast. I'm Dr. Barry Singer, director of the Ms. Center for Innovations in Care at Missouri Baptist Medical center in St. Louis. This episode is Mind Over Strategies for Staying Positive. This episode is sponsored by TG Therapeutics. In today's episode, we're tackling the psychological challenges that many people living with multiple screw with a new Ms. Diagnosis. Often there's an intense fear of what the future may hold. We'll discuss how to cope with the rough days living with worsening disability and how to find real support. For this episode, I'm honored to be speaking with two amazing patient advocates who've turned their personal struggles with Ms. Into powerful stories of resilience embracing change. Later in the show, we'll talk with former college football player and professional speaker Tyler Campbell. But first, let's hear from Ryder fellow podcaster and television host Ardra shepherd from Toronto, Canada. Ardra's award winning blog and podcast is Tripping on Air. She's also the host of the television series Fashion Dis, a makeover show that features adaptive fashion for people with disabilities. Welcome to the podcast, Ardra.

[B]

Thank you so much. It's great to be here.

[A]

Wonderful. So let's start the beginning of your Ms. Story. Can you tell our audience what were your first Ms. Symptoms?

[B]

My presenting symptom was optic neuritis in one eye and I lost some hearing in my right ear. And it was very dramatic. Actually, about six weeks later, I had started to lose vision in my other eye and I'd had some sensory symptoms and some gait problems. I mean, I guess the good part of that was that I had such a classic presentation that I got diagnosed very quickly.

[A]

What did you think was wrong with you before you got diagnosed?

[B]

Honestly, I kind of thought I had a hangover. I was 23.

[A]

Hangover? That's amazing.

[B]

It's like the worst headache of my life, entirely localized to my eye. I remember going to a walk in clinic thinking I maybe had migraines and there may be a sinus infection. It wasn't until when it started to get blurry. That was when I walked myself to the emergency room. And even at that point, I really thought I just needed antibiotics. Like I was 23. I felt invincible. So even when the ER doctor referred me to come back the next day to the Ms. Clinic, nothing was on my radar. It really blindsided me.

[A]

Did they tell you in person or over the phone that you got ms?

[B]

They told me in person. The neurologist said you have optic neuritis. There's a 50 chance you have Ms. I really, really freaked out. It was very scary.

[A]

Yeah. Did you know anybody with ms? Did you have any idea what it was?

[B]

No, I just knew that it was bad. Now, of course I know I have family members with Ms.

[A]

It's definitely hard for a lot of my patients to get diagnosed. And you don't know anybody and you don't know what your prognosis is. It's pretty scary.

[B]

Totally. And it was really, really key for me. And I tell this to newly diagnosed patients all the time. It was super important for me to find people who were the same age and life stage and disease stage. I needed to find other young women figuring out relationships and career and are we going to have babies?

[A]

So how did you connect to people?

[B]

I had a friend whose daughter had Ms. And she put us in touch and it turned out that we had gone to the same elementary school together.

[A]

Oh, wow.

[B]

We had the same doctor. So we really connected. And just through word of mouth, we kind of wrangled up a couple more young women our age and we would just get together in my apartment with a couple of bottles of wine and it was so, so helpful. Whether it's in person or online, there's definitely people out there. You're not alone.

[A]

Yeah, I see a lot of rural patients. I'm out here in Missouri in the US And a lot of patients don't know anybody with Ms. And feel kind of remote and disconnected. So I think that's really important.

[B]

That's the beauty now of the digital age, when you can be in these digital support groups. I know it's not the same, but it's still super helpful.

[A]

Yeah, I know the MSAA has an online community that's really useful for some of my patients. In fact, you know, sometimes you go to support groups and you see people with a lot of disability early in your disease course. Sometimes it's very scary.

[B]

I had that experience too. Before I formed my wine club in my apartment, I had gone to the local Ms. Society support group and I was the youngest person there by decades. And it was not for me. It was too scary. And I think throwing together newly diagnosed patients, especially if they're in the relapsing stage with veterans of ms, is not a good idea. Like progressive Ms. And people who've lived with it for a long time, we still need support and we still need these networks, but we need to do a better job at directing patients to the right support because the wrong support can actually be damaging and scary and off putting. And it can kind of make you withdraw from a community that would otherwise be really supportive and positive.

[A]

That's important information. So can you talk about times early on where you felt particularly vulnerable, both emotionally and physically with the disease? How did you cope?

[B]

I would say that almost as hard as being diagnosed was the transition from so called relapsing disease to progressive illness. And whereas I can pinpoint the day of my first Ms. Symptoms and the day of my Ms. Diagnosis, moving into that gray area of progression is much more subjective. And for me it was a real struggle because my body was changing and I didn't understand it. I didn't feel like I was getting great information from medical professionals. It's been very helpful for me in recent years to understand the concept of smoldering ms, which is not something we were really talking or was on a lot of radars when I first started to enter this phase of the disease. And it felt like a time when the support resources that I needed weren't as obvious. So, you know, when you're first diagnosed with something, your friends and family, maybe your employer, they really rally around you and there's a sense that you need support. When you've had the disease for 15, 16, 17 years, it's not as obvious to the people around you that you might be struggling and freaking out and needing that emotional support. On top of that, I felt like there was a lot I had to figure out on my own. From a practical standpoint, is it time for me to start using a cane or a rollator? Like, what are the tools that are available to me? And then wrapping my head around those issues and the stigma? And for a long time I felt like I was sick, and then I started to feel like I was sick and disabled. And there's a difference?

[A]

Yeah, there is a difference there. What symptoms were showing up that made you feel like you were entering a progressive phase?

[B]

I mean, I'd always been very active and had noticed for a long time that I would be able to run on the treadmill for 45 minutes, but then my foot would start to drop and it was nothing that ever got picked up in clinic. And I would mention it, but it's kind of like, well, you can run for 45 minutes, it's pretty good, you know, but 45 minutes became 35 became 20, you know, and it's really demoralizing to exercise and not see yourself getting stronger, but to actually be getting weaker.

[A]

Were you conveying that to your neurologist?

[B]

A hundred percent, but I had muscle. I looked strong in my appointments and at the time there wasn't really much you could do anyway.

[A]

Yeah, I hear you. I do find that physical therapy can be really useful. And for people with more problematic weakness, an ankle, foot orthosis or neural sleeve can help with walking. For a lot of my Ms. Patients, the stigma of using a cane or visible orthotic device is a huge hurdle to get over. But without these devices, they can't walk as making the world feel smaller and smaller. How did you deal with that, Ardra?

[B]

Well, there's more than one component. There is the practical of getting the right devices. There's the psychological of not recognizing your body and contending with the reaction of strangers who will ask you what happened to you? What's wrong with you? People that ask if they can pray for you when somebody's first impression of you is pity, it gets in your head. I resisted mobility aids in an unsafe way until I could no longer. And I really felt at a certain point that I was no longer going to let the world tell me what these devices mean about myself. And so it's been really important for me to kind of litter my social media with photos of myself using mobility aids and putting a positive spin on that, knowing that that can help other people feel good about themselves too.

[A]

Wonderful. How long did it take you to get to that point?

[B]

I don't know. I think part of it is fake. It till you make really helped that I was able to find stylish mobility aids. Like having good devices also really helped. I know you can't get the show in the States and you can maybe find clips of it on YouTube, but I pitched a television show to a network here in Canada and we developed a makeover show that's called Fashion Diss. It's dedicated to celebrating people with disabilities because there is an erasure of disabled bodies in the fashion and beauty industry and I wanted to help make space for that. The show has been an amazing experience and we've highlighted adaptive and inclusive fashion and beauty brands which is a real emerging industry within fashion. It's not about fixing people, it's about changing social perceptions, giving people confidence.

[A]

Yeah, just improving their self esteem and confidence that they can do this a hundred percent.

[B]

I remember crying in a park in Paris because I'd wrecked myself and was so limited in this trip. I spent so much time in the hotel room recovering and it wasn't until my husband and I took a transport chair that converts to a rollator on a trip to Spain and realized how much more we could Do. I was worried about the burden of him having to push the chair. And it made the trip better for both of us. We could be out all day. We lived more, you know.

[A]

That's amazing. Yeah. I have a lot of patients that actually get scooters sent to the hotel. So when they arrive in town, then they can just use a scooter to get where you need and then you save your energy. So once you get on site, wherever that location is, you can get up and have a little more energy to get around and enjoy things.

[B]

It's brilliant. And then you don't have to worry about the airline wrecking it either.

[A]

Yeah, exactly. Technology's improving. I saw a new chair. The kind of electric wheelchair that can lock into a seat actually creates a seat. So there's some technology coming, but we have a long way to go.

[B]

You know, we were just on a road trip, my husband and I, and it was frustrating for me to find how many doors to the bathrooms don't have automatic openers. And it's these little inconveniences that are reminders all the time. This is not a space meant for you. You don't feel welcome here. And so it is a psychological hurdle to get over also. And it does take a mental fortitude to do these things anyway and to travel and it's so worth it. And you've got to have a team approach with your family and a can do attitude because there are real obstacles and barriers in the way.

[A]

When you have really a bad day, how do you deal with that?

[B]

Honestly, I'm a fan of having a good old fashioned meltdown. I think it doesn't help to pretend that everything's okay when it's not. One of the problems with Ms. Can be this constant state of grief. You are just getting used to one symptom and then something else happens and it's compounded. And I think culturally we have created this archetype of the plucky can do, upbeat, patient. But it's super fair to say it sucks when it sucks. And for me, that's what helps me get up the next day and start again.

[A]

Yeah, that's great. Who's your real support?

[B]

My husband is a star. He helps with everything. And my dog, I can't imagine life without a dog. It's great comfort. I have great friends, parents. I think Ms. Or not, you need multiple resources to manage your psychology and your emotions. It's never a good idea to have just one person to address all those needs.

[A]

Unfortunately, I think sometimes family doesn't get it, you know, for sure. They don't get the fatigue because of the invisible features of the disease, the nerve pain, the bladder problems.

[B]

Yeah. And that's where having that Ms. Bestie who gets it can just be like a pressure release.

[A]

Yeah, that's great. So when did you decide to become an advocate?

[B]

I started the blog around the time that I started to need mobility aids. And it was a time where I was starting to feel really misunderstood. Even with people I knew, if I hadn't seen them in real life recently, to show up somewhere now with the mobility aid, you just see those expressions. And one of the burdens of having Ms. Is reassuring everyone that you're okay. I felt like if I could just kind of set the record straight on the blog, that would help. And one of the first posts that I wrote was called Honey, I Peed the Bed, because it was a major point of frustration for me that I had dealt with bladder issues for years and years. And then finally the solution for me that worked was self catheterization. And it is so stigmatized, and it seems so horrifying. And I just wanted other people with Ms. To know that, like, here's a thing that can totally change your life, and it's not that bad.

[A]

Yeah. So what's your advice for someone out there struggling with MS? Unfortunately, about half of people with Ms. Have depression, and over 40% have anxiety. So if you're really struggling out there for a while, what would you recommend?

[B]

I mean, if you have anxiety and depression, I think it's really important to get those things looked at medically. They're medical issues, and there are many, many things that can help. The last episode we did of my own podcast was about sexuality, which should not be considered a nice to have. It's a medical issue and should be treated as such. And, you know, building social capital, building your networks, connecting with people. And above all, for me, I really think the thing that saves me is a sense of purpose. And I used to be a singer. For a long time, I didn't know who I was without being a classical singer, and Ms. Stopped me. And for me, it was such a massive part of my identity that I didn't know who I was without it. And when I lost that, I really had to be intentional about who I was going to be next. And I took my time. But I made lists, you know, I really thought about how I like to spend my time, what I was good at, what I could do, and I thought about what it was about singing that filled me up so much, and I found I was able to meet a lot of the same needs by writing.

[A]

Yeah, that's great. I think that reprioritizing relationships also changes a lot.

[B]

100%. I think that's good advice. No matter what you're going through in life.

[A]

Yeah. You know who's there for you and who's not.

[B]

Also think about what you have to give in a relationship, because I feel like a lot of times people in our lives don't want to ask us to do anything because they feel like we're going through so much and they don't want to burden us, but it can rob us of the chance to have full roles in our relationships. You don't have to help somebody move or drive them to the airport, but maybe you're good at helping them with an email to their boss or tutoring their kid or pet sitting. I'm such a talker, and I have friends who have minimized their own problems and think, well, this is nothing compared to ms, but everybody's got something and I want to be there for you to help whatever you're going through. It's good for us to help recognize and redefine the things that we still have to offer and to give. There's a lot of self worth that can be found in that.

[A]

So I want to wrap up with a question. What's next for Ardra? What do you got planned in your next chapter?

[B]

Well, literally next chapter, I am in the final stages of of finishing my book, which comes out in March. So very excited about that.

[A]

What's the title?

[B]

I don't know if I'm allowed to say. Well, March 8th, it comes out, I'm going to be really loud about it.

[A]

All right, we'll be looking forward to it. Thanks, Audra, for all your insights. Everyone out there living with Ms. Can have bad days, but it's how you move forward positively that counts the most.

[B]

I would add that what I learned having Ms. That I didn't know when I was diagnosed is that all my best days weren't behind me. I would want newly diagnosed people to know that.

[A]

My next guest is Tyler Campbell from Austin, Texas. Tyler was a former student, student, athlete playing college football for San Diego State University. He works in his family business, a top 10 sausage company. Tyler is a professional inspirational speaker, husband and father. Welcome to the Ms. Living well podcast.

[C]

Tyler, Good morning to you, sir.

[A]

Awesome. So let's dive into your Ms. Story. What was your very first Ms. Symptom that you remember as a Division.

[C]

1 college football athlete. Just before turning 21, my first symptom was a wealth of fatigue. I did not understand why I was so lethargic during training. Making it through classes, it felt like a boulder. Felt like Atlas, Felt like I had the weight of the world on my shoulders with trying to make it through through a regular student athlete regiment. I just felt so behind, Doc. I didn't know why I couldn't keep up with my teammates. I didn't understand why my weightlifting numbers weren't measuring up. It wasn't until getting the diagnosis that I understood that fatigue is very much a part of being diagnosed with Ms.

[A]

Yeah, I hear that from a lot of patients. It's been going on for two, three years, and they've had every thyroid test known to man and just keep getting blood work and no one can figure out what the fatigue is coming from.

[C]

Yes.

[A]

So then when was your first, like, big relapse?

[C]

We played BYU last game of my junior football season, a month after my 21st birthday. And, Doc, I went to sleep that night after the game completely normal. I'm talking about no symptoms, no nothing. I woke up the next morning somewhere between the hours of 3 and 4 to go use the restroom. And instead of getting out of bed and walking, I got out of bed and I fell on my face.

[A]

Wow.

[C]

That's my moment that so many are familiar with with Ms. And you were.

[A]

Running back for San Diego State at that point, right?

[C]

Oh, yes. And much more handsome, Doc. Much, much more handsome. Less gray hair. So about six foot, close to £235 at that time. In good shape. Just an athlete. You wouldn't expect it. Right?

[A]

Right. So you collapsed to the ground. What were you thinking?

[C]

You know, we wake up every day and we expect to get up and walk. So to now have this tingling paralysis functioning down the right side of your body. And you're noticing that your speech is slurred or your tongue feels like it's stuck to the top of your mouth. And then your right arm is not working. And then you try to get to your feet. Right. But then your equilibrium is gone. So you fall again. So for me, it's shock. It's complete fear. You don't know what's going on. You don't have control of your body for the very first time.

[A]

Did you think you had a stroke?

[C]

I'm thinking stroke. As an African American male, you know, strokes are very prevalent in my family. I'm battling blood pressure issues at that time, Believe it or not, so early on, I'm thinking this is It.

[A]

Yeah, it's scary. So you got evaluated in the er, right?

[C]

So, thankfully for me, I had access to a team doctor as a student athlete. So my team doctor got on the phone and dialed up a neuro, which sent me to Scripps Memorial Hospital in La Jolla, California. So, from an Ms. Standpoint, which is not normal, my diagnosis became very quick.

[A]

Well, that's good at least. Did you recover from that first attack?

[C]

Yes, recovered. I would say little less than a month. By the time I went home for Christmas break, which was a couple weeks later, I was fine. Which, you know, It's a catch 22 because it made me push Ms. To the back of my mind. Cause it's like, okay, you take steroids, which is what I was given, and you just recover. That was the facade. That wasn't the reality, sir. Not the reality of what Ms. Is.

[A]

Right. You got started on treatment, though, right away?

[C]

Yeah. So DMT shortly after that, I would say maybe two weeks after that process.

[A]

That was good. So were you able to return to the football field?

[C]

Yes. After recovering and coming back after Christmas break, it was full speed ahead. I did have lingering things, but there were things that I felt like I could maintain. So much so that I did not tell anyone.

[A]

Wow. He didn't tell anybody?

[C]

No.

[A]

So your coach didn't know you had ms?

[C]

To this day, I never had a conversation with a coach about my disease.

[A]

Why do you think that you did that?

[C]

I was scared that if I said something, I would lose my scholarship or I would be kicked off the team. I was getting ready to graduate. I was going to start my master's the following year. You take my scholarship away, how do I pay for school?

[A]

Yeah, that's huge fears.

[C]

It was much safer to me to not say anything.

[A]

Yeah, yeah, we hear that a lot. I mean, a lot of people want to keep it private for various reasons. Keep their job, you know?

[C]

Keep their job. Yeah.

[A]

So were you able to finish out your college football career?

[C]

I was able to finish out my college football career, and that was a blessing. I did graduate.

[A]

Well, I know football is kind of a legacy thing for you, right? Yeah.

[C]

My father was an NFL hall of Famer, a Heisman Trophy winner. His name is Earl Campbell. So, yeah, to your point, it was always one of those childhood dream things for. To be like dad.

[A]

Yeah. Do you think being an athlete helped you prepare for living with ms?

[C]

I think yes. Being an athlete helped me to be accustomed to resiliency and adversity. Having doors slammed in your face with things not Working out the way that you want them to, as well as just having to fight on a daily regimen. That's what being a student athlete was all about.

[A]

Yeah. So what was your lowest point in the semester journey? Have you ever hit rock bottom?

[C]

Lowest point was definitely in that moment of not telling anyone. Right. Because you're in a room full of hundreds. You're part of a team, but yet you're not part of the same team. Because my team is not suffering how I'm suffering right now. My team does not know how much, how hard it is to push through a day that was very challenging. The lowest point probably came when I started experiencing erectile dysfunction issues for the very first time as a side effect with Ms. Being 21 years old, then you're really thinking that something is incredibly wrong with you because you don't understand that there's more to you and that your manhood is not necessarily defined, if you will, by what's below. And so I didn't understand. I wasn't mature enough yet. And that thing that I thought defined me bigger than football was taken. And that was the lowest of the lows. Cause then you really don't want to talk to another male, older or younger about that. So that was probably the moment where, geez, Tyler, you're really screwed up forever. You're never going to recover from this.

[A]

Wow. It's extremely tough for a young man and mentally process. FYI, there are an array of options that definitely help with erectile dysfunction for guys with Ms. I think it's important to speak up since many neurologists don't ask about sex. So Tyler, how did you recover from this emotional low point?

[C]

I come from a very faith based family, so a lot of prayer, but also a lot of time. Time started to show me different things about who I was and what I was capable of. Number one, Dr. B. I mean, football eventually got taken away from me, right? And so when I started to accept, and that was the hard part, when I accepted that the trajectory of football was no longer present, it was like life started to give me back. I understood what patient advocacy could potentially be for me. And I understood that there was a gap in terms of African American males at that time. Right. And so I'm like, why don't you start speaking up if you know the gap, if you would have liked someone to speak to, but you didn't have that, then how can you make sure that another young black boy who somewhere in the United States is going to get diagnosed like you, he won't have a problem finding your story because you're speaking. And I started to discover in my wounds my own healing a lot through patient advocacy work.

[A]

Yeah, that's amazing. How long into your journey did you get to that point where you said, I'm going to go from feeling bruised and beat up to I'm going to flip this and I'm going to take charge?

[C]

Absolutely. And I'm so glad you asked that, because it eliminates what facades people can paint in their mind. 21 diagnosed, 24 started speaking openly about it. Three years. Okay, so it took time.

[A]

And who supported you during that period of time?

[C]

My mother and my father embraced and loved me. I had met a woman who was my best friend in college. She was kind of one of the first people that I did ever tell that I had Ms. Those people, along with the people from Pro Player foundation who were present in my relapses in the hospital, those were the individuals that helped me pull Dr. B. Yeah.

[A]

That's amazing. What's it like? You know, we have a lot of listeners out there living with MS, got diagnosed with MS, early 20s, early 30s, and they're out there dating. When do you disclose you got ms?

[C]

That's the tricky part, because I got lucky. The person who I had to open up with was just a friend at that time. So that part of the journey I don't want to speak over, but I feel like you don't tell that person until you have healed yourself in terms of receiving that communication or dialogue back. Right. Until you are comfortable enough with, hey, this is me, this is who I am, and I'm okay with putting myself out.

[A]

What about someone like that's out there, that's really struggling mentally with ms, you know, kind of fear of being disabled or living with disabilities. So what do you say to those people that are really out there listening to us just struggling with the mind game of ms?

[C]

You have to continue to work to find your village. And your village can be one person. Your village can be two people. Your village is what you make of it. You can't fight it by yourself. My years of fighting put me in wheelchair. My years of doing things solo without acknowledging that I do have this disease and owning it. So my question number one is, do you recognize that you do have this disease? You're not shying away from it, you're not hiding it, and that's what really opens you up mentally. I tell people all the time, find and search for a local support group. Look at the different organizations that are out There for people within your community and even virtually, that's the beginning. You've got to build your village. The disease is too big of a weight to carry by yourself.

[A]

Yeah, that's excellent advice. So what about some practical strategies, little tips that people could do to help them navigate Ms. On a daily basis?

[C]

I tell people all the time, we have to move. For those of us who have the functionality of your limbs, you have the ability to get up and move. Please move. If it's a walk, if it's up and down the driveway, if it's to the door, if it's to the kitchen, make it a focal point to move. If all you have is the functionality of a finger, then doggone it, move the finger more than you did yesterday. If you have to have help or aid to stand, stand as best as you can. Movement changes things. Even being able to be outside beyond the confines of our homes, just the ability to surround yourself with the breeze of mother nature mentally helps you beyond measure. That's the one thing I think Covid taught me, Dr. B. I had to get outside, and I haven't ever looked back because the confines were really weighing me down mentally. I felt trapped. I had to figure out how to get outside to just breathe air.

[A]

Yeah, the fear factor of going out and catching the virus was terrible, and it really pulled down people's mental health.

[C]

Yes, sir.

[A]

Yeah, but that's phenomenal information. Obviously, movement is so critical for people living with the disease. So I want to dive into one final topic. How is your perspective on life and health changed since your diagnosis? You know, you've gone through this whole evolution, dealing with the disease, denial, acceptance, moving forward. But how's your perspective changed?

[C]

I value time probably a lot more when you get diagnosed, when you're forced to navigate the healthcare system, when there is blood that has to be tested, when there are all these appointments and agendas and your funds are low in the bank account because it's not cheap having Ms. You. It cost mentally, physically, as well as financially. So it matured me. You know, I started not taking things for granted that people did. You know, when you tell somebody to write their name on a bill at a restaurant, the ability to write your signature in cursive. I started to value things at a greater level. And the gift that came back to me was I started having more relationships of meaning with people because Ms. Slowed me down. But in that slowing down, it gifted me with a listening ear. And not just an ear to hear, because those are two totally different things. I'm Talking about an ear to listen. Mississippi taught me to sit here and value a phone conversation, value your time in an Uber with another person, on a car share, value your time on an airplane. And as I did that, I noticed that I became more enamored with learning people's journeys. And when you learn of other stories, it was stories that I needed to cling to that were everyday people. If you were a cancer patient, if you were a single mother raising children, if you come from the inner city and you're a first generation college student, no, the world didn't know your name. But you sat down and we talked together and you became a hero to me. So therefore, I got another story that encouraged me with my little old Ms. About someone else's perseverance. So I think it slowed me down physically. Okay, yes, I acknowledge that, of course. But it also slowed me down mentally and caused me to invest an ear into my interactions with everyday people.

[A]

Wow.

[C]

Yeah. Married 13 years, four children and a dog named Petey. I got married when I was 24. And everything that my mother in law, my father in law said was, you are wiser beyond your years. And my response to that was, when you've climbed the journey of ms, it humbles you and it also makes you really figure out what matters in life and what doesn't. Because I only have 24 hours, and in that 24 hours, I don't have the energy span that most people do.

[A]

Wow. So that's just amazing perspective on living with this disease and struggling with the disease, but coming out on the other side. And I think time does slip away from all of us, and I think we really need to focus on what's the priority. And it looks like Ms. Open your eyes, open your ears, and open your heart to other people.

[C]

Absolutely, Doc. And I work at it every day. I also am to the place now where I'm not ashamed. I just hope that today we can move shame out of the window and we can help people begin their next steps on their journey mentally and physically with Ms. But it's an everyday hurdle. And I understand that and I know you do too, Dr. B. Yeah, definitely.

[A]

Well, Tyler, thank you so much for advocating for people living with Ms. And providing your insights. And I think our audience listening to this feel inspired and hopefully in a much better place in their mind dealing with this disease.

[C]

Hey, absolutely. And for the listeners listening in, keep supporting, keep listening, keep growing, and keep thriving.

[A]

Thanks to our listeners for downloading this episode of the Ms. Living well podcast on Mind over strategies for staying positive. Whether you're newly diagnosed or have been living with multiple sclerosis for some time, it's so important to know that you're not alone. Tyler and Audra are two individuals who have learned to live positively with the disease, but There are over 2 million people living with multiple sclerosis out there globally, enjoying their lives with meaning and purpose at every stage of the disease. Both of our guests shared valuable information and I hope you found our conversations as inspiring as I did. Thanks again to TG Therapeutics for sponsoring this episode. Keep in mind the topics we discuss on the show are strictly informational and not medical advice. Any change in your treatment should be discussed directly with your healthcare providers. Our show is hosted by me, Dr. Barry Singer, produced by Carriette Harmon with audio editing by Frank Garza. Our theme music is the Gold Lining by Broke for Free. If you like the show, please share it with others. Living with multiple sclerosis. I'd appreciate a positive review on Apple Podcasts really helps more people find out about the show. You can follow me on X at. Dr. Barry Singer More information about our gas and the websites can be found in the show notes for this episode in the blog section of mslivingwell.org thanks so much for listening. This has been an Ms. Livingwell podcast.