MS, race and representation: why inclusive support matters | S8E19

Summary

Podcast Summary

Living Well with Multiple Sclerosis
Episode Title: MS, race and representation: why inclusive support matters
Episode: S8E19
Date: June 24, 2026
Host: Geoff Allix
Guest: Camille Deondre Stewart (AKA Minnie Sinclair)

---

Episode Overview

This episode dives deep into the intersections of race, chronic illness, and representation within the experience of living with Multiple Sclerosis (MS). Geoff Allix interviews Minnie Sinclair, a Canadian entrepreneur and advocate living with both MS and bipolar disorder. The conversation explores how representation, financial empowerment, health equity, disability navigation, cultural inclusion, and mental health management intertwine, especially for people of color with MS. Minnie shares her journey, resilience strategies, the unique challenges faced in the healthcare system, and how digital platforms and tailored self-advocacy are essential for well-being.

---

Key Discussion Points & Insights

1. Representation and Cultural Barriers in MS

• Breaking Stereotypes: Minnie highlights how diseases like MS are often misperceived as “white people’s diseases,” creating reluctance among people of color to seek support or recognize their symptoms.
  • “I need people that look like me talking about it...even if it's not a celebrity and not in Black History Month. We're black every single day.” (Minnie, 00:00, 35:03)
• Peer Support: The importance of relatable role models and conversations outside tokenized moments, emphasizing ongoing, everyday representation.
  • Notable Moment: Minnie’s dental hygienist confides in her, yet feels uncomfortable speaking about MS because of stereotypes, demonstrating the need for diverse narratives.

2. Navigating the Diagnosis & Living with Multiple Conditions

• Initial Symptoms and Denial: Minnie’s MS journey began with sudden arm symptoms—initially dismissed, then ignored for six years, compounded by an abusive relationship and substance use.
• Comorbidity Management: Balancing MS with bipolar disorder, ADHD, and PTSD requires nuanced medication management—stimulants risk destabilizing her bipolar, so she must avoid certain treatments.
  • “Even if someone else...doesn’t believe I have MS or don’t see it or think I’m so strong...I wish they would just listen to me the first time.” (Minnie, 05:41)
• Support Systems: Having a long-term, trusted doctor enables sustained care, though not everyone is as proactive or resourced.

Diagnosis Journey Timestamps:

• [01:59] Minnie recounts her first symptoms and lengthy diagnostic process.
• [03:00] Navigating healthcare with family involvement and decision-making challenges.

3. Challenges of the Canadian Disability System

• Complexity and Inaccessibility: Multiple, overlapping federal and provincial programs with different criteria.
  • “It's a complicated, annoying mess...[the system] copies policy reform from the United States…It's a migraine that I've solved...but is just not accessible to everybody either.” (Minnie, 06:37)
• Poverty Traps: Disability supports don't match real costs of living, and savings limits cause long-term vulnerability.
• Pathways to Financial Freedom: Encourages independence through financial education, savings, and preparing for aging, despite system-imposed hurdles.

Disability and Financial Navigation Timestamps:

• [06:23] Canadian disability programming complexities.
• [08:43] Importance of financial literacy for people on benefits.

4. Mental Health: Strategies and System Limitations

• Therapy as Lifeline: Continuous therapy and medication have stabilized Minnie’s bipolar, but access has become harder over time with longer waitlists and reduced free programs.
• Adaptation and Self-Advocacy: Frequent doctor visits and leveraging private therapists when possible; the gap is even bigger for less "switched-on" individuals.
  • “A lot of people...don’t have that skill…it’s very sad...not everybody equally has exactly the same illness or self-sufficiency…” (Minnie, 11:52)
• Community & Peer Support: Ongoing participation in a BIPOC peer group twice a week, and proactive use of mental health tools, journaling, and spiritual practices.

Mental Health Management Timestamps:

• [09:12] Managing bipolar, PTSD, and behavioral health access.
• [21:58] Cognitive behavioral therapy and community peer groups.

5. Practical Daily Resilience

• Self-Prioritization: Living alone allows focusing entirely on health, despite familial disapproval.
• Advocacy in Family Contexts: Challenges of being believed, and pushing for one’s needs in non-supportive or healthcare-oriented families.

Resilience & Self-care Timestamps:

• [12:44] Minnie’s strategies for daily resilience.
• [14:49] Home fitness, pacing, and 10-minute routines for quality of life with MS.

6. Fitness and Nutrition Adaptations

• Approachable Fitness: Focus on functional exercises (e.g., squats for toilet mobility), modest daily routines, and self-compassion.
  • “10 minutes is fine...you're reminding your body to move again...at least be able to stretch enough to get off from the floor or the toilet because I’m learning that’s the most important thing.” (Minnie, 14:49)
• Diet on a Budget: Emphasizing frozen vegetables, rice bases, and practical protein sources within financial and physical limits.
• Plant-Based Transition: Incorporating more fish and plant foods, seeing the tangible difference in symptom relief.

Diet & Fitness Timestamps:

• [17:52] Grocery budgeting and affordable healthy eating.
• [20:11] Incorporating fish and managing cooking limitations.

7. Mindfulness and Mental/Spiritual Health

• Scheduled Well-being: Minnie blocks off time for mindfulness, therapy tools, reading, and spiritual practice—integrates these into her calendar.
• Reclaiming Joyful Habits: Plans to revive childhood activities like coloring as stress relief.
  • “It's not about being good to be an artist, it's just to be with the colors and see them move together...that environment I like.” (Minnie, 23:40)

Mindfulness Timestamps:

• [23:40] Daily routines for mental and spiritual well-being.

8. Digital Empowerment & Professional Adaptation

• Online Income: Early adopter of online entrepreneurship, leveraging affiliate programs, content creation, and knowledge sharing as a source of resilient, flexible income.
  • “You could make money on the Internet...selling other people's products and services...” (Minnie, 25:26)
• Transferable Skills: Importance of recognizing and applying existing skills to new, remote-compatible income streams.
• The Power of Micro-Enterprises: Success built from multiple small streams, not a singular solution.

Digital Work Timestamps:

• [25:26] Building online business and income as a disabled entrepreneur.
• [27:23] Importance of combining “many small things” for sustainable income.

9. Gender, Hormones & MS

• Hormonal Impact: Managing perimenopause with extended birth control to control symptoms, routine mood tracking via apps, and regular discussion with healthcare providers.
• Family Dynamics: Emphasizes shared responsibility and community care to avoid overwhelming individual women, especially as societal caretakers.

Hormone, Gender, and Community Health Timestamps:

• [29:09] Hormone management strategies and impact on MS course.

10. Systemic Inequities & Health Equity

• Finding Culturally Competent Care: Minnie actively chooses female and culturally aware doctors, building intentional, trusting relationships over decades.
  • “I curated exactly what I wanted from a family doctor from the beginning…You have to take the time to find them.” (Minnie, 31:55)
• Systemic Barriers: Random doctor assignment often alienates patients; proactive selection is key but not always feasible for all.
• Demand for Data & Inclusion: Urges collection of race-based data in Canada for MS research, more inclusive representation in materials and support resources.

Systemic Inequity & Advocacy Timestamps:

• [31:41] Culturally competent healthcare navigation.
• [35:03] Advocating for inclusive research and visible representation.

11. Insurance, Advocacy & Education

• Critical Need for Insurance: Educates others on the importance of having insurance before diagnosis due to the astronomical cost of MS medications.
  • “Mavenclad...is $3,500 a pill. I had to take 14 of them...luckily insurance and the government paid for it.” (Minnie, 36:11)
• Self-Advocacy: Education, persistent question-asking, and using digital communities for learning and empowerment—a necessity for best care.
  • “It’s mandatory to be as educated as you can...you make the appointment shorter and less stressful. And yes, doctors may think, why are you so educated? But it's, it's your body. You're supposed to be.” (Minnie, 39:50)

Insurance & Advocacy Timestamps:

• [36:11] Medication costs and insurance advocacy.
• [39:41] Role of education and advocacy in chronic illness management.

12. Building Digital and Community Support

• Peer Networking: Active engagement in digital support spaces, with a particular need for culturally specific (e.g., Black, multilingual) MS peer support—something lacking in Canada at present.
• Digital Friendships: Prefers digital interactions for friendship and mentorship, finds them accessible, and encourages video calls to forge genuine connections.
  • “It's easier for me to make friends online than in person...Ms. Canada doesn't have yet black support groups. I need them...we need the supports. We need the cultural supports, we need the language supports.” (Minnie, 37:08)

Digital Support Timestamps:

• [37:08] Building digital communities for diverse MS support.

---

Memorable Quotes

| Timestamp | Speaker | Quote | |-----------|---------|-------| | 00:00; 35:03 | Minnie Sinclair | “I need people that look like me talking about it, even if it's not a celebrity and not in Black History Month. We're black every single day.” | | 06:37 | Minnie Sinclair | “It's a complicated, annoying mess...It's a migraine that I've solved the problem for myself, but it's just not accessible to everybody either.” | | 11:52 | Minnie Sinclair | “A lot of people...don’t have that skill…it’s very sad...not everybody equally has exactly the same illness or self-sufficiency…” | | 14:49 | Minnie Sinclair | “10 minutes is fine...you're reminding your body to move again...squats help you get off from the toilet. It's the most important thing.” | | 25:26 | Minnie Sinclair | “You could make money on the Internet...selling other people's products and services...that is built into my DNA...” | | 29:09 | Minnie Sinclair | “It's just now that the Apple phone app will ask me to check in with my mood...at 12 o' clock it'll ask me how was your day...it’s interactive to make me check in.” | | 31:55 | Minnie Sinclair | “I curated exactly what I wanted from a family doctor from the beginning...that's something the individual has to go do.” | | 36:11 | Minnie Sinclair | “Mavenclad...is $3,500 a pill. I had to take 14 of them and luckily insurance and the government paid for it.” | | 39:50 | Minnie Sinclair | “It's mandatory to be as educated as you can...doctors may think, why are you so educated? But it’s your body you're supposed to be.” |

---

Additional Resources & Calls to Action

• Check episode show notes for links to peer groups, financial tips, and digital support tools shared by Minnie.
• For more on building resilience, nutrition, and representation, visit overcomingms.org.
• For those in Canada: Consult the Ontario physician directory and advocate for race-based and culturally inclusive healthcare resources.

---

This episode is a compelling guide for anyone living with MS—especially people of color or those navigating multiple chronic conditions—offering both practical survival strategies and a vision for more inclusive, empowered support systems.

Transcript

[Minnie Sinclair]

I need people that look like me talking about it, even if it's not a celebrity and not in Black History Month. We're black every single day. We're Asian every single day. Like how my dental hygienist thinks she has Ms. And she's comfortable talking about it with me. And the main thing, she didn't want to talk about it because she sees this as a white person disease. And we had that conversation and I'm like, yes, it is, but you need to find out what this is so you can treat it.

[Podcast Announcer]

Welcome to Living well with Ms. This show comes to you from Overcoming ms, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about Living well with Ms. By signing up for our newsletter at overcomingms.org/newsletter. And now let's meet our guest.

[Jeff Alex]

Welcome to the latest edition of the Living World with Ms. Podcast. Joining me today is Camille Deondre Stewart, known professionally as Minnie Sinclair. Minnie is a Canadian entrepreneur, digital content creator and advocate for financial empowerment and disability awareness. Living with multiple sclerosis and bipolar disorder, many Minnie manages the ongoing challenges of two chronic health conditions on navigating Canada's healthcare system and the Ontario Disability Support Program, plus other Canadian disability benefits. For over two decades, Minnie's built a thriving online business in livestream entertainment, using her experience to teach others how to achieve financial independence and reclaim control over their lives, even while relying on government benefits. She's deeply committed to highlighting the systemic barriers faced by people of color with chronic illnesses, particularly in accessing equitable healthcare treatment and support. So firstly, welcome Minnie.

[Minnie Sinclair]

Thank you.

[Jeff Alex]

So to start off with, could you introduce yourself and your Ms. Journey?

[Minnie Sinclair]

Yes. So professionally I'm known as Minnie St. Clair and my journey to Ms. Started with I couldn't move my left arm. I was exercising and I thought I pinched a nerve, but my arm would involuntary move away from me like it's snapping. So I would drop plates and like it was just this sharp shooting pain down my left side. And because it was my left side, my family doctor ordered all the tests right away. So then I saw my first MRI notes that says demyelation disease. So when they read it to me, I thought I had Ms. And then the first example of Ms. Was Montel Williams and I thought, okay, I'll be fine. And then I ignored it for six years. I went to School.

[Jeff Alex]

And are you right handed?

[Minnie Sinclair]

No. Yeah, I'm right handed. So my left hand.

[Jeff Alex]

Okay, so it's not.

[Minnie Sinclair]

Yeah, my left hand is like a prop. It's there, but it's not.

[Jeff Alex]

Yeah, the same. I'm. It's all my. I'm right handed, but all my effects are on the left side. And the same. Like the fact that, yeah, my dominant hand, thankfully, is the one that's okay.

[Minnie Sinclair]

Yeah. Because we need the good hand to do all the work. So. Yeah. So for 2013, that's August. And then I'm do. I'm like, right away I'm sent to the neurologist and he is so chill and relaxed that he thought it was Ms. Already and relapse, remitting already, but I didn't. And then my mom, who's a nurse practitioner, they would have debates in my appointment. So it didn't. It didn't feel like my appointment if I brought my mom to my appointment, because she would always question his decision. So, like, he recommended a lumbar puncture and I said yes. But then I need someone to bring me home.

[Jeff Alex]

Home.

[Minnie Sinclair]

And I didn't know at the time I could have hired a private agency to bring me home from medical appointments. I learned that after in 2024, when I had a colonoscopy. But, like, it was a lot of waiting to see if I had more symptoms because then I learned it was clinically isolated syndrome. And then I went skydiving. And then I develop a substance habit with a relationship that was pretty abusive. So I didn't really take my Ms. Super seriously until 2018, 2019, when my symptoms came back. But they were my toes. So my toes would curl on top of each other and I couldn't move them. Like, it's like they cross over, you know, they're crossed over, you know, to move them, but they don't move until the spasm in my toes were over. So that part started to bother me a lot. And then the relationship I was in, the substance habit being a stimulant in my central nervous system, it helped my symptoms and it also made my symptoms worse. So I had six years of denial, but my doctors knew what I was doing. It was just very weird of like, they knew what I'm doing. They're letting me do it because I'm an adult, but they're waiting till I'm ready to stop. So even when I started my teraflutomide in 2019, I was still using my substance. And I stopped during the pandemic because it triggered me to have a psychosis. So when I felt like I was gonna die from the substance habit is when I stopped and became sober. And then I took my Ms. Seriously, and then it ended the relationship because I wouldn't participate in its habit anymore. Now it's just me by myself, managing my Ms. And going to appointments, and things are calmer. It's just I learned very quickly that sibilants don't work well for me. And I probably wouldn't take, like, modafadil or any of the stimulants they give for people for fatigue because I risked psychosis for my bipolar disorder because that's been stable since 2011. And I'm on an antipsychotic. But I learned I can't really add in anything that affects my dopamine and serotonin because it makes the bipolar disorder medications very angry. And I have to pay attention to what I'm taking. Even if someone else on the outside, like family, friends, or relationships, don't believe I have Ms. Or don't see it or think I'm so strong. And, like, I wish they would just listen to me the first time instead of. Or, like, show up to my doctor's appointments so that they would hear the history, the feedback, the notes that I'm going through or, like, with the relationship. I believe the pamphlet of teraflutamide around the house all the time with side effects, just to get them to understand, yeah, this is the illness I have, and this is the medication I'm taking. Can we take it more seriously to have a healthier relationship?

[Jeff Alex]

So we've got listeners all around the world, and you live in Canada, so could you tell us a bit about the disability system there and also how you've managed to build wealth and manage finances while on government benefits?

[Minnie Sinclair]

So I'm in Ontario, so for Canada, there's a provincial program for each province. Then we have disability programs that come from the federal government that can. Anybody could access, but each one has their own criteria and application process that your doctors have to fill out. Plus, we have a doctor shortage. And then some people that are on their provincial benefits, they don't understand whether they fill up more disability forms or they don't know why one is approved and one is denied. It's a complicated, annoying mess, and it copies policy reform from the United States, which I don't know why Canada can't make their own programs for their own country, for their own people. But it's. It's. It's a migraine that I've solved the problem for myself, but it's just not accessible to everybody either. So, like, I'm on Ontario Disability Support program. I've been on it since 2011. And then before that I'm on Ontario Works, which is our welfare program. Both of them do not cover the cost of housing. So, like, Ontario housing allowance is $390. Ontario Disability Support Housing is 599. Like, and the average cost of rent is $2,000 for Ontario. The math doesn't make any sense. And on top of it, both of those programs, they limit how much savings you can have. Like, they don't stop you from having savings. But a lot of people on disability programs say they're not supposed to save any money when it's more the financial education out of it of, yes, you could save money, but then if you more than what the limit says, you're free. Like, I don't understand why people don't know that this is the path to freedom. If you're able to work with your disability and save and have a good career to build your savings. Because you're gonna need it when you're 65. Because poverty level senior benefits don't really include people with disabilities and they're less money than what you're getting when you're before 65. Like, it's already built into the system of letting you know that you are responsible for your savings. Good. L. Like, it's.

[Jeff Alex]

Yeah.

[Minnie Sinclair]

Every time they launch a pro savings program, like, we just have the new first home savings account where if you never bought a home before, you can save into this account. And most of them all have the word savings in it, but they could be investments in the stock market. So the whole program is not fully educating people what they're supposed to use it for.

[Jeff Alex]

Yeah. We have a similar thing in the UK where the first home buyer. So it's you get tax benefits on the savings, but you have to use the money to buy a house.

[Minnie Sinclair]

Yeah, for US it's within 15 years.

[Jeff Alex]

So you've mentioned bipolar. So you've got multiple conditions. You've got multiple sclerosis and bipolar as well. So how do you navigate life having both Ms. And bipolar?

[Minnie Sinclair]

And yeah, there's also adhd, ptsd, complex ptsd, but I didn't want to list all of them. So basically. So with bipolar, because it's been stable. So it was a lot of therapy, cognitive behavior therapy, different rehab programs. Like I did a substance. Substance abuse program during the pandemic. That part is mainly because of my doctor she's pretty awesome. In the beginning in 2004 of referring me to every available program that we had and the waiting list was shorter. Now if I went through a psychosis or depression again, I wouldn't get the services I need quickly. I would have to wait or I have to find a private practice that's taking patients and then pay their fees. And then the government said there's no taxes on pain for psychotherapy, but psychotherapists kind of want you to be there weekly for three months and that adds up to maybe $3,000. So it's still not accessible. Even though I found a collection of private therapists I could see and some of them offer free programs if they're connected to a government program. But it's not as quickly as it was when I was younger. Like it's fully now based on I see my doctor every month and it's kind of like therapy. Even though she's not a therapist, it's only because she's been my doctor for 20 years. We just have a language of talking to each other of like, what's my blood work, what's my exam? And oh yeah, this is happening at home. And she'll make her comments and it's just, we just have this. She's my extended mother is pretty much how our relationship is. But if I needed more services, I pretty much have to hope and pray I get into a waiting list under two years and not get like psychologically worse. Like when I had the substance habit, I was pretty much on my edge, but I was. I still had my Last therapist from 2020 for 10 years that I saw every other week. And then she graduated me and then I finished and then I went into different crisis. Programs are available during the pandemic, but they're not available anymore. And then for me to go back into them. I don't really want to see a therapist or counselor that's younger than me because I'm 40 and half my life experience is before they were born. It's very difficult to talk to them.

[Jeff Alex]

Yeah. And the other. I'd say you sound like a very switched on person. I always feel for people who are not as. I don't want to say educated, not necessarily educated, but they're not as switched on, they're not as clued up. And then you sort of think there's going to be a lot of people who fall through the cracks who don't.

[Minnie Sinclair]

Yeah, there is. There's many. And I've met them. They like some people I've Met they need someone to give them direction for everything. I will Google something till 6 o' clock in the morning and bring it to my doctor to fill out a referral or I fill it out halfway through and she just signs it. But a lot of people don't have that skill. So it's, it's very sad of like how not everybody equally has exactly the same illness or symptoms or self sufficiency or drive to manage their health and prepare for resources if they need them because a lot of people have been messaging me for my answers and it's like yes I could, but I'm not being compensated. So it's, I have to cut back of being such a nice helper and save myself.

[Jeff Alex]

So what would be your top strategies for your day to day resilience then?

[Minnie Sinclair]

Well, I live alone and there's no children and no pets. So it's just I get to be 100% selfish, which my family hated, but they don't get a vote. I left home at 18 and I took it. So leaving home at 18 and I was selling my dad's insurance at that time. I went to therapy right away. But when I was living at home, my family cut off therapy. They felt I would talk about them and it would ruin them. And now I really, it's about me. It's about me getting well and reducing all my illnesses at that time that were pretty active and then even high school I couldn't move my left leg. But my family didn't want to order the tests the doctor was recommending and we could have found Ms. Earlier. Just my family didn't want to know the answer. And it's weird because majority of my family work in healthcare. Like and my grandmother works at the hospital. I get treatment so it's a them problem, not me like denying my illness or symptoms or think I have to push harder. I push harder. But I know to rest and sleep for six hours a day. It's, it's just the weirdest thing of I take care of my health and I get judged by my family. But if I didn't take care of my health, they wouldn't have me to have the argument with. Yeah, it's like some of my family, my aunt's pretty good at it. Like I gave her all the podcasts and information of me having Ms. Because it's Ms. Awareness month and she was okay me not being there for Thanksgiving last year because I was going through treatment. Like I had to switch from teraflutamide to mavenclad because I had a relapse in August where I had worsening symptoms on my left side and new symptoms on my right side. And because both hands are unavailable, I was in the emergency room trying to figure out what was happening. I wasn't thinking of Thanksgiving at all. Like, you saw me at the barbecue in the summertime. That, that's plenty of family, let me take care of my health. But I end up getting a guilt trip about the whole process out of it. Even now when I say it out loud. Yeah, it's okay to be completely selfish and take care of yourself and let your family be angry at you. They'll get over it or they'll send money.

[Jeff Alex]

So you've mentioned you're. You're at home. And so what's your at home fitness routine? How do you manage the fitness side?

[Minnie Sinclair]

So I am a brand ambassador for one of the health and fitness companies, so. And they have an app where it has a lot of sample workouts. And I've been pressing play. I do as much as I can and then once I reach the exhaustion, I stop. So I'm working out about 10 minutes a day, which some people think, oh, that's not enough. It actually is. 10 minutes is fine because you got your heart rate up, you're moving your body in different positions, you're stretching something, you're doing squats. And these workout programs, they move really quickly with Ms. And your body moving slower. Yeah, you're reminding your body to move again or wiggle your toes or be able. And squats help you get off from the toilet. It's the most important thing. Mandatory. At least be able to stretch enough to get off from the floor or the toilet because I'm learning that's the most important thing out of all the exercises, at least. And then if I'm slower, that's fine. I do it again tomorrow morning or I do it again in the day or I go out and go for a walk. Like there's a cemetery near me that has this figure 8 shape walking path. I'll walk through it. That's about a half an hour. An hour. Or I walk for 15 minutes to a direction. I walk 15 minutes back and I'm fine. And then, yes, eventually I'll have dumbbell weights and Pilates and things like that. But for the most part, I know I need to move for 10 minutes to a half an hour.

[Jeff Alex]

And I think you can't compare yourself to the pre msu, can you? That's the thing.

[Minnie Sinclair]

For me, pre MSME was mostly bipolar. So I can't even as he is

[Jeff Alex]

a different thing as well.

[Minnie Sinclair]

I'm a different person. Yeah. Because it was a different illness and a different. I would be up three days at a time. So.

[Jeff Alex]

Yeah.

[Minnie Sinclair]

And now bipolar and ms, they have an argument because I'll have ideas that keep me up at 6 o' clock in the morning, but I don't physically have the energy to do anything or I have the energy to do something and then I sleep two days later. So it's. They're never, they're never seen at the same time. They're like a Jekyll and Hyde for me because that when people talk about fatigue, I don't really feel I have brain fog at all. But then when I do have it, it's just at the point I just need to go to sleep and then wake up and I refresh and I start over again. So I'm like some of the symptoms that other people describe, I can't visualize what they are because my body doesn't come anywhere close to it. It's a different adrenaline that I have that comes with it.

[Podcast Announcer]

Living well with Ms. Is listener supported. If you would like to help the charity create more episodes and other resources to help people live well with MS, please visit donate.overcomingms.org to make a donation or check out overcomingms.org fundraise to find out more ways you can raise money

[Jeff Alex]

for overcoming Ms. Yeah, so because overcoming Ms. Promotes healthy lifestyle, so we mentioned exercise. Another one is diet. I believe that you've found that you use meal planning to help you stick to a healthy diet. So how, how does that work and how does that help you?

[Minnie Sinclair]

So me budgeting and buying my groceries, half of my budget is vegetables and fruits. And at first it was hard to do, but then I mostly stuck with the same vegetables and fruits I had as a child. So broccoli, carrots, bananas, grapes, oranges. And then I added spinach, which is big for me because you couldn't get me to eat that at all when I was a kid. But I buy frozen. So if my freezer is full of vegetables and I throw them in my rice, so when I steam the rice, I throw in a frozen vegetable. So by the time the rice is finished. So it's the vegetable. Yes. Maybe the vegetable's overcooked a little bit, but there's actually fresh vegetables started in the pot of water with the rice. And then, yeah, I learned, like, I'm not as bloated, I'm not as tingly, like it's def and my stomach feels lighter. It's working of having throw half of your meal of vegetables. And then like I still have protein, I still have beef and chicken and it's messy because that's where I get my iron. And my doctor's like, where are you getting your iron from? Like I just started spinach, but I've always had beef and chicken. So for me they work of having plant based diet. But the half plate of vegetables, I'm full longer. I'm not looking for food like the, the way that you would get bored and open the cupboard or open the fridge, it's because we're bored. So usually either if when I do that I drink more water and then I have vegetables and then sometimes for me I'm okay with just cutting up carrots as if they're chips and then I snack on them. Or I throw in cucumbers or the bell peppers and it's fine because eventually yes, I have cashews, but cashews, I added salt. I don't buy the cashews with the salt because of the hypertens in my salt intake. I need to be mindful of that. And then when the dietitian said buy plain cashews but mix your own salt in, it tastes roughly the same. It's just that you stick in your salt.

[Jeff Alex]

I think you can use it as well, don't you? You can just. Because if I had something now which had the salt in from when I was a kid, I wouldn't be able to eat it, I don't think.

[Minnie Sinclair]

No. There's certain foods our brain does not remember why we ate it. Yeah, I used to eat icing sugar like ice cream and I tried it one time and my brain was like, why are we doing this crazy thing?

[Jeff Alex]

So yeah, I should just say so. Overcoming Ms. Promotes a whole food plant based diet plus fish.

[Minnie Sinclair]

Yes. And fish was, was the weird diet for me that it felt like I didn't eat anything but I was full. And then now because there's a lot of frozen fish options, I buy them and then yes, it's fish with vegetables. And then maybe there's rice with it or maybe there's not. But every time I have fish, I'm full way longer wondering why because it doesn't have the same food sensation of beef and chicken. So I'm learning to add more fish, I'm learning to like more fish. And baking in the oven is the best thing ever you could do because you don't really have to mess with it too much. You just, you Season it. You put in the oven for about 20 minutes and it's ready to go. So especially with my muscle spasms in my hands, I don't always have the ability to chop vegetables and do all the meal prepping. So if a fish option, maybe I chop some vegetables, but it goes in the tin foil package and into the oven. Yeah, it's a nice option where I make like the whole fish and it's enough portions for four days or the whole day. And I'm pretty happy with it coming. Ms. Diet option, plant based diet. It got me to try different foods like, and it got me to see the different foods could do the same thing as my other foods.

[Jeff Alex]

So the other side of overcoming Ms. Is the sort of mindfulness and mental health side of it. So anyone with a chronic illness, mental health is a huge factor. I was gonna say Ms. Is no exception, but I believe they've found that actually depression is more likely for people with Ms. Than almost any other condition statistically. And I don't think they know why, but it just occurs more. So, yeah, I was gonna say it's a primary symptom of the conditions. So what have you found as a helpful coping strategy for an depression? Mood swings.

[Minnie Sinclair]

Because I did so much therapy before from treating my bipolar disorder and depression, and then the minute I got on a stable medication for bipolar and I was in therapy two years later, I got diagnosed with multiple sclerosis. So I think it was coming because of the timeline of depression and then multiple sclerosis for me and then the connection of PTSD and multiple sclerosis. I think I'm the patient category that's predisposed to it based on my mental health. And for me, I'm using all of the tools from therapy. And I also meet with a bipoc peer group of women twice a week for three years. And it's pretty awesome. And I have to tell my doctor about it because she doesn't know. I found it on my own. But I'm always looking for mental health programs and if they're focused on the black population, it makes it easier because I don't have to over explain my lived experience, but it's pretty much mandatory. I read the Bible and then I do a cognitive behavior therapy exercise like journaling or exercise or mindfulness. It comes with the territory because I don't want to stress myself out till I get symptoms, because those are not fun. Because you have to reduce the stress to reduce the symptoms. I think a lot of the symptoms just don't go away because you want them to. Your body has to create the environment to reduce the symptoms.

[Jeff Alex]

I think a lot of people find the, the mindfulness and mental health aspect's probably the hardest thing to implement. It's easy, you know, you know, you do exercise, you're like, okay, yeah, I need to go to the gym. I know I need to eat healthy food. It's quite easy to let the mental health side slip. So how do you prioritize your emotional, emotional, physical and spiritual well being?

[Minnie Sinclair]

It's in my calendar. It's in my calendar twice. It's at 7am and 12pm it's in the calendar. Like either 12 is I read for 30 minutes or I shut down every screen I have for 30 minutes and I listen to. My favorite is Joyce Meyer's Enjoying Everyday Life podcast and her Christian Services. Yeah, we could turn things off and not have the TV on and not have the Internet on for 30 minutes and just be still in quietness. And it works. The other thing I used to do as a kid and I want to bring back now, I used to draw a lot in color, a lot. So. And there's really great art supplies that I really want to invest in. I'm thinking of, yeah, I bring a table that's just for my art. I listen to classical music and I draw because that was a really good, low stress time for me. I did as a kid that I want to bring back now. And it's not about being good to be an artist, it's just to be with the colors and see them move together and maybe you make a picture, maybe you don't. That that environment I like. Yes. Looking back of me on the floor with all my paper and coloring books and all my art supplies and my mom getting mad at me that I made a mess. Yes, it was fantastic. I'll bring it back. Yeah.

[Jeff Alex]

So a lot of people with Ms. Would like to continue working, but the problem they have is that maybe it's their community, maybe it's the fact they had a physical job. They maybe have less mobility. So it means that maybe working from home, virtual working would suit them better. So how have you managed to build a sustainable online business working from home and balance your physical and mental health needs?

[Minnie Sinclair]

So for me, I'm a unicorn. I started with an online business at 18. Like I didn't find one. Later, I started with an online business and then because of the way in 2003, people like are trying to tell me that my job I was doing wasn't real, but it paid Me yesterday. Like it pays me US dollars in Canadian and I have to transfer it from one account to another and then file my taxes on it. Tax season is coming up. I have to gather all my receipts for being on the Internet. You could make money on the Internet being a content creator, selling other people's products and services. Like how one of the fitness companies, they want affiliates, they want ambassadors that are real people using their products and they pay you a commission to sell the supplements and the memberships. That is built into my DNA of what product online or service I can sell. Maybe it's something on Amazon or Best Buy. The website you're on, it says affiliate program. At the bottom of the website is an opportunity for you to make money and it requires you learning email marketing and copywriting and maybe social media ads and running Facebook ads. That is somebody willingly paying Facebook advertisements to show you a product that they hope you'll click on, that you buy that, they get a commission. I've been learning that the minute I turned 18 I got dial up Internet. It's the natural thing I know how to do. Then there's coaching and consulting and some of the disability organizations and nonprofits, they pay honorams for different consultations. Like I'm going to be on one later today for the disability tax credit and I may get an honoram out of that. That is part of my income. Like it's rather like. And then some of the skills you were doing in your job before, they have an online presence in some capacity for mostly consulting. So the skills we had in the jobs, they don't go away. You just have to figure out what part of it can be transferable. And more people need to take a look at their transferable skills or skills that they can learn quickly that turn into a small business.

[Jeff Alex]

And that you sort of, the way you were saying it is like many small things as well that you didn't say, oh, I've got one big massive money making idea. But you were sort of saying there's you can do this bit and that bit and that bit and that bit. And they all add up to make a whole.

[Minnie Sinclair]

Yeah, they do. Because I can't give like this general advice. It's all magic going to work for everybody. But I do know for my whole adult life I make money from the Internet and I'm looking how to make more money from the Internet. These are the ways I'm looking at making money. And it's based on my background and then going to college. I'm looking at the business Program, finance, accounting program. Because how tax season is happening. Everyone freaks out about taxes and doesn't know what to do every year and then new immigrants that come to our country, they need help with the tax system or the financial system. So like if you're good at explaining those things or learning them as you go and explain them to other people, people pay you. It's the knowledge economy is one of the best things that we have. And like overcoming has Ms. Has different ambassadors who are health coaches. It's find out all the weird things that you're really, really good at that other people get bored of you talking about. That could make money and that could be anything because my dad does photography, real estate and he's a bus driver. So I always grew up in my family having multiple different things that they were able to do.

[Jeff Alex]

So one of the things about Ms. Is that women are much more likely to be diagnosed with Ms. Than men. And I'm part of an Ms. Circle with overcoming Ms. And it is dramatically women based. So and apparently that also applies to other automate autoimmune conditions. So what's your understanding of how hormonal changes might impact Ms. And other conditions?

[Minnie Sinclair]

I learned especially this week I had my appointment with my family doctor because I'm still on my birth control pills and I take them back to back. I'm not fully experiencing perimenopause. Like yes, there's hot flashes sometimes, but hot flashes also come with muscle spasms. But because I'm still on my birth control pills, they're not full blown intense. And I learned I could stay on that till I'm 55. So that is the plan. I stay on my birth control pills till 55. It is the mood changes. Like I'm not sleeping, there's some insomnia happening, there's sleep apnea. That could be my bipolar, like, but because I'm in a doctor's appointment every single month reviewing everything, it's not as bad as the beginning of me being depressed and suicidal title in 2004. It's just now that the Apple phone app will ask me to check in with my mood, which is pretty great. So like I'll do that and then at 12 o' clock it'll ask me how was your day? And it gives me like this scale of, you know, pleasant, not pleasant content thing in these different colors where it's interactive to make me check in and then it has a little box in there to write more details. And then I gather all that and I bring it to my doctor. Otherwise I fill out the same questionnaire scale of 1 to 10 with my doctor. So now that there's more apps of gathering our mood and our shift and changes and like diet is also a connection to our mood. Like what you ate three days ago could be bothering you now or a conversation you had. Like journaling is probably the best way of keeping track of all the changes because they happen so fast and sometimes they happen so fast that you don't remember what they were. Like last time I had ice cream, I really don't remember but I know I had ice cream within the month. Like if people were asking me those questions of like when do you have alcohol? Or like no, not really. I don't keep track of how many but I like. So the only way to keep track exactly that number is to journal. And with those shift in mood changes and the way that women's responsibilities of us being the caretaker that internalizes a lot of inflammation in the body. So we need the community of taking the burden, not just us because we'll fall apart for some people get adrenal fatigue. That is because we're, we feel like we have to do all of the jobs that when no, we need to delegate the jobs we need to have. If kids are able to do things like I learned to wash dishes before my mom came home from work. It was mandatory and now I have to convince myself to wash dishes. It's just we can get the community to be involved in all the tasks that we have that are just too overwhelming and too stressful to do.

[Jeff Alex]

And as a black woman, presume that you've encountered gaps in the healthcare system for people of color. So assuming you have and for those who might not know, can you highlight systemic barriers that exist in healthcare?

[Minnie Sinclair]

So for me I curated exactly what I wanted from a family doctor from the beginning. Because an experience I had when I was younger with my cousin, she was very upset with her male doctor not listening to her where my family recommended she look for a female doctor. And that advice stuck with me forever until I found my own doctor. She was a walk in doctor first, but she was happening taking on patients full time. I asked her, I asked her in the middle of me having a bladder infection, hunched over on her table if she's seeing patients full time. And I'm glad I did because she's my doctor now 20 years later and I pretty much have to stay in the neighborhood she works in to keep her as my doctor. And she also has a private clinic that has like an annual membership. So I only hear about the medical disparities from other people in the disability groups of like, they have a doctor but they don't want to go to the appointment, or they have a doctor that gave them a prescription that they don't want to take it. And it's the trust that's happening in healthcare where especially with Ontario Healthcare, you're just randomly assigned a doctor, unless you actively go choose one. And that takes work. That's something the individual has to go do. Like if you need a doctor that looks like you or lives in the same neighborhood or speaks your language, you have to take the time to find them. And then with the Ontario physician directory website where all the doctors have their licensing posted and if they have any like disciplinary actions on there, it's a good idea to go Google everybody to see who's available, who's not available. Like the neurologist. Now I'm switching from my first neurologist to a new one and I'm now being switched to a female neurologist and then her on call doctor while she's on my maternity leave is also a female doctor. And I asked my family doctor of what did, what reputation does she know of my neurologist? And from what we can find, they're really good, they're really excellent, they win awards and they also like sushi. So it's, it's worth the investment of finding your healthcare provider, whether it's a public clinic or a private clinic or a virtual clinic, depending on where who's taking patients or how they're taking patients. Because it's your whole life. It's not just with ms, it's with menopause, it's with having babies, it's with children. It's like the black community. A lot of us get tested to see we have sickle cell. Like, it's just, it's a constant thing of when do I go see my doctor? And for me, I see them every month and I do blood work every month and I did my mammogram yesterday. It's, it's never does I have a doctor, but I'll see them five years from now. Same thing with a dentist. Me picking a dentist that I was comfortable with, that I literally just pick the dental hygienist every single time where now we're seeing if they have samples for the mouthwash, for dry mouth. Because all my medications give me dry mouth.

[Podcast Announcer]

Yeah.

[Minnie Sinclair]

I actively make sure the relationship I have with my healthcare team is people I like, people I can joke with. Like my dental hygienist thinks she has multiple sclerosis and now we're having that conversation. But that took like this friendship, skill building with professional people where, yeah, I, I would fall apart if I couldn't have these conversations with the doctors that see me.

[Jeff Alex]

How do you. And how could we advocate for more inclusive research and resources for people?

[Minnie Sinclair]

We need to demand race based data because Canada refuses to do it. They hide behind a script and claim that it's privacy reasons. But if I don't see me in the marketing material, in the podcasts or the advertisements for testimonials that are not actors, I need to know that I could have Ms. And do well with it. Like when I see Jennifer Lewis talk about bipolar disorder and Montel Williams talk about multiple sclerosis. And now I'm learning Shemar Moore's mom has Ms. Like, I need people that look like me talking about it, even if it's not a celebrity and not in math. Black History Month. We're black every single day. We're Asian every single day. Like that. Like how my dental hygienist thinks she has Ms. And she's comfortable talking about it with me. And the main thing, she didn't want to talk about it because she sees this as a white person disease. And we had that conversation. I'm like, yes, it is, but you need to find out what this is so you can treat it and then get insurance. Like if you're working in an employer and you don't have insurance from your employer, you have to pay for insurance from your private insurance. Because if you get diagnosed with multiple sclerosis, those drugs are so expensive and

[Jeff Alex]

you may or may not diagnose, it's too late to get insurance.

[Minnie Sinclair]

Yeah, they don't give you anything after the diagnosis. They give you everything before the diagnosis, but after the diagnosis, you're on your own. Like my maven client, I asked them is $3,500 a pill. I had to take 14 of them and luckily the insurance and the government paid for it. But I also know because I'm on Ontario disability program, it's not them paying for it. It's a different part of the government. Mavenclad said if I wasn't approved, they have a COMPASSION program to pay for it. But anybody else that I meet that has a job that's relatively able bodied, I always ask them, do you have insurance? And most people say no. It's really scary if they don't have insurance because anything can happen to them where they need the insurance and if they don't have it. They're filtering through the government program. The government program is like paying for everything.

[Jeff Alex]

And so you seem like a very much a digital first person, very happy with digital space. So how do you leverage digital spaces for friendship, mentorship, professional growth? How do you reach out in that way?

[Minnie Sinclair]

It's everything like because of me being on dial up Internet with AOL chat rooms and icq. And even now some of the Ms. Groups, they have their digital meetups and Candu Ms. Has one for the black community that meets four times a year. And now I'm emailing a member in the group as if we're writing very long letters like we're pen pals. So it's very easy to meet somebody online and talk with them. And it's better to meet with them video chat so you know they're a real person instead of just getting the emails and back and forth. But I pretty much, it's easier for me to make friends online than in person. So I just take advantage of, I'm more comfortable of talking online with people and meeting them on video chat or a zoom call. I book everything in my calendar. So like if I'm meeting with a friend like tomorrow, 2pm I meet with them on my calendar, they get a video link, we text back and forth that we can't make it. And it's just built into my social lifestyle. But it's more like Ms. Canada doesn't have yet black support groups. I need them. I told them I need them, but they're only doing it now because they got a lot of complaints. So with the other organizations, we need supports that diversify the multiculturalism we have worldwide because more people worldwide are getting diagnosed with Ms. And we need the supports. We need the cultural supports, we need the language supports. We need to be able to educate our family in the language that they speak so they understand it's not just hypertension. Diabetes and heart disease, like autoimmune disease is something you can live with with another disease. And we don't know that unless we openly talk about it. Numbness in your hands is not something you ignore and push harder and work out your physical job. You need to find out why they're numb. And if it's numb because of lesions in your spine, that is not something that shows up right away of you realizing, my hands are numb because I have lesions. Like I have lesions in my C2 and C3 in my neck that affected both of my hands where I couldn't lift anything at my grandma's Barbecue. When they're giving me the bottles to bring back in the house, I got to tell them to stop. And then when I walked down the small little steps from the house to the porch, my cousin noticed my balance was off, but nobody else did. And she's like, what's wrong? And I'm like, I have Ms. She's like, oh, okay. But they're subtle. Some Ms. Symptoms are very subtle, so. And if you don't have a doctor to talk to and you don't pay attention to what your body is doing, then you're waiting for Ms. To be progressive disease disabling before you realize it's really there. And that's the part that could be prevented. We have so many things to prevent it from being that progressive.

[Jeff Alex]

And so as a final question, how do you think that education, advocacy, and confidence help you manage your chronic illness long term?

[Minnie Sinclair]

It was the only way I could treat my bipolar disorder. So when I got diagnosed with multiple sclerosis, I treated it the same way as me being diagnosed with bipolar disorder. I looked at what magazines were available, what articles were available, what YouTube content was available. So I built my own community around it because my doctors will give me the medical stats of it, the pros and cons and side effects of different treatments, which is great. I need to know what they are. But for living with it, I needed to see real people living with it. Like, for me in Bipolar Disorder, it's Bipolar Magazine, and Gabe Howard and Natasha from Psychology Today, like, those were my people online that anytime I wanted to see something for bipolar disorder, I would listen to their content and then I would Ms. It's Dr. Aaron Boster over the Boster Clinic. He's wonderful. It's fantastic. I'm not worried. When I was going through my relapse and I want to go to tizanidine, And I asked my question in the. In the chat, and he answered the question as an alternative to bacofen. I went to the emergency room and asked for it. The next day, I. And it's working. I can move my hands again. So we need more of that happening in the community to get people to be advocating for themselves, knowing how to do the research. Because when I was in the emergency room and I asked for the tizanidine, the doctor asked me, how do I know about it? And I told him all the sources that I went for the information. And then he consulted with neurology in the hallway. Two of them said, yes, give her 5 milligram. And they sent me home. I made my appointment way faster than I needed it to be because I was educated. So yes, it's mandatory to be as educated as you can. So when you go to your doctors and have the conversations, you make the appointment shorter and less stressful. And yes, doctors may think, why are you so educated? But it's, it's your body you're supposed to be. It's the only body you have, and you need to know of how to make it work for you so you can live longer.

[Jeff Alex]

So as a final point, I'd like to say definitely check out the show notes because there'll be resources for to get in touch with Minnie. And thank you very much. It was absolutely fascinating. Thank you very much for joining us.

[Minnie Sinclair]

Minnie Sinclair I'm happy to be here.

[Podcast Announcer]

Thank you for listening to this episode of Living well with Ms. Please check out this episode's show [e-mail] podcast. You'll find useful links and bonus information there. Don't forget to subscribe. Subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mab Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share? Email [e-mail] we'd love to hear from you. The Living Mo with Ms. Podcast is for private, noncommercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.