A (2:25)

Did the symptoms keep coming back? Constantly for those 11 years?

B (2:31)

I was relapsing, remitting. I moved very far away. I moved out to California from Orlando for grad school. And just taking charge of my own life and living a lifestyle I wanted to lead helped my symptoms a lot. So I was hiking, I was being a lot more active, and that symptomatically was keeping my Ms. And curb until I got optic neuritis and being the silly person I am, I dismissed it and I was like, oh, it's just really bad allergies. Oh, these allergies are not going away. Hey, this might be getting worse. Let me go see a doctor. So I saw an optometrist, and they said, I can't figure this out. Go see an ophthalmologist. I saw an ophthalmologist who said, I know what this is. Go see a neurologist.

A (3:22)

Oh, boy. Okay.

B (3:24)

And so the neurologist was the one to diagnose me about two weeks later.

A (3:29)

So in. In this span of 11 years, did you know in your heart, like, in your brain, did you say this could be Ms? Like, was that. Was that a possibility for you?

B (3:40)

Ms. Was not on my radar at all. I studied psychology in undergrad, and you get a really brief overview of what Ms. Is, but it doesn't go into the autoimmune aspect of it, so much as how it affects the nerves in your brain and your spinal cord. And so my understanding of what Ms. Is was so limited. And when I got the diagnosis, I was in tears because when you look online, it's just a really grim outlook.

A (4:14)

How did your family respond to that?

B (4:18)

So with my husband, he also had no idea what is ms? What is multiple sclerosis? It's not something he had ever heard of before. And so he kind of went into denial mode of we were researching things and it was like, oh, these look terrible. But that's. That's like 50 years in the future. Right. And then my mom, who was a registered nurse, was like, oh, my gosh. When I saw this in the 80s, it was horrifying. And like, we've come so far since then. Ways to go, but we've come so far.

A (4:54)

After the diagnosis, what did the neurologist act on that? Did you decide on medications or what was the next step for you?

B (5:02)

I had a wonderful neurologist who was very much on my team. I was on rituximab, which worked wonders. Just having my immune system not attacking me was wonderful. The nurse practitioner that worked with her had me on high dose biotin, which has some myelin quickening properties to it. And so it was. It was really helpful for me.

A (5:25)

Okay, that's great. And did things kind of stabilize at that point, like your optimal state?

B (5:30)

Yeah.

A (5:31)

Okay. And how have you been since then?

B (5:33)

I am actually coming off of a relapse, so this is very interesting timing.

A (5:38)

Okay.

B (5:39)

I'm officially diagnosed with secondary progressive, not because my Ms. Activity is increasing, but I have a Lot of Pira. So progression independent of relapse activity and disability wise, I'm using a walker just for safety. On a really good day I can use my trekking poles and hold myself upright more. And then big events like if my 5 year old wants to go to Legoland, I'm going to use a, a wheelchair.

A (6:07)

Oh, makes makes sense for sure. Did your symptoms change at all like when you were pregnant and then you had your child? Did, did things get wonky for a bit?

B (6:17)

It was actually wonderful. Pregnancy was super protective of my ms, of my body's. Like I'm growing a human, I'm gonna not put extra stress on the body. What was hard for me is the DMT they put me on when I was breastfeeding did not work well for my body. They had me on copaxone. I had a lot of adverse reactions to that where it felt like lots of pseudo relapses three times a week. And so I chose to be DMT free until I finished breastfeeding.

A (6:49)

Makes sense. And that. And then right afterwards you went back.

B (6:51)

To I'm on Ocrevus now.

A (6:55)

So you were saying you were in school, you did studied psychology. Did that become a career for you?

B (7:02)

Yeah, so I got a master's in marriage and family therapy. I currently work with families who have kids with neurodiversity and a lot of them are on the spectrum and I teach the parents how to engage with their kids in a social and emotional aspect rather than a behavioral one.

A (7:22)

And now is this something that you're able to do from your own home or do you have to go into.

B (7:27)

A workplace to do it's hybrid depending on how impacted the family is. So for some families being virtual is just not going to work. They need more hands on support. But I've been with my families for seven, eight, nine years now and so we've been able to do virtual.

A (7:47)

Okay. I guess during COVID too. That would have complicated matters. Yes, for sure. Okay, so over the past seven, eight years with the activity of your disease, has that changed your ability to work like a full time? Are you less hours now or have you been able to kind of accommodate things?

B (8:07)

I specifically chose this field knowing I didn't want to work full time. My dream was actually to be a stay at home mom, but then I live in California so that's not a feasible option right now. But this gives me the flexibility to work while he's in school and be able to be present in my son's life.

A (8:26)

And I, I have a feeling that obviously when you started in this you had no idea about your own experience that you go through dealing with all these things. Like it gives you, it gives you a bit of an edge over other therapists, you know, living with a chronic illness illness yourself that you see things differently.

B (8:45)

I, I hope so. I. Every therapist has their own little niche of what makes them special and with the clients that they're going to work with. But I, I do hope that it's created more empathy in me to understand just how individually different everyone's life is. Absolutely.

A (9:05)

So when did you find the Ms. Gym?

B (9:09)

Okay, so I officially joined in September 2021. I had been active on the different medication groups on social media to figure out which one would potentially work for me as I was trying to find something that would fit my Ms. Better. And the Ms. Gym popped up as a recommendation.

A (9:29)

Okay.

B (9:29)

And based on what I saw that was being advertised, I figured this is things I want to do anyway. Let me try is reasonable enough that it's going to help more than it could possibly hurt. And then here I am in 2025 still.

A (9:48)

Okay. That's fantastic. What would you say, whether physical or mental. What, what do you think that the Ms. Gym has helped you out with the most?

B (9:58)

Learning about my neuro edge was a life changer for me. Traditional gym programs say push as hard as you can go. If you're sore, that does you more good. But learning to find that right balance of I'm pushing myself and I'm working out but I'm not overdoing it has been so helpful. My, my husband is a gym rat. He loves lifting. He's a power lifter and so for him what I'm doing makes zero sense. And so we have to sit down and watch the education videos with Trevor together because otherwise he's like what are you doing? This is not helping you. But to have it broken down so simply of this is how the Ms. Brain works differently and how to help my muscles and my nerves reconnect themselves has helped him to realize my body is just not going to work the same as his.

A (10:57)

When it's within your control, you protect your neural edge. But I imagine with a five year old your neural edge gets pushed quite a bit.

B (11:04)

Actually, not so much. He's kind of a superstar. The most he pushes my neural edge is he has trouble sleeping at night and he's very into snuggles. I might not get as much rest as I was hoping for at night but I'm able to substitute that with my part time Job of I can take a nap during the day while he's at school.

A (11:22)

Okay, that's good that you've kind of made your own accommodations then. That's great. So, Danielle, having a young child, how do you go about explaining Ms. Them when they want you to play on the playground or get down on the ground and you're feeling like you don't have the energy, how do you make a young child understand what's going on?

B (11:45)

Thankfully, when my son was born, someone wrote the book Somedays, which is a small, child appropriate book about having a mom with Ms. And it really works well for our family because in the book the kid's name is Wyatt, which is also my son's name.

A (12:02)

Oh, wow.

B (12:03)

And so I just took a label maker and I replaced the name. I think the mom's name was Rosie. And I wrote my own name there. And we read the book about us.

A (12:12)

That is a great resource. I have heard other people talk about that book too and how helpful it is for, for young moms or moms with young kids because kids don't fully understand what's going on.

B (12:25)

There's one page where the little boy is trying to say the long word, multiple sclerosis, and he just can't get it out. And that's my son's favorite page because he's so quick to say it's multiple sclerosis. And so he has a little bit of pride in that and he's been so helpful. If we go to a restaurant and I think I can make it to the bathroom without my trekking poles, but I end up falling, he doesn't freak out. He just says, I'll go get dad and then my husband can help me. And it's more responsibility than I want to put on a five year old. But he's taken it in stride and I'm so proud to call him mine.

A (13:11)

I don't have children myself, but I have heard very similar sentiments from other people with Ms. That have young kids and they feel burdensome having, you know, having their children try to deal with kind of these grown up issues. But later on they also share how mature their children are and how much more compassionate they are. And, and obviously the, the positive qualities don't, they're not meant to invalidate the struggles in it, but it's, it is interesting to, to look at it and appreciate the qualities that are grown through the struggle and watching someone you love so struggle how, how it, it does mature you in, in a certain way.

B (13:52)

And it's not something that I can wave a magic wand and just fix for him. This is part of his childhood, and I'm. I'm so proud with how he's handling it.

A (14:03)

So, Danielle, what do you do when you have, like, a really hard day, when. Whether it's you've blown past your neural edge or just a bad Ms. Day, like you mentioned that you're kind of in this relapse right now. How do you. How do you change your mindset or how do you make your schedule more flexible to. To take that into account?

B (14:23)

I do work for a great company who I've been able to disclose my diagnosis to, and so they give me lots of space and room to say, hey, take your time off. We can't have you operating if you're not working. Like, you need to take care of yourself before you can take care of others. My son, again, he's a superstar, and so those are some of his favorite days, where we just snuggle on the couch and we'll play video games together. So we're very into Mario Kart, Mario Odyssey, Mario Wonder, a lot of games that we can play together and just kind of sit there. My husband is a great support partner, and so if he's not up for cooking dinner, we'll order in or he'll pick up extra tours around the house. He's. He's been awesome. But we do depend a lot on our church community has been really supportive. Whenever it's the month before my infusion is due, they send out a whole list of, hey, can people sign up to come clean Danielle's house for an hour for, like, three times a week?

A (15:28)

That's a blessing. Wow, that's incredible.

B (15:29)

It is a huge blessing.

A (15:31)

That's wonderful. Now, you didn't know much about Ms. When you were diagnosed and your husband didn't. Your mom, obviously did be. By being a registered nurse over the years, how have you dealt with, you know, in. In the church at Canu, people giving really unhelpful advice and saying things that are kind of invalidating or minimizing. How. How do you deal with that?

B (15:56)

Especially at my church, that's been a big issue because we also have a language and cultural barrier. If I go to a Chinese church where I speak Mandarin and Cantonese and I only speak English, so the. The understanding of what Ms. Is and how to translate that has been very tricky. So it started off with, oh, I've been praying for your eye. How's your eye? And trying to explain, oh, my. My vision is recovered, but it's more than just my eye. And that's been really tricky. Google Translate has been very helpful and just kind of having some pre made scripts. This is how my body works. Some days are going to be good and some days they're going to be bad. And we'll take it one day at a time. But I can always use your prayer.

A (16:45)

I'm going to go on a limb and say that probably, maybe the Asian community is not as prevalent as maybe the Caucasian community.

B (16:54)

I actually have no clue whatsoever. I do. No more rheumatological autoimmune within the Asian community, but not necessarily neurological autoimmune because.

A (17:06)

I'm trying to think if they, if they would have language for like what, you know, like so many other languages they have in their translation like multiple sclerosis. But I'm curious in an Asian community whether they actually. Is there a specific word that they can say? Oh, I know what that is. Like, you know how someone, if they had diabetes in different languages, they wouldn't be able to translate that or understand.

B (17:34)

The closest I've gotten is because of lupus.

A (17:39)

How has your interactions been kind of with more of the outside world? Like you said that sometimes you are for a big event, you're in a wheelchair or you use your walker. How do things go? Like if you went to the grocery store, people see you because you're young and you have a young child, your son. How do people respond to you needing mobility aids at a young age?

B (18:02)

It sounds kind of weird, but indifferent. I've gotten a comment here and there from people who are more aware of things like Ms. And so they'll see me pull into the disability parking and be like, oh, are you a driver for someone with ms? I'm like, oh, no, actually that's me. I'm the one with Ms. And they're like, oh, you're looking good. I'm like, thanks. Not feeling so great, but thanks.

A (18:27)

What would you say to someone who's perhaps in limbo, like you were kind of in diagnosis limbo for so long?

B (18:34)

I would say don't stop looking for an answer. I totally did. I totally stopped and was like, oh, this is a weird fluke. Oh, sometimes my leg doesn't pick up the foot properly. Oh, sometimes I get tired so much faster. And then when I got the diagnosis, like, these are all connected things. I think there's a lot of unknowns in the medical field still. But being able to keep track of all of these things in our journal is not something I did before I was diagnosed. And now that I'm diagnosed, I can track. Okay, today I tripped twice, but I fell zero times. And it's been helpful in understanding what my body is going through. And I know a lot of people are working full time and they don't have necessarily the mental capacity to go through logging everything in, but that's, that's how my mind works. I love Excel spreadsheets. I love color coding. I love having different color gel pens. And so for me, that helps me understand and explore and identify where I am.

A (19:47)

That sounds helpful, and it sounds like that would be great when you go to see your neurologist and say, listen, when you have proof, as opposed to just like some hypothetical, you. You have actual concrete data there. So what would you say to, to someone that you meet, maybe a friend of a friend or someone that you meet that's newly diagnosed? What kind of advice would you give? Or just words of encouragement like, what do you wish that someone had said to you when you went into the doctor's office and you were diagnosed with this?

B (20:18)

It's really easy to lose hope, but never give up, because even when it feels like you're doing nothing, rest is so important. And in taking the time to know your own body and what it needs, you're doing 110% of the work.

A (20:36)

There's so much information out there. And I think a lot of people that are newly diagnosed, they get overwhelmed. Dr. Google can really, yes, cause a lot of panic and confusion and fear. And I think that the whole idea of the mindset and undervaluing, the importance of rest, as opposed to just go, go, go.

B (20:56)

Especially in our Western culture, if I'm not producing, then I'm wasting time. But producing is counterproductive sometimes. And learning to slow down and be mindful and understand what these little twitches in my leg are about has been so crucial.

A (21:19)

So what are kind of some of your goals or passions, things that you're. That you're working towards or that you see in the next few years for your life?

B (21:27)

I'm excited to be officially licensed as a marriage and family therapist. That is Michael, There has been so many times where I wondered, do I just stop working? Do I go on disability? Do I put my health first and my career second? And that. That's been a constant tension of how do I accomplish this goal I had set while still taking care of myself? And so it means instead of doing it in six years, I'm probably going to be doing it in 10 years. But it's a goal on the horizon. And so hopefully by December 2025, I will officially be licensed marriage and family therapist.

A (22:10)

That is incredible. That that will go by in the blink of an eye. My goodness, that's great. Are you planning on perhaps expanding your family or are you feeling like things kind of are good and things are stable with your disease at this point?

B (22:26)

So I spent nine years in Orlando, Florida, which is a little bit more of a southern culture than people realize because they just think Disney and beaches. So I totally expected I'd have three or four kids, and we had the one kid, and my disability kind of progressed afterwards, and I was like, I want to give him top quality of life. And if I brought another kid into the mix, I could not guarantee that. So we are one and done. And if we do expand our family, it might be getting like a dog.

A (23:00)

It sounds like you guys have really thought a lot about that and about your family and. And what's going to be best for all of you, because it's true what you said. Like, you. You only have so much bandwidth and you want to give the best you can to your son. So that makes. It makes good sense, your decisions. Well, Danielle, thank you so much for spending some time chatting with me. Are there any other words or any other things that you'd like to share with the Ms. Community?

B (23:24)

Just keep pressing play.

A (23:25)

All right? All right. Thanks again for meeting with me.

B (23:29)

Of course. Have a great weekend.

A (23:30)

Yeah, you too. Thanks for tuning in to another episode of the MSGYM podcast. You can find more about the Ms. Gym on Facebook, YouTube, Instagram, and@themsgym.com.