Brookanne's Journey with Spinal Muscular Atrophy (SMA)

Brookanne’s Journey with Spinal Muscular Atrophy (SMA)

Brookanne Clark, who’s 40, is one of three siblings born with spinal muscular atrophy (SMA). She, unfortunately, lost one of her brothers but remains close to the other brother. Both live in Dallas, Texas. Brookanne has a great outlook and is a natural caregiver, taking care of family members, friends’ children, and helping out a friend who has a dog training and grooming business. In this interview, Brookanne shares about life growing up as one of 3 with a rare disease; her role as a caregiver to many; and her own personal experiences managing SMA. 

Below is the transcript of our interview. You can also watch the interview or scroll down to the bottom of the page to listen to the podcast.

Matt: Hello, and welcome to Situation Positive. My name’s Matt Cavallo and I’m here today with Brookeanne Clark. Brookeanne, welcome to the show.

Brookanne: Thank you for having me. Glad to be here.

Matt: And we’re so thrilled to have you here. Before we get going. Could you tell us a little bit about yourself?

Brookanne: I was born in Dallas, Texas. My parents were both teachers and coaches. My mom did all the girls’ sports. My dad did all the boy sports. I’m the oldest of three children. I have two younger brothers, Tommy and Jeffery. We all three have muscular dystrophy and our parents raised us that we were no different from anyone else. So we are expected to go to school and get a job and do all those things. So I went, I graduated from Texas A & M in 04, and then I taught for a while. And now I’m helping a friend with her business.

Brookanne celebrating her 40th birthday.
Brookanne Clark celebrates her 40th birthday in style.

Go Aggies. I had one of my good friends, went to Texas A & M and he’s always told me about the football games down there.

Matt: He said, it’s one of the best schools you could ever go to.

Brookanne: Oh for sure. We still have season tickets. So.

Matt: Oh do you? So do you live, is that a far drive from your house?

Brookanne: It’s about two to three hours, like two hours and 45 minutes, three hours. It’s not bad.

Matt: Oh, very cool. And so you came from a family of teachers and coaches, and then you got into teaching. So what did, what did you teach?

Brookanne: I taught second grade.

Matt: Taught second grade. And so you did that for a few years, and now you’re working, working with a friend on a, it was a dog training business, right.

Brookanne: She also runs the an and she has her own business. So I just help her, like, things like that she needs to be done. That she doesn’t have time to do.

Matt: Yeah. I have two dogs that need training. I got two little, one-year-old puppies. So, but I’m, I’m out here in Arizona. You’re in the Dallas area. Correct? So you mentioned that both you and your brothers have muscular dystrophy, is that correct?

Brookanne: Yes. We have spinal muscular dystrophy. Where it is one of the forty different kinds.

Matt: One of the four different kinds?

Brookanne: Forty. There are forty different kinds.

Matt: Oh, wow. I didn’t know that. So there are 40 different kinds of muscular dystrophy. And you mentioned you’re the oldest, correct?

Brookanne: Yes, I am the oldest.

Matt: So does that kind of you know, do you have to be big sis to your little brother?

Brookanne: I do, but they’re much smarter than me and way wiser than me. So it kind of evens out. Yeah.

Matt: Now I think growing up with muscular dystrophy and having parents who are teachers and parents who are coaches, did that help you assimilate to life? Despite having the challenges that come with muscular dystrophy?

Brookanne: I think absolutely because you know, parents being coaches, like they kind of have this no-excuses mentality and just figure out a way to do it. I remember when my mom said that she put me, that it was time for me to be enrolled in elementary school. And if you took me out there and enroll me in kindergarten and they told her, oh no, she’s going to have to go to this school. And my mom was like, no, she’s not. Cause she is fine. She just her muscles don’t work, but her brain is still fine. And so she convinced him or actually told them that she was dropping me up on the first day. Whether they liked it or not. And so then my kindergarten teacher said she was the meanest parent she had ever met that she told them in her life. And so I was in tears maybe, or whatever, if I needed to figure out how to do things on my own. And so it was not, I was never allowed to use. As an excuse, not to do something.

Matt: And do you feel that turns you into the person you are today?

Brookanne: Definitely, yes definitely.

Matt: Because I, I hear you’re quite the caregiver.

Brookanne: Yeah. I think I am. I was also raised in a Christian home. You know, to put others before yourself. And it’s like, I love helping people and I know that I need a lot of help just to live my normal daily life. And so I always want to make sure that I’m helping you just as much as you help me cause I really appreciate all the help that I get. And I, I just, I love giving back to people too. I think I just, in my nature. And everyone calls me the mother hen.

Brookeanne celebrating Friendsgiving
Celebrating Friendsgiving

Matt: Very inspiring. And you know, one question that I had was you mentioned that there are 40 different types of muscular dystrophy. Just, just from a real high level If you had to explain muscular dystrophy to somebody else, how would you explain it?

Brookanne: It’s, it’s a neurological disease, so it’s basically you know, your brain sends in a signal to lift your arm or move your leg or whatever. And that message just doesn’t get all the way down to my muscles. So my brain is fine, it’s just my muscles. It takes three days for a muscle to die. No matter whether you have a disease or not. So if they’re not actively moving or doing something. Your muscles are going to get weaker and are going to atrophy.

And so it’s just this slow progression. I’m getting weaker and weaker and weaker and weaker. For my type, we have a couple of different drugs, and I’m on Evrysdi and that basically slows the progression down. and it basically slows the progression down. So I may not get stronger. Like that’s not, they’re not there. Objective, I guess if the objective is to slow the progress down. I’m a perfectionist, so if you tell me there’s a way I could get stronger. I’m going to figure it out. And so I feel like I have gotten stronger on the medicine. I definitely know I’m not getting weaker and that’s nice because my whole life I’ve just been getting weaker and weaker.

Matt: Well, I think you’re right. I mean, I, it’s wonderful to hear that there are treatments to slow the progression. With MS, I have the same thing, you know, I have the ability to get on. I’m not going to be able to fix the damage that MS has caused. I can slow down the progression.

But I think what’s so beautiful about what you said. It’s all about your mindset. You know, like you have this treatment as a, as a tool, but you believe that you’re gonna. You’re positive. You believe that you can get better results. So I just, I love that, you know, I love hearing that, you know, you’re taking all the resources available, but you’re, you’re doing more with it.

Brookanne: I think that goes back to my coaching, my parent’s coaching background. Just keep fighting for what you want. And my mom died 10 years ago from a brain tumor and then like two years almost did a day of her anniversary. You know, we got word that there is this drug that’s gonna stop the progression.

Matt: Wow.

Brookanne: Okay. This is a sign.

Matt: And I’m sorry about your loss. One of your brothers also passed away. Is that correct?

Brookanne: Yeah, he died from the flu and there were probably complications from the muscular dystrophy. And just not being able to regain his strength fast enough. He passed away from the flu a year after my mom.

Matt: Oh, wow. So you’ve had a lot of tragedy with your family members, but, I understand you’re still close with your other brother.

In the face of the tragedies and some of these challenges that you’ve had to overcome how do you take all of that and turn it positive?

Brookanne: I think it starts with my faith first of all. Like I know that God has given, I joke a lot, like I joke about my disability a lot. I don’t take myself too seriously. Like I’m very competitive. I always joke that God put me in a wheelchair because I needed this permanent time out, but I think that just like my faith, I know that there’s a bigger purpose and a bigger reason. And you know, this is my purpose. And I am here to educate and help people. My mom always was going to the hospitals and talking to parents who had babies, who were born with SMA.

You know helping her know that it’s not a death sentence. It’s not. Your life’s not over because you have this child that isn’t gonna, to fulfill all these dreams you had as a parent. You can still have a normal life. And I think that really helped and living life like we travel, you don’t really have anything to be sad about.

I have a really good life. I may not be able to do a lot of things that you can do or Sally Sue can do or whoever, but I can do them in my own way and I can still enjoy life. And I live a pretty normal life. A lot of my friends will tell you that they forget that I’m even in a wheelchair or have a disability. And I just, I can’t live my life that way.

Brookanne doesn't let spinal muscular atrophy slow her down, here she is traveling through St. Louis.
Brookanne, her brother, her best friend, and her best friend’s daughter road tripping to the St. Louis Arch.

Matt: And that’s a testament to how strong you are in your faith and really that positive mindset. So as we’re getting close to the end of the show here. Do you have any message that you would like to share with others who may have SMA or you know, a parent who just found out their child has SMA?

Brookanne: I would just say, you know, pray. Just like I said, it’s not a death sentence. There’s always a way to figure out how to do something. There’s always a way around it. If you want something bad enough, you will figure out a way to do it. And just keep that positive mindset. And that there’s a reason for everything and try to figure out what that reason is and go for your dreams. Don’t let anything stop.

Matt: Well, I know nothing can stop you.

Brookanne: Correct.

Matt: Well, Brookeanne it has been a pleasure talking to you today. I learned a lot. Thank you so much for being on the show. If anybody wanted to connect with you, is there a place to find you online?

Brookanne: I am on Instagram and Facebook. If anyone has any questions or just wants to know how I do certain things or they just need someone to talk to you can find me on Instagram or Facebook.

Matt: Well, I will share those resources with our audience. Thank you again, Brookeanne for coming on our show today on behalf of Brookanne Clark I’m Matt Cavalo. This has been Situation Positive, stay positive, everybody.

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