Segment Three: Building & Managing Your Support System

You work through it, but then you could have burnout. What—let’s talk about different patient advocacy groups or support networks, or finding PCAs. It’s a—it’s another big struggle for those of us that are adults living with MD. I don’t know who wants to take that first.

I can go here. Um, I’ll just say that, yeah, patient advocacy groups are there for you as a resource. They offer a ton, a ton of different resources, whether it’s peer-to-peer mentorship connections, equipment exchanges, or even referrals to state or agency services that could help you with those needs. It’s a great starting point to kind of help you find that sense of community, and most importantly, it is really about finding your community, because the community is really going to be your best resource. Others living the same life that you are living are going to know all the ins and outs and understand you on a level that’s really just like an unspoken thing, and they’re going to be your best resource. I would highly encourage getting in touch with other-based organization groups that can connect with those peers and really start your journey from there.

Yeah, I mean, I can also jump in as far as, you know, PCA management and just finding good, reliable help. I think—so here in Maryland, the way it works is the programs that pay for caregivers, we have to go through an agency, a home care agency. So trying to hire on your own—I think, you know, I personally have had a lot more success trying to hire on my own, but unfortunately that’s not as easy around here, you know, just because of how the setup is. So, I think, you know, for me, it’s been about finding a good home care agency that’s able to find good workers and good caregivers. And I’m very thankful that, you know, the two caregivers I have right now are excellent. One of them’s been with me for three years. She actually—there was a point a couple weeks ago where she actually put in her two weeks and was like, “I am moving to Ohio.” And I was terrified, you know. I was like, you’ve been such a great caregiver, and like, we have a really good relationship. I’m very comfortable asking her to, you know, help me out with whatever it is. And you know, she actually ended up coming back because, you know, the place she moved wasn’t for her. And so, you know, that was a big relief for me. But recently I went through that whole feeling of, “Oh, my personal care attendant is leaving. I’ve built up such a good relationship. How do I get that back?” And I think the biggest thing is being comfortable in expressing your needs, in advocating for yourself, telling them exactly, “This is what I need done. Here’s how I would like to have it done.” And a lot of times I do that by—you know, I have written instructions for them if they need it. Most people are—or many people are visual learners. So typically when I hire a new caregiver, one of my old caregivers or my mom shows them exactly what to do. So one day of “training” for them is just coming in and observing, just watching how my mom does the routine and asking questions as needed. We have one or two videos just showing them like how I like to be transferred out of bed for those who have never used, you know, a Hoyer lift before. So things like that, I think just developing resources for yourself that you can share with other caregivers so that you don’t experience that education burnout. You know, it’s hard training new caregivers all the time, you know, and there’s always turnover because—this is a whole different conversation—but caregivers don’t get paid enough, and so there’s always so much turnover, and so you’re constantly having to do this. So, whatever tools you can create for yourself that’ll make it easier to teach other people has been super helpful. And just being open—open communication is the biggest thing. Just don’t be afraid to ask for what you need. That’s what they’re there for. You know, that’s their job.

Betty, let me talk about communication and burnout.

Yeah, it’s very real. Even, you know, I’m the mom, and I feel like I should be able to take care of them and do it all, and I want to, but it’s just not realistic. And so I’ve had to learn over the years that I can admit that I can’t do it all, and I don’t have to feel guilty about it. I don’t have to get down on myself like, “Why aren’t you doing a better job?” I just have to accept it as is. And you know, my sons need to communicate with me what they need. But in return, I found that I have to be like, “I can’t do all of that.” Or sometimes it’s their preference that it’s me and not one of the other caregivers, and they’ll say, “But Mom, I want it to be you.” And I just have to be honest, like, “Guys, I’m really tired,” or like, “I’m stressed out and I need a little bit of time to take…” I just have to tell them how I’m feeling. And then they’re usually more open to allowing a caregiver or somebody else to help instead of me. And I don’t need a ton of breaks and time each day, but I do need it. I do need help. And when I do take the help, it really helps me maintain my health as a caregiver—mental health, physical health, all of that.

And also just listening to Adith and Kelly talk, the thing I kept thinking was, as a parent, we have to teach our children how to advocate for themselves, because it can be so easy for my children at least to wait for Mom to do it, or I’ll have a caregiver in the house, but they’ll still ask me to do something for them instead of the caregiver. So, I wish that I would have started at a younger age with my guys saying, “Okay, I know what you need. Can you please explain that to this caregiver? Can you please explain that to your care team at school?” We’re doing it now, but I wish I had started earlier just to promote their own self-advocacy, because I’m listening to these two, and I’m just like, amazing! That’s where I want my sons to be at some point, so that they can take care and do so much more of it. So kudos to you guys for being such strong examples of what that looks like, especially for a mom going, “That’s what I want for my kids, too.”

I think just to add on real quick, Betty, I mean, thank you for saying that. Yeah, I did start at a young age sort of advocating for myself, and where it started was me going away to MDA camp, you know, telling my counselor—for those of you not familiar, Muscular Dystrophy Association has camps for people with various muscular dystrophies, and they’re basically assigned a one-on-one counselor, and you know, it’s just like camp; we spend a week there. So that was my first real experience of telling someone who wasn’t my parents what I needed. And I think that really made me comfortable. And I started that when I was 11 years old. So, I think like you said, Betty, the earlier you start, the more comfortable you’re going to be. So I encourage everyone out there listening who has young kids to put them in situations where they need to advocate for themselves, and it really goes a long way, because now I lead my medical appointments, when I call and schedule my own appointments—I do all of that, and it was only because my parents were like, “No, you’re going to need to learn how to do this on your own someday. Why not start now?”

I definitely agree with that as well. Just to add on there, too, I would say communication really is the biggest thing—just communicating your needs and advocating for yourself. And especially in regards to PCA care as well, just spelling out those responsibilities and holding them accountable to know what’s expected. I also went away to MDA camp, like I had said, and that was my first time being away and telling people how to handle me and what my needs are. And that really opened up the door to, “Okay, this is what I need to start doing with my life and to really take charge.” But it really all starts with communication and just communicating your needs, and that helped me in my work and going off to college as well.

All amazing responses, all amazing answers. I think we have a bunch of questions, so let’s try and get to some of those. And if you’re still listening in, please keep them coming. Let’s see. I’m not sure about this first one: “Is there anyone who can share experience about myotonic dystrophy, especially DM1?” Kelly, I know you’re—kind of, we’re all rare on an island. You’re even more rare, but you don’t have myotonic, right? See, here we are as experts, and I should know this, but I don’t.

Right. I am not familiar with that, so I can’t speak to that. Sorry, that’s not in my wheelhouse.

No, it’s okay. And I know that there are myotonic support sites and community sites. Maybe the BioNews team that’s listening in can send a little research about that.

“What accommodations have made the biggest difference in helping you work or pursue a career?”

I can take that one.

Yeah, it’s your cute smiling face.

Yeah, I think—so, just a little bit of background: my degree is in mechanical engineering, and so currently I’m working as an engineer for the city of Salisbury where I live. And I think the biggest thing with accommodations is there’s so much technology out there that you can use to make it easier for you to do your work. One of the first things I requested was a hybrid option for work. You know, in case I’m having one of those days where I’m just exhausted or, you know, I’m feeling really sick, or for some other reason I can’t go into the office, just requesting that, “Hey, can I work from home?” You know, I’m perfectly okay to work, but maybe I’m stuffed up and I have a lot of mucus and I need to use my CoughAssist every 30 minutes. I can’t be at work, but I can be doing work from home. So, just explaining those things and requesting time off for medical appointments if things just come up spur-of-the-moment. So that’s been a big accommodation.

In my line of work, we have to visit construction sites a lot. So, obviously, construction sites are not accessible. So, having the option to use FaceTime—again, one of my colleagues can go out on site, do FaceTime with me, and I’m able to look at what I need to out on the site that way. I use this app on my phone where basically I can use that as my keyboard instead of typing on an actual keyboard, because for me, typing on my phone is a lot easier; it’s a lot faster. So I use that. It’s called Remote Mouse. It’s been super helpful. So, I use that, and I’m able to control my computer with my phone.

So just requesting—you know, saying, “Hey, this accommodation would be very helpful to me. I’ve already figured out how I’m going to make it work. I just need the permission.” I think if you’re able to pitch it in a way saying, “Look, I’ve already figured out the solution. You don’t need to worry about it. I just need permission to be able to implement my solution,” I think that goes a long way in making employers feel like, “Okay, this person—I’m not going to need to go too far out of my way to make accommodations. They figured it out. They just need my go-ahead to do it.” I think that goes a long way. But I’m always happy to talk more about it if anyone out there wants to reach out to me. I’m happy to go more in-depth, but I think, yeah, just using technology has been a big thing.

Kelly?

Yeah, I know there’s some general pushback on whether to disclose your disability upfront or one way or the other, but I’ve always been upfront with that in pursuing jobs and careers. And yeah, I think just making sure that your employer knows your needs and what kind of—you know, what you need to function. As far as—yeah, like when we have our conferences, I am severely tired after all the traveling and all the long days. So I factor in rest, and they know that that’s what I need. And so things like that, where you’re just upfront about what you need instead of having it be a problem later on or not disclosing it. I think that’s like a really big factor, and just having open communication and just really being upfront and honest, you know? “This is what I need; this is why.” Kind of those things.

Understood. I think we have a couple more questions. These are all really good ones: “What’s one accessibility issue that people without disabilities might not think about?”

I think that’s a good one, too. So a big part of the work I do is in ensuring ADA compliance with—basically, my job involves anything being constructed in the city has to go through our office for approvals and stuff. So my area of focus a lot of times is ADA compliance. And as we all know, just because something is compliant doesn’t mean it’s actually accessible. One of the big things I think that people don’t think about is getting into a bathroom. Lots of times people will put a trash can right behind the door. Well, technically, that bathroom is accessible; it’s ADA compliant. But if you stick a trash can there, I can’t get the door open far enough to get in. And also sometimes bathroom doors—the direction that they swing sometimes is difficult. Typically doors swing inward into the bathroom. Well, sometimes if that’s the case, I can’t get into the stall and then close the door behind me. And the weight of doors is a big thing. People really don’t consider that until they’re in a position where they’re seated and need to yank a door open. It’s an issue of leverage; it’s an issue of all that type of stuff. So, I think the placement of objects—movable objects—is a big thing that people just don’t consider. You know, trash can behind the door, or even those “wet floor” signs—sometimes they’ll put it right by the door. When you go through the door, you end up knocking them over and it’s like loud and obnoxious. So, I think that’s a big thing people don’t consider.

Yeah, I would say that, too, with the trash can. I feel like there’s always—that’s where they put, like, by the elevator buttons, is the trash can right by the elevator button. And then I can’t pull up next to it to push the button. So it’s like, again, with just random placements where it’s, yeah, an accessible area, but then you stick objects out that interrupt your access needs. So just little things like that people don’t even think twice about or notice until you’re in our position, and then it’s, yeah.

I think all the comments that Mark has put in the chat, too—you know, curbs, bathroom doors being really heavy. I would add people’s homes. I think people don’t think about it until maybe they themselves age or have an injury, and then they suddenly realize, “Oh wow, our laundry is downstairs and this is upstairs, and there’s a flight here, and this bathroom is tight.” You know, other people’s houses.

I was a middle school teacher, and there were a couple of years early in my career where I did a demonstration with my advisory where I was able to borrow a few manual chairs. And it was tough in middle school because everybody wants to screw around. But I would suggest to some of the able-bodied people: “Use this for an hour. You can’t get up.” They’ll learn real quick all the things they don’t think about. Even when they have to go swing a door open—if you reach for the handle and pull it towards you, your chair is now in the way, and they go, “How do you do this?” “No, can’t stand up.” So I would say, in a strange way, if you want to really teach someone, have them sit down and try it.

Betty, what do you get? I know Nebraska is completely flat, so everything’s accessible out there, right?

Oh, sure, of course! No, I find—so I’m going back to the caregiver perspective here. But when I’m just talking about something that I’ve done for my sons, I remember distinctly one conversation where I said something about, I think maybe we got a new shower chair, and they’re like, “Oh yeah, I guess they can’t just drive up in their chairs, huh?” And I’m like, “No, like, you know, they don’t live it.” So they actually really don’t know the details at all. So it’s the big things; it’s the little things. It’s so much of it—unless they’ve had a sibling, a spouse, a child, a parent, unless you’ve lived it, I think so many things are—they just, yeah, they don’t know.

I agree. I’ve had people that I become friends with after come back and say, “I never really thought about it, but I was at the mall and blah blah blah.” Or even, “What do you do at the bank? All the teller windows are really high.” I said, “Yeah, you’re right. I make them come out.” I awkwardly will say, “Can you come around?” because they’re not going to put a counter. And I’m not rude about it, but again, it’s not my fault. It’s not my fault at all. So, I think that that’s another one.

And I think that—I was going to say something else, but I lost it. Betty, you had me thinking about something, but again, my brain is going. Um…

I just wanted to—the disability community is a community anyone can join at any time, so I always like to point that out.

Yeah, you know what? You just jogged my memory. I wish in a perfect world that every home in America was designed to at least have one accessible entrance, a bathroom on the first floor, and a bedroom on the first floor. Because we can all think about—if we’re all lucky enough to be around this long, we’re all going to age. And what’s the biggest thing that happens when you’re old? You can’t stay in your home because you’re not safe, right? So, it’s kind of something to think about.

Okay, we have a few more minutes. We have talked about the trial and error; we can go back to that one if we have time. Let’s do this: If someone’s watching and navigating life with muscular dystrophy or supporting someone who is, what’s one thing you’d want the world to know? You have a microphone for five seconds. What are you telling them about life with muscular dystrophy?

Oh, your microphone’s on. You got to answer.

I mean, I can—I think I would say, you know, everyone has challenges in their lives, and it’s all about finding the tools that you need to overcome those challenges. I think, you know, don’t get frustrated. Don’t let it get to you. I know that happens to people all the time, but just push through it. Just know every day is a new day, and as long as you’re constantly out there looking for the tools to help you help yourself, you know, you can get through anything.

I think focusing on the things that you can do and not so much the things that you can’t do. Just remain positive, and yeah, focus on all the things that you can do and contribute, and not so much your abilities and this and that.

I work a lot with people’s parents whose children have just been diagnosed, and it’s such a very hard time in their parenting journey. A lot of times they’re very sad and I think dreading the future—they don’t know what’s coming. And so what I always like to say is, yeah, it’s going to be hard and it’s going to be challenging, but oh man, it can be so, so beautiful. So just know that it’s a beautiful life. You got to remember that part.

And it’s not what we signed up for, but we’re all here. And I always tell people, it’s the best family you’ve never wanted. And the three of you on this call live very far away, and I probably never would have met you if it wasn’t for this disease. So to me, the silver lining is the people that you network and connect with, because you really often—you see the best in human behavior. People—they want to be helpful, they want to know, and they’re not fearful if they have an explanation of why something is going on.

That’s a perfect way to end. We have like three minutes. A final question: “How do you deal with fear of the future, and how do you stay hopeful?”

Tough one.

For me, I think it’s a reality—you’re going to be scared. There are things that are just not straightforward; you don’t know what’s going to happen. And there are days I let that fear kind of grab ahold of me, and I feel it, but I don’t stay there. I think that’s the big thing: you just can’t focus on the fear. You just find something that’s good that day, and you focus on that one thing that was good, and you keep looking for the good things and don’t focus on the scary parts.

Yeah, I definitely echo what Betty said. Feel that emotion, feel that frustration, feel that fear, and then just let it go and move on, and say, “Okay, I felt that emotion. It happened. How can I just move on? How can I keep going in life?” And I think try to look for the silver lining. I know it’s hard, and sometimes mentally you’re drained and it’s tough, and it’s just been a bad day or a series of bad days, and it’s hard, but every cloud does have a silver lining. And whenever you face struggle, that’s the only way you grow. And that goes for anyone, not just people with disabilities—everybody out there. Everyone’s got struggles; this just happens to be ours.

And I think the community aspect has been the biggest gift that I could have gotten from having muscular dystrophy. It’s like I’ve met so many amazing people I never would have met otherwise. And some of my closest friends are people with disabilities, because they just get it. They understand us on a level that no one else ever could. And you know, I’m always thankful for—there’s a lot of bad that comes with it, but there’s also so much good, and the community is the good.

Well, let’s face it: we don’t like the able-bodied. What? Oh, sorry. We call you people the “ableds” because you don’t understand what it’s like to be sitting down. No, it’s good. You know, there’s good parking when people don’t steal it.

Anyway, now I’m just being silly. I love it, Mark: “Some days are diamonds, some days are coal.” I used to tell my students, “Life is a bowl of cherries, but I’m one of the pits, so you’re going to have to work with me as you move through the time period here.”

I wanted to thank Kelly, Adith, and Betty, and also the team at BioNews for giving us this platform to broadcast out to a wider audience today and realize that you’re not alone. It is okay to not be okay, and it is a sign of strength to ask for help, not weakness. We are around, and we are active, outgoing members of the community.

Betty, I think your dog is about to make an appearance, which is always a good way to end a webinar if you want to bring the dog on up here. And I believe I was told by BioNews this will be available to you in a few days. So, as we are taping this, it’s September of 2026. So, if you’re watching this in the future, please feel free to reach out. BioNews has our contact information. We all have columns and we’re all available if you search us up online. So, thank you very much, everybody, for attending our webinar today. Really hope you found a few things helpful. Kelly, Adith, Betty—be well. I’ll see you guys all soon. Thank you so much.