Segment One: Daily Routines & Home Hacks

Today, we’re diving into living well with muscular dystrophy: real-world hacks and daily realities. We’re skipping the clinical lecture format and focusing instead on peer-driven, practical strategies for everyday life. I am joined today by some incredible members of our community: we have Betty Verton, we have Adith—I’ll let him say his last name so I don’t butcher it—and we have Kelly Berger.

Before they introduce themselves, quick housekeeping for everybody: You are more than welcome to drop your questions into the Q&A box at any point. We will monitor it, and we will try and answer as many questions as possible. We also have reserved time at the end that we will use for questions as well.

So, to ground today’s conversation, 44% of the community reports the physical tasks as their biggest daily home routine challenge. So, we’re going to talk about that. 33% cite managing energy and fatigue levels. I think everyone on this call has dealt with that as well, on independent supports. 33% use adaptive clothing or modified home setups, including 22% who say they’re essential to daily routine. Living well often comes down to practical systems, not willpower.

So, let me talk a little bit about home routines in a moment, but first, I’d love to have everybody introduce themselves. I’ll just go in order of my screen here. So, go ahead, Miss Kelly Berger.

Kelly Berger: “All right. Hi, everyone. I’m Kelly Berger. I’m the community engagement manager at CureCMD, and I personally live with a rare form of congenital muscular dystrophy called collagen VI.”

Patrick: “Awesome. Great to have you with us today. Adith?”

Adith Thumalapalli: “Hi, everyone. My name is Adith Thumalapalli. I am 28. I live with Duchenne muscular dystrophy, and I’m the president of PPMD’s Adult Advisory Committee. So glad to be part of this panel.”

Patrick: “And Betty?”

Betty Verton: “I’m Betty Verton. I am a columnist for BioNews, a mother to seven, and a caregiver to three young men living with Duchenne muscular dystrophy.”

Patrick: “Now, Betty, you said a caregiver to seven and three young men. That does not mean you have 10 children, right? That’s included?”

Betty Verton: “No, that is included. Three of my seven have Duchenne.”

Patrick: “Okay. So, I think that everyone’s heart just probably skipped a beat there and said, ‘Wait a minute. This woman has what?’ So, yes, Betty does not live in a shoe, but she does have a lot of children. So, we’re going to actually start with you, because obviously your role as a caregiver. Let’s talk about morning routine and your house. I know that your children are widely varied in age. So, how do you manage morning stress and what do you do? And then we’ll go over to Kelly and Adith for some comments as well.”

Betty Verton: “Okay. Well, mornings are very busy in our home, and we have lots of different schedules. Kids are coming and going, and of course, we’ve got to get Maxon and Charlie, my sons, up out of bed who have Duchenne muscular dystrophy. We find that having a plan, having flexible routines, and preparation are really key: getting things done the night before, packing lunches, getting their clothes out, making sure chairs and lifts are charging throughout the night so everything in the morning goes as easy as possible. But we also know there’s got to be a lot of flexibility because things just can change. You know, one of them might not feel well; they might be sore. Equipment can not work. So, we’re flexible, and we just have backup plans. Me and my husband share some of the responsibilities, and we get through the stress that way.”

Patrick: “Can you talk a little bit about what a backup plan looks like? I think just the way that I’m talking to you, I think that your house should probably be a YouTube show at least, or at best, Chip and Joanna do a reality show on the Verton house. But what do you mean a backup plan? For people in the audience not familiar, what—”

Betty Verton: “Sure. Well, it seems like if we’re going to forget to charge something, we’ll forget to charge the ceiling lift because it doesn’t need to be charged every day. So, it’s just one of those things that we can forget. So, we have a Hoyer lift backup. If the ceiling lift doesn’t work, we have a closet with a Hoyer lift in it. We go get that out. If me and Jason, my husband, our backs can get hurt sometimes when we’re doing as much caregiving as we do. So, if one of us wakes up not feeling well, we get different equipment out. We get the Hoyer lift. Or if I’m not feeling well, Jason will do the majority of the caregiving that morning. Or if his back is sore, I’ll do the majority of the caregiving that morning. So, it’s just sort of being flexible, having more than one person in the house that knows how to take care of the boys, and then extra equipment.”

Patrick: “And are the kids, since you have a gaggle, do they help take care of each other, or is it mostly you guys?”

Betty Verton: “Um, so we have an interesting situation where my 19-year-old son—he’s my only son without Duchenne—is going to college here locally and living at home. Because he’s over 19, he can be a paid caregiver for his brothers. So, he helps also. And then we have another caregiver come in once in a while. The little girls are very helpful in their own way. I mean, they’re not doing major caregiving, but if they drop something, they can pick it up for them. If they forgot something in their bedroom, they’ll run and get it for their brothers. That sort of thing.”

Patrick: “I love all of that. So, let’s jump over to Adith. Talk to us about your routine, and also, we mentioned at the top about adaptive clothing. You and I have known each other a long time. We’ve talked a little bit about that. How do you manage that situation, and also some of the adaptive clothing?”

Adith Thumalapalli: “Yeah. So, just briefly to go over what my morning routine typically looks like: At this stage in my life with the progression of my condition, I have overnight caregivers who come in at night, help me with my nighttime routine, get me into bed, and stay in our house overnight. Because I use a BiPAP overnight just to make sure my breathing is okay, nothing goes wrong overnight, and to help me reposition.

I work part-time, so the days I get up to go to work, they help me with my morning routine, get me out of bed, things like that, which is a huge help so my parents don’t have to be the ones to do all of my caregiving.

I definitely think a big part of my routine is using that outside help—getting caregivers from agencies to come in, and even some that I hire myself to come in and take some of that stress and physical workload off my parents, because it’s a lot.

As far as the topic of adaptive clothing, yeah, that’s a big thing because a lot of us are sitting all day. So, we have to consider things that others might not with what we’re wearing. Is it going to cause skin breakdown? Is it going to cause chafing? Are the pants that we’re wearing comfortable to wear all day?

What works for everyone is a bit different. What I personally use: I found these sweatpants that basically have a zipper in the fly. So, it helps with using the urinal, and it just helps with getting them on easier when I’m lying in bed, rather than trying to pull up jeans or trousers or something like that. The material is comfortable, so it’s good for all weather.

It’s tough to find adaptive clothing that also looks good. But once you have found something that works for you, I typically just stick with it. Basically, the pants that I have are all the same because I found something that works for me, and I keep using it.

Similarly, jackets with double zippers are super helpful so they don’t bunch up when you’re sitting. Anything with button closures—I usually use magnetic buttons instead of the ones that you need to use your fingers to fasten. Just little things like that can make a huge difference.

Adith Thumalapalli: “It’s the same with keeping your workspace organized. I know personally, I use a lot of smart home assistant smart devices. I have an Amazon Alexa—”

Patrick: “Okay, good. It didn’t trigger when you said that. I was going to say careful, you’re going to fire it up!”

Adith Thumalapalli: “Yeah, right! But it’s very helpful for things like turning on my computer, making sure certain things are charging, turning on the lights, turning off the lights—things like that. Just controlling electronics, which others can do pretty simply. It’s easy for them to plug in a charger or plug in their phone; not so much for us.

So, I think it’s about finding the tools that work for you and making them work for you. There’s a lot of technology out there; there’s a lot of adaptations you can make to just make your routines throughout the day go smoother.”

Patrick: “Yeah. And I know—shameless plug—I run the BioNews muscular dystrophy forums, and we have an ongoing discussion about daily hacks and daily resources. And then Adith, I’ll let you plug our thing in a second. But before I go over to Kelly, somebody asked a question about socks and a 12-year-old living with Duchenne who has enlarged calves, as a lot of us with muscular dystrophy do. Any sock hacks?”

Adith Thumalapalli: “What I actually do with socks: I also have a little bit of swelling in my feet, so I have compression socks. But as we all know, compression socks are a beast to get on. What I found is I actually found a company that has Merino wool compression socks, and they’re a lot easier to get on. They’re also warmer in the winter, and the cool thing is in the summertime, they keep your feet cool so you don’t sweat as much. It’s super easy—easier than traditional cotton socks to pull up. So, that’s one thing I’ve figured out.

I also use Ace bandages. Sometimes if my feet are really swollen, it’s hard to get those compression socks on, so then I’ll just wrap them with Ace bandages. They also work like socks and keep my feet warm.

And like Pat was just saying, we have a list of DIY hacks on our website—PPMD’s website—where people in the community share what tools and hacks they’re using in their daily lives. It’s a great resource to check out. So, I encourage anyone to go on PPMD’s website and look for that. It’s called ‘Knight Hacks.’”

Patrick: “Yeah, just a place where we can share stuff that works for all of us. You know, we’ve got to keep the conversation going. Speaking of which, Kelly, you’ve been very quiet over there. Can you tell us a little bit about not only your daily routine, but you mentioned that you work at CureCMD, and you probably see other people as well, or work with people over time who have given you different tips, tricks, and hacks. Talk to us about your daily routine and things that you’ve found shortcuts for.”

Kelly Berger: “Yeah, for sure. So, I do also rely on caregivers as my main support system, so definitely echoing what a lot of you have already said there.

As far as daily routines, I think there’s a stigma to overcome to know that it’s okay to ask for help. I feel like some of us struggle, and there’s kind of just that negative connotation that asking for help shows weakness. But allowing help to come in allows you to do more in the end and increase your own productivity for the things that you can actually do.

I think carving rest time into our schedules ahead of time is a really big thing. That way, you don’t wait until you’re too tired, which only makes things harder and leaves you playing catch-up. It’s definitely okay to take breaks. In today’s fast-paced world, people get caught up and don’t factor in breaks, but those really do make a difference to recharge and preserve your energy.

Kelly Berger: “As far as daily hacks and adaptive equipment, definitely all the little things. I am a big fan of things like grabbers or little hacks that help you do those little things independently. Whether it’s intentionally adaptive or you rig it up yourself, those can really mean the biggest thing to be able to do things yourself and offer a sense of accomplishment. So, definitely invest in the little things and research products. I know it’s hard to find, but hopefully that list that you mentioned earlier can help with finding those hard-to-find things to help make life a little bit easier.”

Patrick: “Yeah, and I think it’s good to tell everyone that we don’t have to reinvent the wheel. Sometimes there is stuff out there; you just have to search. I know even big sites like Amazon have all kinds of adaptive products. Kelly, I hope you don’t mind me asking, but do you have decreased hand strength? Are you a full-time wheelchair user? When you talk about a gripper, are you talking about picking stuff up off the floor, getting stuff down in the supermarket, or all of the above?”

Kelly Berger: “Yeah, all of the above! So, I’m a power wheelchair user. I have pretty significant contractures in my elbows and hands, so my reach is very poor. Reaching things is just very difficult. So, I usually have the fold-up grabbers that I can open up if I drop something. I keep it by my side always. And then I also have a backup grabber for my grabber in case I drop that—which happens, you know! Having those on standby to try to do those things in emergency situations or if no one’s around, you have to try to figure it out.”

Patrick: “Yeah, I saw everybody grin. Necessity is the mother of invention, right? All of us probably have a story where we’ve been burned. You think, ‘Oh, this can’t miss,’ and the next thing you know, my keys are on the floor and I’m by myself thinking, ‘All right, that might as well be the distance to the moon because that’s impossible for me.’

Before we move on to another topic, Adith or Betty, is there any time you’ve had to improvise or learned the hard way that you need a backup to the backup to the backup? I think the takeaway message here is to plan for a lot of steps, manage stress, and not rush, because it takes as long as it takes. Adith, do you have a story?”

Adith Thumalapalli: “Oh, I definitely have a story. I think you’ve heard this story, Pat. One time, I was traveling to PPMD’s conference in Texas and realized that I forgot half of my shower chair at home. Not the whole shower chair—just half of it! I brought the seat part and all of that, but forgot the wheels at home. We realized this as we were pulling into our hotel in Memphis, Tennessee, which is a good eight hours away from where I live in Maryland.

At that point, I was kind of freaking out. I was like, ‘Oh man, I need my shower chair.’ The most important thing was that my folks and I stayed calm and tried not to get frazzled, even though it was a scary situation. We had to think on the fly, so we actually stopped at a Walmart and got a regular folding lawn chair. That’s what I used as my shower chair for the rest of the trip! It worked so well that it’s what I use when I’m traveling now. I don’t even bring my portable shower chair anymore—I just take a lawn chair.

Adith Thumalapalli: “I ended up discovering something that worked better for me through a mishap. So, sometimes you can take them as learning experiences. If things go wrong, there’s a reason for it. If you stay calm and think logically without letting emotion get to you in that moment, sometimes you can discover an even better solution. And then it becomes funny later on.”

Patrick: “What about you, Betty?”

Betty Verton: “Yeah, I have a story where we got lucky because I had everything I needed, but we were at a hotel after finishing clinic appointments. I traveled alone with the boys. I unloaded the Hoyer lift and the suitcases outside of the van and loaded everything up, including my sons. But I left the suitcase sitting right next to the van at the hotel where I had left it. It had the Hoyer sling in it and all of the boys’ medication.

I didn’t realize I’d left it there until we were home. The good news is that I don’t travel with all their medication—I only take what we need, so I had extra doses for them at home. We also have extra slings (we actually have four slings for two Hoyers). So, I had everything I needed, but it was one of those things where I thought, ‘Oh, I’m so glad we had these extras.’

Another story that we learned a lot from: We had car trouble and needed to stop and spend the night somewhere. But I didn’t have the boys’ medication for the next morning, and with steroids, we decided not to stop. We pushed the van past its breaking point, but we made it home.

Betty Verton: “After that experience, we now keep a two-day pillbox with three doses of medication in my purse at all times. It’s just there in case we ever face a situation where we need to stop, so I always have medication with me. That was the thing we were most freaked out about—they’ve got to have their meds in the morning. It’s impossible to think of everything, and stuff is going to happen.”

Patrick: “Quick question: Did the hotel send you the suitcase?”

Betty Verton: “Yes, they did.”

Patrick: “Well, that’s cool. It was good. This is a perfect segue into the travel stuff we’re going to talk about next.”

Sources:
Bionews MD Webinar Part 1 9-22-26.mp4