Segment Three: Independence & Daily Life with SMA

Kevin Schaefer: On top of that, 38% named maintaining independence as their single biggest day-to-day stressor. So Dr. Al, I want to start with you on this because I think you can talk about your past experiences with Jack and travel. And so can you talk us through the actual operational reality of planning a trip or even a complex day out of the house with SMA?
Dr. Al Friedman: Yeah, thanks Kevin. This is this is a common such a common challenge for families and individuals affected by SMA. Travel is really really complicated and as a member of the Cure SMA community having facilitated 25 years of support groups for our kids and adolescents damage to wheelchairs happens way more than it should. It’s hard to interrupt our routines. It’s hard to travel with lots of medical equipment. It’s hard to be in unfamiliar places. It’s hard to set up hotel rooms that work for us. I remember being in your hotel room, Kevin, with your dad when we we had some time together to do another Bio News event during the conference. It’s hard work. It’s complicated and it’s risky. And I have great respect for members of the community who do travel, who have the courage to travel, the creativity to travel, and figure out how to rise above the logistical challenges that are inherent in travel. And I’d love to hear what our other panelists say about this because you’re the ones who live it. And I I don’t know how adults with SMA manage independently to travel as well as you all do many times as I was toting around my son’s equipment for him and with him. So thanks for including this in the session today, Kevin.
Kevin Schaefer: Absolutely. Meyn, do you want to speak to that and some of your travel experiences?
Meyn Chavez: Sure, I’d love to. Well, for starters, I feel like I am privileged and lucky enough to have the opportunity to travel a fair amount. However, it comes at a rather complicated cost. You can always risk having a wheelchair damaged. Which is probably the scariest part for travel for me in my perspective because without my wheelchair being in good condition like whenever I get to the other side I have you know a limited way to get around now so if there’s any kind of damage to it the rest of the trip is entirely affected and on the worst occasion that I’ve had was traveling to Chicago I was going to see my favorite band play at Wrigley Field and it was going to be like this big thing and I was so excited. I took a red-eye flight to Chicago and landed up at about 2:00 a.m. just to see that my chair was like total totaled. Like it was so busted and I was like, “What am I supposed to do now? It’s 2:00 in the morning in a city I’m not from, you know, like what do I do?”
But thankfully after lots of practice and traveling, I think that it’s important to, first of all, do it anyways. If you want to travel, do it anyways. Wheelchair damage be damned, so to speak, because I would rather go through that experience than not go through that experience and miss out on something that they really want to do. But of course, that’s like my own opinion. Not everyone has to feel the same way. So in my practice like I was mentioning I think it’s just really important to fine-tune your routine on the way to the airport and all the way to you getting to the seat. Always call before the always call the airline before. Let them know the dimensions of your chair, how much it weighs and they have to write it down in the system. And then once you’re there, if possible, be a little bit earlier than normal. Find someone, a supervisor, some kind of manager, tell them, “Hey, I have a very expensive customized piece of equipment. What kind of steps do you need me to take? Do you need me to recline the chair in any kind of way?” because different airport different airplanes will have different spots for the chair and sometimes that means you need to accommodate it. So always find someone who can tell you that. Usually it’s a ground person, someone that’s loading the luggage to speak to them. They’ll come up, they’ll tell you usually, “Hey, we need you to leave the chair on manual. We need you to leave the chair in a certain position.”
And then always of course communicate with the team helping you load into the plane. Chairs are very uncomfortable and unfortunate that we have to do that step, but if you bring enough pillows that are good for you for support, for whatever kind of help you need, that’s really important. Make sure that you have all your things. I always pack a bag with strictly just pillows that I take with me on the plane to help me get comfortable. And also as a bonus, like you may not know, but you can travel with your seat cushion on the plane. So, put that baby on there and it’s fine. Like sitting in a seat that’s not yours is so uncomfortable. So try to make it as comfortable as you can. And take your time. Take your time. I think it’s easy to be like, “Oh, everyone’s waiting to load the plane. Oh, like whatever.” No, no, no. That doesn’t matter. Even if they’re rushing you, be like, “Hey, I need help.” Like, chill. Take your time. because what’s the point of being uncomfortable for 3, four, 5 hours on the plane? especially since we have we’re the last people to get off the plane in in this these circumstances. So speak up if you have to communicate everything, every step. If you’re traveling by yourself, if you’re traveling with a caregiver, communicate with them, communicate with the airport team. And I really think it’s getting a little bit better. It used to be a little bit rough before, but I think with all like the advocacy that we’re doing and the demand for better treatment, airlines have a little bit more knowledge and are kind of keeping it in mind. That’s not to say that they won’t damage your chair, but at least they’ll be more willing to work with you on how to fix it.
I’ve had occasions where maybe something was kind of damaged and they just called like a technician up and helped me fix it or put it back in place, which is great. Also another big pro tip I wanted to share, if your chair is damaged after a flight, do not leave the airport. You have to file a claim. That claim is going to help you pay for repairs, pay for a new chair, whatever it may be. Without that claim, whatever you say to the to the what’s the word? The airline doesn’t really matter, unfortunately. So, make sure you have your paperwork in place at all times.
And otherwise, just be open to working around obstacles a little bit. It’s not going to be comfortable 100%. I guarantee this. But it’s going to be fun and if there’s a cool trip at the end of it, then it’s worth it and it’s worth exploring if you really want to. Last year I went to Europe thanks to Curve Free with Coy Lee, a foundation that provides grants for disabled people. And I was able to go to Europe for 2 weeks. And that was a 9-hour flight, but I was like, “This is a dream. I’m going to do it. So, definitely I encourage everyone if you have a trip that you want to make and flying would be the fastest way to get there, you can do it. You just need to plan it and be very thorough about all the steps from booking all the way to day of flying.”
Kevin Schaefer: I love that. Thank you so much, Meyn. I think you hit on a lot of great points there and I love the encouragement that while travel can be complicated for us, it is also very possible. And in summary of this topic, we’ve just put together four core operational takeaways for managing complex travel and logistics. And a lot of this were tips said through this conversation, but the tips we had laid out are:
Plan around energy, not just schedules: Build it around your stamina and equipment limits.
Directly verify accessibility: Call venues in advance and transit hubs directly. Don’t rely on generic website accessibility badges. Be really specific.
Pre-assign support roles: Define responsibilities for your support network whoever that may be ahead of time so no one is guessing under pressure.
Schedule recovery buffer: Build dedicated rest periods into both sides of travel days.
So ex I think the big takeaway from all of this is that extensive planning isn’t a sign that you’re struggling. It’s proof of how effectively you manage a complex life. So we are wrapping up here. I want to thank first of all all of our panelists here. This has been great and the and I know we would love to get even more detailed on a lot of these. We could talk for hours on this on this stuff, but we have collected some questions submitted by the community prior to today’s broadcast. So just we’re going to bring just a couple of these questions briefly.

Q&A Session
Kevin Schaefer: So the first is: how do you handle air travel when you’re worried about damage to a power wheelchair? Meyn, I know you already touched on this, but Mindy, is there anything else you want to add to that topic?
Mindy Henderson: Yeah, I one thing that I I just want to say really quickly is, you know, if you are traveling, know your rights. You know, there are great resources out there where you can look to see what your rights as a disabled traveler are, and that’s really important. As far as my wheelchair goes, there are things that I do to be protective of my wheelchair. I’ve found these, you know, our joysticks are so sensitive. So, I I’ve found these like bubble wrap envelopes that are kind of amazing and I put like four of them over my joystick. And that number one protects it, but it also communicates to the person handling my chair that it’s a sensitive part of the chair and you know that they should probably be careful of it. I’ve also done things like print out things to attach to my chair that and I’ve written in, you know, bright red marker. You know, this particular piece is really expensive to fix if it gets broken in in, you know, bright red marker. So, you know, proceed with caution. Do this, don’t do that. Like Meyn said, I in as charming a way as I possibly can at the gate when I check into my flight, I do borderline demand again in in a very, you’re charming friendly way to speak with the person from the ground crew that’s going to handle my chair so that I can tell them the dos and don’ts. And that I think has served me really well.
Kevin Schaefer: I love that. Thank you so much, Mindy. And then last question, this is for Dr. Al. What’s the best way to handle an employer who offers remote work as an accommodation, but you actually want to be in the office? This is again one of our member community submitted questions.
Dr. Al Friedman: Yeah, thanks Kevin. This comes up more often than people realize and it’s worth being direct about because remote work isn’t automatically a reasonable accommodation just because it’s easy for the employer to offer. Obviously, remote work can be very helpful to people with SMA and with disabilities, but it’s not for everybody. Under the ADA, an accommodation has to be effective for the individual. And so if being in the office matters to your career development, your visibility, your relationships with team members or or just your preference, remote work doesn’t meet that bar. So what I encourage folks to do is to not accept the substitution without a conversation with the HR folks. Come back with specifics about what would really actually make in office work viable. It might help to have a closer parking space or a particular workspace configuration, the modified schedule to avoid fatigue access to a quiet rest space. So you frame it as I appreciate the offer of remote work, but what I what I actually need to perform consistently in person is blank and to be as specific as you can. Advocate for yourselves and tell the HR folks why you want to do the job in person if that’s what you want and you feel is best for you and for the employer.

Conclusion
Kevin Schaefer: Thank you so much Dr. Al. I really appreciate it. And you all I want to thank you sincerely for joining us. I know we went a little over today. And just before we wrap up, I want to highlight one final stat from our polls. So out of every question we asked the community, the lowest score recorded across the entire community was confidence in navigating life beyond medical appointments. And that is really why we hosted today’s conversation because while clinical care is crucial, there are so many other more components to living with SMA and I think you all spoke to this wonderfully. So thank you so much for sharing your lived-in experiences. Mindy, Meyn, Dr. Al, you were all fantastic. I really appreciate your time today and everyone for joining as well. I know we didn’t have time to get through the chat questions, but I appreciate everyone sharing their thoughts there. Also, if you check out the chat, please take two minutes to click the link on your screen or in the chat to complete our brief feedback survey as a thank you for helping us build better resources. So just follow that link and we would really appreciate your feedback about today’s program. So thank you all for joining us for being open and for advocating for yourselves every day. We will see you all next time. And if explaining SMA feels like the hardest part of relationships for you, you’re not alone. And it’s a skill, not a flaw. So it gets easier to talk about over time. So thank you all. I really appreciate it.
Mindy Henderson / Meyn Chavez / Dr. Al Friedman: Thank you. Thank you guys.