Panelists discuss how vision changes, fatigue, and muscle weakness can make driving one of the earliest and most significant challenges of living with myasthenia gravis. Through personal stories and practical advice, they emphasize the importance of self-awareness, symptom check-ins, timing activities around periods of peak strength, and knowing when it’s safest to stop driving or seek alternative transportation.
In our next segment, our panelists discuss how to balance employment with MG’s unpredictable nature. You can watch all the highlights from the webinar here.
Transcript
Meredith O’Connor: Hello, everyone, and thank you to all who have tuned in, and welcome to today’s patient and caregiver webinar, Navigating the MG Day.
My name is Meredith O’Connor, and I’ll be serving as your moderator today. I also happen to be living with myasthenia gravis, and so when I say I get it, I truly mean it. As mentioned earlier, we’re talking about the MG day-to-day, AKA what it’s like to live with those constant, invisible negotiations we make with our bodies around energy, vision, work, and in general, just day-to-day life. Joining me are four fellow community members who agreed to get real with you and me.
Please welcome Glenn Cutler, Jasmine Nathan, Morgan Greene, and Kathleen Timothy. Today, you’ll get to hear from each of them throughout today’s conversation. But before we dive in, a couple of housekeeping items. Note that at the very end of today’s session, there’ll be a link to a brief community survey. The first 50 people to complete it will receive a $25 Amazon gift card via email, so you’ll want to stay with us.
And two, as always, it’s important to remember that we’re not medical professionals, and the information and experiences shared today during today’s webinar is for educational and informational purposes only. It’s not supposed to be used as a substitute for professional medical advice, diagnosis, or treatment. So, should you have any questions or concerns related to your MG experience, always consult your doctor and care providers.
All right. So let’s get to it, and let’s talk data. Why? Because, well, your voice matters. And so, our community recently answered a social media poll about Life with MG, and, well, the stats, they speak for themselves. And I’ll just briefly touch on these. About 85% of the people polled reported a true loss of independence. Over 75% reported experiencing pain regularly, as well as changing their relationships with driving. More than 40% of people reported that they track symptoms by memory alone, as well as are still trying to figure out how to recover safely after a flare hits.
And lastly, 95% of the community polled says stress is a major trigger of MG symptoms. And I think, you know, what’s important to remember here is that when we see these numbers, they’re not just statistics, they’re people like you and me. And so today, we’re going to talk candidly about what that looks like in day-to-day life across three different domains.
So, vision and driving, work life, and MG flares and crisis prevention. Alright, so let’s start with vision, because it’s the number one driving hazard within this community, and, you know, losing the ability to drive hits independence way harder than almost anything else. And so, for many people, the MG journey started with the eyes, myself included.
So you know what, let’s just get into it. Morgan, perhaps you could take us back to a specific moment, or just a time in which you realized how much of your vision or impaired vision, rather, was impacting your day-to-day life, specifically, like, with things like driving. Could you speak to that a little bit?
Morgan Greene: Absolutely. So, I can actually remember the day that I was driving to my CT scan during my diagnosis stage, that I was having severe double vision, and there was also a thunderstorm outside, so it was just like a whirlwind of worst-case scenarios, to the point that I actually had to use a paper towel and wrap it around a pair of sunglasses to just kind of make a makeshift eyepatch to kind of be able to focus, to drive. So it is a real thing, and it’s very scary, of course, when those things are happening to you, in addition to just the overall weakness, and you’re in that moment of trying to figure out what is going on and what is causing this, and you’re feeling like something as simple as driving — a way to get yourself from place A to place B — is robbed from you.
Meredith O’Connor: Yeah, definitely. Thank you. Thank you for sharing that. And Kathy, how about you? I know, you know, we’re familiar with one another, and … but can you relate to Morgan in any way? I mean, like, how has your vision impacted your driving or daily life in general?
Kathleen Timothy: I had to give up driving about two years ago, maybe a little over, but I have hope that that’ll happen again, so much so that I keep my car. And it sits in the driveway, my daughter drives it around every once in a while to keep it alive. But I just decided it just was not safe for me to drive, because my … I have more blurry vision than double, but it’s almost constant, so it was a pretty easy decision for me.
But you’re right, Meredith, losing that independence was one of the hardest.
Meredith O’Connor: Well, absolutely, and again, thank you for sharing. Thank you both for sharing, and I think you know, that really speaks to just the impact that a lot of times, we have our vision, then we take it for granted when we lose it. And so, you know, evidenced by our two fellow community members here, we know that double vision and droopy eyelids and blurry vision, they have that drastic impact in our daily life. And so, I think what would be super interesting is if we discussed you know, what helps you sort of take that temperature around that safety, like you had just mentioned, Kathy?
Let’s go with Glenn. Glenn, if you … how has your driving been impacted? And if it has, do you have, like, a “go” or “no-go” test that you use before you decide you’re healthy enough to drive? Or are there warning signs that you experience that, you know, kind of, like, alert yourself that maybe it’s not a good idea to drive?
Glenn Cutler: I mostly do not drive anymore due to some orthopedic issues, which compound my myasthenia issues. But when I was still driving frequently, I do keep my license, and occasionally, it was, when I went to get my driving license renewed. I didn’t know that I’d have to do a driving test. So, the examiner says to me, “Oh, we gotta go do a test, because you’ve got a diagnosis.” And I was like, “Oh.” So, but I did. What I think you have to do, as far as driving, you’ve just got to be aware. Self-awareness is such an issue with myasthenia anyway. You have to know your own limits, and as you said, before you get out and decide to do something, you’ve got to see, you know, am I clear? Am I clear-headed? Do I … my reflexes … it’s more than just the vision itself.
I remember driving home when I was still actively working, with one eye propped open, and actually opening an eyelid, because I didn’t have so much double vision as I had the ptosis, and I was droopy, and I thought I needed both eyes to drive. I later learned that you can drive perfectly well with one good eye. So that was nice, too. So I mostly don’t drive, but I think self-awareness is the key. You’ve got to know what is likely to be happening to you, and … or are you going to have particular stressors on that drive? I live near I-95, and if you are going to get on I-95 for very long, you’re going to be a stressed driver.
And as you do that, with all the activity that you have to keep factoring into your brain and your eyes, you’re gonna stress those eyes, and after an hour or so, it’s not gonna be what it was when you started driving.
Meredith O’Connor: Yeah, that self-awareness piece, I think, is something … it’s spot on. It’s not just the vision, it’s … it’s really all of your symptoms. And Jasmine, can you relate to that? I mean, I also noticed that you wear glasses, and I’m wondering … I’m curious if that’s for … if those help your MG, or if there’s anything … from the driving aspect in your eyes, laugh, pun intended, I guess, that helps your driving, or, you know, things that … or do you drive, I guess, is my first question, and if so, how do you sort of measure that safety net of that it’s okay to drive?
Jasmine Nathan: I think for me, when it comes to driving, well, presently, I live in DC, so I take a lot of public transit, but when I did drive, I actually used to do a lot of check-ins with my body before I did drive, so I normally would drive in the morning time when I had a lot more energy and I had a lot more rest, versus driving in the afternoon, because, you know, in the afternoon, I didn’t have a lot of energy when it came to working, so … I would try to check in with myself beforehand to make sure I had enough energy to kind of drive myself home, because I didn’t want to have, you know, weakness, I didn’t want my eyes to be drooping, as Glenn mentioned. I didn’t want to have,
just any type of symptoms with MG that would cause me to have any issues, or I would make sure to take my medication at a certain time so that I wouldn’t, you know, have those issues, if possible. And if not, just try to rest myself as much as I can, if possible. But … as far as my glasses go, there are, I try to get my eyes checked as much as I can, because I do have a lot of double vision versus blurry vision, so I try to get my eyes checked as much as possible so my strength can be as strong in my glasses, because I do have two sets of glasses. I have,
I have glasses that have darker shades versus these glasses — they do go darker when I go outside — but I have shades that are just dedicated to having dark in general. So, just in case when I’m driving, the sunlight is too bright for me outside.
Meredith O’Connor: Yeah, no, that’s … that’s great, and I think … sort of what you’re alluding to really speaks to, you know, I’ll … I’ll … excuse me, let me go to my next slide. It speaks to, like, all the different types of safety measures we can take, you know, when we’re thinking about driving, or just our vision in general. So, as always, it’s good practice to do, like, a quick check before you decide whether it’s safe to drive. So, a few things you can do is check in with yourself, as my fellow community members have really already discussed, to see whether or not you’re experiencing double vision, droopy eyelids, blurry vision, or fatigue. Testing your eye tracking, you know, similar to what maybe your neurologist does, you know, in your neurology exam from, you know, following your fingers side to side.
Practically speaking, if you plan on driving, it may be helpful to be, of course, strategic, similar to what Jasmine was just saying, around when you are your strongest and the time in which you take your medications. And of course, as a reminder, you know, should you experience symptoms in real time, it’s important to have a backup plan. I think the last thing we want to do is endanger ourselves or anyone else, so whether that’s pulling over or having someone pick you up, those are all really good tips.
And then lastly, to make sure that you’re medically clear to drive, your doctor should be evaluating … excuse me, evaluating your muscle strength and your reaction time in order to meet those safety standards. All right, so, and one final note before we move on to the next topic. Just know that if you’ve changed your relationship with driving because of myasthenia, one, know you’re not alone. I’ve also changed my relationship with driving.
But to try to remember that it’s not a failure. This has nothing to do with failing, it’s just simply an adaptation. We’re adapting to our circumstances. So, I’ll leave it at that.