In the second segment of the “Pushing Back at MG” webinar, panelists share their best advice on how to prevent and manage MG symptom flares through lifestyle changes. Topics include unique practices for navigating the day-to-day symptoms of MG, and the role of stress alleviation in treating the disease.
In the next segment, our panelists share advice for how to partner with healthcare providers to improve MG care. You can watch all the highlights from the webinar here.
For other MG resources, visit the Myasthenia Gravis Foundation of America (MGFA):MGFA plays an important role in strengthening the MG community — empowering patients and caregivers through education, advocacy, and connection, and contributing to global efforts that raise awareness and advance research.
Transcript
Shawna: So, now that we have covered our first segment, we’re going to go ahead and move on to segment two, challenges — of which we have many. So, we’re going to discuss some practical lifestyle changes that may or may not help with MG symptoms.
These are ones that our panelists have found works for them. And please do remember again that this is a very individualized disease, and what is shared here today may or may not work or help you as well.
So, please do keep an open mind with what we’re sharing today. So, question one: what unique daily practice or unexpected tool has helped you navigate the day-to-day challenges of living with MG or getting ahead of your symptom triggers? Vanetta.
Vanetta: Um, I think for me, um, just kind of in the morning, I’ll do kind of like a self-assessment, and I try not to — I’m not a morning person, by the way. Um, so, naturally, I give myself time to kind of ease into the morning, because I find that when I wake up with a jolt with alarm clocks, it does something to my nervous system that kind of triggers my symptoms.
And so, for me, having that blaring sound of an alarm clock or, you know, sleeping into the very last minute and having to rush out the door, that — that actually worsens my symptoms throughout the day. So, one of the daily practices that I have is that I — I don’t wake up to alarms anymore, mostly because I have a seven-year-old, and that’s kind of a natural alarm.
Um, but I give myself enough time to kind of ease into the morning. Um, making sure that I give myself enough time to get ready. You know, have a minute to, like, pray, meditate, you know, read something uplifting or positive before I start my day. Um, and as far as, like, setting myself up for success for the day, you know, I — I try to.
So, one of the things, for an example — you know, you’ll have providers tell you, oh, you should, um, don’t take your medicine on an empty stomach or, you know, take your medicine at this time, etc., etc. For me, I’m not a breakfast person; getting up and eating breakfast, it actually — it doesn’t make me feel good. Right. And I feel that effect throughout the rest of the day.
So, I make sure that since I know that I’m not taking my medications first thing in the morning, because that doesn’t work for me, I — I kind of make sure that I’m not getting up and doing my most complex task in the morning. You know, I am a personal trainer, and, you know, the fad is, hey, 5 a.m., you get up and work out. Not for me. I actually work out at 8:00 — at 8 p.m. is my workout time daily or, you know, multiple times a week.
That’s just what works for me in managing my energy and my symptoms. So, yeah, that’s — that’s kind of like what I do. I try to, like, pace myself, knowing that, you know, I have but so much energy in my little cup to expend throughout the day.
Shawna: I’m the same way. I don’t do alarms or anything at all. I was medically retired from the Army, and my husband keeps telling me that I need to accept my retirement, and I think 14 years later, I might finally be there. Um. I wake up whenever I wake up, I give myself at least 2 to 4 hours for my meds to kick in. I don’t always eat breakfast. Um, but if I have to, I’ll eat a granola bar or oatmeal, and then, you know, after that, we’ll see how much energy I have.
And, you know, what’s going to happen for the day. Like, for today, I woke up, took my meds, had to take a break. I went and had brunch at, um, the diner my friend owns. Came back, had to take a break, showered, had to take a break. Got dressed. Another break. Did my makeup — another break.
Had to come upstairs. Another break. So, knowing that I need those breaks — so that way I have the energy or the ability to speak. Um. That’s my biggest tool, I think, in the daily practice is accepting that I need those things and not being upset about it. How about you, Bruce? Are you an alarm clock guy?
Bruce: No, no, I never was. I was always at 5:00, um, in the morning. Uh, I — that was my quiet time. I make coffee and have my Bible study. I do, you know, whatever, getting ready for work or whatever. Um, that was at 5:00 in the morning, and still to today. I’ve been retired for, um, well, a good number of years, but I’ve done so much. I was never one to sit around the house — outside, working in the yard, going to work, doing whatever.
Um, but yes, that’s my — the routine now is get up, do my thing, rest, do something else, rest. And I plan out ahead of time, knowing that I can’t just go like I used to — go out in the yard at six in the morning and not come back in until, like, after lunch without eating or anything. Now I know I have to. I have to have my meal time. I have to sit down and rest.
I can’t, you know — I just can’t go like I used to, and that — that’s a hard thing. But again, if you take the step that that’s another journey in my life. Yeah. My family has been my biggest support. I have five daughters, my wife, um, and two little, uh, I don’t know what they are — cavapoo or whatever they call them. They — wait — they get up with me in the morning at five in the morning. My wife is more of a late riser if she’s not working.
So, I have the whole house to myself with my two dogs. We have fun. Um, but yeah, the resting, sitting down. I have, you know — I have my little desktop there. I can sit and relax. And if it gets too — I can’t even go online because it’s too emotional — not emotional, but wearing me out — then I just shut down for a while. And, you know, I — I learned that that’s how I have to live it. And I get by. It’s good.
Shawna: So, Doctor Howard, both Vanita and Bruce have mentioned stress and some of the things that they use to keep stress to a minimum. How do you think, or how have you observed, how stress impacts how somebody’s symptoms might be expressed?
James Howard, MD: Yes. Stress is a — a prime instigator of worsening symptoms. Um, the stress of infection, the stress of, uh, a surgical procedure, the stress of discord among the family unit, uh, even elation.
I remember in my training, uh, a young woman who broke the state shot put record in high school and, within 36 hours, was in the hospital, uh, in myasthenic crisis. And that jubilation was enough to, uh, to tip her over. There is a psycho-neuro-immune pathway, and these are all interrelated to each other.
And so, um, happiness, sadness can modulate our immune system and upregulate dysfunction within the immune system that causes aggravation of myasthenia. Uh, so, it’s very, very common. The theme I heard from all of you is that, one, there is no single way to do it. Uh, that one has to listen to their body. Uh, and by listening to the body, you achieve a — a harmony, uh, that allows you to get through the day. But that’s not going to be consistent day to day. It will change, and one has to adapt to that.
And, in my experience, that becomes very frustrating, uh, for the individual with myasthenia. Why do I have to map my life? Why do I have to plan? I can’t be spontaneous, uh, for fear of A, B, C, D, and E. And that’s the message to us as we try and develop new therapeutics — uh, trying to achieve not only just improvement, but we want sustainability in that improvement. We want this to be long lasting. We want restoration of quality of life.
Um, and there are a number of impacts and quality of life that — that we can get into that, uh, I think no one takes into account from, uh, the scientific and medical communities, but, um, you’re coming across loud and clear. This is why it’s a snowflake disease.
Shawna: Well, and I’d like to dive in a little bit more, Doctor Howard, if your game, um, with that quality of life comment. Um, because, in my experience, some of the providers I’ve had in the past, they treat the symptoms and only the symptoms. And if you’re not going into crisis, then, you know, everything’s hunky dory or good. Um, I’m very blessed.
I have a neurologist with the VA who takes into account my quality of life, and he wants me to live, not just to survive. Right. Where do you think that disconnect is? And how can we, as patients, impart the importance of living and not just surviving? When we’re talking about some of these challenges in our — our treatment plans?
James Howard, MD: Yeah. And so, it’s a critical issue, and it’s — it’s directly related to a healthcare system that is in shambles. Um.
Shawna: I’m sorry — I asked.
James Howard, MD: Asked, uh, clinicians are pushed to metrics that you will see X number of patients, uh, in an hour. You’re a widget. Um, and it’s, uh, churned out, um, and — and that’s not the way we practice medicine. Um, you need to have established a relationship with your clinician. Um, so that he knows you. And as I tell my trainees, I want you to learn something about the individual that has nothing to do with their disease or their health. What are their hobbies? Where do they like to vacation? What about their family? And learn it and talk about it every single time.
And, with time, you develop this rapport such that they will start to take the time. I think it’s important to come into clinic with a list of issues you’d like to be addressed and not let it be free-for-all. Um, they’re pushed for time. When you get to be my age, you don’t care what the administrators say. You know you’re going to spend the time, and you know the next patient may be 30 minutes late. Um, but given the rapport you have, they know that if they were in the seat, you would spend the 30 — extra 30 minutes with them.
Um, and so, you know, there’s the occasional patient that’s upset about it, but many of them recognize that if you’re willing to invest the time, payback comes down the road when it’s your turn. Um, so, being focused, I find it helpful to have somebody accompany the patient who can be ears. Um, because you’re not going to remember everything that’s discussed.
Uh, they may — you may not remember all you want to talk about. And, uh, your — your, uh, person who’s with you will say, hey, well, what about this? This was bothering you before, uh, let’s bring this up in the conversation. Um, but it’s difficult, and it’s — it’s how medicine is practiced today, and it’s an unfortunate situation.
Shawna: Understood. I have my husband, who’s my caregiver through the VA, and he comes with me to all of my appointments. And I can attest that having that second person there — even, as you said, well, you know, you forgot about this, or you had a bad day a week ago, but it was caused by this — has been very helpful when it comes to my team. And I, you know, coming up with a plan.
