00:00:00:00 - 00:00:38:27
Mary Ray
Welcome, everyone. I'm Mary Ray, co-founder of MyMSTeam, the largest and fastest growing social network for people with MS. Personally, I first learned about MS through my mother-in-law, who passed away the year we launched MyMSTeam in 2013. Today, already one in nine people diagnosed with them, as in the United States, is a member.
00:00:38:27 - 00:01:02:26
Mary Ray
Worldwide, MyMSTeam has more than 160,000 members who provide support and advice for each other. If you haven't checked it out yet, please do at MyMSTeam.com. We are very excited to have a full house today. Nearly 800 people have preregistered for tonight's Q&A event. Before we jump in, I want to let everyone know we have a bonus event right after this.,
00:01:02:29 - 00:01:39:05
Mary Ray
a MyMSTeam, Zoom online social, which was originally scheduled for yesterday, but we had to postpone it, and it's immediately following this event. So stay tuned. We'll give you the link after this event, and you'll take that link and go to it directly. Anyone living with or caring for someone with MS should join. It’ll be fun. And speaking of fun, I'm thrilled to welcome back one of my favorite guests who has a great sense of humor, his own YouTube channel with nearly 20,000 subscribers who love his videos, which cover a range of MS topics, and an insightful video and article series on MyMSTeam, Dr. Aaron Boster.
00:01:41:17 - 00:02:00:13
Dr. Boster
Howdy, everyone. Hey Mary, thank you so much for having me back. I've been looking forward to this all week.
Mary Ray
Me too. For those who don't know, Dr. Boster is a neurology specialist focused on MS, and is the president and founder of the Boster Center for Multiple Sclerosis, and a great friend to us here at MyMSTeam.
00:02:00:15 - 00:02:28:13
Mary Ray
Welcome back. Welcome back. It’s March already.
Dr. Boster
Woo!
Mary Ray
Yeah, time’s flying and it means it's MS Awareness Month.
Dr. Boster
Amen to that.
Mary Ray
In the spirit of that, we collected a lot of questions about how to live with MS and deal with some of the cognitive and mobility changes that can happen with MS and that may impact mental health. And as usual, due to high demand, we're going to provide a recording of this live event for those who are missing it.
00:02:28:15 - 00:02:49:13
Mary Ray
And by the way, we're doing another live event in May. So stay tuned for details about that later on in this show. Tonight, we have a lineup of interesting questions. And what we did was we asked preregistered participants to send us questions that they have. Don't worry, I see a lot of people are in chat.
00:02:49:13 - 00:03:11:03
Mary Ray
Don’t worry if you didn't send in a question, don't worry. You have a chance to send in questions through the Q&A Zoom feature throughout. So when you see Q&A in the Zoom feature, that's where you can post your question and we'll try to get those fielded to our conversation here. Please note, this is a special note, that Dr. Boster isn't able to answer specific medical questions in this forum.
00:03:11:05 - 00:03:44:14
Mary Ray
Those should be addressed to your own doctor. Great. So to begin with, I wanted to mention some research that came out of MyMSTeam. That is, 50% of people living with multiple sclerosis will experience some kind or some type of cognitive impairment over time, and among the MyMSTeam members who experience those symptoms, 84% said that those symptoms have a big impact on their ability to work, have a career, attend school or college.
00:03:44:22 - 00:04:07:16
Mary Ray
Some of the questions, we have quite a few questions around this, is there a way to boost cognition? Is there a way to curb brain fog that comes from some cognitive impairment? What kind of tools, what kind of anything is available to people who are interested in improving their brain health, their cognition?
Dr. Boster
So that's a gigantic question, Mary,
00:04:07:16 - 00:04:26:25
Dr. Boster
and it's a really great question for us to start off with. You pointed out the statistics that about 50% of your respondents report that they have cognitive impairment, and I actually think it's quite higher than that. I would say that 50 to 70% of people impacted by MS may have some difficulty with thinking of memory at some point during their lives.
00:04:26:28 - 00:04:41:11
Dr. Boster
Now, for starters, I want to be very clear, this is not like Alzheimer's, dementia. And a lot of times when someone thinks about having trouble with thinking of memory, they think about Alzheimer's. They think they're not going to know who they are and they're not going to know who their loved ones is. And that's very far from the truth.
00:04:41:11 - 00:05:15:14
Dr. Boster
That's not remotely how MS cognition impacts us. MS cognition has everything to do with executive prefrontal functioning, the stuff like in the front of your head. So planning events, multitasking, working under time constraints, working under pressure, remembering things quickly. These are things that can become very, very challenging in the setting of MS. And if you look at the earliest cohort of patients, people that were just diagnosed with CIS, that don't even meet full criteria for MS, and you study their cognition, you can see that it's actually started to become impaired.
00:05:15:14 - 00:05:32:03
Dr. Boster
So this is a very, very important thing for us to be discussing, and even more important for us to be acting on. Now, the way that we address cognition is rather holistic. So oftentimes when I'm talking about cognition, I'll ask someone to pick a number between one through ten, and then I'll list ten things that we can do.
00:05:32:03 - 00:05:58:14
Dr. Boster
So let's just start and we'll try to name ten different things. So the first thing is to take a disease-modifying therapy. So whether you have a progressive form of MS, or a relapsing form of MS, the data is profoundly clear that being on a DMT improves quality of life, improves fatigue, and improves cognition. And so, if you're concerned about your thinking in memory, one of the things that you should consider doing is getting on a DMT. That makes a really, really big difference.
00:05:58:16 - 00:06:19:29
Dr. Boster
Number two, we need to be aware of polypharmacy. What does that mean? Polypharmacy is a doctor word for, gosh darn, you're on a lot of medicines. And in fact, the average person with MS takes seven medicines. So in the United States, the average American, MS patient takes seven medicines, and that's a lot of medicines, and doctors are very good at giving medicines.
00:06:20:06 - 00:06:37:00
Dr. Boster
We're not very good at removing medicines. And sometimes I'll ask someone, why are you on that pill? And they'll say, I don't know. I haven't seen that doctor in 15 years. They just keep refilling it. And so, going through the medication list and trying to remove medicines is critically important. Sharon asked, What is a DMT? I'm sorry, Sharon.
Dr. Boster
It's a disease-modifying therapy to slow the MS down. So take a disease-modifying therapy and make sure you're avoiding polypharmacy, and every time your doc tries to add a medicine, say to her, “Okay, which one can we remove?” or “which can we cut in half?” Number three, we have to be honest and open about drugs and alcohol.
00:06:56:11 - 00:07:16:13
Dr. Boster
So drugs and recreational alcohol can be fun, but they can impair cognition. And so, alcohol can impair cognition. Marijuana can impair cognition. And so, we have to be honest with ourselves. Now, I'm not telling the people listening that they should never ever. I'm simply saying if you're concerned about your cognition, we have to think about that because that's a factor.
00:07:16:15 - 00:07:41:29
Dr. Boster
Number four is getting proper sleep, and right now, you're saying that's silly, but it's not silly actually. Your mom was right in getting a solid 8 hours of sleep and getting proper restored of sleep is key for success in managing thinking and memory. If you imagine how you feel when you miss a night of sleep, and if you had a big business meeting, you might stumble through your words a little bit, or you might forget a point that you were trying to make,
00:07:42:01 - 00:08:00:27
Dr. Boster
and people impacted by MS start their day with less spoons, with less energy than someone else, and so, if they didn't get restorative sleep, they're really, really disadvantaging themselves from a thinking and memory standpoint.
Mary Ray
Can I just interject really quick before we get to number five, just to summarize, because I think there are a couple of things going on here.
00:08:00:29 - 00:08:24:23
Mary Ray
One is this idea of DMT. So, there's being on a disease-modifying treatment, which is very typical if you have MS. And that's not something that one would completely disregard, but two, because it seems sort of, I think folks might sometimes get confused is, well, then take off drugs. It's which drugs that might be impairing your cognition really,
00:08:24:23 - 00:08:57:12
Mary Ray
because if you're taking an average of seven, which ones are really still relevant to where you are today? The other aspect of behavior, drinking, recreational drinking and drugs. Those are things that actually could also tie into, as well as side effects for the polypharma. Point two is: what might impact your sleep? So you had mentioned sleep and I feel like in talking about all these different things, sleep might be a great signal to your system, to your body, to your doctor as to what to look at,
00:08:57:12 - 00:09:14:27
Mary Ray
maybe alcohol, the sugar in the alcohol as it’s processing is keeping you up. Maybe it's, who knows what it could be, but understanding and looking at it, like you said, I just want to reincorporate what you were saying, holistically. We had a question from someone named Cindy who was looking for something like, hey, how about Sudoku? But that's not what we were talking about at this point.
00:09:14:27 - 00:09:35:00
Mary Ray
What we're talking about is a bigger picture of your overall behavior and intake. So let's go to number five. I just want to pause there. And when you're done, I do want to explain the spoons theory that maybe not everyone’s familiar with.
Dr. Boster
Oh, I would be happy for us to talk about that. And, Mary, you've caught what I'm trying to convey, which is this is a net, it's a web.
00:09:35:02 - 00:09:52:08
Dr. Boster
And so, all of these factors are terribly relevant, and in the real world, when we're trying to help someone live their best life despite having MS, we're trying to keep them employed and keep them in the game. I'm not proud. I'll use any means necessary. And so, all of these come to bear. Now, number five, let's do diet.
00:09:52:13 - 00:10:15:00
Dr. Boster
Okay, let's do food. So I find again and again that when people cut out heavily processed foods, sugar-laden foods, fried foods, fast foods, soda pop, believe it or not, they feel better. They sleep better. They have better energy and they think more clearly. And if you don't believe me, I dare you to try it for a month.
00:10:15:03 - 00:10:41:23
Dr. Boster
Avoid all fast food, fried foods, processed foods, and foods with ingredients that you can't pronounce, and you will be shocked at what happens when you eat foods that are real foods. It's phenomenal. So that's number five. Number six, exercise. So exercise is amazing for cognition, It's amazing for mood. It's amazing for balance. I mean, exercise is a medicine, and people impacted by MS that exercise as part of their lifestyle,
00:10:42:00 - 00:11:14:03
Dr. Boster
they maintain brain volume better, longer, and they think more clearly, which is really, really awesome. So what else can we talk about? Let's talk about Sudoku. So we want to keep ourselves intellectually challenged, and oftentimes we find that intellectual challenge in a job environment or something like that, but if that's taken away from you or if you're sequestered at home during a COVID-19 virus pandemic and not around anyone, you may not be adequately intellectually stimulated the way you might otherwise.
00:11:14:03 - 00:11:35:29
Dr. Boster
And so I actually think going to your local store, and when you check out at the supermarket, purchase a couple of those books, Sudoku, if you like numbers, or crosswords or word finds, if you like words, and then put them in all your bathrooms. So when you're spending some time in the bathroom, grab a Sudoku and do a puzzle, and it will stimulate you cognitively.
00:11:36:00 - 00:11:59:02
Dr. Boster
Let me throw out another idea. Take the television and turn it off. Get a book and read it, and then argue with your spouse about it, right? So both of you read the same book and then talk about it. That is an intellectually engaging activity, which can really, really take us very, very far. So what else could we talk about? Managing depression.
00:11:59:05 - 00:12:20:25
Dr. Boster
So MS is a condition that can affect many different aspects of the brain and spinal cord. And in fact, people impacted by MS are twice as likely to be clinically depressed compared to the general population. And there's a term that I want everyone to know called pseudodementia. So pseudo is a Greek word for similar to, but it ain't.
00:12:20:27 - 00:12:43:28
Dr. Boster
Dementia, de means not so good, mentia means think. So dementia means I don't think so good. And pseudodementia is a phenomenon where you truly do not think well, but it's not because of an underlying thinking problem. It's because of your depression. And believe it or not, when you treat the depression, their thinking improves. It's really, really cool to see.
00:12:44:01 - 00:13:06:15
Dr. Boster
Now, I may have some cognitive impairment because I don't remember which number we're on, but I'm guessing it's around sevenish or eightish.
Mary Ray
Yeah, you're about, I think that’s about spot on.
Dr. Boster
All right. So good. So thank you for humoring me. So if we come up with another one, there are medicines that help with cognition. Now, these are prescription medicines that you'll need to get a conversation going with your doctor about,
00:13:06:17 - 00:13:30:09
Dr. Boster
and many of the medicines for Alzheimer's have been studied and do not work in MS. So Aricept and Namenda and these kind of medicines, they have been proven to not be successful in helping MS cognition. Believe it or not, Mary, stimulant medicines, so medicines like Provigil or Nuvigil or Adderall or Ritalin, these medicines, they trick your brain into being more awake, and they allow you to attend better.
00:13:30:12 - 00:13:50:18
Dr. Boster
So when you can attend better, remember I was talking about executive functioning, you can remember better, and I can't tell you how many times I've saved someone's job because I gave them a stimulant and they were able to process. I'll never forget early on in my career, I was taking care of a lawyer who was a partner in a firm. In his words, he was going to be voted off the island.
00:13:50:21 - 00:14:09:24
Dr. Boster
They were going to kick him out of the firm because he would fall asleep while reading a brief, and he couldn't work as a litigator. And we put him on these medicines, and thank God he's still working to this day, which is really cool. So another behavioral technique is you can figure out ways to as tricks and tips to help you.
00:14:09:26 - 00:14:34:23
Dr. Boster
For example, make a list of things you need to do, and then check them off as you do them. For example, place your keys in the same spot every day. These are cognitive tricks that help you get through your day effectively, and I'll just give a quick personal example. I would go through this routine every morning, where I would go to my car, and then I'd run back in the house because I couldn't find my keys, and my family would laugh when I ran around the house trying to find my keys,
00:14:35:00 - 00:14:50:02
Dr. Boster
and then I'd finally find them somewhere, and then I’d get to work late. Then I decided to always put my keys in the same spot, and in fact, if my family sees the keys anywhere else, they put them in the same spot. I still go out to my car without my keys, and I still run back inside, but I know exactly where they are.
00:14:50:08 - 00:15:17:28
Dr. Boster
So I don't know if we hit nine or ten, but let's stop there, and then we can talk about spoon theory maybe.
Mary Ray
Yeah, let's do that. Spoon theory is something that you'll see on MyMSTeam. Members of the community will talk about that. Sometimes they talk about fatigue, but other people who like to use that metaphor of, I'm out of spoons. It's my last spoon, which I think is actually related to all this holistic thinking too, is if you can be mindful of how much is in your tank, that's another way to think about it,
00:15:18:03 - 00:15:49:21
Mary Ray
what you have left and you're not running on fumes, you actually might be able to attend more, but can you go ahead and let everyone know what is spoon theory?
Dr. Boster
I would like to. So first of all, spoon theory was invented by a woman with lupus, which is another autoimmune condition, and she invented this concept to help her friends and family understand how fatigued she was. And spoon theory is 100% appropriate to consider in the setting of MS. So the proverbial spoon is a unit of energy, and when you wake up in the morning, you start the day with as many spoons as you're going to have.
00:15:49:21 - 00:16:05:04
Dr. Boster
So let's say you wake up, Mary, and you've got 50 spoons for the day, and you brush your teeth, and get dressed, and that takes a spoon, and then you get breakfast ready for the family and yourself, and that takes a spoon, and then you pack the car up and drive to work and that takes a spoon, right?
00:16:05:04 - 00:16:22:16
Dr. Boster
So you're using spoons as you go through your day. In the setting of MS, when you wake up, you don't have 50 spoons. You have ten spoons for the whole day, and you may find that by lunch, you've run out of spoons. You have no more energy, and as the day goes on, you literally just (whistles) kind of crash.
00:16:22:19 - 00:16:44:13
Dr. Boster
And so, the concept of spoon theory is very helpful because we can do things to save spoons. We can bank spoons. For example, you might ask your spouse to make the breakfast for everyone, so you can save that spoon, or you may make a breakfast on Sunday, which you can freeze and then thaw and warm up all week long. So you can save spoons,
00:16:44:13 - 00:17:02:21
Dr. Boster
and it's a very helpful concept, not just for the individual, but also to help their families understand what they're grappling with.
Mary Ray
That's great, and this idea of waking up with a set of spoons is always a nice one to have, and I think everyone should kind of take a moment to think about, hmm, how many spoons did I wake up with today?
00:17:02:21 - 00:17:30:06
Mary Ray
And for those of you who are sparing a spoon for this event, thank you so much. I want to move on to this question that many have. Is it possible to reclaim cognitive skills that might have been lost? And if not, at least curb it. You've talked about quite a few things that perhaps could reinvigorate or reenergize people's cognition skills,
00:17:30:14 - 00:17:48:22
Mary Ray
but is there this idea that once it's lost, it's gone? Is there a way to reclaim it? Is there a way to curb it? Can you kind of talk about this way of kind of pulling back and letting go around cognition, and if we have to think about it that way or not?
Dr. Boster
Absolutely. So I don't think it's a one-way street.
00:17:48:25 - 00:18:11:14
Dr. Boster
And it's not as if, if you lose your ability to remember, then that's just too bad for you and you'll never get it again. And the old adage that you can't teach an old dog new tricks is false, right? You can teach people things their whole lives, and I'll give you a great example. Speech pathologists and some occupational therapists have special training called cognitive rehabilitation.
00:18:11:16 - 00:18:34:03
Dr. Boster
So it's like physical therapy for your thinking, and one of the things that I'm very fond of doing when someone is struggling with cognition is I'll send them to get neuropsychometric testing. So neuropsych testing is like the real deal Holyfield of like IQ tests. It's several hours of paper and pencil testing, and it really flushes out the breadth and depth of cognition,
00:18:34:09 - 00:18:56:03
Dr. Boster
and it gets into some very significant details. And what it'll do is it'll show us patterns of deficits. For example, we might learn through neuropsych testing that your auditory memory is awesome. Things that you hear, you got it, you can do fine, but your visual memory is in the toilet. It's doing really poor, and if you read something without hearing it, you're not as likely to remember it.
00:18:56:05 - 00:19:19:10
Dr. Boster
Then you can work with a speech pathologist to practice techniques where you never ever read something without saying it out loud, or when someone presents something to you, they need to show it to you in different formats. And I just use that as an example, but you can retrain cognition. Now, I'm not selling snake oil, like you do speech pathology, and then you win a Nobel Prize, and you’re a Nobel Laureate, but you most certainly can improve.
00:19:19:10 - 00:19:45:08
Dr. Boster
And I've seen it time and time again. One other point, please, exercise helps cognition. So going to the gym and lifting weights or jogging, that actually helps you think more clearly, and you'll see that people's cognitive performance will increase when they're exercising. So we can use both those tools to help up your game.
Mary Ray
You have given us a list of ten things, some of them are ideas and different versions of themselves,
00:19:45:11 - 00:20:07:29
Mary Ray
but really what I'm hearing too, I mean, there's some key, key elements that I am picking up exercise what you put in your body, nutrition, that includes alcohol or recreational drugs, and medications. Some of our members have actually asked about vitamin D or other vitamins for improving symptoms of MS. And you've talked about vitamin D in the past,
00:20:07:29 - 00:20:32:02
Mary Ray
I think D3 specifically. Are supplements helpful?
Dr. Boster
So there's no data or evidence that a given supplement has been proven to improve cognition. Now, that doesn't mean that supplements don't improve cognition. That means there's no study that proves they improve cognition. And if you go to a health food store and you, just for fun, say, hey, I'm having trouble thinking, what do you got for me?
00:20:32:05 - 00:20:49:27
Dr. Boster
They'll pull out a bunch of bottles of various things, and there's a lot of unknowns. I think that we have to be cautious when we do that, and for me, I think it's very appropriate for folks to be taking a multivitamin. If you have MS, I want to make sure that your vitamin D level is above 50,
00:20:49:27 - 00:21:11:03
Dr. Boster
and you're absolutely right, I use D3 to do that, and beyond that, we can get into a discussion where the data is flimsy or nonexistent or anecdotal. And I have many, many patients that, for example, find that taking B12, they think they they're a little sharper, which is great, and it's not going to hurt them to take extra B12,
00:21:11:05 - 00:21:34:08
Dr. Boster
but I also want to caution you that if you're spending an inordinate amount of money at the health food store, you're doing it, and we don't know if it's necessarily working, and so, I just want to throw that out there as a precaution.
Mary Ray
Got it. Going back to exercise, some of the strategies people have been using to stay active during this pandemic have varied greatly.
00:21:34:08 - 00:22:02:22
Mary Ray
And for example, Mary Lou wrote in that she can't attend her PT sessions anymore because of the COVID risk. Do you have suggestions of ways that people can stay active at home to improve their mobility in light of this? I mean, given this discussion and importance of exercise.
Dr. Boster
Yep, absolutely. It's so frustrating that we've spent so much time and energy cultivating systems to win, and COVID took away most of them, right?
00:22:02:23 - 00:22:23:07
Dr. Boster
You can't go to the gym or to the physical therapist right now. So what are some options? So option number one is home health physical therapy, and my clinic has leveraged neurophysical therapy coming into the home very successfully. And so, that's an option. And there are home health agencies throughout the universe, and a lot of them have excellent physical and occupational therapists that can come in the home.
00:22:23:07 - 00:22:44:12
Dr. Boster
So that's one option. Another option is to use a Peloton or like a stationary bike, or an elliptical, or a recumbent bike, or a pedaling machine, or something like this. And it's a way that you can get your groove on in your living room. And by the way, I really think that the exercise equipment needs to be in your living room.
00:22:44:12 - 00:23:04:23
Dr. Boster
Now, it's not very feng shui, but if it's in the upstairs second spare bedroom, all it'll do is hold close. And so, it needs to be in your line of sight at the hour of 9 p.m. when you're decompressing for the day and when you're sitting there staring at the television for a couple of hours and you see out of the corner of your eye the bike, you get on it for a few minutes, maybe during the commercials.
00:23:04:23 - 00:23:25:11
Dr. Boster
And that works really, really well. I've been recommending YouTube yoga to a lot of people, so if you're listening to me right now, you have an Internet connection. And so, if you go to YouTube and type in yoga for MS, you’ll be very surprised at the hundreds and hundreds of really quality videos for all levels of yoga.
00:23:25:12 - 00:23:43:20
Dr. Boster
You'll see some people bouncing on their heads. You'll see other people that are in a wheelchair doing yoga. There's a breadth and depth to it. And so, those are outstanding ways. What else can you do? If you're ambulatory, you can go for a walk. So it's okay to go outside. We don't have to be in our homes. We just need to be away from other people.
00:23:43:22 - 00:24:05:26
Dr. Boster
So going for a walk in your neighborhood, even if you have to wear a mask, is a reasonable way to get some fresh air and some sunlight, and to get some exercise.
Mary Ray
COVID has impacted people with masks, not only physically, but mentally as well. We've touched on that a bit earlier. What types of strategies have you seen successful for people with MS to stay positive?
00:24:05:26 - 00:24:24:27
Mary Ray
I don't know if it needs to be positive, but have a different outlook during the pandemic that actually helps their mental state?. You had mentioned yoga. Sometimes meditation’s mentioned. Do you have other ideas or suggestions for people to kind of get in a frame of mind that makes them feel better about their mental state?
00:24:24:29 - 00:24:44:02
Dr. Boster
Yeah, there's a couple of things that I think are really important. One of them is connecting with other humans. So some of us are very happy to be in our own little microcosm, but a lot of us are social creatures and we really thrive, and we gain something from being around others, and that's been taken away from us. So transparently,
00:24:44:02 - 00:25:07:09
Dr. Boster
MyMSTeam is a fantastic way of connecting with people, and I routinely will recommend to my patients that are struggling and they feel isolated to jump on MyMSTeam at 3 o’clock in the morning because there's a couple of hundred people that are all hanging out talking and this is a great forum exactly for that. So another tool that you can use is you can FaceTime friends and family.
00:25:07:14 - 00:25:27:11
Dr. Boster
So I challenge folks that are listening right now once a week to FaceTime a loved one, and it needs to be a FaceTime. I think you need to see them, not just talk to them on the phone. Look them in the eyes, and then talk about your day for a couple minutes. I think that you'll be surprised at how that fills a void that you didn't even really know that you had.
00:25:27:13 - 00:25:50:17
Dr. Boster
And so, I think those things are very helpful. I think that to live your best life with MS, once a day, you need to practice actively mindfulness or meditation or being in the moment, and an easy way to do that is while you're eating, for example. So just try this the next time you have a meal. Turn the TV off and turn the radio off, and pay attention to who's at the table with you.
00:25:50:19 - 00:26:12:20
Dr. Boster
I mean, this is your most intimate inner circle. And look at them, see them. Look at the food. I mean, think about who made that food for you and how grateful you are that you get to eat it and smell it. Smell the food. Take a moment in and shut up and eat and taste the food, and spend 5 minutes really being present during your meal.
00:26:12:23 - 00:26:44:12
Dr. Boster
It's actually something that Americans don't do enough of, and you can practice doing that. And you'll find that at the end of that 5 minutes, your meal tastes better, and that you have a better outlook on things. So definitely try that out next time you have lunch.
Mary Ray
I love that idea. And the Yale School of Public Health had a couple of studies they had done around gratitude, but also as a health intervention for oneself, being grateful for a few things that happened in the day, big or small.
00:26:44:20 - 00:27:01:06
Mary Ray
You saw a flower, you had dinner, you were able to wake up peacefully, whatever it may be in tracking that. Another thing that school had come up with was this idea of thinking about the future and thinking about it in a more positive way. So how do you think about what's going to happen tomorrow for example?
00:27:01:06 - 00:27:27:10
Mary Ray
Depression, as we know, can be a distortion of what is going to happen in the future and can cause a lot of anxiety. I just want to mention that, and there's more research that everyone can find and search on that front. I did want to bring up a couple more specific questions, circling back to the 10 list around cognition. Marcy is asking, is long-term memory loss attributable to MS, or cognition connected to MS?
00:27:27:13 - 00:27:55:15
Dr. Boster
It can be. And so, people can have difficulties with recall, but it's not like what you see with Alzheimer's. Again, it's not that you can't remember where you grew up. It's oftentimes problems with short-term memory, more than long-term memory. Now, everybody's different, and given an individual may have trouble with that, but more often than not, it's a problem with executive functioning, with recalling something in the now or trying to multitask.
00:27:55:17 - 00:28:18:06
Mary Ray
That's great. And thank you, Jennifer, for being grateful for this event. Some people are expressing some gratitude here, and other people are expressing gratitude for the exercise they're able to do. Unfortunately, Rebecca is sharing that exercise, she's in a catch-22. Exercise kills her spoons. Do you have some suggestions for her when thinking about exercise?
00:28:18:06 - 00:28:46:21
Mary Ray
You know you're exerting energy, but we also know it can help. Have you heard this before? And do you have any ideas for Rebecca?
Dr. Boster
Many times, and Rebecca, you're not by yourself. This is a super, super common problem. And so, we have to divorce ourselves of the high school exercise mentality. So when we're 17, we have a thousand spoons when we wake up, and we don't even need to sleep, we could skip a night of sleep. And in the high school mentality of exercise is, if I can run one mile, then I can run two.
00:28:46:25 - 00:29:08:08
Dr. Boster
And if you can run two, I can run four, but if I stop, then everything's lost. And believe it or not, sometimes we carry that high school exercise mentality into our adult lives, into a life where we have a mortgage and kids that we're trying to get ready for college, and responsibilities, and work, and hobbies. And suddenly, it's really hard to fit it in.
00:29:08:10 - 00:29:30:22
Dr. Boster
And in the setting of MS, we may find that our residual reserves, our functional reserves are way smaller than we realized. So here's the way I want you to think about any form of exercise. If the next day is a normal day, you didn't overdo it. If you can have a normal Tuesday having exercised on Monday, I think we're on the right track.
00:29:30:25 - 00:29:51:06
Dr. Boster
And Rebecca, you may find that your exercise involves walking to the end of the driveway, getting your mail and walking back. In the beginning, that may be the only kind of exercise that you can do, and then the next day still be normal. And that's okay, because what I want you to do is I want you to walk to the driveway, get your mail every day.
00:29:51:09 - 00:30:09:09
Dr. Boster
And after you can do that routinely, and you are convinced beyond a doubt that you can crush it walking to the mailbox and back, I dare you to walk to the mailbox, then walk five more feet, and then walk back. Now, notice what I did, Mary. I didn't say, walk two laps. No, no. I just increased it by a tiny, tiny amount.
00:30:09:12 - 00:30:28:17
Dr. Boster
And all too often, I think that I find people attempt to exercise too quickly, and they try to take on too much, too quickly like they were 17.
Mary Ray
Yeah.
Dr. Boster
And so, we have to slowly ease into it. And if you do it that way, incrementally and very, very slowly, I find that oftentimes people are very successful.
Mary Ray
That's great advice.
00:30:28:17 - 00:30:53:02
Mary Ray
I think that could be applied to anyone, and especially when you feel you feel 18 up here, but your body is letting you know otherwise, listen to your body. We did have a question from Zach. It's a theme that's still here in this pandemic. Zach asks, I know we already discussed vaccination last time. And for those of you who don't know, maybe we can drop a link.
00:30:53:02 - 00:31:19:27
Mary Ray
We have a recording of our COVID vaccine discussion that took place last month, but since there is a new vaccine available to Americans, the Johnson & Johnson one, any different info on that? Any more color that you can add on that front or to the other two, Pfizer and Moderna vaccines?
Dr. Boster
Yes. So I guess my first message is, if somebody offers you a vaccine, say yes, and then get the vaccine, I really, really want you to be vaccinated. Now, which is the best vaccine?
00:31:19:27 - 00:31:40:08
Dr. Boster
It's the one they offer you. So if they offer you Pfizer, say yes. If they offer you Moderna, take it. If they offer you J&J, awesome. The reality, at least in central Ohio, is that we don't get to pick which one we're offered, and we don't really get to pick the timing of when we're offered. And at least here in the great state of Ohio, if you say no, you can literally lose your spot.
00:31:40:10 - 00:32:02:12
Dr. Boster
So for starters, if you're offered, take it. Now, J&J is a fantastic vaccine. It's a different vaccine, but it is safe. And I don't think that there are any concerns. Now, there's a question as to its efficacy as compared to the other vaccines, which I think is a silly argument because it's way, way more efficacious than not taking a vaccine.
00:32:02:15 - 00:32:26:23
Dr. Boster
And so my simple message is just do it. Get your vaccine and save your life. The country of Israel immunized their entire populace. Now, their populace is the size of New York City, but still, they did it. And what they saw was amazing. It decreased hospitalization rates by 80%. So that decreases hospitalization, intubation, ventilation, and death off the table.
00:32:26:28 - 00:32:54:03
Dr. Boster
And I want that for people here. And so, if they offer you J&J, say yes, please.
Mary Ray
Great. So we know, we hear that loud and clear. I would echo that, and still on that same note of COVID, have you seen any side effects in people with MS? I mean, you see thousands of patients. Has anyone you know received a sort of side effect due to the vaccine that you've seen?
00:32:54:06 - 00:33:10:18
Mary Ray
Last time we talked, you knew like at least eight people, I'm sure you know many more now.
Dr. Boster
So I'm in the thick of it, right? I mean, I practice in the real world taking care of real life human beings that are trying to get vaccinated and make the best of things. And some people have been vaccinated and had no problems whatsoever.
00:33:10:18 - 00:33:27:19
Dr. Boster
None. Some people are vaccinated and they have some local reactions or they feel like they got hit by a truck. Very rarely, I've had two patients where it's caused more than just a pseudo attack. So a lot of people have had pseudo attacks, where they have a fever for a day, and while they have a fever, they can't see again, right?
00:33:27:22 - 00:33:47:25
Dr. Boster
That's a pseudo attack, a reemergence of an old symptom that goes away when the fever goes down. Two patients of mine, it's actually triggered an attack. And I thought for a second about not sharing that with you, Mary, because I don't want someone to get scared and run away. I can treat an MS attack. And in these patients, we did treat them and they're doing fine,
00:33:47:27 - 00:34:10:06
Dr. Boster
but COVID can kill you.
Mary Ray
Right.
Dr. Boster
And in both cases, both patients said to me it was worth it. I would do it again. And so, it's not that vaccines have no side effects. They do have side, all things have side effects, but the side effect profile of the vaccines is far superior to dying alone in the ICU with no one around you.
00:34:10:09 - 00:34:31:11
Dr. Boster
And that's the reality of severe COVID.
Mary Ray
It’s stark, but it is the reality. This question I'm not sure you can answer. I'm still going to push it out there because it is on everyone's mind. Once someone is vaccinated, how long until they're protected and can go back to seeing family again or resuming their therapy schedule, kind of getting out there?
00:34:31:14 - 00:34:49:24
Dr. Boster
Those are two separate questions. So the first question is how long until they’re immune until the vaccine works? And then the second question is how long until they can regain? And there are two different answers. And I'll use the Pfizer and the Moderna data just because that's the most commonly used set of vaccines in the United States right now.
00:34:49:26 - 00:35:11:05
Dr. Boster
So when you get the first shot, you start to mount an immunity, and then either four or five weeks later, depending on which shot we're talking about, you get the second shot and that is called a booster, and it boosts your immunity within a week. So basically, a week after your second shot, you have 95 to 99% immunity, both B cells and T cells, which is really awesome.
00:35:11:08 - 00:35:32:21
Dr. Boster
Now, the second question of when you can go back to normal, we are nowhere near going back to normal, Mary. And it would be a gross error in judgment to think differently. So I'll share with you where the rubber meets the road in my life, and at the Boster Center for MS, where we take care of patients with MS, we bring patients in the office only when we have to.
00:35:32:24 - 00:35:49:18
Dr. Boster
So if you're getting an infused medicine, I can't do that at your house. We do it in the office. And if you have a Baclofen pump that I need to refill, you have to come in the office, but otherwise, we try very diligently to keep people away. And we've made the decision to continue that behavior through April. In May,
00:35:49:20 - 00:36:06:19
Dr. Boster
we're going to start to allow patients to enter into the clinic if they have a vaccine card. And so, if they've been vaccinated, they can come in. Now, we're still going to have everyone wear masks because you can't be too safe. We're trying to prevent people from dying. And so, I just want to caution this, I'm vaccinated,
00:36:06:19 - 00:36:25:13
Dr. Boster
and I think that's fantastic. And I'm really, really excited about that. And I wear a mask when I leave my house, and I wear a mask around other people, and that's the right thing to do. My sister and her family wanted to come down from Michigan and visit. I said, not yet. And they said, but we're vaccinated, but my children are not vaccinated, and her children are not vaccinated, and it's not time yet.
00:36:25:13 - 00:36:44:21
Dr. Boster
So we need to be patient, and we need to encourage everyone to get vaccinated. It's not time to rip off the mask and run around in big groups yet. That would be an error.
Mary Ray
And then, I know I know there's different data out there about what number of people must be vaccinated in our population. I've heard various numbers, but I'm not going to put that out there,
00:36:44:21 - 00:37:10:02
Mary Ray
but if you follow the CDC, I would recommend people follow the CDC guidelines and learn more information there. What I'd like to do now is go to our favorite thing during these live webinars, and that's a poll question. In the same vein of COVID vaccinations, have you gotten your COVID vaccination? And you know what? If you've only gotten one of the two shots, I would say that counts as having gotten it.
00:37:10:05 - 00:37:34:00
Mary Ray
Okay? Let’s go ahead and count that as, I've already gotten it, because we're going to presume we're going to go ahead and get that follow-up shot if you if it's not the Johnson & Johnson one. So this is great. Yeah. I have to say that here in San Francisco, there was a bit of a concern because they didn't have enough vaccines, and a lot of frontline workers even weren't able to get their vaccines done.
00:37:34:04 - 00:37:54:19
Mary Ray
And we're talking nurses and doctors. And finally, the operation systems hit, you know, the rubber hit the road, as you were saying. And now, it's like clockwork, and now people are demanding that whatever they're doing to make that queue system work, the DMV should do it too.
(laughing)
Mary Ray
It’s a great system. Super easy. I don't know how I think you were talking about in Ohio,
00:37:54:19 - 00:38:22:07
Mary Ray
it's like a drive through, but here in San Francisco, we have different conference centers where people can line up, and I mean, it's done with such efficiency and kindness and everyone's very respectful.
Dr. Boster
That’s awesome.
Mary Ray
Great, so let's check out the results about where our audience stands with the shots.
Dr. Boster
Yeah.
Mary Ray
Look at that.
Dr. Boster
Woohoo! That’s fantastic.
Mary Ray
47% have already gotten it.
00:38:22:09 - 00:38:47:17
Mary Ray
36% will definitely get it. 9% waiting and seeing, and 7% won't. I want to just pause for a moment because I think when we did this last time, I believe three or 4% of people had already gotten it in January, and I'm not saying this is exact same audience, but this is huge. If you just view it from a sample perspective. For those who won't get it, I am curious what's driving that.
00:38:47:24 - 00:39:06:11
Mary Ray
What would you say to them? We know where you stand, Dr. Boster, but how would you appeal to the 7% here?
Dr. Boster
So what I tell people in clinic is you're an adult and it's your decision whether you're going to get a vaccine. And if you would like to talk to me about it, I would love to talk to you about it.
00:39:06:13 - 00:39:24:08
Dr. Boster
And that's all I say because I'm not your dad or your mom, and I have a very, very strong belief, and I think I have reasons for having that strong belief because I think it's really, really important, but you don't have to share my belief. And at the end of the day, it's your body. And so, I don't force people to do things.
00:39:24:11 - 00:39:53:21
Dr. Boster
What I want to do instead is I want to give an opportunity for an engaged conversation. Now, I might be a little bit more directive with my own family, let's say, but everyone on this line is an adult human and we have to make our own decisions. Now, we could get into a societal discussion, which is kind of where you were going a little bit earlier because we believe that somewhere between 65, 75% of Americans get vaccinated, we can eradicate COVID-19.
00:39:53:23 - 00:40:18:28
Dr. Boster
And I do think it's fair to share that because that's an opportunity to contribute not just for you and your family, but for the greater community. And I've heard some people say, well, I don't need to be vaccinated because I'm healthy, but it's not about you. It's about you passing on to someone else because the replication rate of COVID is three, which means if I get COVID, I'll pass it on to three people before I die or before I clear it.
00:40:19:01 - 00:40:45:06
Dr. Boster
And so that's the concern is asymptomatic transmission. I will remind you that getting vaccinated reduces asymptomatic transmission by 94%. So you can help, even if you don't care about it for yourself because you're tough for something like this. It's still a huge benefit to the people in the population that are at risk, like my patients.
Mary Ray
Right, so when somebody says, I know I'm not going to die from COVID. That's not the point.
00:40:45:14 - 00:41:06:09
Mary Ray
It's not about you feeling confident that you're not going to die. It's the fact that you might get it and pass it on to somebody else who actually might face circumstances.
Dr. Boster
That's exactly right. So I'll share that with them, but at the end of the day, everyone has to make their own decision. At the end of the day, we have to honor that people think differently,
00:41:06:09 - 00:41:32:01
Dr. Boster
and that's okay.
Mary Ray
I want to come back to people's state of mind, perhaps how they perceive how they're doing with MS, how well they're managing their MS. One question we received was really, I thought it was really interesting. It has a couple of turns in this, so I’d love to hear your answer. It was around self-assessment when you have MS. Basically, how well you think you're managing it.
00:41:32:01 - 00:41:54:28
Mary Ray
So Missy wrote that she feels fine. She feels she's doing quite well, but she's getting feedback from those around her that maybe she's not doing so well. And the question is, is there a way, and she's trying to be honest with herself too, is there a way to objectively measure your own existing state, and that could be on various levels, of course, when you have MS?
00:41:55:01 - 00:42:15:17
Dr. Boster
Yes. And so, I first want to reflect on your sense of self is very important because you're a you expert, so you know more about you than any other human being. So you know how your hand feels because you’ve been dealing with the same hand your whole life and your personal assessment of yourself is very, very important and very valid.
00:42:15:19 - 00:42:40:13
Dr. Boster
However, your inner circle, your village, they see you from the outside looking in, and they have a perspective that sometimes you don't have. And so, if they are being honest with you and not just trying to pick on you or gaslight you or something like this, it's very helpful to listen to your spouse or your grandma or your buddy, because they might point something out that you don't actually see.
00:42:40:16 - 00:43:06:08
Dr. Boster
So how do you grapple with that? Well, there's a couple of different things that you can do. I want you to use a team member called your doctor, your neurologist. And this is a conversation which is very appropriate to have with your MS neurologist because I do testing in my clinic. So every time someone comes in, we measure cognition, we measure vision, we measure walking function and hand function at minimum, before we do anything else.
00:43:06:11 - 00:43:30:27
Dr. Boster
And we have them fill out some questionnaires about mood and about energy and some other things. And so, I can go through those with them. Now, I actually have patients that have, on their own, adopted doing some of that testing by themselves, like they purchase a Peg test and once every couple of months, they'll take a Peg test and write down the numbers, or they will fill out a self-survey questionnaire about their mood or something,
00:43:30:27 - 00:43:53:07
Dr. Boster
and they'll track it, which I think is really cool. In fact, there are some apps that have been developed that are supposed to help with that. For example, there's an app called Floodlight, and presently there's it's called Floodlight Open. So it's an open available free app on the app stores and all this. And it's a way you log on and you basically play these games, which measures your hand coordination,
00:43:53:08 - 00:44:15:19
Dr. Boster
your walking agility, your thinking and memory, and it's something that can give you a self-assessment. And so, there are ways to dig in and figure that out.
Mary Ray
Great. And then you had mentioned the Peg test. Is that something that's downloadable too, as a PDF or something?
Dr. Boster
That's actually like a physical like it's a board with pegs and and holes and you move them, and so, it's something that is done routinely in MS centers,
00:44:15:19 - 00:44:38:07
Dr. Boster
but I'm sharing that I have patients that do it at home. In fact, in the mode of virtual health, my wife, who’s an amazing graphic designer, has been working behind the scenes to make cardboard peg tests with an idea that we could mail them to our patients, so that we can test them remotely, but to answer the question directly, yes, there are things that can be done as a self-assessment.
00:44:38:09 - 00:44:58:06
Dr. Boster
Some people make it very simple. They just write down one through ten how they think they're doing. That's actually very accurate way of assessing things, believe it or not.
Mary Ray
Yeah, and actually I think good on you, Missy, for being open to considering that you might have a blind spot. Along the same lines, when would someone know when it's time to ask for help?
00:44:58:06 - 00:45:19:01
Mary Ray
What kind of signs should they be looking for, whether it means hiring a caregiver or asking a family member for more assistance than perhaps they're giving now?
Dr. Boster
I think they have to answer the question about what is important. Is it important to walk without a cane, or is it important not to fall and shatter your hip? So you have to figure out which is more important.
00:45:19:03 - 00:45:43:08
Dr. Boster
And if walking without a cane is more important than falling and shattering your hip, don't walk with a cane, but oftentimes that's not the answer. Oftentimes what's important is safety. And when I see someone using a walker, I see a smart human being that is intelligent enough to realize that without the walker, they're placing themselves at risk, and they don't want to tumble and fall and hurt themselves.
00:45:43:11 - 00:46:12:11
Dr. Boster
So I really think we have to ask what is the goal? Is the goal independence at all costs, or is the goal being successful in the activity? I'll you a quick example. Sometimes someone with MS will need assistance getting dressed in the morning, like they can't do it all by themselves, and so, what's very common is that the spouse ends up helping them. And this over time can become a problem for some couples, where the dynamic of the relationship changes because
00:46:12:18 - 00:46:34:22
Dr. Boster
they're not making love and watching TV together. They're like dressing each, you know what I mean? And so, this is a situation where sometimes it's actually very, very helpful to bring in a home health aide in the morning, so that the spouse can be the spouse, the patient who's the other spouse can be a human being, and then the home health aide helps them get ready, and that can actually save a marriage.
00:46:34:22 - 00:46:55:10
Dr. Boster
And so, I just throw that out as a simple example. You could say, what's more important? Maintaining my marriage or getting dressed? So I think the answer to your question is being very honest with what's actually relevant.
Mary Ray
Understood. That's great. We have so many more questions and we're 10 minutes away from the top of the hour.
00:46:55:10 - 00:47:12:19
Mary Ray
And I really would love to get in some questions that came in through pre-registration. So I'm trying to go through these quickly. I'm going to just let you know, as a heads up, there are about five of these.
Dr. Boster
That’s Mary’s way of saying, Aaron, please give them these answers, and I'm going to do my very best. I promise.
Mary Ray
All right, great.
00:47:12:21 - 00:47:55:09
Mary Ray
So this is from Chauncey. Do you know of any correlation between neurogenic speech problems and MS?
Dr. Boster
Yes. So MS can cause multiple different speech problems. We use the word dysphasia, and there's many different kinds of dysphasia. And so, absolutely, we can see that very commonly.
Mary Ray
And this is from Jose. Does Botox help mobility? Can it?
Dr. Boster
Yes. So if you if your foot curls up when you walk, and so your toes end up hitting the ground and it hurts, you can Botox your feet to relax your toes, and then you can walk normally. If your calf cramps up in spasms, and then you fall to the ground in pain, we can Botox your calf, and then
00:47:55:09 - 00:48:20:25
Dr. Boster
your calf works normally, and it doesn't cramp and spasm. So absolutely, it can help.
Mary Ray
This comes from Susan. It's about anxiety. Can brain changes from MS cause anxiety and affect the autonomic system?
Dr. Boster
100%, yes. So, in fact, just like with depression, people impacted by MS are almost twice as likely to experience anxiety compared to the general population. It's very, very common.
00:48:20:25 - 00:48:40:16
Dr. Boster
I treat it all the time.
Mary Ray
Got it. Well, I do want to call out one thing that, this is just for a little break in questions. I want to give a shout out to James. I think he was trying to one-up me with the DMV comparison. He thinks Chick-fil-A should also run the vaccine distribution through the drive through.
00:48:40:20 - 00:49:11:19
Mary Ray
All right. Good, James. Gina questions this. She's been having a lot of anxiety problems that have gotten worse. The first 20 years she had MS, she was fine, but somehow, and she doesn't say exactly when this is happening, but we obviously are all in a pandemic. We know that the mental health issues have gone up for everybody, but could this be associated with MS having gotten worse for her, a sign of decline?
Dr. Boster
In my experience, generally, no.
00:49:11:21 - 00:49:35:17
Dr. Boster
Now, that's very important question because it'll feel like it is. When your mood is not right, when you're feeling sad, blue and depressed, or when you're super anxious, it feels like the bottom's falling out, and nothing's working, but in my experience, generally, that's not the case. And so, I think it's awesome that she recognizes that, and that is definitely something that your doctor can help you with, for sure.
00:49:35:20 - 00:50:02:08
Mary Ray
Great. A lot of questions we've gotten have involved treatments, new advances in treatments, actually. Are there any treatments in trial now that might help things like myelin repair?
Dr. Boster
Yes, the future is very, very bright. There's a tremendous pipeline in MS, which I'm participating in, and it's very, very exciting. And I'll just share one example as a tickler of sorts.
00:50:02:11 - 00:50:25:00
Dr. Boster
So we're involved at the Boster Center in several trials studying what we call BTK inhibitors. This is Bruton Tyrosine Kinase inhibition, so BTK inhibition, and these are pills that do something really cool. They block B cell communication without murdering B cells, so that's kind of a cool trick that we didn't know how to do before.
00:50:25:00 - 00:50:49:09
Dr. Boster
And they work on a cell line in the brain that's very involved in MS, and we've never been able to get to it, cells called microglia. And so, this therapy looks promising, both in relapsing and in primary progressive MS. And so, there are active, ongoing investigations that we're participating in right now, very, very exciting, and it's kind of a new frontier.
00:50:49:11 - 00:51:15:20
Mary Ray
That's great. I do want to go to one final poll question, but if you wanted to give a quick two sentences on your take of clinical trials. I know we all appreciate everyone that’s ever participated in a clinical trial. We've raised our glass together in cheers to those folks who have participated, but can you, just a couple of sentences, talk about your view on clinical trials and why they're important, and whether or not people should participate in them?
00:51:15:23 - 00:51:42:14
Dr. Boster
Yep, so my uncle had MS, and was in a wheelchair before the first drug came out, and he didn't stand a chance. His disease was way too far gone, and we don't have to ever have that happen again. In fact, today there's 25 FDA-approved disease-modifying therapies, and the reason there are 25 medicines that treat MS, is because human beings with MS volunteered their bodies, their most prized possession to help teach us.
00:51:42:17 - 00:51:59:27
Dr. Boster
And so, if people didn't participate in research, we would not be able to offer anything. And I view it as a critical part of my job to help bring in the new era of therapies. And I could want that all I want, but if people with MS aren't willing to partner with me, I can't realize that goal.
00:51:59:27 - 00:52:35:11
Mary Ray
On that note, let's go ahead and ask our audience here, the next, and I think it's going to be our last poll question for the night. Would you consider participating in a clinical trial? And obviously, thinking about just the COVID vaccine, the trials that had to take place, the number of people that had to participate in those trials, so that it's now safe for the general population. We should be expressing quite a bit of gratitude to those folks who did that, because if they didn't, we wouldn't be where we are right now,
00:52:35:11 - 00:52:58:22
Mary Ray
and a lot of people are volunteering, and it was great that so many wanted to and were turned away. That's how many people are interested in supporting and helping. So I think, we have some folks here in a trial right now. Stephanie's in a trial right now. Great.
Dr. Boster
Thank you, Stephanie.
Mary Ray
Thank you, Stephanie. Let's see, do we have the results?
00:52:58:22 - 00:53:31:00
Mary Ray
What does our audience think about, what do they think about clinical trials? Okay. Actually, so two thirds, two thirds are saying, yes, they would consider participating in a clinical trial. 28%, it depends on the circumstances, and 6%, no. This is great. Well, thank you so much for sharing that with us. I want to see if there's one more question. I'm kind of looking to the team here who are fielding all the great chats.
00:53:31:00 - 00:54:02:08
Mary Ray
There's so many amazing questions flying through here. And I am thrilled to say that, of course, we are going to be hosting other events. There'll be time for more. Let me just share this, in one survey of over 1,000 MyMSTeam members, 64% reported struggling with walking, mobility, or balance, muscle weakness, and it was a major contributor to challenges for themselves and contributed to the progression of their disability in general.
00:54:02:11 - 00:54:27:04
Mary Ray
Does temperature impact mobility for people with MS? And some people say it's even harder in cold weather to move than in warm weather. So that there is the research about, in general, there are probably different reasons why mobility gets impacted and muscle weakness happens. Then there's a separate question about weather. Is there anything you would shed some light on about that?
00:54:27:08 - 00:54:50:21
Dr. Boster
Absolutely. So temperature is a monster in MS, and not every patient has the same problems, but oftentimes people struggle when they're overheated, whether they've heated their body up by exercise, or they're in San Francisco, and it's hot outside or something. And when they get overheated, they can have motor fatigue and heat sensitivity where their muscles become weak in the heat.
00:54:50:23 - 00:55:08:23
Dr. Boster
And when their body cools down, they can function again. Some people have the opposite problem, and they do fine in the heat, but they really struggle in the cold. And when they get cold, their muscles tense up and they have spasticity, and spasms, and cramps and Charlie horses, and stiff limbs and their balance goes to pot, and they can risk falling.
00:55:08:27 - 00:55:28:05
Dr. Boster
And then there are some people that actually have both and I have many, many patients that they struggle. You know, Ohio has four seasons. And so, in the winter they have a set of problems, spasticity and balance. And in the summer, they have a different set of problems, fatigue and endurance. And so, we have to come up with different strategies to make both successful.
00:55:28:08 - 00:55:58:08
Mary Ray
Great. This final question, I keep saying this is the final, but it is the question about age and MS. Do symptoms tend to plateau or subside as people age into their senior years, their troisieme age, as they say, 60 or 70, or is that really an individual thing?
Dr. Boster
So the immune system gets quieter in your seventh and eighth decades of life, but that doesn't mean that your chronic
00:55:58:08 - 00:56:22:03
Dr. Boster
symptoms are necessarily going to be quieter, and you can continue to accrue neurological disability. So I remember my mentor would say, if a patient gets in their seventies or eighties, you might talk about coming off their therapy. And I can tell you that from personal experience that I don't want to do that because it's very rare that a 70 year old has an attack, but they don't bounce back when they do.
00:56:22:05 - 00:56:40:18
Dr. Boster
And so, I think that we have to be vigilant. My opinion is we shouldn't give people medicines after death because they don't work, but as long as they have an immune system which could attack their nervous system, and as long as they have nervous functions they like, like seeing or swallowing or having an orgasm, then I want to maintain that.
00:56:40:21 - 00:57:02:09
Dr. Boster
And so, I want to be vigilant about that, and I don't think that you get a bye because you hit a certain age, unfortunately.
Mary Ray
Well, thank you so much for joining us today, Dr. Boster. We all appreciate your–
Dr. Boster
Thank you for having me. This is fantastic, and I'm so glad I got to talk to everyone tonight.
Mary Ray
I am too. I mean, the energy is so energy is right here. It’s so palpable,
00:57:02:09 - 00:57:28:16
Mary Ray
and your insights about the best ways to confront MS head on and your true, authentic, genuine interest in helping the MS community is here, and we're so glad that you're with us. Everyone, I'm Mary Ray, co-founder of MyMSTeam. Thank you all for being with us today. The information and support doesn't end here. If you are already a member of MyMSTeam, please share the helpful advice you got today from Dr. Boster with other members in the activity feed.
00:57:28:19 - 00:57:50:28
Mary Ray
If you'd like to be a member, go to MyMSTeam.com, and sign up for free. Remember, you're not alone. Hope to see you at the very next event right after this. It’s an online social. I believe there's a link being dropped right now into chat. You see it right there. If you go to that link, there is an online social, so that you can actually meet and chat with the people that you've been seeing posting in this chat field here.
00:57:51:00 - 00:59:11:26
Mary Ray
And remember, May, which is Mental Health Awareness Month, we'll be hosting another event, focus on mental health and MS with none other than Dr. Boster.
Dr. Boster
Yay!
Mary Ray
Thank you so much.
Dr. Boster
I look forward to seeing you all then, guys. Have a safe and wonderful evening. Go get vaccinated.
Multiple sclerosis specialist Dr. Aaron Boster spoke with Mary Ray, co-founder of MyMSTeam, about what people with MS need to know about managing cognition and mobility issues, and how these issues affect mental health. Dr. Boster discussed spoon theory, how to self-assess your mobility and cognition, when it’s time to ask for help, how botox can help with mobility, and many, many more important topics. As an added bonus: Dr. Boster discussed the latest news on COVID-19 vaccines.
To sign up for the next live Q&A and watch past Q&A videos, go to (and bookmark) MyMSTeam’s Live Events Hub.
What MyMSTeam members are saying about Dr. Boster:
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Disclaimer: The information, including but not limited to, information from presenters, text, graphics, images, and other material shared during this event is for informational purposes only. The information is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you heard during this event.
Speakers:
Dr. Aaron Boster, founder of The Boster Center for Multiple Sclerosis, is a board-certified neurologist specializing in multiple sclerosis and related central nervous system inflammatory disorders. He decided to become an MS doctor at age 12, as he watched his uncle Mark suffer from the disease in an era before treatment was available. Dr. Boster grew up in Columbus, Ohio, and attended Oberlin College. He earned his M.D. at the University of Cincinnati College of Medicine and completed an internship in internal medicine and a residency in neurology at the University of Michigan. He then completed a two-year fellowship in clinical neuroimmunology at Wayne State University.
Since then, Dr. Boster has been intimately involved in the care of people impacted by multiple sclerosis. He has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energize, and empower people impacted by MS. He is the creator of more than 350 videos about MS on YouTube. He lives in Columbus, Ohio, with his wife Krissy, son Maxwell, and daughter Betty Mae.
Mary Ray, co-founder and COO of MyHealthTeam, has a deep understanding of consumer behavior and social networking, which has made the company’s mobile and web apps a daily habit for millions facing a chronic health condition. Her innovative vision for digital health solutions has transformed the way people connect with others who share their diagnosis, facilitating unfiltered conversation and accelerating access to trusted information. Recognized for building scalable platforms that drive consumer engagement, Mary was honored as a DTC Innovator and a PM360 ELITE in 2019. She has contributed to Forbes and been quoted in industry publications at the intersection of health and technology. She has spoken at conferences including the DTC Forum on Social Media and Technology, Health Datapalooza and Digital Pharma. Mary is an advocate for women in technology and has served as a SXSW mentor and a speaker at the Stanford Graduate School of Business. She is a graduate of the College of William & Mary School of Business and George Mason University.
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