Welcoming back Dr Aaron Boster, a widely published, board-certified neurologist, giving you the opportunity to ask him your questions about living well with MS.
In this webinar, Overcoming MS community member Regina Beach and Trainee Facilitator Ingrid Adelsberger, talk to Dr Aaron Boster, a widely published, board-certified Neurologist, asking him the community’s questions about living well with MS.
03:42 Managing Primary Progressive MS
06:42 Updates on MS research and BTK Inhibitors
15:00 Subcutaneous Ocrelizumab
19:27 Remyelination drugs
23:28 Simvastatin and Secondary Progressive MS
26:39 Taking part in clinical trials
28:02 Fatigue management and lifestyle recommendations
40:49 Supporting loved ones with MS
45:35 Gadolinium use in MRIs
49:02 B cell depletion therapies and MS progression
52:28 Functional mushrooms and vitamin supplementation
01:02:22 Speaking to friends about the Overcoming MS Program
01:06:37 Possibility of reducing lesions through a healthy lifestyle Program
01:08:51 Driving and managing stress
01:11:36 Sugar
01:12:47 Muscle wastage, physical activity and MS
01:16:20 Neurofilament light chain test
01:19:50 Vision problems with MS
01:21:03 Helping your concentration and focus
01:26:26 Headaches and MS
01:27:30 Medication and ageing
01:29:15 Assistive devices for foot drop
01:30:02 One thing Dr Boster is hopeful for in the future
Dr Aaron Boster
Dr Aaron Boster is award-winning, widely published, and board-certified neurologist specialising in multiple sclerosis (MS) and related CNS inflammatory disorders. Witnessing his uncle’s diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experience informed Dr Boster’s drive to do things differently.
Dr Boster has been intimately involved in the care of people impacted by MS; he has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and has been published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energise and empower people impacted by MS.
Regina Beach
Regina “Gina” Beach is the producer of the Living Well with MS podcast as well as one of the Ambassadors for the Overcoming MS Circle in Wales. She was diagnosed with Relapsing-Remitting MS with incomplete remission in 2021 and has been following the Overcoming MS Program ever since.
Gina teaches virtual accessible yoga and meditation and runs retreats in the UK and abroad.
Ingrid Adelsberger
Ingrid Adelsberger is an Overcoming MS Trainee Facilitator, a volunteer Ambassador for the Overcoming MS Global Circle support group and the editor of the Overcoming Multiple Sclerosis Cookbook.
Her first career in New York was event planning, but her experiences with MS and especially Overcoming MS, focused on the power of lifestyle change, made her want to change careers. She started a course in health coaching in 2016 which led her to complete a master’s degree in health coaching in 2019. Ingrid wanted to apply her newly acquired skills as a health coach, which she did by working independently as well as for a health services company.
Ingrid currently resides in Vienna with her husband and daughter.
Regina Beach 00:00
All right, welcome, welcome. We are going to have a great webinar today. I can see people already coming in from the waiting room. Hello everybody. So nice to see you all amazing, good stuff. All right, settle in. We are in for a real treat tonight. So hello everybody, and welcome to the Living Well with MS Webinar Series. This is part of season five. We’ve been doing this for five years. I can’t believe it. We are so pleased to bring you tonight’s session with Dr Aaron Boster, who, if you’re not familiar, he is an award winning neurologist from the Boster Center for MS in my own home state of Ohio. If you have not met me yet, I am Gina Beach. I am an OMSer. I live with relapsing remitting MS, I’m the Podcast Producer of the Living Well with MS podcast, and I am joining you today from South Wales. In a moment, I’m going to be welcoming Aaron and overcoming. MS trainee facilitator Ingrid Adelsberger to the virtual stage, but before I do, I just want to run through some quick housekeeping to keep everything running as smoothly as possible today. So greetings to all of you watching this on replay in the future. If you’re joining us live, please note that we are recording this session, and you’ll receive a link to access the recording within the next week. And as this is a Zoom webinar, you’ll notice there isn’t audio or a video component for live participants. However, this is definitely still an interactive session. You’ll be able to ask questions using the Q and A tab on your screen. So if you weren’t able to submit a question ahead of time, go ahead and do that now, type whatever you want. We’re going to get to as many of those as possible today. We’re going to start with all the pre submitted questions. Remember that your questions, if you are submitting them now, they should be kept pretty generic, so that everybody can benefit from the answer. Aaron is unfortunately not able to comment on individual circumstances or diagnoses, so if your question is too specific, we’re going to skip over that one. If you do experience any technical problems during this webinar, try exiting your browser and re entering using that exact same link that you got in your email. We recommend using an up to date Chrome browser to access today’s webinar. That seems to work the best. We have tried to make this session as accessible as possible, and today, we are using subtitles, which you may see in the bottom of your screen, and you can toggle these on and off by clicking the CC live transcript option in the Zoom panel. As you exit today, there’s going to be a short survey that pops up automatically. A lot of people might not even realize that it’s a survey, and quickly just X out of it, but please try not to do that. It is really helpful to receive your feedback. So it only takes a minute. If you have a minute, please fill it in. It helps us with planning for future webinars. This session will run for approximately 90 minutes. Please remember that Ingrid and I are not medical experts. We will do our best, but please forgive us if we struggle with any pronunciation. And now, without further ado, I’d like to welcome Aaron to the virtual stage, and I’d like to welcome Ingrid to the virtual stage.
Ingrid Adelsberger 03:47
Aaron, are you ready for your first question?
Dr. Aaron Boster 03:50
Let’s do it. I’m super excited, and thank you guys for having me back.
Ingrid Adelsberger 03:53
Okay, what advice do you have for someone living with Primary Progressive MS who feels like that symptoms are worsening.
Dr. Aaron Boster 04:04
So I think that when we’re trying to manage any MS, but we’ll take Primary Progressive MS. Top of Mind, I like to divide my thoughts into three. Someone with Primary Progressive MS is at risk of having progression of disability, and at least here in the United States, we have FDA approval to use the medicine Ocrevus, which is one of the B cell depleters. And so I’m very fond of placing people impacted by PPMS on a medicine to try to slow things down. And I recognize, as I speak to an international audience, that that’s not ubiquitously available. I think where a lot of times neurologists may may not be as attentive as I would like, is in the second category, which is managing chronic symptoms. And so if you think of Primary Progressive MS as a problem with the spinal cord, that gets worse over time, we oftentimes see difficulties with walking with weakness of the legs in spasticity, tightness of the legs. We can also develop problems with the down there’s with bowel, bladder, bedroom, etc. And these are problems that should not be ignored if you’re noticing that you’re getting worse. I implore you to present to your clinical team, because we have lotions and potions. I joke that I have a pill for every ill, and a lot of times with a comprehensive plan to involve physiotherapy, occupational therapy, rehabilitation, in in the like, we’re able to help you live your very best life and to stave off a lot of those problems. I said there was three in the third category is infrequent in PPMS, but you can have attacks, and so if you’re noticing a precipitous worsening, I want you to present so that you can be worked up. Excellent question. Thank you for asking.
Ingrid Adelsberger 05:47
Okay, so that really means that the more we talk to our doctors, the better care we get.
Dr. Aaron Boster 05:53
You’re a team, and that doctor presumably read books you didn’t read, which doesn’t make them better than you. It just means they read some stuff you didn’t read, and you’re a you expert, because you know more about your body than any anyone else ever could. And so that team comes together. And so you gotta come together to do that. So absolutely reaching out saying, Hey, I’m noticing that I’m falling a lot more often, or I keep tripping and I’m worried I’m going to fall. Hey, I’m having trouble with my swallowing. I’m noticing that there’s a change. Bring this to the clinician’s attention so that they can, in turn, help game out how to make those things better.
Ingrid Adelsberger 06:28
Okay, as we’re talking about Primary Progressive MS, are there any updates on that? And is there anything that we should be hopeful for?
Dr. Aaron Boster 06:37
Yes, I’m fond of saying that if you have to have MS, now’s the best time to have it. And I chose that sentence very carefully because I’m not wishing that upon my worst of enemies. That stated in 2024 as we make this, this recording, there’s so many exciting developments within ms clinical research, and many of them are, are desperately trying to crack the nut of progression of disability. I predict that later on during this conversation, we’ll be talking about some of the recent data that was presented at the actors meeting as it relates to the BTK inhibitors. Now the there was a readout on secondary progressive MS, which not to spoil the lead, but was positive. It was successful. And there’s another trial which I’m very proud to have been participating in, called the Perseus trial, studying PPMS. We plan to get a readout in that in about two months. And I’m very, very hopeful, and I’m very, very encouraged by the SPMs data set. So I’m fingers crossed, toes crossed, that we’re going to see a positive result with this upcoming Perseus readout, there’s a lot of things coming down the pike that are very exciting, and I’m delighted that as an international group of researchers, MS, clinicians and researchers are now shifting their focus to look firmly at progression of disability, brain volume loss, and Trying to re myelinate and trying to create neuro protection. So it’s a very, very exciting time to be involved.
Ingrid Adelsberger 08:07
So it almost sounds like you knew already what the next question will be about, because it’s exactly about those BTK inhibitors.
Dr. Aaron Boster 08:17
BTK inhibitors. Yeah, these are not words that you or I would ever make up.
Ingrid Adelsberger 08:23
The person who submitted that question saw your video on YouTube and they’re asking about Tolebrutiniv and the results what you have mentioned already about the SPMs.
Dr. Aaron Boster 08:36
Llet’s tackle this a little bit. First of all, what is a BTK inhibitor. So the first time I learned about BTK inhibitors, I said to a friend, I said, Oh, you know, I’m studying these BTK inhibitors. And they immediately said, Oh, bind, torture, kill, which scared me. So it turns out there’s an American serial killer that was named the BTK Killer, so that has nothing to do with this whatsoever. BTK stands for brutine tyrosine kinase, and it’s an enzyme inside of certain immune cells, and it’s involved in making the cell function properly and communicate with other cells. BTK inhibitors go into the cell and they bind to that BTK and they block it, they break it so it doesn’t work. So if a cell expresses BTK, and you take a BTK inhibitor, you’re going to jack up that cells function. So which cells express BTK? There’s two predominant cells. One are B cells, and we know that B cells are extremely involved in the pathology of MS. We have several drugs on the market internationally that work on treating B cells, but most of them do it by murder. Most of them kill B cells, which is a very effective way to treat MS at the risk of infections. BTK inhibitors do not kill the B cells, they just prevent the B cell from communicating. So I always imagine, like, la, la, la, I can’t hear you, you know, and so the B cells there, it just can’t interact. And that is a really exciting mechanism of action. There’s a second mechanism of action, and this one, for me, is even more relevant, particularly for progression in MS, and that’s a cell line called microglia. So microglia are part of the innate immune response. See, the immune system is huge, and it’s got two parts, the adaptive part, that’s the B cells and the T cells, and then it’s got the innate part. And to date, with all the different disease modifying therapies currently available, none of them directly work on the innate immune system. BTK inhibitors do. And microglia are innate immune cells that live resident in the brain, and so we’ve known that microglia are involved in MS for a very long time, but we haven’t been able to reach them. These BTK inhibitors not only bind to B cells in the periphery, as I just described a bit ago, but they also cross into the brain and they inactivate or turn off the communication of the microglia. And so mechanistically, you can imagine how exciting it is that we’re bringing two new mechanisms to the table to try to treat MS, and right now there are a host of clinical trials studying BTK inhibitors. So the readout that we got about a month ago, I can’t believe it’s been that long at the ECTRIMS meeting was for two clinical trials, both studying the same BTK inhibitor called tolubrutinib. There was one trial, and we participated in both these trials at the Boster Center for MS. The first trial was called Gemini, and it studied relapsing forms of MS, so people that had relapses. And in the Gemini trial, we gave all the people either got totalbrutinib or they got standard of care, which was abagio, and it was blinded, so they didn’t know which pill they were on, and I didn’t know which pill they were on. And the the strong hope was that that this tolabrutinib would outperform the the active comparator, the abagio, and much to our chagrin, it was a negative trial. Now to talk about that, what does that mean? That means that tolabrutinib was not able to decrease relapses any better than abagio. It did decrease relapses. It did it by about 30% but that’s not better than what abagio could bring to the table. It also was not able to shut down new lesions as as well as aubaggio could, which was very, very disappointing. And so that trial was kind of, well, you know, really made us kind of bummed out. However, one thing that I think is relevant in the Gemini trial is it did seem to slow progression of disability. We did notice a difference there. That was not the primary measure, but people with relapsing MS can have progression, and so it did show this inkling of hope that it could slow progression. Now turn our attention to a second clinical trial that we’ve also participated in at the Boster Center, and this trial also studied tolabrutinib, but this was a trial called Hercules, and Hercules did not study relapsing remitting MS. It studied people that have secondary, progressive MS without relapses. So what does that mean? That means that this is a human being with with multiple sclerosis who has a relapsing form of disease, and they used to have attacks, but they haven’t had an attack, on average in the trial for seven years. So so they have progression of disability, they’re getting worse in their disease without attack. So that’s the people we studied. And in the Hercules trial, we didn’t compare tolabrutinib to a drug, because there’s no drug that’s been proven to be able to do that, and so we were forced to do telebrutinib against placebo. And the primary outcome measure in the Hercules trial was not relapse rate, because these people didn’t have relapses. It was slow in disability, and it was a positive, successful result. We found that, as compared to the placebo arm, the patients that took tolabrutinib were able to slow their disability progression by 31% and that’s highly statistically significant, and it’s also the first time, in my opinion, that we’ve really been able to robustly decrease secondary progressive MS in a setting where there’s no relapses in the background. And so that’s very, very exciting right now. It’s extremely exciting at my center, we’re meeting with these patients, and we’re rolling them over into the long term extensions. And it’s a really, really exciting time. So you can imagine how thrilled I am for a couple months from now, when we get the Perseus data to find out about ppms.
Ingrid Adelsberger 14:54
Okay, that sounds really very positive. So back to you, Gina. Right.
Regina Beach 15:00
Hi, Aaron. So nice to see you again. I was hoping you could share your opinion on the new subcutaneous injections of ocrevus. How was it tested? Did it show to have any effect on progression? Is it the same as the IV, and how is it similar or different to Kesimpta?
Dr. Aaron Boster 15:17
These are great questions. So when a drug manufacturer develops a drug and then it’s approved by governing bodies. So here in the United States, by the FDA, the drug has a life cycle where it’s on patent, and this is a period of time when the manufacturer is allowed to produce it without competition, really, to gain back the money they’ve spent on R and D. It’s very appropriate, in my mind, after a period of time, if there’s no changes to the label, it goes off patent, and then it can become made by other people. Towards the second half of the life cycle, the manufacturer will start to look at new ways of using the drug or new applications for the drug. And one of the two things that Roche, the manufacturer of this medication, Ocrevus did, is they started to test it in children. And so right now, we’re involved in a clinical trial called the Operetta trial, which is looking at young people, meaning children, teenagers or younger who have relapsing MS, and we’re giving them Ocrevus versus Gilenya. And so that’s an ongoing trial with a hope of finding a indication amongst kids. There’s a second trial that was done, and this speaks to this subcutaneous where they changed the formulation, so instead of receiving Ocrelizumab via the vein IV, which is the way that we give it. Now, it’s given subcutaneously. Now, this is not a self shot, like Copaxone or Rebiff or Plegrity or Kesimpta. This is a clinic administered procedure. So you can’t do this at home. You come into a clinic like, an infusion center, and they infused the medicine under the skin. And it’s a quote, 10 minute infusion. Now 10 minutes is a little bit kind of pushing it. They sort of not cheat, but they’ve changed the way it’s given a little bit. So they give oral pre medications, which cuts down on the time that you’re being treated. And the first infusion, the first time you get infused, it’s gonna take about an hour and a half. But then subsequent infusions, it can take an hour from start to finish. Now we infuse Ocrevus IV over two and a half hours. I use the rapid protocol, which I was very honored to help participate in development of and I think most places, at least, were, I’m familiar, give Ocrevus over two and a half hours so the subcutaneous would cut an hour and a half off that time. Some of the patients who participated in the clinical trials found the infusion of the fluid under their skin to be uncomfortable, and they didn’t like it as much. But that wasn’t ubiquitously the case, and right now here in the United States, it’s a very interesting time. It’s now been approved. I haven’t seen a big uptick. I certainly have patients that are asking questions about it. As a clinician practicing MS neurology and giving people medicines like Ocrevus, if someone is tolerating what they’re on. I’m not really rushing to switch them, but I do think over the next course of the year, we’re going to start to find where it seems more appropriate or most appropriate to experiment. I don’t mean experiment like we’re doing a research project. I mean the human being. And I will decide, hey, let’s try to do it this way. And it’s very early.
Regina Beach 18:41
If they want to go back to IV, will they be able to?
Dr. Aaron Boster 18:45
That will be decided, at least in the United States, in part, by what the insurance company will cover, but it’s intended to be a decision between the clinician and the patient, so that should be okay. In speaking with the manufacturer, they’ve made efforts to make sure that it’s parody, so they’re not going to try to force someone’s hand that they have to do the new fangled sub Qor the old school infusion. It really should be left up between the clinician and the patient, and so we’ll see how this plays out over the next year.
Regina Beach 19:16
Cool, yeah, that’s an exciting place to watch.
Dr. Aaron Boster 19:22
More options are always better. The ore options we bring to the table. That’s just always a good thing.
Regina Beach 19:28
Yeah, do you know anything about the results for the remyelination drug trials on Metformin and Clementine? Where is that at and if and when a remyelination drug does come to market do you think, will that stop further demyelination, or is it the kind of thing where it will only fix what’s already been damaged? What’s your knowledge of that?
Dr. Aaron Boster 19:52
**So the concept of remyelination sounds magical. We get out of Harry Potter magic wand. We expel the arm. Most and then we do something, and we just put the plastic coating back on the wire. You just put it back on, and now everything’s fine. And the reality is that the science required to do that we haven’t been able to achieve just yet. It’s actually very, very hard. The way that babies and young people myelinate is fascinating. So, so in development, in utero, and then during your first many years of life, you over myelinate, like way too much, and then you prune down. And the problem is, if you turn on a myelin progenitor cell, you then have to control so it doesn’t do too much. So as you can imagine, it becomes very, very tricky. Now, there are some hopefuls out there like clemastin that you just mentioned and metformin that you just mentioned, and I don’t but suffice to say that it’s not prime time just yet. Interestingly, clemastin is available. It’s a antihistamine, and I’ve had some patients that have said, Hey, can you just prescribe it for me, which I have done, and most of them have opted to stop the medicine because it’s profoundly sedating. Metformin is used ubiquitously here in the United States for various types of type two diabetes, and scientifically, there’s a rationale that it might actually help with Ms. It creates this fasting state, kind of metabolically in the body, and that may have some really, really wonderful things related to MS, and in particular, possible remyelination. The way I think about it today, as we have this conversation in October of 24 is I want to keep my patient in as good a ship shape as possible. So when that is available, they can benefit from it. So adhering to a lifestyle, and I think an excellent lifestyle example would be OMS with the seven tenants, but adhering to a healthy lifestyle, and in my opinion, taking the most effective DMT that you’re comfortable with at present are all mechanisms to help you be able to receive that medicine when it’s finally available? So it’s a very, very exciting area, but we just we haven’t hit it just yet. Fingers crossed, and stay tuned, because we keep trying.
Regina Beach 22:14
Yeah, and hopefully eventually something will stick and we’ll be able to say, okay, we can bring this new drug to the table, which hopefully changed lots of people’s lives, and
Dr. Aaron Boster 22:24
100% if I make one last comment when I think about a hypothetical cure for Ms. So I just so we cannot do that. But a hypothetical cure, like, what would we need to do immunologically? I really think there’s three things that we need to do, and right now we can do like one. So one thing that we would need to do is to create a neuroprotective agent to help slow the accelerated brain volume loss, sort of the smoldering ms that’s become a popular topic to discuss, and that’s works in progress. The second thing would be a remyelinating agent like we just discussed, with the goal of repairing the damaged wires and putting the plastic coating back on. And the third thing we can do, which is a potent anti inflammatory medicine to decrease the new bouts of focal inflammation, contrast enhancing lesions, relapses, etc. And so it is. It’s in my mind that we will find a three separate therapies all used in conjunction to ultimately achieve a cure.
Regina Beach 23:28
So speaking of the idea of brain atrophy, what can you tell us about the phase three trials on symbastatin and people with secondary progressive MS? Do you Oh, so,
Dr. Aaron Boster 23:42
this is the stat two trial. Yeah, so, so when I was a resident in training, so full head of hair, no, no gray. You know, long time ago, I remember when one of the first papers came out, which looked at the mouse model of multiple sclerosis, which is called the EAE model. And we’ll take a mouse model of ms, and then we test things. We test different medicines and whatnot. And I found this paper where they tested high dose simvastatin in the mouse model, and it cured the mouse model of Ms. And I literally printed the paper out. And I ran to one of my attendings, who was the MS attending, and I said, Ooh, can we please put adults with MS on simvastatin? And he kind of chuckled. He said, Well, Aaron, why don’t we wait until it’s tested in humans, which was very wise. And subsequent to that, there’s been a couple small trials with mixed results. And so a few years back, there was a really large trial looking at Progressive MS and looking at the use of syndistatin, which is a statin medicine. It’s actually statin medicine that I take for high cholesterol, but it’s not being used for cholesterol lowering. It’s being used because Statins have anti inflammatory properties. And in this stat ms trial, they were looking not at relapses and not at progression, but at brain volume. And what they found was really. Striking that it appeared in this one trial that it could slow brain volume loss by just putting someone on a statin. And so the next phase of this evolution of research was just reported out on the stat two trial, and in the stat two trial, this time, they were giving people statin or placebo with a goal of slowing disability, right? So, so that’s reaching for a very important clinical outcome. And it was a very big trial, 900 some patients, being a very large multiple centers, and ran over three years. So a very properly executed trial, and much to my chagrin, both the placebo arm and the statin arm had the same progression of disability, and so it was kind of a negative trial, you know. And that’s a that’s a bummer, but a couple things that I want to say. Number one, I want to thank all of the hundreds and hundreds of humans with MS that volunteered their bodies to help us figure this out. That’s a really big deal. And if people impacted by Ms weren’t willing to fight back by participating in trials, we’d never have any drugs. And so I just want to say thank you for that. The second thing is, it’s important that we keep trying. We’re going to crack this nut eventually, and this is how we’re going to do it. We’re going to keep pushing and pushing, and one day we’ll break the door down.
Regina Beach 26:25
Yeah, and so people should still be, you know, on their MS registry, and talking to their clinician about ways they can get involved if they’re interested, because there’s loads of research going on right now, and even negative trials get us closer to knowing what can work or what will work,
Dr. Aaron Boster 26:39
that’s exactly right. Oftentimes, if you talk to a scientist, they’ll say that a negative result is more informative than a positive result because it takes them down a different pathway, and there’s lots of different ways to participate. So for example, I have patients who, for various reasons, are not eligible for the kind of trials you and I are discussing these clinical trials with placebo or blinded arms, etc, but they can all participate in registries. And so by participating in a registry that is such a powerful and profound way of contributing, where, oftentimes, each time the patient comes to our clinic, for example, we record certain information and archive it, and we have an ongoing registry of our patients to look for trends. And we don’t do that in isolation. Our clinic participates in a very large project with lots of different clinics from around the United States, so that we can pull the data and look for trends and look for look for directions, for movement, very, very exciting times. And so absolutely, if you’re listening to this right now and you’re impacted by MS, or someone you love is impacted by MS, have a conversation with a clinician about a possible opportunity for trials.
Regina Beach 27:45
Yeah, I know. I fill out my quarterly survey for the MS UK registry, and I, you know, just my little drop in the bucket to help the research move forward. So thank you so much. Aaron, not a little
Dr. Aaron Boster 27:55
drop. It’s a big drop. It’s very, very important. So thank you for doing that. Very welcome. I’m
Regina Beach 28:00
going to pass you back over to Ingrid for the next few questions. Okay,
Ingrid Adelsberger 28:04
so we’re going to shift a little bit talking about fatigue. And if I read correctly, about 80% of people have fatigue. So maybe something that a lot of people would want to hear. That answer that you have, would you recommend any medication or supplement for fatigue? And are there also other ways to treat it?
Dr. Aaron Boster 28:22
Yes. So fatigue, as you point out, is the single most common symptom in multiple sclerosis, all age groups, all phenotypes. It’s the number one symptom, and at least in the United States, it’s the leading cause of loss of work amongst people with multiple sclerosis. So it people don’t leave work necessarily because they have difficulties with walking. They leave work because they can’t stay awake or they can’t process and perform their tasks. And yet, fatigue is invisible. It’s exceedingly frustrating for many of my patients, at least here in the United States, when you say to someone, Oh man, I’m tired. They say, Yeah, me too. Almost like, hi, yeah, how are you? I’m good. Me too, without even like hearing the person, Yay, I’m also tired. And when I try to help a spouse understand what their loved one is experiencing, here’s the best I’ve come up with. If you went to work on Monday, and then came home and had dinner with your family. And then after you have dinner, don’t go to bed. Watch my YouTube channel. Watch watch YouTube all night long. Don’t sleep at all. The next morning, take a shower if you choose, and then go to work on Tuesday and work all day Tuesday come home Tuesday night, and after you have dinner Tuesday night, you and I will go for a walk, and on the walk, we’ll talk about fatigue, because that’s the closest I’ve come to trying to encapsulate what my patients share with me, the profound nature of pathologic fatigue where they’re desperately trying just to kind of stay awake, let alone trying to take in the information they’re being given. Now the good news. Is fatigue is exceedingly treatable. We can treat fatigue, and actually we can treat fatigue with a lot of success. So just for the sake of discussion, let’s pick 10 things that we can do to treat fatigue, and I promise to end with a couple medications. Because when you’re treating a symptom, it’s not an or like you take a medicine, or you change your lifestyle, it’s an and it’s a Let’s do everything that we can to help you live your best life. So 10 things, so keep me honest here. Number one is improving sleep. Now don’t poopoo that a lot of red blooded Americans at least sleep like crud. And we go to bed at midnight or one o’clock, and then we wake up at six to go to work, and we got up four times the middle of the night to pee, and we are completely exhausted. And in the setting of multiple sclerosis, if you don’t get restorative sleep, you’re literally cutting yourself off of the knees before you even start your day. So addressing frequent urination at night, called nocturia, addressing spasticity and pain, addressing insomnia, really helping optimize sleep hygiene is a critical step towards improving sleep. If you have sleep apnea and you snore and it’s not being treated, nothing I do is going to reverse that, but getting you to the sleep doctor and finding a CPAP mask that works, can be life changing. So that’s number one. Number two is to clean up your diet. And a lot of times when I say that, my patient will kind of roll their eyes, but I double dog dare you to remove sugar from your diet for one month. I dare you, invariably, if you take my challenge, you’ll search me out online and say, Dr B, wow, because it is remarkable how sugar creates worsens fatigue. I literally, as I’ve been practicing medicine now for two decades, have grown to feel like sugar’s a poison, and the more we cut sugars out of our diet, and that includes all the nasty ones that you see in American foods like high fructose corn syrup, for example, getting that stuff out of your diet is instrumental in helping with fatigue. And if you want to kick it up a notch, you can really start to look at food quality and avoid heavily processed foods, fried foods, fast foods, diet foods, and any food that has an ingredient that you can’t pronounce, because that’s not a food. That’s a chemical, and I don’t want you to eat that. I’m sorry. My cat’s tail just bopped into the screen. So that’s number two. Number three is to exercise. And a lot of people say, Are you crazy? Did you just hear me tell you how exhausted I am? But here’s the kicker, exercise is an underappreciated disease modifying therapy. It actually slows down, MS, but it also is instrumental in helping with energy levels. Now I’m not asking you to become an MMA fighter or climb a mountain. I’m asking you to go for a walk after dinner. I’m asking you to insert movement into your life, right? Number four, I’ve got to keep track here. Number four is to treat depression, because depression is exceedingly common in multiple sclerosis. And if you suffer from depression untreated, it can worsen fatigue. Those two things are tied together with a rope. And if the depression gets worse, the fatigue gets worse. But if the depression gets better, the fatigue gets better. And so we can literally game out helping your energy levels by working on depression. Number What are we on five? Number five is to remove unnecessary medicines, something that we call polypharmacy. Now, polypharmacy is defined as being on five or more drugs, and the average American MS patient is on seven or more drugs. And so by definition, they have polypharmacy. And the problem here is with very, very good intentions. Doctors will prescribe a medicine here. Try this, honey. Okay, take this one. But we’re not very good at removing medicines. We need to do a better job of removing medicines. And some of the medicines that we prescribe for pain, for spasticity, for bladder, they can cause fatigue, and so removing medicines that we don’t need is a great way of helping help someone be more awake and alert. Number six, I’m going to throw in our first medicine, and that’s to take a disease modifying therapy, any disease modifying therapy. Why? Because, invariably, when you look at the clinical trials data, and they look at not primary or secondary outcomes, but when they start to look at like Patient Reported stuff. Invariably, the patients that were on DMT demonstrated an improved fatigue as compared to the people that were on placebo. And so that’s an absolutely wonderful reason to consider taking something now. What number am I on? Seven? Oh, yay. Okay, good. I’m working on my counting. So, so number seven, let’s start to talk about supplements. And so one supplement that I want you not to ignore is protein. So protein is not really a supplement. Protein is a macromolecule, but having low, low protein can contribute to. To being fatigued. And so making sure that you’re getting adequate protein in your diet is not to be taken for granted. We’re trying to get one gram of protein for every kilo of body weight, or for 2.2 pounds of body weight. And so you can do some quick math in your head and say, oh my goodness gracious, I’m not getting adequate protein. I find that when my patients up their protein intake, it actually can help with their energy levels. Now, as far as supplements go, I am very fond of the data supporting Levo carnitine. Now this is number eight for those that are counting at home. Levocarnitine, or L carnitor is an amino acid, right? So it’s one of the building blocks of protein or steak, and levocarnitine, one gram twice a day has been shown to help with MS fatigue. In fact, it was pitted head to head against an old MS fatigue medicine called amantadine, and it did better than amantadine. And so I’m very fond of prescribing Levo carnitine twice a day for people that are fatigued. Another supplement which helps some people, is a B complex. So if you are B 12 deficient, supplementing B 12 can help you significantly with energy levels. And in fact, every B vitamin except folate, is involved in energy production in the body. And so I oftentimes will encourage my patient to take a B complex, which gives you all the wonderful bees, the B, 136, 12, etc. Are we on nine or 10?
Ingrid Adelsberger 36:29
You mentioned eight? Okay,
Dr. Aaron Boster 36:31
so we’re going to do nine now. And I’m going to finish with two medicines, two medicines that I use very, very frequently to help fatigue. And they are game changers. The first one is called Modafinil. Here in the United States, the trade name is pro vigil, and there’s a cousin called R Modafinil. And the trade name the United States is new vigil. And these are medicines that they give airline pilots when they fly from Great Britain over the United States to keep them alert and awake. And these medicines are remarkable in tricking the brain and to be more alert and awake. And it helps with two things. It helps with fatigue and it also helps with cog fog, because it improves attention. And this is a medicine that I use very, very frequently. A couple tricks and tips is the biggest trick is to not take it every single day. If you take Provigil every single day. After a couple months, it can wear off your body tolerizes to it, and then it’s not as effective, and then we have to take weeks and weeks off to reset all the receptors. Yeah. So instead, I recommend that patients take a lazy Sunday, lazy Saturday, lazy Wednesday, take one or two days off a week, and it will reset itself. Now, number 10 is another medicine which I also use very frequently, and it’s the amphetamine salts. So these are things in the United States like Ritalin and Adderall and medicines like that. These are amphetamine salts, and they are very, very helpful, just like with Provigil, in assisting people with energy Provigil, by the way, messes with birth control. And so if you are a woman taking birth control to prevent an unplanned pregnancy, and you have MS and fatigue, we’re not going to go with the Provigil. We’re going to go with the Adderall. And the same trick with Adderall is you don’t want to take it every single day, because you’ll tolerize to it. And so taking drug holidays each week is key. So there are 10 examples of things that we can do to treat fatigue. Some of them were medicines. Some of them were supplements. A lot of them had to do with diet. And of course, we talked about exercise in sleep hygiene.
Ingrid Adelsberger 38:37
Okay, that’s really great to know, because so many people have fatigue, and there are so many things that you can do. So thank you for that. So now the next question is about what treatments options you would give to somebody that has has been recommended a bunch of disease modifying drugs over the years, but due to pregnancy or breastfeeding, they have waited. So what kind of treatment would you give them? So what is the first
Dr. Aaron Boster 39:05
thing I would say is, I don’t have enough information to really weigh in with any authorita. What I’m hearing is this is someone who’s had MS for a while, and because of family planning, haven’t gotten on a medicine yet, and so now they’re looking at medicines. I’m very fond of saying I want to put you on the most effective disease modifying therapy that you’re comfortable taking, and that’s a very carefully crafted sentence. I personally vehemently disagree with the escalation model of ms, and I’m delighted that there’s no research that’s starting to prove that point, that starting on the most effective agent is a lot better long term than starting on something of low efficacy and then seeing how it goes and escalating later. So I want to put you on the most effective drug that you’re okay taking. The second part of the sentence is very important, also because I’m not the one taking it, and so you have to feel comfortable with the thing that I’m giving you. So. And typically, when I have a patient in clinic, and this is the conversation we’re having, or we’re going to start a medicine, I go to the whiteboard, and I will write up in my order of preference, of efficacy, the first, second, third and fourth options that I want to talk about. And I start with the first one, which is, in my opinion, the most effective drug that they’re eligible for. And then we talk about it. We talk about the good, the bad, the ugly. And if they say, Okay, let’s do that, then that’s what we start. And if they say, I don’t want to do that, I downgrade my option to something that I still think is really good, but maybe not as good. And then we talk about that. And then we’ll go to option three And option four. If they get to option four and they don’t like it, I tell them to think about it, and I go get a cup of coffee. And then we start over. But I can’t give more specifics right now because I lack enough information to say anything further.
Ingrid Adelsberger 40:49
Okay, thank you. And what is your personal and professional opinion? How can we support if we don’t have MS, but our loved one has MS? That’s
Dr. Aaron Boster 41:01
a beautiful question. One of the seven tenets of overcoming ms that I’m very fond of doesn’t get enough cred, and that’s the incorporation of the family. Because you don’t have MS by yourself. You have MS with your village, right? You don’t get to do this by yourself, and oftentimes loved ones are scared for you, and they feel powerless. They don’t know what to do. There’s a really striking survey that I think about often, and it was, it was called versus Ms. It was a kind of a survey that looked at the soft underbelly of ms, asking some 1500 some people with MS and about 500 care partners, all these questions, and what they discovered was really striking. Two thirds of care partners, so your spouse in bed with you at night is scared to death about your progression, and they’re not bringing it up because they don’t want to upset you. Two thirds of the people with MS were scared of their progression, and they didn’t want to tell their spouse because they didn’t want to upset them. So now you have two people wearing their 90s and their night caps, and they’re in bed together, and they’re both terrified of the exact same thing, and they’re not talking to one another, and that’s travesty. So my first suggestion is to sit down at the proverbial kitchen table and say, Hey, I love you and I’m scared and I don’t know what to do. Just be honest with them about your own fears. I’m watching you fall, and I don’t want you to fall. I noticed that you have trouble, and I don’t know if I should help sharing with the person with MS that you love them and that you care about them and you want to know what you can do is a really, really great way to start. And oftentimes, when families do that, it opens up a floodgate of information and knowledge, and it culminates in them having a better relationship and being able to support each other better. So that’s one thing you can do. The second thing that I want you to keep in mind, if you are a loved one of someone impacted by MS, is they’re not lying or making something up. Most of the MS symptoms that we struggle with are invisible to the outside observer. So we just talked about fatigue. I also share that depression is extremely common. Cog Fauci is extremely common. Pain is extremely common in MS, bladder dysfunction, bowel dysfunction, sexual all of these things are invisible to the outside observer, and yet the person is experiencing them. So please, please do not fall prey to calling shenanigans saying, Oh, I don’t, I don’t believe you. You’re just saying that to get out of doing a work, or you’re saying that for some other reason, please believe the human being that they don’t want to have bladder incontinence, for the love of God, they don’t want to have difficulties remembering things, and so when they tell you they’re having trouble, just take them at their word. Another thing that you can do is you can accompany your loved one when they go to see their clinicians, going to see the MS neurologist, is sometimes kind of scary and it can be overwhelming. It’s not uncommon that when folks come to the Boston Center for MS, they may travel hours to get there by car or sometimes by plane, and they’re really tired when they get there, and then they had to go through Columbus traffic, which would scare most humans, and they get to the office, and what do we do? We literally torture them. We make them do the nine hole ped test, and then we make them do the matching test, and we make them do the walking test, and we do all these poking and prodding. We have them fill out all these papers, and we kind of highlight the MS. And then they find themselves in the room with the neurologist and and they don’t have lots and lots of time. Maybe we’re only going to spend a half an hour together, and the neurologist is I’m pelting them with questions, and it can be very, very overwhelming. So when you bring a loved one, they’re an extra set of ears. They can listen with you. They can take notes for you, so that you don’t have to. Try to talk to the neurologist and take notes, and they can be an advocate and say, before we leave, remember, you wanted to ask the doctor about your fatigue, and it’s a powerful, powerful way of helping that person with MS, ensure that they are heard and ensure that their concerns are addressed. Because what can happen in that crazy, whirlwind of a clinic visit is you get back in your car and say, wait, I forgot to ask about the sexual dysfunction, and now you’re relegated not to see the neurologist again for quite some time. So so those are all ways that I think a loved one can really help someone impacted by Ms live their best life.
Ingrid Adelsberger 45:41
Yeah, thank you. Reminds me of some sometimes I visited my neurologist. So back to you. Gina,
Regina Beach 45:50
great is gadolinium, which is the dye used in MRIs, harmful to the brain and kidneys. And where should we definitely have this. And when can we skip
Dr. Aaron Boster 46:01
it? Yeah, so this is a very, very contentious, heated topic, and people get very emotional about this topic. So there’s a high likelihood that I’m going to piss off some people with my answer, but I’m going to give you my honest answer. When you are trying to diagnose somebody with multiple sclerosis, we have increasingly benefited from the MRI technology to make the diagnosis more accurate and to make it faster. So those are really big deals. And excuse me, when you diagnose someone with MS and you order MRIs of this and this and this having contrast at that time, I think is absolutely critical. I think it’s absolutely critical because the presence of enhancing lesions can confirm a diagnosis when otherwise you may not have it. So that’s a situation where, in my opinion, I think it’s critically important. Now, after you’re given an MS diagnosis, if the clinical team is then getting serial MRIs on you like, for example, standard practice at the Boston Center is to do an MRI of the brain once a year, and I like to do an MRI of the cervical spine every couple years. And it used to be ubiquitous that we always ordered contrast, and it’s fallen a little bit about a favor here in the United States. And here’s what I tell my patients, if you allow me to get contrast, I learn more information. I would submit about 20% more. And I made up that number, 20% I don’t have a study, but just in my looking at MRIs, you know, 20 sometimes a day, I learn more when I have the contrast available to me. But if you don’t want the contrast for whatever reason, well then don’t get it. I still benefit from the MRI. We can still learn a lot of information, and there’s a very small amount of stuff we might miss, but it’s not worth a battle royale or what have you to sort out if it’s okay or not. And so that’s how I practice. I still prefer to get contrast if I’m able to and if we and if the patient is uncomfortable, then we don’t do it. Now the first part of your question is critically important, does contrast damage your kidneys? Does contrast hurt the brain? So there’s different kind of contrast molecules. One contrast molecule is they’re called linear gadolinium molecules, and those are bad. So linear molecules can be sequestered in various parts of the body, including the brain. And I don’t ever recommend that someone gets a linear contrast molecule, gadolinium molecule. There’s another kind of contrast or gadolinium, called macro cyclic molecules. So cyclic like a circle. So macro cyclic molecules are not sequestered in the brain, and I’m not worried about them whether or not the person is going to have problems based on kidney can be determined a priori by looking at their kidney function. And so it’s appropriate to look at kidney function before you give someone an MRI with contrast to make sure that their kidneys can handle it. And if they have normal kidney function, I’m not worried about their ability to clear that. Now I want to be clear I’m not getting labs to prepare for an MRI, but we get labs several times a year, and I can look at them and say, okay, look, a month ago, your kidneys were gorgeous. Let’s giddy up. So that’s my opinion about contrast.
Regina Beach 49:15
Great, yeah, and that’s in line with what my neurologist did. I had one for undiagnosis, but now I just have, I don’t know, contrast anymore, because they are just comparing to the previous MRI. So can totally different topic. Can B cell depletion therapies prevent ms progression, or do they add to it? Some people in the audience have noticed that their walking has decreased in speed, or their gait has changed since being on ocrevus. So
Dr. Aaron Boster 49:44
let’s use a little clinical data to answer the question. And I want to cite an old trial now I can’t believe it’s old, but it is called the oratorio trial. So the oratorio trial was the clinical trial that led to the FDA and ultimately the EMA approval of. Okrav for Primary Progressive MS. And I use this example because these are people that really don’t have a tax to speak of, and they have progressive disability. And in the oratorio trial, we gave half the population in the trial okravis and the other half got dummy drug right. And I participated in this trial years back, and at the end of the trial, we could look at the group that was treated with okravis and the group that was treated group that was treated with placebo, and it was a two year trial, and what we found was we were able to decrease disability progression over two years by 25% 24% so a quarter both groups got worse. The people on okravis got worse, but they got less worse than the people that were on placebo. So So knowing that, we know that if we then apply okravis to someone else with ppms, we can have the same expectations. However, unless we can clone you, and we’d have to get permission from like the government and your family and all these other rigmarole but let’s pretend we could clone you, all right. And then we gave one of you okravis In this example, and one of you a hug, and we got back together. In a couple years, I could prove to you that the version of you that got okravis, even though you had progressed, progressed less than the other version of you. Now very likely we’re not going to be able to clone you, to prove that. And you can imagine now someone is living with MS, and they were gonna have some progression of disability. It’s my opinion, based on that data, that they were gonna have worse progression if they hadn’t been on therapy. I do not believe that B cell depleters worsen ms at all. On the contrary, I think that they can slow progression. They just don’t do it enough. So we’re not, you know, it’s good, but it’s not great. And hence the desire to continue to keep on, keeping on with clinical research, to find something that works even better,
Regina Beach 51:51
right? Yeah, I think that’s always disappointing, even when you’re on highly effective DMT, when you see progression anyway, so reassuring it’s we’re trying to reduce the speed of progression. We’re trying to lessen the progression. But that doesn’t mean that we, none of us, will progress, even if we are on a highly effective drug.
Dr. Aaron Boster 52:12
Unfortunately, that’s the reality. And I think we have to be honest with ourselves. We have to be honest with our patients. And am I proud to have participated in the development of okravis for ppms, absolutely I am. Is it adequate? No, it’s not adequate. Do I do it? Absolutely I do it. Am I looking for more? Yes, I am.
Regina Beach 52:33
Great. Yeah. Thank you. Do you recommend mushroom supplements like lion’s mane and Turkey Tail? Are there any risks if someone wanted to try these so
Dr. Aaron Boster 52:43
so mushrooms have been around for literally billions of years, longer than humans. Like, like, mushrooms are not plants. They’re actually its own, like genus. It’s really mushrooms are interesting, and most mushrooms don’t have any functional value to the human being, aside from deliciousness. So I had some mushrooms last night. They were portobellos, and they had been sauteed beautifully, and they were a fantastic accompaniment to my meal. But that’s not a functional mushroom. That’s just like culinary deliciousness. There are four mushrooms that I can think of that are functional mushrooms. They actually probably do some stuff to help humans. And if you look at other types of medicine, like, for example, in traditional Chinese medicine, there’s a lot of application of these functional mushrooms, and there’s not a lot of clinical research, which makes it a bit challenging. In our recommendations. I’ll talk about Lion’s Mane for a second, because Lion’s Mane gets a lot of popular press in the interwebs with good reason. So Lion’s Mane, which is a really cool looking mushroom, it looks like a it looks like a white Lion’s Mane, hence the name and and it’s supposed to taste like, like seafood, like it’s supposed to taste like fish or crab. I’ve never actually eaten it. I’ve only taken tablets of it, which didn’t have any taste and it what it does is really neat. It helps increase some of the tropic factors that improve the development of neurons, and it also mimics our own tropic factors to do that. And so it would sound like taking this would be really good for cognition and things like that, and it’s oftentimes taken with that indication. The problem becomes, in my opinion, knowing what you’re getting. So if you order capsules of Lion’s Mane, it’s very hard, at least the United States, where it’s not regulated at all, to know what’s actually in it. And so one of the things that I would recommend someone who is interested in Lion’s Mane to do is to either grow it yourself, because it’s not hard to do, or to get it from a very reputable source. There’s a there’s this. I found this guy in California. He’s got a company called Fresh. Caps, and I, he doesn’t know me and I don’t know him, but he’s got a great website, and he produces his own mushrooms, and so that’s a resource that I sometimes will send patients to look at. I’m not trying to promote him. I just think it’s a cool a cool effort. And so if somebody wants to take functional mushrooms, I don’t think there’s a strong contraindication. We have to be careful. We have to sometimes check their liver enzymes and things like that. But the one thing is, I would want my patient to tell me so that I know, so that I can factor it into my thinking. All too often, when we see a patient in clinic, we say, what are the medicines that you’re taking? And they’ll list the medicines that they’re prescribed. So I prescribe this, this and this, what else are you taking? And they have a list of supplements, but they didn’t think they were being asked to present that, so they just don’t share that. So I need to know that I don’t have a problem with a non proven, you know, non allopathic therapy, as long as three criteria are met. Number one, it’s not too expensive, and only, you know, only your family can comment on whether something is particularly too expensive. But I would submit that most of the time, these mushrooms are not terribly expensive. Heck, you can grow them. The second thing is, they need to be not dangerous. And I’m not aware of very serious health concerns with any of these functional mushrooms, although I absolutely want you to talk to your doctor before you take them. Number three is, in my opinion, it shouldn’t be instead of something that I know works. So if you said I’m going to stop my disease modifying therapy for my MS in exchange for taking Lion’s Mane, I would be worried about that. But if you said I’m going to keep taking my disease modifying therapy for MS and I’m going to take Lion’s Mane, I would say, that’s really cool. Where did you get it? And so I think that more research is needed, and I think it’s still kind of early days to believe it or not, but I have a lot of patients. There’s a there’s a coffee product, which is made and sold in a lot of supermarkets the United States, and it’s got a lot of these functional mushrooms, cordyceps and the like in it. And a lot of my patients tell me that they really like it and that it helps with energy. Now, is that because it’s got caffeine in it, or because the mushrooms? I don’t know, but it’s something that a lot of my patients report enjoyed.
Regina Beach 57:09
You mentioned the B vitamins, overcoming ms recommends omega threes and vitamin D. Is there any other vitamin that your patients have had success with, or that you would recommend people looking into if they were interested. So
Dr. Aaron Boster 57:23
so I’m this is just Aaron’s opinion. I’m a big fan of taking a multivitamin because a lot of American diets don’t have adequate micronutrients and vitamins and minerals, and so if you throw a multivitamin in, I feel like you’re covering your bases. Is that required? No, but that’s I just think that’s an easy way to make sure that we’re getting all the stuff we need. I am a big proponent of supplementing vitamin d3 if you can go out in a halter top for 15 minutes in full sun, you can absorb 5000 international units of d3 which is a really good price point because it’s free. But in Wales, just like in Ohio, for half the year, you would freeze to death and get frostbite in places that you don’t want frostbite. And here in the United States, you probably get the cops called on you for walking around outside near naked. And so that’s not a viable option. Throughout the course of the year, there are foods that are very high in d3 so for example, fatty fish like salmon and tuna, which I find to be delicious, are high in vitamin d3 but the amount that you would have to eat to get 5000 international units a day would be, like, 10 portions of dinner, salmon, like, like, literally, like, you have to eat a whole salmon, which I think is hard to do. Same thing with egg yolks. Egg yolks have d3 but you’d have to eat, like, cartons of them. And so oftentimes I end up suggesting that my patients take a d3 supplement. And so that’s to me, like a like, a really, really important one. And I actually check vitamin D 25 oh, H levels a lab twice a year to make sure that I’m keeping my patient above 50 but below 100 that’s the sweet spot for me. Now, beyond that, it becomes a discussion I agree with the data by jonak Looking at flax seed oil, or flax seed or fish oil, and I think there’s actually some data suggesting flax seed might even be superior to fish oil, but the point is that omega three fatty acids are probably some of the very best data for a supplement for Ms. And I think if someone wants to add another one, that’s what they think about. I don’t ubiquitously recommend B complexes, but I do if we’re dealing with like energy, same thing when I talk about Levo carnitine. All of this stated, I want to back up one step and say, before you spend a bunch of money on supplements, you would be well served by improving the quality of the food that you eat. So I would rather you spend some money on healthy food options that are not heavily processed foods with lots of chemicals than I would on buying a supplement. But if the budget allows for both all the better you.
Regina Beach 1:00:01
Right? Yeah, absolutely right, first from the food and then supplementing, truly as a supplement, if you can’t get it from from the diet, wonderful. Thank you so much. All right, passing you back.
Ingrid Adelsberger 1:00:12
Sure. Okay, okay, good. You
Dr. Aaron Boster 1:00:13
mentioned protein, and I just want to bring protein up again, right? So, so making sure that you have enough protein, I think, is in some ways more important than supplements, and I want to add in another one, fiber. So fiber is an indigestible solid, and it’s really, really important in Ms. I think not because it slows down ms, but because it can help with a bunch of really important things, like gut health. People impacted by Ms can suffer from something called dysbiosis, which is a weird word that means the gut bacteria that populate your colon aren’t the right populations. They’re naughty. And we don’t know why that happens, but it happens. And I oftentimes will have people take a probiotic, which is the healthy gut bacteria. But when you take fiber, prebiotic fiber, this is fiber that you can’t digest, but your gut bacteria. Can they eat it? And it helps you metabolize your food. By feeding them, then they do a better job of helping metabolize your food. And fiber helps a lot with constipation, because fiber plus water is like a sponge, and it bulks up the stool, so you have a big, bulky stool that’s easy to hold on to and easy to get rid of. And it helps deal with diarrhea, which some of my patients have, because it bulks up the stool. And so adding prebiotic fiber, typically they’re like 28 grams a day, is where I shoot for is another helpful supplement. Okay, now I promise to stop.
Regina Beach 1:01:34
No, that’s really great. Thank you so much. All right, passing you back over to Ingrid.
Ingrid Adelsberger 1:01:41
Okay, thank you. So you are already in the direction of what we’re talking about. Like, you know, we all have the friends that go like, Oh, really, is that lifestyle doing anything for you? So what be your recommendation if you have a friend and they really don’t know that it takes time for results to show, what would you tell them to tell that friend?
Dr. Aaron Boster 1:02:03
Let me make sure I understand your question. I think what I heard was, if you’re going to give some lifestyle recommendations, what would they be? Is that the question, no,
Ingrid Adelsberger 1:02:11
the question is like, if you have a difficult friend that doesn’t understand that, it actually takes time for OMS overcoming multiple sclerosis to really show what should we tell those friends?
Dr. Aaron Boster 1:02:22
Got it? Okay? Thank you. Now I understand. So you know the expressions Rome wasn’t built in a day or something like this, when you’re changing an adult behavior. Number one, it takes weeks, if not months, to ingrain that behavior into the human and number two, there’s a therapeutic lag. So let’s talk about the term therapeutic lag. Many red blooded Americans are accustomed to, I have a headache. I take an aspirin. I’m better. Next topic like an immediate benefit, right? So I take the aspirin within 15 minutes. Oh, my headaches gone and and a lot of times we think of medicines and other interventions like behavioral measures, we expect them to kind of be like that, like I do it and I immediately see a benefit, and that’s simply not the case, whether you’re talking about ms behavioral measures, like the overcoming ms protocol that I’m so fond of, and The MS medicines because the changes that you’re making today are going to pay dividends later. And let me give you, like a very easy example. So apparently I’m very into the concept of cloning people, because I’m going to use that example again. So I get permission from the government, and I get permission from your spouse, and we clone you. Now there’s two of you, all right, so we either need to congratulate or send condolences to your spouse. I’m teasing. And there’s two of you, and we give one of you Days of Our Lives TV, which is an American soap opera on daytime TV, and chocolate cake, right? And then we give the other version of you a treadmill and carrots, right? So we have two versions of you that have two different lifestyles, and then we get back together in three years, right? So what do we find? We find one version of you that’s very different than the other. So the one that was on the elliptical with the carrots, she looks really great. She’s got a strong core. She’s lost a couple pounds. Her balance has improved, her leg strength has improved. Her cardiovascular endurance is even better, right? So, so she’s kind of like a Greek goddess version of herself. And then the other gal found the weight that this one lost skin a couple pounds. She’s kind of out of shape, gets out of breath really easily, doesn’t have the best strength in her core, her legs, but she knows a lot about TV. Okay? So there’s two versions, and then we get out that same Harry Potter magic wand, although this time we cast a terrible spell of an attack of left leg weakness, right so both versions of you develop an attack of left leg weakness. She, who has been pre conditioned, is limping, participating in physiotherapy, working full time and taking care of her entire family. The. One is trapped in a wheelchair and cannot stand up. And the only difference was we allowed this one to become deconditioned, and we insisted that this one become prehabilitated. This is an example of the value of behavioral measures in the future, and so we need to make the investment now, when you adhere to the seven pillars of overcoming ms, it’s not to make you better today, it’s so that you remain better 20 years from now, 30 years from now, and we have to have long sight if we’re going to be successful with this disease, because therapeutic lag is critical in understanding why we do what we do.
Ingrid Adelsberger 1:05:44
So that’s a good example that we should tell all of our friends if they don’t believe that what we’re doing actually makes a difference. Sorry, what?
Dr. Aaron Boster 1:05:52
I can’t help myself. One last one. Think about this. Just think about physics. If I give you a backpack with 10 pounds in it, and you have to walk, you’re carrying 10 extra pounds on your legs. And if, God forbid, you have a weak leg, that’s 10 extra pounds on that weak leg. If I remove the backpack, I remove 10 pounds off that weak leg, although the backpack might actually be your gut. So, so it’s, it’s weight that you’re carrying on your body, and simply by losing weight through behavioral measures like exercise and healthy eating, by meditation and mindfulness and all the things, you’re actually making the physics of moving easier and so and so, I think that’s very, very important. Okay, now I will be quiet. Okay,
Ingrid Adelsberger 1:06:37
thank you. We actually have another question about following a healthy lifestyle, is it possible to reduce or even remove lesions in your spinal in your brain or spinal cord? So
Dr. Aaron Boster 1:06:50
the party line is, when we see a white spot, all right, we call that a t2 hyper intense lesion. So that’s a white spot on the MRI that represents an area where inflammation has occurred, right? So the blood brain barrier has been breached, and the naughty, auto reactive cells leave the bloodstream, and they enter into the brain, where they see the holiest of holies, the supercomputer, but they think they’re looking at a bad guy, and they attack it with inflammation, and that brings in water, and it brings in a bunch of cells, in the water leaves a puddle, and so that’s a lesion a spot. And that lesion, we see, it doesn’t we don’t know anything about when it occurred, and we don’t know the underlining pathologic process. It could be demyelination, it could be remyelination. We don’t know. We just know where it occurred, because it just shows up as white. And there are times where someone has an MRI and they have very inflammatory lesions that are sometimes new, and they’re big and they’re ugly and scary, and over time, they get smaller, right? So that can happen. Sometimes lesions can become so less conspicuous that they’re hard to find on the MRI. And that’s very, very exciting. So, so it is possible that lesions can shrink. I am not suggesting that that’s common, because I don’t feel like it’s common, but it can happen. Now this answer is actually a little bit tricky, because if you move chronologically forward in time as you age, when you look at people, 50, 6070s, they’re sometimes their their brain volume is shrinking, and so are the lesions. So the lesions look smaller, because everything’s smaller, and that’s not the same thing that stated. I have a patient, a dear patient of mine, who’s down in Florida, and when he comes to visit me, and we get an MRI, he takes screenshots of the lesions, and he meditates every morning on making them go away, which I love. I think that’s so powerful. So he stares at them and he concentrates on making them go away. I love that.
Ingrid Adelsberger 1:08:55
Okay, what now? It’s about shifting our gears to driving. What suggestion would you give to for somebody that wants to learn to drive? Should they use an automatic and how do can they manage stress and fatigue during the lessons and also for the test?
Dr. Aaron Boster 1:09:13
So you know, driving is an intense experience, and it’s stressful, and I know this because I have a teenager who’s currently going through driving education. So getting into the car with my teenager is a terrifying experience, both for my kid and for me. Sometimes not that they’re a bad driver, but come on, now it’s scary. And when an adult with MS is learning a new task, they’re able. They’re capable. Oftentimes, sometimes it can be harder. Sometimes it’s very, very straightforward, but I think the more systematized you are, and the more practice that you have, the better you’re gonna feel with driving. So do you need to have an automatic? That depends? I love driving a manual, like it’s fun to drive a manual and feel very connected to my car. Right? But some people, they don’t have use of both their hands, or they don’t have use of both their feet, and so it makes a lot more sense to use an automatic and I have a lot of patients, I will send them to driving education with occupational therapy. So that’s a tip. If you’re having trouble with driving, or you’re having trouble learning how to drive, or you’re you have a driver’s license, but it’s becoming difficult. Occupational therapists can get in a vehicle with you, and they can teach you, for example, how to use one foot to control the pedals, as opposed to two or what have you. And they can do things really extravagant, like come up with hand controls on your car. So I have patients that drive, and they can’t use their legs to for the pedals, but they can do it all with their hands at the end of the day, I think we have to be honest with ourselves, and if you feel like you’re a risk in a car, say that be honest about that, because we can send you to occupational therapy and beef you back up. But what we don’t want to do is ignore the problem. And God forbid you have a problem on the road and you smash into my car or someone else’s car and hurt yourself or my family. And so I think that we need to be good stewards of the road, and I think that driving is an option for people impacted by MS, and I don’t want you to shy away from it. And if you need help, there’s help to be had, and most commonly with occupational therapists. They’re fascinating,
Ingrid Adelsberger 1:11:26
great. Thank you so much. It’s again, one of these things, the more help we get, the more we can do, and the healthier we can live. Okay,
Regina Beach 1:11:36
all right, we are sadly getting to the end. So we are going to do some quick, rapid fire answers to get through as many questions in the next 20 minutes as possible. And our first one is a clarity on cutting sugar from the diet. Do you also recommend cutting natural sweeteners like dates and maple syrup, which are processed in the body in the same way? Or is this a really just granular white sugar that we find in processed foods? So so
Dr. Aaron Boster 1:12:07
I definitely would start with the granular sugar and the high fructose corn syrups. That’s where I would start. I then would involve reducing those other forms of sugars. Now, if you’re going to have a sugar, having fructose from a fruit is way better than sucrose or what have you. So I don’t think it’s like no apples for you ever, but I do try to limit the amount of natural sugars that we have. I really, I really, I really do recommend that,
Regina Beach 1:12:33
but don’t do that until you’ve cut out all the papers. Don’t start
Dr. Aaron Boster 1:12:37
by removing the high fructose corn syrup and the heavily processed sugars and the donuts or what have you, and then later, depending on how things are going, then you could start to address some of those
Regina Beach 1:12:47
others. Great. If you have muscle wastage from MS symptoms, can you re strengthen with exercise? What’s your recommendation there?
Dr. Aaron Boster 1:12:55
If there is a connection between the brain and the muscle, any connection, even if it’s a weaker connection in the muscle, can still receive the message from the brain. So I’m showing you my my massive bicep here. I’m joking, you know, and I want to make my arm do this right, as long as there’s a connection and I can move across the joint, I can strengthen and I can build muscle. Now, that doesn’t mean it’s going to be really easy. It might be super, super hard, and you might need assistance through physical therapy to do it, but yes, you can rebuild muscle. I’m not selling snake oil like you’re going to be an Olympic athlete, but I absolutely think with the appropriate physiotherapy, if the joint moves, you can strengthen the muscle.
Regina Beach 1:13:33
Yeah, and this is why we recommend exercise with the overcoming MS program, no matter whether it is from your bed in a lying down position from a seated position, or if you’re running like you can do it no matter what your current level of activity is. What is the current evidence for using red light therapy or photo bio modulation to help with nervous system and rebuilding cells
Dr. Aaron Boster 1:14:01
so, so this is research that is fledgling. In my experience. It’s it’s just being explored, I feel. And when I first heard about someone’s going to sit under a red light to help their MS, I thought that sounded silly, like I thought that sounded nonsensical. It’s very interesting, when you start to look at it, that it may actually have some impact in the immune response. And so I will admit to not having a lot of information. I’ve looked at a couple of really early trials where we were, where the the the suggestion is that it might actually help with some things. Again, red light is not dangerous. Actually, I’m in my, you know, YouTube studio, and I have a red light right here, right So, so you can put that in a light bulb and expose yourself to red light till the cows come home. It’s not dangerous. And it’s also, this is not expensive, and so as long as we’re doing it, in addition to other things that we know work, I’d say, Get Yeah. Um, and I think it’ll be really exciting as we learn more. Oh, sorry, yeah,
Regina Beach 1:15:04
absolutely. And, um, I think this is like a place where the physical therapy research is it’s not necessarily in happening in neurology. And I know I can last in an infrared sauna way longer than I can last in a traditional sauna. So, you know, try it. It Right? It can harm you. Great. All right, back to Ingrid for the next three.
Ingrid Adelsberger 1:15:24
Okay. What is the link between sleep and relapses? Good one.
Dr. Aaron Boster 1:15:29
I am not familiar of data where, if you lack sleep, it triggers a relapse. Directly. Stress is bad for MS on multiple fronts, and inadequate sleep is a great way to increase stress. So whereas I don’t feel like if you don’t sleep you’re going to trigger a relapse, I feel confident telling you that if you don’t sleep you’re going to have a difficult time with many, many chronic MS symptoms, and I want to stress the critical importance of sleep. It’s all too often ignored amongst people with MS or without?
Ingrid Adelsberger 1:16:03
Another great question. Dr Gabo Matei, what do you think about his analysis of the autoimmune diseases being partly caused by stress and trauma?
Dr. Aaron Boster 1:16:13
I don’t know the research, and so I’ll pass on the question. I don’t want to make stuff up, so I’m not sure I can’t answer. Okay,
Ingrid Adelsberger 1:16:20
thank you. So I hope I’m saying that correctly. Is the neurofilament light chain test accurate in predicting prognosis and predicting progression of the disease.
Dr. Aaron Boster 1:16:31
So it’s neurofilament light chain is a interesting biomarker. So a biomarker is a test that teaches you about the human, but it’s not actually looking at the human. It’s a it’s a marker of something that’s going on. And there’s a lot of biomarkers, like, for example, in diabetes, we can draw a lab called a hemoglobin, A, 1c and it’s a biomarker of how well you’ve been controlling sugars, right? So, so neurofilament, light chain. What is that when you have a neuron? So let’s pretend this cord is a neuron, and you break it all right, either because of trauma or a stroke or MS or brain tumor or anything that damages the neuron. It cracks the axon, that’s the long part of the neuron, and inside the axon are all of these filaments. There’s neurofilament heavy chain, neurofilament medium chain, and neurofilament light chain. And when there’s damage to the neuron, and the neurofib light chain floats out into the spinal fluid and then floats out into the bloodstream. And the higher the neurofilament, the more damage the neurons experienced. It is completely agnostic to the cause. So it is not good at diagnosing ms at all, because if you had head trauma or ALS, God forbid, you’d have an elevated neurofeed. So this is not useful as it relates to diagnosis. It does look, however, that the that there is value in neurofeed chain, in how the disease activity is going. And so it’s becoming increasingly useful, I feel, to start to follow neurofilament light chain. There’s been an evolution over the last just couple years, and we’re starting to see it trickle out of trials into some of the clinical practice. So for example, there’s a for profit company based out of the United States called octave. And again, I don’t have a relationship with them, but I think their research is interesting. And they’ve made a test, a blood test, and it doesn’t look at just neurofilament light chain. It looks at 18 different biomarkers, which, in aggregate, are actually even more accurate at predicting activity the neurofeed by itself. Now, this is not ubiquitously available in the United States yet, because it’s not covered by insurance and people have to pay out of pocket, so it’s not prime time yet, but if it was universally available, I would probably be checking it a couple times a year, probably four times a year, to aid in my surveillance of how patients are doing.
Ingrid Adelsberger 1:19:03
Okay, thank you. Next three questions for you. Gina,
Regina Beach 1:19:10
All right, great. Is cryotherapy beneficial for MS, I know that when I get out of a cold pool or the ocean, my walking is better.
Dr. Aaron Boster 1:19:18
I don’t know data about cryotherapy being better, I do know that changes in temperature can absolutely have an impact in people impacted by Ms. Some people with MS struggle when it’s too hot outside, and some people with MS struggle when it’s too cold outside. And I can’t make a ubiquitous comment for all comers, I think if people notice that they fare better after a cold shower, then I would endorse doing so, but I wouldn’t force you to do that otherwise, because that could be a little torturous, right?
Regina Beach 1:19:50
But also, it’s cheap, it’s easy. It doesn’t contradict anything. Go ahead and do it. Yeah. What are your recommendations for vision problems and getting vision. Back or retraining after having some optic nerve damage. So
Dr. Aaron Boster 1:20:05
So first I want to treat the optic neuritis. So I want to give you a course of steroids to hasten the recovery and to quell ongoing inflammation. There’s one small study that seizure medicine called Dilantin may actually help facilitate. So sometimes we’ll add that into that cocktail, if you will. We’re going to probably track the person’s vision with low contrast visual acuity and ocular currents tomography, Oct to kind of see how things are going. And then we’re going to have to see how much vision is lost. Occupational Therapists are getting a lot of play time during this discussion because they’re so very, very helpful, and one of the ways that they’re very helpful is in helping with low vision problems. So if you went from seeing normally to only seeing with one eye, God forbid, or had diminished vision, then you may need to learn some new ways of doing things. For example, new ways of driving new ways of reading or navigating. And so occupational therapists can help you a tremendous amount with that.
Regina Beach 1:21:03
Great Yeah. And then a, I think under perhaps, talked about symptom of ms, what do you suggest for help with focus and concentration?
Dr. Aaron Boster 1:21:15
So our entire discussion earlier, the 10 things that we commented on to help with fatigue, are all 100% applicable to focus and attention, because to me, that’s a form of fatigue. I call that cog fog, or cognitive fatigue. And so find and replace everything I just said in it suffices in its entirety. Can I go back to vision for 10 seconds? I have a patient, a dear patient of mine, who is blind in one eye and can see literally with a pinhole in the other eye. Very serious, very, very affected by his MS. And he presented to my clinic a couple months back wearing very, very fashionable glasses. He had on these very lovely glasses. It was a black frame, very, very attractive. I said, Wow. I like your glasses. He says, These are smart glasses. And he can, he can look at something, he can’t see it, and he can say to the glasses, what do I see? And the glasses will describe what he’s looking at, which is really, really cool. So I don’t know which company that was, and I’ve only seen one patient with it, but man, that was really a neat thing. And so
Regina Beach 1:22:20
I’ve not heard of that cool. All right, all right. Over to Ingrid.
Ingrid Adelsberger 1:22:27
Hey, mcdoodle, McDougal, McDonald’s criteria, would an updated version be good because you could get diagnosed quicker, or would it? Would it help to avoid misdiagnosis? Both?
Dr. Aaron Boster 1:22:41
So when you’re trying to come up with diagnostic criteria, or criteria for something, you want to deal with the accuracy. So how accurate is it in, in the speed at which you can do it? And so when you think about the diagnostic criteria for MS, starting with, say, Poser criteria in the 80s, we then evolved and had the first McDonald criteria, and then we’ve had repeat renditions. So we had McDonald 2001 McDonald 2005 McDonald 2010 McDonald 2017 and now at the most recent ECTRIMS, we had the newest rendition. Every single permutation allows us to diagnose more accurately and faster, which is really both of those are critically important, and so the most recent diagnostic criteria got a little rid of some fluff and really brought to bear some new imaging techniques which are reassuring to confirm MS diagnosis. So yeah, both and both are very, very important.
Ingrid Adelsberger 1:23:41
Okay, so thinking about shots, COVID shot and flu shots, should we get them at the same time, or should we have space in between? If we are on a disease modifying drug, I
Dr. Aaron Boster 1:23:52
would do them at the same time, because adults are not very good at getting vaccinated. And if I can get you to receive one vaccine. I want to get them all done so that I don’t have to risk you not coming back. I got both the flu and the COVID vaccine at the same time, and I encourage my patients to do the exact same thing, so that way we can just knock them all out. Okay,
Ingrid Adelsberger 1:24:16
perfect. Thank you. When you treat your patients, do you discuss the risk for family members, and what information do you provide then? Yeah,
Dr. Aaron Boster 1:24:25
absolutely. I think that’s required, and it’s in keeping with overcoming Ms. Focus on on family and so I like to talk a little bit about statistics. So in the Midwestern United States where I practice and live, the risk of MS in the general population, is about one person for every 350 people. If you have MS, your first degree relatives, so mom, dad, brother, sisters, kids have a one in 40 risk. So it’s a higher risk. That does not mean that everyone you give birth to is going to have Ms. You’d have to have 40 kids for one of them to develop ms, to. Statistically, and I want people to know that, but the reason I want them to know that is because there are some modifiable risk factors. There morbid obesity and inactivity amongst children, increases the risk for MS, and so if your child already has an increased risk for MS, that’s worth knowing about, right? Because that allows you to intervene smoking exposure to first secondhand smoke can increase the risk to develop MS by double. And so I’ve never met a parent that once their kid you smoke, Johnny, you know. But I want families impacted by Ms to be even more aware of the danger of having their children exposed to secondhand or firsthand smoke, because it would increase the risk the the reach goal, which we can’t do yet, would be to prevent children from getting Epstein Barr Virus. So mononucleosis or the kissing flu or glandular fever, those are all the same condition caused by EBV, and the data now supports the idea that exposure to EBV may be one of the requirements to develop Ms. And so right now, 95% of the American population is exposed to EBV, which means it’s like a really successful virus. But if we were able to prevent a generation from getting EBV, I think it might remarkably diminish, if not stop MS in that generation.
Ingrid Adelsberger 1:26:18
Really cool. I had it too, of course. Okay. Gina,
Regina Beach 1:26:26
okay, we are down to the wire. What about headaches and Ms? What do you have recommendations for those?
Dr. Aaron Boster 1:26:33
So people impacted by Ms are at very high risk of having headaches, way higher than the general population. And sometimes nature’s too generous, because it’s not just migraines. You can have occipital neuralgia, you can have pain in the back of the mouth. You can have optic neuritis, which can cause pain. You can have migraine headaches. You can have tension headaches and have cluster headaches. Oh my goodness. The good news is all those are treatable. And so it starts with prioritizing what’s important when you talk to neurologist and not forgetting, hey, I have headaches really frequently. So we treat a lot of headaches at the boster center for MS, we only seen people impacted by Ms. We do a lot of headache Botox, where we use botulinum toxin to knock out headaches. We use a lot of the newfangled monoclonal antibodies, which are really, really remarkable at decreasing headaches. And there’s a host of anti epileptic and antidepressant medicines that have excellent efficacy, decreasing headache frequency. So don’t take that laying down. We can treat it,
Regina Beach 1:27:30
great. So talk to your team and get get some answers. Try some stuff. See what works for you. Great. What’s your recommendation about discontinuing medication as you age? Is it risky? Is there benefit? When would you discontinue a DMT?
Dr. Aaron Boster 1:27:45
In the spirit of speaking quickly, I would I always discontinue a DMT at death? So never once in my career have I continued someone’s disease modifying therapy after they’ve passed away, because I think that’s completely stupid, and there’s zero data to support doing it that stated until they die. If they have neurological features that they’re fond of, like seeing or smelling or walking or having an orgasm or wiggling their finger, then I want to maintain those neurological features. And if they have MS, their immune system is at risk of attacking them, and so I want to keep them on their disease modified therapy. I think it is ludicrous, actually that neurologists have gotten so ageist in their perspectives, and they think just because you’ve celebrated a particular birthday, you’re now 55 or 60 that you don’t need to be treated. And some of the data is very, very frustrating to me. There was a study done where people 55 or older, who would not have any new attacks in five years, they were asked to stop their disease, modified therapy, and the authors inappropriately concluded it’s safe to do that, because only 1/3 of the people progressed in their disability. There weren’t any attacks.
Regina Beach 1:28:50
But I know, but we know that this is this. It’s like an inverse, right? We have attacks when we’re younger, and we know we have brain atrophy when we’re older. So why wouldn’t we want to prevent
Dr. Aaron Boster 1:28:59
that? My mom is amongst the 1/3 that progressed because you took her off for medicine. That’s not okay. And everyone I treat is somebody’s mom. And so I think that it’s nonsensical to stop, but I always, I always stop at death. I’ve never once continued. So I have a very firm answer there.
Regina Beach 1:29:15
All right, and what are your tips for foot dropped? Would you recommend electrical muscle stimulation? How can we treat that really common, another common symptom?
Dr. Aaron Boster 1:29:23
Yeah, so let’s talk about some assist devices that we can use for foot drop. Now, Physiotherapy is very important for foot drop, but there’s something called a foot flexor, which is nothing more than like a so pretend this is my foot, because I’m not very flexible, I can’t bring my leg up here. So this is my leg, and this is my foot, and there’s a velcro strap here with a bungee cord to your shoelaces, and it cocks your foot up, right? And that costs like 20 bucks on Amazon, and that’s a really easy, breezy way. Next we get to what’s called an AFO, or an ankle foot orthosis, which is like a L piece of plastic shaped the back of your leg and your foot, and you put it in your shoe, and you put your. Foot and lock it on your leg, and it just keeps your foot up. And sometimes that can be very, very helpful. I’m more fond of the electrical stimulation options, and the most exciting one that I’ve used is something called the psionic neural sleeve, and that’s psionic with a C again, I have zero relationship with the company, but I wish I did, because I think their device is super cool. It’s a neoprene sleeve that goes from the bendy crack of your leg down to your ankle, and it’s got electrodes on the quadricep and the hamstring and the front of the lower leg and the back of the lower leg of the calf, and it’s hooked up to a smartphone, and so it can stimulate the muscles at the right time to create normal gait mechanics. And so that can be really, really really helpful for someone who has not just foot drop, but also has weakness at their hip, and so I like that device very, very much. Nice.
This webinar was recorded on 20th October 2024 as part of our Living Well with MS Webinar Series.
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