S7E26 Webinar highlights – Ask Aaron your opportunity to speak to a neurologist about living well with MS

Aaron Boster (00:00)

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.

 

Overcoming MS (01:09)

Today’s episode features audio from the Ask Aaron, your opportunity to speak to a neurologist about living well with MS webinar, part of the living well with MS webinar series. Multiple sclerosis neurologist, Dr. Aaron Boster speaks with me, Gina Beach, and trainee facilitator, Ingrid Adelsberger, to answer your questions about MS.

 

Overcoming MS (01:34)

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. I’m going to be welcoming Aaron and overcoming MS trainee facilitator Ingrid Adelsberger to the virtual stage.

 

Aaron Boster (02:12)

Howdy.

 

Overcoming MS (02:12)

Aaron, are you ready for your first question?

 

Aaron Boster (02:15)

Let’s do it. I’m super excited and thank you guys for having me back.

 

Overcoming MS (02:17)

Hey, what advice do you have for someone living with primary progressive MS who feels like that symptoms are worsening?

 

Aaron Boster (02:25)

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 Ocolizumab, 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.

 

I recognize as I speak to an international audience that that’s not ubiquitously available I think where a lot of times neurologists 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, and spasticity tightness of the legs.

 

We can also develop problems with the down there’s with bowel, bladder, bedroom, et cetera. 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 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 and 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.

 

Overcoming MS (03:57)

So that really means that the more we talk to our doctors, the better care we get.

 

Aaron Boster (04:02)

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 got to come together to do that. So absolutely reaching out and 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 clinicians’ attention so that they can in turn help game out how to make those things better.

 

Overcoming MS (04:34)

Okay, as we’re talking about primary progressive, are there any updates on that? Is there anything that we should be hopeful for?

 

Aaron Boster (04:41)

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. there’s so many exciting developments within MS clinical research and many of them are desperately trying to crack the nut of progression of disability.

 

Now, there was a readout on secondary progressive MS, which, not to spoil the lead, but was positive, it was successful.

 

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 remyelinate and trying to create neuroprotection. So it’s a very, very exciting time to be involved.

 

Overcoming MS (05:30)

So it almost sounds like you knew already what the next question will be about because it’s exactly about those BTK inhibitors.

 

Aaron Boster (05:39)

BTK inhibitors. Yeah, these are not words that you or I would ever make up.

 

So let’s tackle this a little bit. First of all, ⁓ what is a BTK inhibitor?

 

BTK stands for Brutein Tyrosine Kinase, and it’s an enzyme inside of certain immune cells. 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 cell’s function in 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. And so the B cells there, it just can’t interact. 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. To date, with all the different disease modifying therapies currently available, none of them directly work on the innate immune system. BTK inhibitors do. 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. Right now, there are a host of clinical trials studying BTK inhibitors.

There was one trial and we participated in both these trials at the Boster Center for MS. The first trial was called Gemini. It studied relapsing forms of MS. So people that had relapses. In the Gemini trial, we gave all the people either got tolobrutinib or they got standard of care, 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. The strong hope was that this tolobrutinib would outperform the active comparator, the abogio. And much to our chagrin, it was a negative trial. Now to talk about that, what does that mean? That means that tolobrutinib 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 well as Abagio could, which was very, very disappointing. And so that trial was kind of, 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 tolobrutinib, 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 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 they have progression of disability, they’re getting worse in their disease without attack. So that’s the people we studied. The Hercules trial, we didn’t compare tolobrutinib 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 tolobrutinib against placebo. And the primary outcome measure in the Hercules trial was not relapse rate because these people didn’t have relapses. It was slowing disability. It was a positive successful result. We found that as compared to the placebo arm, the patients that took tolobrutinib 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.

 

Overcoming MS (10:54)

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

 

Aaron Boster (11:07)

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 &D. That’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.

 

Overcoming MS (11:35)

Which we’re seeing with Tysabri right now.

 

Aaron Boster (11:36)

Correct, that’s exactly correct. Very common 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. One of the two things that Roche, the manufacturer of this medication, Ocravus did is they started to test it in children. And so right now we’re involved in a clinical trial called the OPERATA trial, which is looking at young people, meaning children, teenagers or younger who have relapsing MS and we’re giving them ocrevus versus Gylenia. 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.

 

This is not a self shot like Copaxone or Rebiff or Pleggerty or Kisemta. 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 infuse the medicine under the skin.

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. first infusion, the first time you get infused, it’s going to take about an hour and a half, but then subsequent infusions, it can take an hour from start to finish. Now we infuse Ocravis 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 where 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.

 Right now here in the United States, it’s a very interesting time. It’s now been approved. 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. mean, the human being and I will decide, hey, let’s try to do it this way. And it’s very early times.

 

Overcoming MS (14:07)

And then if they want to go back to IV will they be able to?

 

Aaron Boster (14:11)

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 parity. So they’re not going to try to force someone’s hand that they have to do the newfangled sub-Q or the old school infusion. It really should be left up between the clinician and the patient.

 

Overcoming MS (14:36)

Do you know anything about the results for the remyelination drug trials on metformin and clemastine? Where is that at? And if and when a remyelination drug does come to market, do you think, like, 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?

Aaron Boster (14:59)

The concept of remyelination sounds magical. 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. The reality is that the science required to do that, though we haven’t been able to achieve just yet. It’s actually very, very hard. The way that babies and young people myelinate.

It was fascinating. 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. 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 Clomastin that you just mentioned, and Metformin that you just mentioned.

 

I don’t, suffice to say that it’s not prime time just yet. Interestingly, Clamastin is available. It’s an ehistamine. And I’ve had some patients that have said, hey, can you just prescribe it for me? Which I have done. 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.

 

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. I want to keep my patient in as good of 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. 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 haven’t hit it just yet. Fingers crossed and stay tuned because we keep trying.

 

If I make one last comment, when I think about a hypothetical cure for MS, 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, et cetera.

 

And so it’s in my mind that we will find three separate therapies all used in conjunction to ultimately achieve a cure.

 

Overcoming MS (17:55)

So speaking of the idea of brain atrophy, can you tell us about the phase three trials on Symbastiton and people with secondary progressive MS?

 

Aaron Boster (18:06)

So this is the STAT2 trial. Yeah. So when I was a resident in training, so full head of hair, no gray, you a 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. said, well, Aaron, why don’t we wait until it’s tested in humans? Which was very wise. Subsequent to that, there’s been a couple of 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 synthestatin, which is a statin medicine. It’s actually a statin medicine that I take for high cholesterol, but it’s not being used for cholesterol lowering. It’s being used because statins have aimatory properties. 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 Stat2 trial. And in the Stat2 trial, this time they were giving people a statin or placebo with a goal of slowing disability. So that’s reaching for a very important clinical outcome. 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. Much to my chagrin, both the placebo arm and the statin arm had the same progression of disability. And so was kind of a negative trial. And that’s a bummer, but a couple of 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 wanna say thank you for that. The second thing, it’s important that we keep trying. We’re gonna crack this nut eventually, and this is how we’re gonna do it. We’re gonna keep pushing and pushing, and one day we’ll break the door down.

 

Overcoming MS (20:37)

Yeah, and so people should still be 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.

 

Aaron Boster (20:51)

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. 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, et cetera. 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 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 trial.

 

Overcoming MS (21:52)

Yeah, I know I fill out my quarterly survey for the MSUK registry and I, you know, just my little drop in the bucket to help the research move forward. So thank you so much, Aaron

 

Aaron Boster (22:02)

Little drop. It’s a big drop. Very important. So thank you for doing that.

 

Overcoming MS (22:06)

if I read correctly, about 80 % of people have fatigue. Would you recommend any medication or supplement for fatigue? And are there also other ways to treat it?

 

Aaron Boster (22:16)

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 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. That fatigue, is invisible. It’s exceedingly frustrating for many of my patients, at least here in the United States, when you say to someone, man, I’m tired, they say, yeah, me too. Almost like, how are you? I’m good, me too. Without even like hearing the person, yay, I’m also tired.

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 of 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. Number one is improving sleep. Now don’t poo poo 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 in the middle of the night to pee. We are completely exhausted. 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 gonna 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 is a poison. 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. 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 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. 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 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.

 

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. So number seven, let’s start to talk about ⁓ supplements. And so what supplement that I want you not to ignore is protein. So protein is not really a supplement, protein is a macromolecule, but having low protein  can contribute 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, say, 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 levocarnitine. Now this is number eight for those that are counting at home. Levocarnitine or L-carnitore is an amino acid, right? So it’s one of the building blocks of protein or steak. 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 levocarnitine twice a day for people that are fatigued. Another supplement which helps some people is a B complex. So if you are B12 deficient, supplementing B12 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 Bs, the B1, 3, 6, 12, et cetera.

 

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 ProVigil, and there’s a cousin called R-Modafinil, and the trade name in the United States is NuVigil. These are medicines that they give airline pilots when they fly from Great Britain over to United States to keep them alert and awake.

 

These medicines are remarkable in tricking the brain into being 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 of 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 of 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. 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.

 

They are very, very helpful, just like with provigil, ⁓ assisting people with energy. Provigil, by the way, messes with birth control. And so if you are 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 and sleep hygiene.

 

Overcoming MS (30:41)

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Overcoming MS (31:04)

And what is your personal and professional opinion? How can we support if we don’t have MS, but our loved one has MS?

 

Aaron Boster (31:12)

That’s 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. 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 called Versus MS. It was kind of a survey that looked at the soft underbelly of MS asking some 1,500, some people with MS and about 500 care partners, all these questions. 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 nighties 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 fog is extremely common.

 

Pain is extremely common in MS. Bladder dysfunction, bowel dysfunction, sexual dysfunction. 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 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. 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 Boster 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 peg 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 with the neurologist and they don’t have lots and lots of time. Neurologist is I’m pelted 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. They can be an advocate and say, before we leave, remember you wanted to ask the doctor about your fatigue. 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, wait, 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 those are all ways that I think a loved one can really help someone impacted by MS live their best life.

 

Overcoming MS (35:21)

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 it?

 

Aaron Boster (35:29)

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 recently benefited from the MRI technology to make the diagnosis more accurate and to make it faster. So those are really big deals. When you diagnose someone with MS and you order MRIs of this and this, 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 Boster 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 of years. It used to be ubiquitous that we always ordered contrast, and it’s fallen a little bit out of 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 20-some times 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. 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 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. I don’t ever recommend that someone gets a linear contrast molecule, gadolinium molecule. There’s another kind of contrast or gadolinium called macrocyclic molecules. So cyclic like a circle.

So macrocyclic molecules are not sequestered in the brain and I’m not worried about them. Whether or not the person is gonna 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 wanna be clear, I’m not getting labs to prepare for an MRI, but we get labs several times a year and 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.

 

Overcoming MS (38:21)

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 Ocrvus

Aaron Boster (38:36)

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 Ocrevus 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 Ocrevus.

 

And the other half got dummy drug, right? And I, I participated in this trial years back. At the end of the trial, we could look at the group that was treated with the Ocrevus and the 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 Ocrevus got worse, but they got less worse than the people that were on placebo.

 

So knowing that, we know that if we then apply Ocrevus to someone else with PPMS, we can have the same expectations. However, unless we can clone you And then we gave one of you Ocrevus in this example and one of you a hug. And we got back together in a couple of years. I could prove to you that the version of you that got Ocrevus, even though you had progressed, progressed less than the other version of you. Now, very likely we’re not gonna 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 depletors 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 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.

 

Overcoming MS (40:26)

Right. Yeah, I think that’s always disappointing, even when you’re on highly effective DMT, when you see progression anyway. 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.

 

Aaron Boster (40:39)

Unfortunately, that’s the reality. And I think we have to be honest with ourselves. We have to be honest with our patients. Am I proud to have participated in the development of Ocrevus 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.

 

Overcoming MS (40:57)

Do you recommend mushroom supplements like Lion’s Mane and Turkey Tail? Are there any risks if someone wanted to try these?

 

 

Aaron Boster (41:04)

So most mushrooms don’t have any functional value to the human being aside from deliciousness. So I had some mushrooms last night. They were portabellas 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. You look at other types of medicine, like for example, in traditional Chinese medicine, there’s a lot of application of these functional mushrooms. It’s not a lot of clinical research, which makes it a bit challenging in our recommendations.

 

Aaron Boster (41:46)

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. looks like a, it looks like a white lion’s mane, hence the name.

 

Aaron Boster (42:00)

It what it does is really neat. It helps increase some of the tropic factors that in 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 in 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 this, I found this guy in California, he’s got a company called Fresh Caps, he doesn’t know me and I don’t know him, but he’s got a great website and he produces it on mushrooms.

And so that’s a resource that I sometimes will send patients to look at. 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, 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 gonna stop my disease modifying therapy for my MS in exchange for taking a lion’s mane, I would be worried about that. But if you said, I’m gonna 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 coffee product which is made and sold in a lot of supermarkets in 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? don’t know, but it’s something that a lot of my patients report enjoying.

 

Overcoming MS (44:45)

You mentioned the B vitamins, Overcoming MS recommends Omega-3s 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?

 

Aaron Boster (44:58)

So I’m a big proponent of supplementing vitamin D3. If you can go out in a Holtertop,

 

For 15 minutes in full sun, you can absorb 5,000 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’d 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 5,000 international units a day would be like 10 portions of dinner salmon. 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 ⁓ levels of a lab twice a year to make sure that I’m keeping my patient above 50, but below a hundred. That’s the sweet spot for me. Now, beyond that, it becomes a discussion. I agree with the data by Jonick 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-3 fatty acids are probably some of 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 levocarnitine. 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, I would on buying a supplement. But if the budget allows for both, all the better.

 

Overcoming MS (47:04)

Right, yeah, absolutely. First from the food and then supplementing, truly as a supplement if you can’t get it from the diet. thank you so much.

 

Aaron Boster (47:12)

You mentioned protein and I just want to bring protein up again, right? So making sure that you have enough protein, I think, is in some ways more important than supplements. I want to add in another one, fiber. 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 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. It helps.

 You metabolize your food by feeding them. Then they do a better job of helping metabolize your food. 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 onto 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.

 

Overcoming MS (48:26)

if you have a difficult friend that doesn’t understand that it actually takes time for OMS, overcoming multiple sclerosis program to work.

Aaron Boster (48:37)

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. Number two, there’s a therapeutic lag. So let’s talk about the term therapeutic lag. Many red-blooded Americans are accustomed to, 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, my headache’s gone. 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. 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 she’s kind of like a Greek goddess version of herself. And then the other gal found the weight that this one lost. She’s gained a couple pounds. She’s kind of out of shape, gets out breath really easily. It doesn’t have the best strength in her core or her legs, but she knows a lot about TV. Okay, so there’s two versions. And 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 preconditioned is limp, participating in physiotherapy, working full time and taking care of her entire family. The other one is trapped in a wheelchair and cannot stand up. The only difference was we allowed this one to become deconditioned and we insisted that this one become pre-habilitated. This is an example of the value of behavioral measures in

 

Aaron Boster (51:02)

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. We have to have strong sight if we’re gonna be successful with this disease because therapeutic lag is critical in understanding why we do what we do.

 

Overcoming MS (51:24)

So that’s a good example that we should tell all of our friends if they don’t believe doing actually makes a difference.

 

Aaron Boster (51:31)

Sorry, 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 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 I think that’s very, very important.

 

Overcoming MS (52:15)

So I hope I’m saying that correctly. Is the neurofilament light chain test accurate in predicting prognosis and predicting progression of the disease?

 

Aaron Boster (52:25)

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 marker or 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 A1C. And it’s a biomarker of how well you’ve been controlling sugars, right? So neurofilament light chain, what is that? When you have a neuron, so let’s pretend this towards a neuron, you break it. Either because of trauma, a stroke, or MS, or a 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 a neurofilament heavy chain, neurofilament medium chain, and neurofilament light chain. When there’s damage to the neuron, the neurofibrolyte 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 neurofibrolyte. So this is not useful as it relates to diagnosis.

 

It does look, however, that there is value in neurofemoral light chain in how the disease activity is going. And so it’s becoming increasingly useful, I feel, to start to follow neurofemoral light chain. There’s been an evolution over the last just couple of 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 neurofilm at light chain. It looks at 18 different biomarkers, which in aggregate are actually even more accurate at predicting activity than neurofilm at light chain 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.

 

Overcoming MS (54:44)

What are your recommendations for vision problems and getting vision back or retraining after having some optic nerve damage?

 

Aaron Boster (54:54)

First, I want to treat the optic neuritis. So I want to give you a course of steroids to hasten the recovery, all the 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. 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. so occupational therapists can help you a tremendous amount with that.

 

Overcoming MS (55:46)

When you treat your patients, do you discuss the risk for family members and what information do you provide them?

 

Aaron Boster (55:52)

Yeah, absolutely. I think that’s required. And it’s in keeping with overcoming this MS focus 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 statistically. 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 in an activity 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 goes, smoke up 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 reach goal, which we can’t do yet, would be to prevent children from getting Epstein-Barr virus. So mononucleosis or the kissing virus, glandular fever, those are all the same condition caused by EBV. 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’re able to prevent a generation from getting EBV. I think it might remarkably diminish if not stop MS in that generation.

 

Overcoming MS (57:29)

What’s your recommendation about discontinuing medication as you age? Is it risky? Is there a benefit? When would you discontinue a DMT?

 

Aaron Boster (57:38)

In the spirit of speaking quickly, would always discontinue a DMT at death. 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 they have MS, their immune system is at risk of attacking them. And so I want to keep them on their disease modifying 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 know, 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 modifying therapy.

 

And the authors inappropriately concluded it’s safe to do that because only one third of the people progressed in their disability.

 

Overcoming MS (58:28)

All right, and what are your tips for foot drop? Would you recommend electrical muscle stimulation? How can we treat that?

 

Aaron Boster (58:34)

So let’s talk about some assist devices that we can use for foot drop. Now, physiotherapy is very important for foot drop, but something called a foot flexor, There’s a Velcro strap here with a bungee cord to your shoelaces and it cocks your foot up. All 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. And ⁓ electrical stimulation options. And the most exciting one that I’ve used is something called the CIonic neural sleeve. 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 lower leg of the calf 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 helpful for someone who has not just foot drop, but also has weakness at their hip. And so I like that device very,

 

Overcoming MS (59:46)

So how do you find a doctor that you can be a team with?

 

 

Aaron Boster (59:51)

I think it’s important that you share your perspectives. You share your goals and one of the things that I think is very, very helpful is to share with the doctor your life goals. Say, hey, five seconds, four life goals I want you to help me with. I want to climb Mount Pichu want to finish my master’s degree, want to walk my daughter down the aisle when she gets married. Those are my goals, doc, help me get there. Get them on your team. Another trick that I find very helpful is help the doctor remember who you are, right?

 

So something as simple as giving them a picture of a sailboat because you overheard that they like to sail, I assure you having received things like that, that you remember that. So just help the doctor remember, ⁓ that’s that gal that sails. Try to help create a connection just like you would with any intimate relationship because the more aligned you are, the better team you are in trying to thwart this disease.

 

Overcoming MS (1:00:45)

If you could tell people living with MS one thing that gives them hope for the future. 

Aaron Boster (1:00:54)

I think so, so much to be hopeful for. When my uncle Mark developed MS, he was fixed in a wheelchair before the first drug came out. He didn’t stand a chance and we buried him in his late fifties. An exciting time that if we apply the most effective disease modifying therapies as early as possible, and if we adhere to the healthy lifestyle that is so embodied by overcoming MS.

We now have expectations of making MS boring today. We can make MS boring in many cases today. I want to reassure you that internationally, I’ve never seen ⁓ effort or push to not just try to decrease relapses in new spots, but to crack the code of disability progression and progression of disability and brain volume loss. I assure you that there are researchers galore vehemently working on this right now.

We like to say, if we keep banging on the door one day, we’re going to break it down. hopeful for all of us.

 I really appreciate the opportunity to meet with everyone. Thank you again. I’ll look forward to seeing you guys online sometime in the near future.

 

Overcoming MS (1:02:01)

Yeah. Thank you so much.