Healthy Matters - with Dr. David Hilden

S03_E10 - Getting A Better Understanding of ALS

March 31, 2024 Hennepin Healthcare Season 3 Episode 10
Healthy Matters - with Dr. David Hilden
S03_E10 - Getting A Better Understanding of ALS
Show Notes Transcript

3/31/2024

The Healthy Matters Podcast

S03_E10 - Getting a Better Understanding of ALS

ALS (amyotrophic lateral sclerosis) is a rare but serious condition that affects around 5 people in every 100,000, but due to its devastating effects on both the patient and the caregivers, it's something that certainly merits a deeper conversation.  Lou Gehrig and Steven Hawking may be the two most well-known cases, but it seems once ALS is mentioned, many people are in one way or another connected to it.  But what's actually happening in the body?  What do we think causes it?  What is the progression of the illness like and what are the current treatments available? 

There's still a lot out there that we don't know about the disease, but the medical community is making strides every day to help support those living with the condition to lead fulfilling lives. On Episode 10 of the podcast, we'll have an in-depth conversation with Dr. Sam Maiser, MD, Chair of Neurology at Hennepin Healthcare and an expert on ALS, to help us get a better understanding of the disease.  We'll explore what is known and still unknown, what the experience is like for the patient and caregivers, available treatments and resources, and what the future may hold for those living with this disease.  It's a thoughtful conversation with a dedicated specialist on one of medicine's most challenging topics.  We hope you'll join us.

You can learn more about ALS and find helpful resources for patients and caregivers here.


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Speaker 1:

Welcome to the Healthy Matters podcast with Dr. David Hilden , primary care physician and acute care hospitalist at Hennepin Healthcare in downtown Minneapolis, where we cover the latest in health healthcare and what matters to you. And now here's our host, Dr. David Hilden.

Speaker 2:

Hey everybody. David Hilden here and welcome to episode 10 of the podcast. Today we are gonna talk about a LS the medical term is a myotrophic lateral sclerosis, otherwise known as Lou Gehrig's Disease. To help us out today, we've invited Dr. Sam Miser , he is the chair of Neurology at Hennepin Healthcare in downtown Minneapolis. He's gonna help us shed light on a LS what it is, how we diagnose it, what's the ongoing research, and we're gonna talk a little bit about the human experience of a LS . Sam, welcome to the episode.

Speaker 3:

Thank you.

Speaker 2:

Great to have you here. Tell us what is A-L-S-A-L-S

Speaker 3:

Is a very serious neurologic disease. It's progressive and it's terminal, and it's considered what we call a neurodegenerative disease, which simply means there are cells in the nervous system that we call motor neurons that are getting sick and they die and they cause the symptoms of a LS and it just kinda keeps progressing over time.

Speaker 2:

Where are those cells? Uh , and you know, you know, what is the root cause of

Speaker 3:

It? Yeah, they're in the, the brain and the spinal cord. We don't know what the root cause is . I think if anyone said they, they knew, I think they wouldn't know. We are trying to figure that out. There are theories about what causes it. We don't really know. There are genetic forms and there are non-genetic forms, and in either case, it is not clear why the disease starts and why someone gets it and why someone does it. So we've

Speaker 2:

Known about it a long time. I've, I've, I even mentioned Lou Gehrig, and people of a certain age may remember a certain baseball player named Lou Gehrig . Um, so we've known about it a long time. Could you give us just a little bit of that history?

Speaker 3:

Yeah, I think it was first identified in like the 1860s by a French neurologist, Dr. Charco . That's what everyone kind of reports, but it didn't become really famous worldwide until the 1930s by Lou Gehrig. So

Speaker 2:

What types of symptoms do people have? In other words, what, how would someone even know?

Speaker 3:

Yeah, yeah. The rule we follow in a LS is that it's very variable. There's no specific pathway. It could be weakness in the legs, it could be weakness in the arms, changes in the speaking, and swallowing and breathing. It starts somewhere and then it progresses from there.

Speaker 2:

And you said motor neurons, could you explain what that is? That doesn't, that's not a term. Maybe everybody knows what that

Speaker 3:

Is . Yeah , they , they're , they're cells in the nervous system in the brain and the spinal cord, and they are what control movement. So every muscle in the body are controlled by these motor neurons. So speaking, swallowing, face, arms, legs, breathing are controlled by these motor neurons. So

Speaker 2:

Someone with this disorder has problems with movement. Do they have other neurologic problems, or is it only with movement?

Speaker 3:

It's primarily weakness is what the , uh, the hallmark of a LS is. They can also have like muscle cramps or spasms. They could have little twitches in the muscles. And some people , uh, have non weakness symptoms, such as changes in their thinking, their processing, their personality because of other changes in their brain. So

Speaker 2:

You said earlier on, it's a very serious disease. Could you talk about how it progresses over a person's lifetime?

Speaker 3:

It has to do two things. It has to progressively get worse, and it has to spread. And so what I mean by that is if it starts in the foot , uh, it has to get weaker over time, and then it must spread to the other leg or to the arms or to the muscles of speaking and swallowing. So it has to progressively worsen and it has to spread, unfortunately.

Speaker 2:

And, and over what kind of timeframe does that happen typically? I know there's variations.

Speaker 3:

The most classic is over two to five years. Sometimes it's really fast over months, and then rarely and not often enough. It's over many years or decades.

Speaker 2:

Let's pivot a little bit to how common is this thing? So recognizing a LS , um, how common is it?

Speaker 3:

Yeah, we consider it rare, a rare disease. Um, I think I usually quote , um, in Minnesota, maybe four or 500 people at any given time. Maybe a hundred people diagnosed in Minnesota every year. And so we consider that rare.

Speaker 2:

Yeah. As you know, you're a neurologist and of the rare diseases, this one's, you know, it's , it's not like you see a lot of strokes and you see seizures and you see neuro neurologic stuff all the time. So this is a more rare disease of those rare diseases, though that's not that uncommon, is it?

Speaker 3:

Yeah, I think we consider it rare, but the minute you find someone who knows it, suddenly you find a bunch of other people who have it.

Speaker 2:

And you have a whole clinic of it,

Speaker 3:

Don't you? Yeah , that's why I see it every week.

Speaker 2:

Yeah . So for you, it's not rare, but in the general population. Okay . So it is, fortunately, this doesn't affect a , a massive amount of people, but for those, it , it does affect. It's very, it's obviously , uh, life changing. Is it more common in men, women, younger, older, who gets it?

Speaker 3:

Yeah, it's, it's most common in the fifties and sixties, and then it kind of spreads out from there. My youngest is in the mid twenties and my oldest is 90, but the majority are in their fifties and sixties.

Speaker 2:

That's when it first gets discovered.

Speaker 3:

Yes. And it's slightly more common in men, not much. And uh, the older you get it , the, it becomes more equal. In men and women,

Speaker 2:

Do we think it's equally spread out in the, the world, or are there certain pockets or certain communities that get it more? Or is it an equal opportunity disease?

Speaker 3:

We generally think it's pretty spread out, really hard to study because there are genetic forms, like 10%, it runs in family , so there are pockets of it, but in general, we tend to think it can affect anyone anywhere at any time . So

Speaker 2:

I'm fascinated by the, well, frankly, the lack of knowledge in the medical community and in the world about what causes it. I , we know that the problem is there's, those motor nerve cells are damaged in the spinal cord, but do we have any inkling on what causes those cells to malfunction?

Speaker 3:

Yeah, there are some really, I , I think good theories. I think some people worry about environmental exposures. We know it's more common in military veterans. We see it in professional athletes, and we're not sure why , um, there are , you know, either something wrong in the DNA or some of the structures of the cells. So there's, it's like a whole group of theories. And some are more popular than others. Some think maybe there's a problem with the immune system that kind of attacks these cells. Um, and so all the studies and research going into it kind of try to address those different theories. How

Speaker 2:

Do you diagnose it? It's

Speaker 3:

Really hard. Uh, it takes an average about a year to 18 months before it's finally diagnosed. And that's primarily because there's not enough knowledge out there by people, by primary care doctors, even other neurologists. It can take a while , and by the time I see 'em, it becomes more clear that it's the right diagnosis and it's a clinical diagnosis. There's no blood test to prove it, there's no scan that proves it. It's a clinical diagnosis, meaning what they tell me , uh, what's been happening to their body, and then what do I see when I examine them. So

Speaker 2:

Patients maybe have been talking to their family members, their doctors, people in their lives, maybe they've gone to some doctors and they say, I have this weird symptom. And it just takes a great long time for that, all the pieces to get put together. Is that a fair statement? That

Speaker 3:

Is right.

Speaker 2:

Yeah. If you, if you had a blood test, you know, somebody comes in with a, a weak finger or something, or a a , a subtle neurologic change. If there were a blood test or a quick X-ray, you'd be doing it. But there isn't one. There

Speaker 3:

Isn't, not yet. We're, we're , I hope there is sometime soon, but there isn't now. Okay.

Speaker 2:

So it's a challenge to diagnose a LS but once you have done that, could you talk us through the stages of the illness that people can expect?

Speaker 3:

Yeah, sure. It, it primarily depends on where it starts. And so , uh, the most serious sort of form of it is when it starts in the speaking and swallowing. Um, because the things that matter most to life are swallowing and breathing. And when the muscles of speaking and swallowing are affected, first, patients tend to progress faster. And so as the disease progresses and spreads throughout the body, people living with a LS , uh, will need to make decisions about how to get their care. And so, for example, when the swallowing muscles get so weak, people are often have to decide whether they get a feeding tube. So you said the

Speaker 2:

Muscles , uh, of, of, of speaking and swallowing. I know about, about those, but maybe flesh that out a little bit for people they don't think of speaking as a muscular activity.

Speaker 3:

Yeah, yeah. So what , how it might start is they may have a softer voice, it may be quieter, they may be slurred, and over time it gets to a point where they, they cannot speak

Speaker 2:

Because so , so the , the muscles that are controlling your jaw and your swallowing and all of that, your tongue, your tongue , those are the first ones in some people to be affected .

Speaker 3:

That's right. And so when the tongue and the muscles of the throat and the face get weak, we need to figure out how to help them communicate and how to get nutrition. And so when that gets into the advanced stages, then that's when we talk about feeding tubes similar, the, the diaphragm is the major muscle of our breathing, and that muscle gets weak too. And so there will be a time in the later stages where people living with it will have to decide how to support their breathing.

Speaker 2:

What about when the disease starts with, say, my arm is weak. How does that progress?

Speaker 3:

Yeah. So that if it starts like in the right hand, it will slowly get worse over time. Where they'll need more help with getting dressed and getting cleaned and feeding themselves and, and driving cars and things like that , uh, before it starts to affect their, their left arm or their legs. And so oftentimes it comes with a lot of equipment and other things that support the weakness that's happening. So using a cane and a walker and a wheelchair or other adaptive equipment to try to continue to live a normal life.

Speaker 2:

Do most patients pursue all of these , uh, interventions? The

Speaker 3:

Majority do, some don't, but the majority do.

Speaker 2:

Even , uh, the, the feeding tubes and , uh, supporting your respirations. Most do.

Speaker 3:

Yeah. Most do.

Speaker 2:

Okay. So there's stages of this very progressive disease starts out with one kind of symptom in one part of your body, and it progresses, progresses progressive. Could you tell us what happens late in the disease? How do people die from

Speaker 3:

It? Most people with the diagnosis fear that they'll have this really terrible end of life, and that doesn't have to be the case. So the most common ways people die are from the breathing failure when the muscles of breathing get so weak where they just can't sustain life. And so we do what we can to support them, and we give them medications. I often recommend the use of hospice to make sure that they aren't suffering and are, and are comfortable during the dying process. The other less common way is when some people say, I don't want a feeding tube. And they decide not to eat and drink. And so the body starts to shut down from not getting food and water. And again, it's most , uh, comfortable at the end of life if you have the , uh, support and care of a hospice team.

Speaker 2:

And you do ensure that part that you, you do ensure that people's wishes are followed and that you strive for comfort.

Speaker 3:

Absolutely. I take that very seriously. A lot of people don't wanna ask about it, so I'll bring it up. Have you ever thought about what this is gonna look like at the end? Are you worried about what it's gonna look like at the end? 'cause I don't want them , them to think day after day that it's gonna be some terrible process and try to assure them that I'm with them, I'm here with them, and I want 'em do whatever we can to make sure it's as comfortable and as peaceful at the end of life as possible.

Speaker 2:

I think that's a key point so that people know what to expect. And so thanks for that. Before we go to a break, Dr. Meiser , can you talk about what some common misperceptions about a LS are that might be floating around in the general public? I would

Speaker 3:

Say the , the biggest is that there's nothing we can do about it. That you just get the diagnosis, go home, get your affairs in order, and then prepare to die. And that makes me sad when I hear that. And , um, and so I would say there is a lot we can still do for the disease, even if we can't yet cure it. That's the best part of my job, is that we can still help people living with a LS .

Speaker 2:

And that's what we're gonna focus on when we come back from a short break. We've covered the basics of what you need to know about a LS , otherwise known as Lou Gehrig's disease. So far with Dr. Sam Meiser , chair of neurology at Hennepin Healthcare, when we come back from our break, we'll cover current treatment options, some personal stories that hit close to home, especially for me, and where you can find support for loved ones or families that are going through this journey together. Stick around with us. We'll be right back

Speaker 4:

When Hennepin Healthcare says, we are here for life. They mean here for you, your life, and all that it brings. Hennepin Healthcare has a hospital HCMC and a network of clinics both downtown and across the West Metro. They provide all the primary care and specialty care you would expect to find, but did you know they also have services like acupuncture and chiropractic care available at many of their primary care clinics and at their integrative health clinic in downtown Minneapolis? Learn more@hennepinhealthcare.org. Hennepin Healthcare is here for you and here for life.

Speaker 2:

And we're back talking with Dr. Sam Miser , chair of neurology at Hennepin Healthcare about a LS. Sam, talk to us, if you could, about the current research into a LS. We know that there is no cure for it currently, but what are some of the current advances in the

Speaker 3:

Science? Yeah, there are tons of things happening with research right now. It's like exponentially growing. I kind of think of, there's two main categories. There's disease understanding what causes a LS , why is it happening, why do people get it? So that's very, very like basic kind of research. And then there are a lot of what I would call clinical trials where you give someone a treatment and see if they get better or does it stop the disease or slow down the disease. And some of the most recent advances are when we have found someone with a genetic form of it. We know it's something wrong in their DNA and we design a treatment that tries to slow or stop or improve their disease. And so that's, that's exciting. The FDA hasn't approved drug out there because of that kind of research. And if you don't have a genetic form, there are tons of medications and other interventions being studied in the US in the world right now that target some of the theories of what causes a LS . Is it the immune system? Let's give 'em something that affects the immune system. Is it something else? Uh, in the, in these cells, these motor neurons that are, are malfunctioning, let's target that. And so it's happening and , uh, we're excited about it. I think we will see more meaningful treatments coming soon so that people can at least start living longer with the disease, if not cure it. So

Speaker 2:

Most of these treatments are intended to slow the progression, or are they intended to treat a specific symptom? Uh , and eventually it would be good to have a cure. Yeah. But many of these aren't quite there yet,

Speaker 3:

Are they? I think realistically it's mostly to slow down the rate of progression so that people can simply live longer and maybe die from something else.

Speaker 2:

Let's talk of , you know, pivot to two treatments. So if someone comes to your a LS clinic early in the diagnosis, what do you start with? And then as the disease progresses, what are the treatments?

Speaker 3:

I, I talk about the non-drug and the drug treatments that help a LSI think it's universally known that the things that help people living with a LS are to follow in a multidisciplinary clinic where you see a doctor, physical therapist, occupational therapist, speech pathologist, like the whole team, and then maintaining , uh, nutrition and helping support your breathing. Those are probably the most helpful things to help people live the best life possible.

Speaker 2:

I couldn't agree more about that full multidisciplinary team as we have here. Yes. In in our big hospital in downtown Minneapolis or like a a lot of people don't have access to that. Is that true? Do you recommend that people, whatever it takes, plug into something like that?

Speaker 3:

We do. I think that is a international recommendation and we work very hard to get people to have access, whether it's through video visits or in person or whatever it takes to get in, because we see them about every three , three months. And that it just helps us stay in front of the disease to focus on their function and their quality of life and their length of life when possible.

Speaker 2:

You mentioned some medications. You mentioned that there's even an FDA approved medication. Uh , say more about medications if you could. Yeah,

Speaker 3:

There are, there are technically four FDA approved medicines. There's one that's only for a specific genetic form of it that only affects 1% of a LS patients. So it's a small, small amount. And then there are three others that span from the 1990s to 2017 and 2 20 22 . So we've had some really recent developments. They're not cures, they're not great, but they're, what we have and what all three of those other drugs try to do, and I think they do, is they just slow the disease down by a little bit to give people a few more months of life and maintain their function for a little bit longer.

Speaker 2:

Before I move on, what's your thought about the level of , uh, attention being paid to a LS Because it is an uncommon disease, it's even a rare disease, and yet it's a devastating disease. And so I've heard a lot in my personal life and in my professional life that, that it doesn't get always the attention it ought to from research community or from funding sources. What are your thoughts on that

Speaker 3:

Compared to 10 years ago? It's a lot better, but I think you're right. People who are living with it right now and their families or the researchers want more primarily because of the speed of the disease and what it does to you and your family. And so I think we're seeing more money go into it. Um, there are more studies , uh, cropping up. There are , there's more patient advocacy groups. There's legislation changes to help get more funding for research. And yet, because it is considered rare, it's probably still not enough in my opinion. Yeah,

Speaker 2:

I I think I might concur with that. It's, it's one of these big challenges in getting an , um, advancing the research for a disease that progresses relatively quickly for so many people. I'm gonna shift a little bit to a discussion about that multidisciplinary approach and tell you , uh, I'm gonna start that out with a little story of my own cousin. My first cousin is a gentleman named Steve Harus , who died just recently. He was living with a LS for well over a decade, pushing 20 years. So he was an outlier. But my cousin Steve, was a professional musician. He trained in playing the French horn, and for a while there he couldn't, you know, press the keys. And then he eventually got onto playing a horn that did not have keys. And in his journey with a LS, he wrote a book with his eyes because he communicated with his eyes. It's a book called Shells. I actually encourage people to look at it. Shells, he was a man of faith, active in , uh, his mind in the community, even while living with a LS he was a , an aficionado of classical music. And I remember one time going to the Chicago Symphony Orchestra to hear Beethoven with my cousin Steve, while he had a LS he sailed a sailboat. He was a sailor on Lake Michigan. And while he had a LS there was an adaptive sailboat so that he was able to sail a sailboat while he had a LS . So he led an active life, but Steve was an outlier. He lived 18 years. Could you talk a little bit about what people can do when they're in a multidisciplinary , um, approach to their lives?

Speaker 3:

Yeah. This is a big interest of mine. Like the other part of research I do is quality of life research and a LS . And so how do we support that? And most of it has to do with helping them still function despite what's happening to their body. Like sailing a sailboat, for example. Um, as well as supporting their care partners and their family. And so, because of the advances in technology in the use of a multidisciplinary clinic, people can do some amazing things because of the equipment. Like you said, write books. I've had patients write books. I've had a patient , um, have his own podcast and other things I

Speaker 2:

Would wanna do that

Speaker 3:

<laugh>, you know what it's what it's like to live with, with a LS um, write songs. Uh , in Minnesota, people like to hunt, right? So our occupational therapists are able to help them , uh, use a , uh, a hunting gun despite hand weakness, right? Like to do the things that were bringing them joy before they had a LS How do we maintain that despite weakness in their arms or their legs? And that is, that is one of the things that brings me joy in the job. Being able to ask the people who have a LS what brings you joy and then how can we think outside the box to help make it happen? And sometimes it's not possible, it's just simply not possible. But we work very hard to say, okay, let's be creative. How can we get you to do those things that are meaningful to you and that you wanna keep doing for as long as possible? Talk

Speaker 2:

A little bit if you could, about, about the brain function. 'cause in, in Steve, Steve Harus , my cousin, his brain was working fine till the very last day. He was completely with the program. His brain worked. I know that isn't the case with everybody, but it's primarily a , a motor problem. Um , a muscular function. So if people's brains are there and they, and they know what brings them joy and how, how can we support that quality of life? When your body's failing you, and let's be honest, it's not working anymore, but your brain is, how do you support those folks in your clinic? Who do they talk to? What, what's the next step?

Speaker 3:

It it , it's really the whole team. 'cause it kind of depends on what does bring them joy. So I may ask about it and then I say, okay, I need to talk to our , our speech pathologist, or something like that. A big part of that might be recognizing, okay, this brings you joy. How can you adjust as a person to still find joy, even if it's different? 'cause people who adapt to the changing the changes in their body, in my opinion, do better. They just have a , have a better outlook. They're able to find joy and love and whatever it is, they're able to get out of the house and do things. But it requires them to say, okay, for me to go out to the state fair, I need to bring my walker, or I need to bring a wheelchair. 'cause I , I want to go, I want to see the people, but I need to accept what's changing. Doesn't mean it's easy, but when they do it, I see that they're able to still find that joy.

Speaker 2:

Do you have mental health support systems for folks to do that? How would you I don't know how I would do that. Yeah. Although, again, I look at my cousin, he had, he adapted incredibly all the way to the point where he saw the birth of his grand babies sitting on his lap, even when he had a LS So he adapted incredibly. But how did , what emotional supports do people need to do that?

Speaker 3:

Yeah, we, we do have the emotional support in the, in the clinic and a lot of clinics have some psychologist or therapist, social worker who can check in on that or , uh, connect them with a resource in the community sometimes for themselves or for their family. And then there are groups throughout the nation, like the a LS association has support groups where you can go and meet other people with a LS , your partner can go meet other partners, kids can go meet other kids. Uh, so you can talk about what is it like or what, you know, gimme some ideas. I wanna be able to do this. What have you done to do that? Sometimes the best ideas we hear are from patients who went to a support group or heard it from another patient and, and ask me, can I do this too? And then we try to figure out how to do it. And so it kind of depends on how much they're willing to, to kind of engage in those support systems to, to be creative and and flexible with how they, how they live their

Speaker 2:

Life. I wanna delve a little bit more into caregivers and family, because even in my personal story of my, my inspiring cousin, Steve, there was a woman who is, is an absolutely exceptional and inspirational woman. His wife, her name was Suzanne Anonymous . How do we support the caregivers, the family members? Because Suzanne lived with her husband's a LS for near for all those years as well. And the, the toll it took on her and the strength I saw in her was inspiring. But what about caregivers?

Speaker 3:

Yeah. To quote a patient, he got the diagnosis, but his family got the disease. Mm-Hmm . And so what that means is he is the one living with what's happening to his body, but it's affecting his whole family. And so in the state of Minnesota, we're very fortunate that there was a senator that had a LS and died and got legislation changed for there to be funding for home care, basically to support the care partner. There are respite programs in the state of Minnesota. Uh, there are , uh, other ways to get what we call quality of life grants. And , and some of this is unique to Minnesota, but not necessarily only in Minnesota. And what we're hoping to show is that this, these kind of resources where you can get hired help to come give spouses breaks is, is uh, is something that we would like to show is beneficial to not only the person living with a LS but their, their family and their support structure. Before

Speaker 2:

I let Dr. Miser go, we are gonna talk a little bit about support services in the community and we'll put some links to those. But before we even get to that , I wanna pivot just slightly to you. Why did you get into caring for patients with a LS and how do you support yourself or your care team?

Speaker 3:

Yeah, thanks. Uh , it's the people. I have no personal connection. No one in my family's ever had it fortunately. But when I've met, started meeting people living with a LSI was impressed by them. Um, sort of the humanity that they bring despite what's happening to their body. Uh, I always say it's a terrible disease that affects wonderful people. And so they're resilient. They can show joy and the sadness and everything that happens just normally as humans when you're faced with something devastating. And so getting to meet these people, be part of this journey, this tender moment of their life and their family was what really inspired me. And then there was the sort of the professional part, like, it's interesting what we have to figure this out. Where is the research? Why is this happening? And so I think it's the people mixed with the , uh, the sort of the scientific draw to it that's really, really inspired me. And I take care of myself by having a wonderful team, working with a multidisciplinary team that we can talk about stories. Anytime we lose a patient , uh, we write them a card, we kind of remind ourselves of the funny things that they did or said in clinic to try to bring the , the joy back of , of with who they were and what they meant to us. Um, 'cause if I did it in isolation, I , yeah, I think I'd be tired. I'd be burned out as a, as a doctor. Uh , but I'm not because I have a wonderful team and , um, a great support structure at home as well.

Speaker 2:

I can vouch for the wonderful team of neurology at Hennepin Healthcare under the leadership of you, Sam. Uh , and so thank you for that. This has been an absolutely great discussion. I've got two things I want to do before we leave. First one is, what resources are available for people

Speaker 3:

In the United States? The a LS Association is a huge resource. They have a great website. Um, if you have a LS you should get registered with them. You can get involved in research and other support structures. There's also the Muscular Dystrophy Association, which is very similar to what a LS Association does through other patient driven resources. Uh, I am a LS there's this thing called your a LS guide. There's an app called roon that has recorded videos from neurologists and providers and patients , um, about a LS and what do you do about this or that? Or should you take these medicines? Should you get a feeding tube? Those are the the things that come to mind that I recommend to my patients.

Speaker 2:

Listeners, we will put links in our show notes to many of what Dr. Miser has just mentioned. And the last thing is, what would you leave us with? If you had one thing you could leave, one thought you could leave with listeners, what would that

Speaker 3:

Be? The thing I would say is there's always something that we can do. And that's not just a LS but that's just a lot of serious neurologic diseases. Until we can get meaningful treatments and cures, let us help you with what brings you joy, your quality of life, what matters most, and partner with us to, to live the best life possible despite what's happening to your body.

Speaker 2:

Thank you for that. We've been talking with Sam Miser about a LS. He is the chair of neurology at Hennepin Healthcare. Sam, this has been a great topic. Thanks for being here. Thank

Speaker 3:

You. A

Speaker 2:

LS is a hard topic, and I really appreciate you sharing your thoughtful comments and your expertise about the subject with all of us. On our next episode, we're gonna be talking with cardiologist Dr. Rahan Kareem. He's an electrician of the heart, and we're gonna be talking about pacemakers, heart rhythm problems, atrial fibrillation, and much more that's coming up in two weeks. In the meantime, be healthy and be well.

Speaker 1:

Thanks for listening to the Healthy Matters podcast with Dr. David Hilden . To find out more about the Healthy Matters podcast or browse the archive, visit healthy matters.org. You got a question or a comment for the show? Email us at Healthy matters@hcme.org or call 6 1 2 8 7 3 talk. The Healthy Matters Podcast is made possible by Hennepin Healthcare in Minneapolis, Minnesota. Please remember, we can only give general medical advice during this program, and every case is unique. We urge you to consult with your physician if you have a more serious or pressing health concern. Until next time, be healthy and be well.