Prioritizing Comfort and Finding Laughter with Phil Rosenthal

Episode Transcript

Dr. Correa:
From the American Academy of Neurology. I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain and Life Podcast.

Dr. Correa:
Welcome to the Brain and Life Podcast. This week it's just us. Katy's on vacation and we're moving forward. So I was thinking, and let's have a discussion together, what is your streaming and TV preference when you just want to relax and chill out? Is it food, travel shows, Bravo dramas, nature shows, or maybe watching along the shows kids in your families watch.
I know my wife and I enjoy a variety of comedies, of course some occasional crime dramas, everyone gets into those guilty pleasures. Not so much Bravo TV for me if it's not cooking. And so I sneak in as many food and cooking shows as I can, definitely more of an interest of mine than my wife.
But between laughing along with a show called Everybody Loves Raymond from a little bit of a while back, probably dating myself a little bit there, and then later catching the Netflix series, Somebody Feed Phil, again, I was sneaking in those food shows. I learned about the writer-producer, Phil Rosenthal, then I later found out about the story of his mother's own struggle with ALS. We've had several episodes talking about ALS in the past. So if you want to learn more specifics about the condition, its diagnosis, please go back and check out those episodes.
In today's episode, we'll actually start by first hearing from our medical expert about key issues from families and caregivers about quality of life and other challenges in ALS. Then we will hear from Phil, about his and his family's experience, he is a caregiver, and his mother's own challenges, and particularly around the discussion of dignity and comfort as the condition of ALS progresses. We'll go back then to our medical expert to reflect on some of those challenges and decisions that families make together with those they love who live with ALS and in its later stages.
We really hope you enjoy this episode and please let us know some feedback about this episode and more you want to hear about.
So today we're starting our discussion with our medical expert and I'd like to introduce you Dr. Bjorn Oskarsson. He is an Associate Professor of Neurology, and a Nerve and Muscle Disorder Specialist at Mayo Jacksonville in Florida. And we're here today to talk about some of what he has learned, the community living with and supporting individuals living with ALS.
Bjorn, thank you so much for joining us today.

Dr. Oskarsson:
It's a pleasure to be here and I really do appreciate the invitation. This is a topic that's very close to my heart.

Dr. Correa:
Now, you've done a lot of work with clinical trials, and trying to also take a look at better ways to diagnose, and more accurately and quickly diagnose, ALS. But today I really wanted to get into hearing from you and the work that you've done to learn from individuals in the community with ALS.
What are some of the key challenges that families or individuals share early on in their diagnosis?

Dr. Oskarsson:
There's a lot of fear about the unknown. So there's often a lot of worry where knowledge can help people. And again, really there are some real fears that might become an issue in ALS, there are other things that people are worried about that they don't maybe need to be worried about, but a lot of things that can happen that probably won't happen for a certain person. So talking through what people are worried about and addressing those things. Often with knowledge we can reduce the worry.
One thing that we already touched on was pain. Pain can be a problem, but most people with ALS never get pain. And those people who do get pain, often it's just muscle cramps, which we've developed some good drugs for and can treat fairly effectively now. But there can be other things, and again, worry and fear would be, I think, the first thing I try to address.

Dr. Correa:
And I think we'll hear it upcoming in my discussion with Phil, but he really shared that it was such a challenge for them at the beginning, getting what he described as almost like a very scary preview of what was to come in the future in their discussions and learning.
So, sometimes when is some knowledge too much knowledge, or how do you gauge what level and how deep of a discussion to start off with on day one, and in following visits?

Dr. Oskarsson:
Many people have an idea about what ALS is, and know it as a deadly disease, and we don't often need to dig into all possible bad outcomes that can occur. We try to maintain a reasonable set of hope, and an outlook where we focus on the things you can do, things that are going to be able to do, achieving certain goals. And again, there's the science that we do keep advancing our treatments.
We do have our first [inaudible 00:05:46] in ALS today. Not everyone getting ALS today necessarily is going to die from it. We do have these drugs that work for certain, rare unfortunate genetic forms. We're starting to get a grip. And again, I think there's a lot of hope and that's hope through medications.
Now what we often more talk about is hope of achieving milestones, getting to a loved one's wedding, having a grandchild born, or realistic goals that we can achieve, and that are going to be meaningful, and we try to focus on those things that are achievable, and keep as optimistic tone as we can.

Dr. Correa:
And right at the beginning, what are some of the key things that you want caregivers and family members to either both hear, or really open up as possible areas of discussion around what they can do now and what to expect?

Dr. Oskarsson:
I try to emphasize that we are available and not just we here at Mayo Clinic, they're also community organizations, quite a few patient organizations support people with ALS. So there's a lot of different resources out there. There's support groups, peer support is often really valuable for caregivers and patients. That's really for both of them in these dyads that people form with their caregivers.
We provide, again, information about what we are going to be doing and who are the people who they're going to have on their team. who can help if there's a speech problem, who can help with the swallow problem, who help with breathing, with coughing, who can help with gait issues, who can help with requiring the best types of equipment to enable people to keep communicating, and writing, and speaking for as long as possible? So trying to give them a toolkit to tackle projects, because these are symptoms that can be challenging, but many of them can be addressed in a meaningful way.
Another challenge that I think many caregivers with ALS face is that we have limited support for the in-home healthcare that people need to live well with ALS. And that's a challenge for us as a country. We don't really provide enough custodial care. Having access to good caregivers in the home is a big challenge.
Again, there are aspects of ALS care that's pretty advanced also. Many of our patients will choose to use feeding tubes, ventilators, and lots of other equipment, which requires a skilled caregiver. And the support for these qualified people is not quite what it needs to be, so hopefully that's something which we can find ways to provide to the patient and families who need it that wouldn't be possible to do today with the existing technology. It's just a resource allocation question.

Dr. Correa:
And do you think that is a place where individuals in the community should be working with other patient and community organizations to push for advocacy both at the state, and regional, and hopefully national level for that support, or are there other ways that they can get involved to move forward these resources?

Dr. Oskarsson:
I believe what you just said is the right path. We need to lobby for these things. There's a document for that we'll put in the medical necessity and demonstrate that that's going to be coming this year. That might be a helpful stepping stone for this.
There's also the National Academy of Sciences and Medicines report, Living With ALS, that came out, I'm going to say last year, that really addresses many of these gaps in healthcare that people with ALS have. And that report covers both the science, and medicine, and the care of people. So I think it's a good tool to consult. It's one document with everything so it's not as detailed and prescriptive as this coming home health guidance will be.

Dr. Correa:
So in the show notes for our listeners, we'll include links to information about ALS through the Brain and Life, and then also information from other patient advocacy organizations where you can learn about really excellent information about ALS, but also get involved with advocacy.
What I'm hearing is even though many in the community might know some about ALS, and that might open up many fears about what comes in the future, each person may not necessarily have all the things that they're either thinking of, or may have heard of. So each person can have a unique course and/or progress, and each of the different challenges and symptoms they may have, there are teams, in some cases there are treatments and therapies, that might help them along the way.

Dr. Oskarsson:
Yes, there's a lot of things we can do.

Dr. Correa:
That's good to hear. Now we're going to go and now to our discussion with Phil to hear about his and his family's experience, and then we'll be back with Dr. Oskarsson in just a bit to talk about how to manage, and possibilities for some of the specific challenges that Phil's family encountered.
Welcome back to the Brain and Life podcast. So if you've been watching on Netflix or you like streaming a lot of TV shows, you might know our upcoming guest. I'd like to introduce you to Phil Rosenthal. He's a writer and producer that many of you may have heard or know as a Creator and Executive Producer of the hit show, Everybody Loves Raymond as a bit of a travel and food enthusiast. Myself, I also enjoyed his Netflix series, Somebody Feed Phil, where his warmth, humor, and curiosity brings people and cultures together.
Thank you so much, Phil, for joining us here today.

Phil Rosenthal:
It's a pleasure to meet you Daniel. Nice to be here.

Dr. Correa:
So beyond your professional accomplishments, you have been both personally and deeply affected by being in a family with someone living with a neurologic condition and helping support them.
But before we got there, I wanted to learn more a little bit about what started your interest in sharing your story and comedy on TV.

Phil Rosenthal:
Well, if you're talking about Everybody Loves Raymond, it started when I met Ray Romano, and we'd had a quick conversation over lunch to see if we'd be compatible.
So it was a very friendly lunch and I was just asking, "tell me about yourself" as I would with you if we just met and we were going to work together. So he told me about his family life and I thought, "Wow, this is actually a great starting point." And what I didn't know about the actual characters in his family, I filled in with the characters for my family. And so that was really the start.
And I learned by doing that mining your own personal life actually makes it universal to people, because your specifics are relatable to other people who have their own specifics, but it turns out you relate to other people's specifics, because you understand.
What I mean is, let's say there's something that drives you crazy, or someone in your family crazy. Even if that thing doesn't make me crazy, I relate to your crazy, because I know what it's like to feel that about something else. Does that make sense?

Dr. Correa:
Yes, completely. I think that is sometimes what I love the best about so many of these different shows, to deeply dive into someone else's quirks and intricacies of their life really makes our own feel a little bit more relatable.

Phil Rosenthal:
That's right. And that carried over into Somebody Feed Phil as well in that I'm a specific guy. I'm not putting on a character that I think the audience might like, it's just me. And so you see warts and all. You see there's things I don't like to do, there's things I'm afraid of, there's things that my brother makes me do and that drives me nuts.
So you see, hopefully, a real human being. And then, even though obviously you are different than me, you might relate to me, because I seem like a real human being.

Dr. Correa:
Well then let's hear some about your own reality. What has been your own personal connection to people living with neurologic conditions in your life and family?

Phil Rosenthal:
Oh sure. Well, my mom. My mom passed from ALS and that's a terrible, terrible disease that I wouldn't wish on my worst enemy.
The problem that I see, and you're a doctor so you can tell me if it's gotten better, she passed about six years ago, I think, is testing for ALS can take years, because you have to rule out everything that it could be before you are diagnosed for ALS, almost by default.
It isn't this, it isn't that, it's not this, it's not that. And it's tests, and tests, and tests, and tests until you come to the terrible conclusion that you have ALS, and there's no cure for that.

Dr. Correa:
I think many people for many reasons have a lot of reasons. They get delays in either getting all the tests, or working through that whole process, sometimes even getting to the right specialist. And often a lot of that work they do is towards the goal of trying to find some other diagnosis that could be slowed down or treated in a different way.
I think in some places, when people get to the right teams, they can get much quicker through that, but sadly, there are still many people who have a big delay in their diagnosis.

Phil Rosenthal:
But then it almost doesn't matter, because there's no cure. So it's just this terrible, debilitating disease and you get these meetings, "Oh, here we want to show you what this iPad is like that she'll be able to control with her eyes, because nothing else will work in a few months." That's depressing.
"Here's the wheelchair she'll need. You can order this. Here's the thing, she'll need to breathe. Here's the thing..."
And this is while the person is still functional, you're getting these horrible previews of coming attractions and there's no way out.

Dr. Correa:
And what do you remember about the start of that, just question of what was even going on with your mother and...

Phil Rosenthal:
Well, she would fall. She would fall down. At first you'd think look how clumsy. You think it's nothing serious. Everybody falls once in a while, but then it keeps happening, and then there's other signs, and, "Why is her hand shaking when she eats?" Why is this? Why is that? So you start with all the...
And in the back of your mind. You're like, "Hope it's not ALS. Hope it's something else that there's a cure for." So it's very sad.

Dr. Correa:
We hope that science moves forward.
And for our listeners, we've had a few episodes that talk about the diagnosis of ALS, some of the treatments and where that research is going.
But, Phil, for your mother, as you talked about, there was this period of time that you and the family would get these scary previews of what was going on.
Did it help to have some of this discussion about things that can be done for her quality of life, for ways that you can help? What were the challenges you encountered in that type of discussion?

Phil Rosenthal:
The challenge is emotional more than anything else. The challenge is, "Oh, no."

Dr. Correa:
Absolutely.

Phil Rosenthal:
"This is a one-way street. We're not getting better."
And, is knowing what's coming better than being surprised by the ultimate death of your loved one? I don't know. I really don't. It just... I wish there was a cure. And so we try everything we can and support any research.
We're living in a time right now where medical research is almost frowned upon by the current administration. It's an insane way to be. I don't get it. I don't get why it's political to want to save lives, and acknowledge medical breakthroughs, and promote science. I don't get it. It must be terribly frustrating for you and other doctors.

Dr. Correa:
Absolutely. And I think that's why right now we feel it's even more important to put the information into people's hands, to understand about medical conditions and the resources out there. And in the upcoming section of this episode, we'll be talking with Oskarsson about the communities and family's perspective about caregiving.
But for you, as someone who works in your writing and your production to bring joy and laughter to audiences, how did you navigate that emotional weight of caregiving while maintaining creativity in your public-facing work?

Phil Rosenthal:
We were able to compartmentalize. Thank God for that. I'm going to be sad when I'm thinking about that and dealing with that, and then thank God I have this outlet for joy.
All we can do is try to be as happy as we can be given the circumstances that we're in. And I always... I'm the luckiest person you're ever going to talk to. I really believe that. What I get to do in life, and the life I get to lead, and the success and luck that I've had.
The only thing that makes me not feel guilty having a life that's so much better than so many people who suffer, is to try to give back and to try to give as much as I can to as many people as I can. That's really all... I think it's responsibility. That's how I feel.
If you are lucky enough to be as lucky as you are, and be in the top percentage of people in life who get to have a beautiful life, it's your responsibility to extend a little bit of that good fortune to others.
And, out of respect for my mother, and out of my love for her, I got a window into what ALS was. We don't understand that until it hits home usually, but now I did a tour, a book tour. All proceeds from that book went to ALS, for example.

Dr. Correa:
I'm sure your mother saw the joy and the purpose that your work brings to you, and how much you've put forward out to help support other places, other communities, and now the ALS community and research. And I'm sure that's exactly what she would want for you, and I'm so glad to hear about that work.

Phil Rosenthal:
Yes. And now I have other friends with ALS that I've tried to help also. Again, I wouldn't wish it on anybody. We have a lot of diseases to cure. There's been great inroads in cancer, but ALS is almost defying medical science. I don't understand it. I know there's a correlation between that and other neurological diseases, like MS. If we can find one cure, then maybe there's a chain reaction to finding the other cures. Is that right?

Dr. Correa:
Yeah, that's why it's so important that we work towards funding research across the different neurologic conditions, because as you said, if we figure out why certain parts of the brain are getting injured or have degeneration, it can help lead to possible directions and pathways to help other conditions.
We've often looked at them so separately and so important now that we're bringing these communities together.

Phil Rosenthal:
Great. Well, good luck.

Dr. Correa:
I know we have a lot of work to keep moving forward. And for you and your family and in supporting your mother, what do you feel like were some of the most surprising challenges that came along?

Phil Rosenthal:
I don't want to get morbid.

Dr. Correa:
No, we're here to listen to all of it.

Phil Rosenthal:
Certain steps along the way, my mother's like, "Enough, just let me end."
If you're presented with this dark tunnel that you're about to go down and it's going to get worse, and worse, and worse, and worse, can't blame someone for saying, "So there's zero hope of getting better. How about I say goodbye now?"
Like when they said, okay, you obviously can't, "You're having trouble swallowing, so we're going to put the feeding tube in." She wanted to end it there, and then we were convinced that feeding tube you can still have a good quality of life. Well, in her case, not really.

Dr. Correa:
An example that it's that much more important to really have that discussion of what that quality is for each person in that family.

Phil Rosenthal:
Yes. Some people will say you preserve life no matter what. My family doesn't feel that way. It's about quality of life.

Dr. Correa:
And so it sounds like, then, for you and your mother's situation with ALS, or thinking forward to any other experience in your life with someone living with a degenerative condition, it was important to learn about the things that make her or that person comfortable to learn about those questions, to ask the doctors about what are the options to address their comfort and their quality of life.

Phil Rosenthal:
I'm not advocating for anything. This is such a personal, the most personal, decision. Everyone is different. Everyone's belief system is different.

Dr. Correa:
And beyond morphine and options, again, after our break here we'll have a discussion with Dr. Oskarsson about the options for quality of life in these types of situations and supporting those we love, Phil, I really want to appreciate and say thank you for taking the time to sharing some about your family's experience and story, and leave us with a little bit of hope. Tell us what's next and you're looking forward to for you and your family.

Phil Rosenthal:
Well, life goes on.
I honor my parents with a living tribute in a little diner that we're opening in my town, and it's going to be called Max and Helen's. And we've made a logo of them from a photograph, and she will live forever in our diner and in our hearts.

Dr. Correa:
That's beautiful and I hope to make it out and try some of your parents' favorite dishes.

Phil Rosenthal:
That's great. Thank you, Daniel. It's a pleasure talking to you.

Dr. Correa:
Thank you.

Dr. Correa:
Are there questions you have about living with and thriving with one of many neurologic conditions? We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record an audio message and send it to blpodcast@brainandlife.org. And of course, you can also reach Audrey and I on social media or the Brain and Life team at Brain and Life MAG. That's M-A-G.

Dr. Correa:
Now we're back with Dr. Oskarsson.
And, Bjorn, Phil shared with us really a lot of frustration with managing pain issues and comfort issues for his mother. Earlier you were saying not everybody with ALS, and actually many patients with ALS, don't often have pain as a key component of their condition. What are some of the reasons why some people get pain, or deal with a lot of pain issues in the progression of their ALS and others don't? Do we understand that?

Dr. Oskarsson:
So ALS doesn't cause pain. So again, you can have pain for other reasons.
We see muscle cramps occurring in ALS, and then they can be bad and lots of people with ALS have pretty bad muscle cramps, and if you couple the muscle cramp together with inability to stretch it out, which often comes together for people with ALS, it's a problem. Apart from that, there's not really any direct pain from ALS, though.
So immobility can lead to pain, if you're not moving a lot. We manage that with physical therapy, and occupational therapy, and modern beds that can adjust pressure. A lot of patients will utilize custom motorized wheelchairs that has a tremendous amount of different comfort settings so that you can find a spot that's comfortable.
Again, not being able to shift your own weight can be a challenge. And again, but there are mechanical pieces of equipment that are available, that are available for most people are the insurance coverage of these devices is fair, could be better, but it's not bad, and generally we achieve that people get a good wheelchair.
Hospital beds, and adjustable beds, there the insurance coverage is not adequate. I would say that we see problems with those, but that's not quite where we want it to be. But so equipment and physical interventions.

Dr. Correa:
And is it possible that the ALS can lead to degeneration and atrophy of muscles, and if the atrophy of those muscles around joints, or around areas where maybe there already is existing arthritis, might then contribute to a lot of pain issues from that arthritis or even nerve compression, so the progression of the condition, increasingly likelihood of other neurologic problems, that are leading to pain?

Dr. Oskarsson:
Yes, I've had patients with severe pain. I see patients with severe pain who don't have ALS. I don't think I see more patients with ALS with severe pain than I see in other populations, really. But, pain is a really difficult problem, and if you couple that with immobility, that's not a good combination.
And we work very closely with palliative care, and normally they are involved with management of symptoms towards the end. We also work with our pain service. We have had patients we put in pain pumps on with very low forms of motor neurone disease who've had a lot of pain. So when every individual is different, but that is certainly not a common feature of ALS.

Dr. Correa:
Okay.
And if earlier on pain is a very significant factor in the condition or the experience a person is having, are there some other conditions that you pursue, and the differential diagnosis, and the extra tests to make sure we're not actually missing a different condition?

Dr. Oskarsson:
Yes. Our definition is progressive, painless, weakness for ALS. So it's even in many of the definitions we use of ALS. So, yes, we would be looking for other things if it's a lot of pain. [inaudible 00:30:54] are often very painful. They can be motor predominant and can be in the mix. We see common mimickers of ALS would be spine disease, and spine disease can be very painful that musculoskeletal, say, radiculopathy and so on.
The differential for ALS is very much dependent on where the body the problems are and what part of the nervous system is involved. This is one of these typical neurological localization issues where, again, ALS has both a central components from the brain and a lower motor component going from the spinal cord out to the muscle. Depending on which of these are affected, we will be considering other things as potential diseases expanding the problems.

Dr. Correa:
And, whether it's ALS or another progressive, neurologic condition similar or in a related form that is also causing lots of pain in the later stages.
When someone isn't getting really greater quality of life, how do you manage that discussion with the person and their family about decisions around their pain management, and the comfort care, and hospice options that there are?

Dr. Oskarsson:
So again, it's rare that I talk much about pain, given that it's not a common feature of ALS, pain has an unfortunate strong impact on life quality.

Dr. Correa:
Definitely.

Dr. Oskarsson:
Many people with ALS are otherwise able to maintain good life quality even when they have pretty severe disability. Again, assuming that somebody who has disability has poor life quality is, I think, very easy to do if you're able-bodied. But when you start talking to people who have disability, you find that many people still find their lives to be quite meaningful.
Now, pain on the other hand, there often zaps that joy in life tremendously. So pain is, again, if it's present, it needs to be addressed. That, I think, is clear, but it doesn't often touch me as an ALS physician and then I normally would be involved in my [inaudible 00:33:17] care team and our pain team.
The choice of when to really involve hospice is one that becomes relevant for almost all my patients. We, at some point, start looking at where more aggressive medical therapies, and to extend life by hospitalizations, and interventions, and procedures, and surgeries no longer really adds anything meaningful to the person. And when we're getting to that time, that's normally when we would be intensifying a hospice discussion.
Often we do hospice information visits fairly early on so that people know who they will work with at some point in distant future maybe, so there's a connection there so they know the people, they know the services, and so the strengths and weaknesses of hospice.
Some patients move very quickly to hospice. Other people choose not to go there until very late in their disease. As long as people are informed, and again, understand these things, I think there's not a right answer for this. Again, depends on the individual's circumstances.

Dr. Correa:
Absolutely, and I appreciate your flexibility of exploring the unique situation for Phil's family and some of this discussion. And for our listeners, we'll include in our show notes a discussion we've had in the past about palliative care and end-of-life care decision-making in other conditions, but that may be of interest to you here.
Now, I wanted to leave off with some of the hope that you mentioned before, and we've talked about them in a previous episode talking about possible future directions for ALS, but since you teased some of it here that now we do have some treatments and there is ongoing research towards new directions for ALS. So where are we now?

Dr. Oskarsson:
So we're further than we've ever been. The disease again was first described in the mid-eighteen hundreds, then came the understanding of again, how the nerves connect in the late 1800s with RamÃ³n y Cajal and others.
The first U.S. or North American contribution was also described the familial types of ALS up in New England, the border between, he was in Canada, he was in McGill, and people were coming up from Vermont. Those families there had a mutation that was found in '93, the SLD-I mutation. We now have an approved treatment directed at that mutation, and it's a good one. It's not a perfect treatment, but we have people who have gotten stronger to the point that they can't tell they have ALS. We have patients we have treated now for many years, five years probably the longest I have, but there are other centers who have people who have been around on this for a bit longer, and who are doing very well.
It isn't perfect for everyone, but for many of these SLD-I patients, they really... We've turned this for them from a quickly, rapidly deadly disease into a chronic, manageable condition.
There are other gene targets now that are being aimed at. Columbia University, Dr. Schneider, has a product on Foss ALS that is also looking very promising right now. We have some other ones in the pipeline.
So we're starting to have our first wins and we're starting to increase that number. It's still small numbers. We're not able to address the need of most people with ALS yet, and so there's still a lot of work to do, but we can do it. I think we've proven that we can do it when we see a target now.

Dr. Correa:
Now the treatment that was developed for SLD-I individuals now that was evaluated and tested and other people with ALS wasn't found to work. Am I correct?

Dr. Oskarsson:
It hasn't been studied extensively in people who do not have this underlying problem, but shutting down the production of this gene, if it doesn't produce a toxic protein, it doesn't make any logical sense.
Again, it is very much a different problem than most people with ALS have. It is not a protein that's involved at all in typical, regular ALS.

Dr. Correa:
These other ones and gene targets that are being explored now SLD-I, and some of these other gene targets, do you think these are typical and should be standard genetic tests that someone maybe get evaluated as a part of their assessment and diagnosis for ALS?

Dr. Oskarsson:
Yes, and for the last few years, I think that they are most ALS centers now, when I get an ALS referral, I'd say if it's from an ALS doctor, the gene testing will have been done. If I get the referral from a regular neurologist, sometimes it has been done.
I think that it is reasonable that this is done at the level of the ALS specialist, or neuromuscular specialist, but I see some general neurologists also starting, because this type of testing is sponsored, it doesn't cost anything to the patient. It does require some counseling before and after, so it isn't just sending off a test, but still, it isn't impossible for a well-rounded neurologist to do it, I think, and again, certainly all ALA specialists should be able to do it.

Dr. Correa:
And some of these other studies that are ongoing, do you think it's possible we will learn more about the typical progress, or what most people's experience with ALS, that may then inform possible future treatments for them?

Dr. Oskarsson:
Yes. Keep looking. Again, these are nerve cells. The motor nerve cells are getting sick. Now, not just there are cells around them that also are involved with this process. We're picking this process apart and trying to understand the molecular issues that underlies this neurodegeneration.
Our understanding is much greater now than they were a couple of years back. Developing drugs at some of the targets that have been found has proven complicated. TDP-43 is the main protein that we are thinking about when we talk about regular sporadic as we call it ALS.
And it's a protein that it's not too much, it's not too little, it's in the wrong place, and that makes for a tricky balance. Again, we can't just push it up, push it down, but need to adjust it, which is more difficult.
There are ways to try to compensate for its loss where it's supposed to be. There are trials now and there are other trials that are really aiming at addressing that fundamental problem that are coming soon. So those projects, if they work as we hope, will be very effective.
Now, ALS has proven a very hard nut to crack, so it may require more than one pass at these before we really get it. But yes, we have relevant targets, there are drugs that are developed that should be able to address it, now we got to test them and see if it really sticks as we hope.

Dr. Correa:
Well, thank you and we'll continue to emphasize the importance of supporting this research, both with funding and participation, and the community having greater awareness and learning about this continued work. And we'll keep that positive hope that one of these studies will improve the course and maybe even point us towards treatments that modify the disease course, maybe even a cure, and potentially tell us more about ways we can change the process of other neurologic conditions.
Thank you so much, Bjorn, for joining us today.

Dr. Oskarsson:
Thank you.

Dr. Correa:
Thank you again for joining us today on the Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at brainandlife.org.

Dr. Peters:
Also for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Correa:
You could also find that information in our show notes and you can follow Katy, and me, and the Brain and Life Magazine on many of your preferred social media channels.
We're your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online @KatyPetersMDPhD.

Dr. Correa:
Most importantly, thank you, and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health, and each thrive with our own abilities every day.

Dr. Correa:
Before you start the next episode, we would appreciate if you could give us five stars, and leave a review. This helps others find a Brain and Life podcast.
See you next week.

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