Finding Strength in ALS Advocacy with Podcaster Lorri Carey

Episode Transcript

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

Dr. Katy Peters:
And I am Dr. Katy Peters. And this is the Brain & Life podcast.

Dr. Daniel Correa:
So glad you're joining us again on the Brain & Life podcast. This week I am reminded of the amazing strength and fortitude of people living with ALS. Katie, what have you learned from people you have helped care for that live with ALS?

Dr. Katy Peters:
For patients with ALS, the role of caregiving is critically important. These individuals require specialized care that starts in the clinic, but ultimately most is done in the home. So the caregiver role is vital and I think it should be discussed early and often.
The next important point would be that you really want to find a multidisciplinary clinic with specialized providers from many different disciplines, and this allows really all facets of ALS to be cared for.

Dr. Daniel Correa:
And that's exactly the key aspects and the important information we're going to be getting to today. We've previously had an episode where we interviewed Brian Wallach and his wife Sandra Abrevaya, about his own journey with ALS, and we're continuing our discussion in the space of ALS, or amyotrophic lateral sclerosis, with our guest to date Lorri Carey. Lorri has lived with ALS for many years and is getting her care through these multidisciplinary clinics that has helped her to maintain a life full of gratitude and quality with her family. She also in the last several years started a podcast and is a big advocate for the ALS community, and we'll be getting to that into the episode.
Make sure to stay through for the second part of the episode, where we have Dr. Stephen Goutman. He joins us again, as we've mentioned before, he's a neuromuscular expert, specifically he also works within ALS. And you may remember him from last year's episode where we interviewed John Driskell Hopkins. Don't forget to follow and subscribe to the Brain & Life podcast so you can hear from Tiffany Kairos, who lives with epilepsy, and advocates for others in the community with this neurologic condition. That episode will air in November, which is also Epilepsy Awareness Month.

Dr. Katy Peters:
Then we'll have an interview with Dr. Casey Albin, who joins us to share some valuable information when it comes to the intensive care unit and neuro emergencies.

Dr. Daniel Correa:
Make sure to stay tuned and I hope you enjoy this episode.
Welcome back to the Brain & Life podcast. Now we're continuing our series and discussions with people living with ALS, or amyotrophic lateral sclerosis. Each year in the United States over five to 6,000 people are diagnosed with ALS. Many of these individuals are understandably shocked when they're quoted a prognosis of two to five years of life expectancy. But as we have shared in our past episodes with John Driskell Hopkins and Brian Wallach and our medical experts, every person living with ALS can have a unique progression, symptoms and experience.
Today I'm joined by Lorri Carey, calling in from Ohio, where she lives with her husband and two sons. Over the last 19 years, since 2004, she was diagnosed with amyotrophic lateral sclerosis, or ALS, and has not let it weaken her resolve, but rather joined community advocacy and outreach efforts in many ways. Since 2020, she's been promoting ALS awareness and interviewing many members in the community in over 75 episodes of her podcast, I'm Dying to Tell You. Thank you so much, Lorri, for joining us today.

Lorri Carey:
Thanks for having me. I appreciate it.

Dr. Daniel Correa:
Back in 2004 you were working for a consumer products company, traveling to different grocery stores, and raising your boys. Tell us more about your life and your family before your diagnosis in 2004.

Lorri Carey:
Yeah. Well, I think typical Midwest family. Busy, busy. Yeah, I was working full time, and my husband as well. My oldest son involved in hockey, travel hockey. My youngest involved in acting, so different aspect. But running, running, running and doing all the mom things, doing all the professional things, and just trying to hold it all together. But that was a natural thing at the time.

Dr. Daniel Correa:
Yeah, I think it's something that everyone could relate to, just all the busy, busy of life. What was it that you noticed that was changing about yourself and your body that made you go see your doctors?

Lorri Carey:
Well, it's kind of an odd story. I was driving home late at night from a work event at a restaurant, so it was probably around 11:00, 11:30 at night. And I was on the highway and I got clipped by a semi truck. So I spun around the highway twice, ended up facing ongoing traffic, against the wall. I was totally untouched. I thought that was the moment that I was going to die.
And so after that I went to the doctor just to get checked out and while I was there, so this was December 2003, I said, "Oh, by the way, I was going to come to you after the first in the year anyway and ask you about my hand. I have weakness in my hand. I can't open up a water bottle anymore." And she looked at my hand, and in between my thumb and my forefinger there was no muscle. And she said, "Well, I don't know what's going on, but you're 37 and you have lost muscle mass, so there's definitely something not right."

Dr. Daniel Correa:
It was really just getting checked out to make sure nothing happened that you had to be concerned with related to the car accident. And then you'd notice that change in your hand so you were getting that checked out. Where did things go from there?

Lorri Carey:
I also said, "Oh, and also, I'm having these little twitches on my legs," which I now know are fasciculations. And I said, "I'm also waking up in the middle of the night with really bad cramps in my legs." So weakness, fasciculations, cramping, all what was ended up to be hallmark signs ALS, but I didn't know that. But I mentioned them all to her because they were so apparent and she didn't put it together either.
I think really, I had a party and one of my friends is an ER doctor and I was telling him about it, and now I know that he knew what it could be but he didn't say. But he did connect me with a neurologist right away, who got me in right away on a Friday night and did the EMG. And after the testing he said, "What do you know about what this could be?" And I look back now and he was trying to gauge me, preparing me for some really bad news. So when he said, "What do you know?" I said, "ALS." And he said, "Yeah, that's what I think it is."

Dr. Daniel Correa:
Wow. So what had you known about ALS?

Lorri Carey:
Not much. I had heard of Lou Gehrig's disease, and I think that was probably about it. Yeah, yeah. I do remember when the doctor said, "Yeah, I think that's what it is." I remember replaying it in my mind, "Two to five years, no cure. Two to five years, no cure." That's what I remember about that research that I had done.

Dr. Daniel Correa:
And where did things go from there? Did you end up going to a special ALS clinic or how did you then proceed with getting more support and services?

Lorri Carey:
Yeah, not at that time. I had that initial diagnosis in Cincinnati, and then I went to second opinion at the University of Kentucky, and then I went for a third opinion at Cleveland Clinic. And they all maybe found one more test we haven't done yet, since you can't do one definitive test just saying you are positive for ALS. It's ruling out all these other things that can mimic the disease. So after I got through all that and all of them saying, "You have ALS." So that took from February to May.

Dr. Daniel Correa:
And after that discussion and having all these opinions, how did you and your husband share your diagnosis with your sons?

Lorri Carey:
We were very upfront. By the time a third diagnosis came, they were feeling a sense that something wasn't right. My husband was the hockey coach for my son's team and he wasn't there at practice, and things were looking different. And I can sense that they were like, "Okay, something's going on." And before they heard about it, anyone else, we wanted to make sure they heard it from us.
So we sat them down and my husband talked and I cried, and he told them this is what she has. There is no cure. And he said, "We're just going to live life like we normally do, and continuing to be a really close family and be involved with each other."

Dr. Daniel Correa:
How do you think this time and the diagnosis and the time that you've had together has affected your relationship with your husband and your sons?

Lorri Carey:
Okay, now you're going to make me cry. I mean, I can't even describe. That same year I was diagnosed they said, "We can do something about this mom. We can do something about this." And they ended up supporting our local chapter and starting a walk team.
And they were in the backseat of the car talking and they said, "Hey, we're going to set a goal. We're going to get 100 people to join us and we're going to raise $10,000." And I remember thinking to myself, "Aw, they're little hearts are going to get broken. They're not going to be able to do that." And in that first year they had 500 people come and raised $80,000 for patient care in our area, and now they've raised over a million dollars.

Dr. Daniel Correa:
I wanted to go back to some of your day-to-day. Beyond the progression of weakness, what are some of the things that you and your care team focus on to help you manage with other symptoms each day and over time?

Lorri Carey:
Luckily, I'm pretty independent. My weakest muscle right now is probably my diaphragm beside my hands, my arms. I can't really lift my arms. A lot of my fingers don't move, but I can manage a lot of different things. I am sleeping with a ventilator at night and just adapting to different situations.
So I'm always working with physical therapy, trying to do things to improve, even though ALS isn't supposed to improve, but keeping moving as much as I can and recumbent street bike from the trails last year. It's given me a huge sense of independence and allow me to be physical, without being able to ride a bike.

Dr. Daniel Correa:
So not just crossing things off your list and saying, "I can't do them," but really continuing to try to work on yourself, improve, as you said, and challenge those things and see if it's possible again.

Lorri Carey:
I'll never be able to do things at the level I could before, and that's an acceptance that I'm okay with. But I just feel like if there's a way to still get some of that, it's worth looking into and try to figure out something new.

Dr. Daniel Correa:
What do you think more people throughout the community need to understand about living with ALS?

Lorri Carey:
ALS looks different and is different on everyone. My challenges are different than others. I mean, if you look at me, you would really not even know that I have ALS. People that have ALS are people and they're the same person inside, and they want the normal interaction and they want the normal conversations.
And don't be afraid. ALS can look very scary to someone in a natural stage. Being in a wheelchair, having a ventilator, having a trach, and people are afraid. They're afraid. They're afraid of saying the wrong thing. They're afraid to hurt them, they're afraid to embarrass them. But people with ALS are people that want love and affection and to be a part of normal life.

Dr. Daniel Correa:
You mentioned more people understanding that everyone has a unique experience with the condition, and you've explored some of that with your own podcast. Your sons helped you start and produce your podcast, I'm Dying to Tell You. So share with us your experience of working with your sons on this effort.

Lorri Carey:
Well, they definitely inspire me to go for it and they are helping me with the end product, but I have learned how to record, how to edit, and all that with my one finger over here. So it's been really rewarding and satisfying to take on something new that I didn't know anything about and be able to do it primarily independently. It's been a blessing to me just fueling my fight and my energy to continue on, and doing what I can to help educate and bring other people into our world to let them know about ALS and why it is such an urgent cause to be a part of.

Dr. Daniel Correa:
And what are some of the most important lessons that you've learned from your guests and in the ALS community on the podcast?

Lorri Carey:
There is so much. I mean, I've talked to amazing people that have just done extraordinary things, or have such a perspective that reminds me every day how important it is to be in control of your mind, even if you are not in control of your body, as far as losing the muscle and losing abilities. I've talked to young people as young as 10 who have ALS who sat there and said, "Why can't we all just get along? Just be kind to someone in a wheelchair."
Just so much that if you have an idea and you take action, look what can happen. Or how are you managing your huge dose of adversity? By faith, community, like we are talking about, so many examples of community. We have new people coming in that need and want a place that others have a passion to make a difference, and that's everything, a sense of belonging and empowerment.

Dr. Daniel Correa:
How would you express your experience of how important the effort of the I AM ALS's organization's advocacy has been for the community?

Lorri Carey:
I've been in this ALS space for 19 years, and it's the first opportunity that I have witnessed that, again, people that are living day in and day out with the disease have the voice, have the ability, to make change. And not only that, what's really cool is that people who have cared for people with ALS and have lost their person, they come in or they continue to stay in the I AM ALS community and give their time, their energy, their knowledge, to make it better for those that are living with ALS. And to me, that is amazing.

Dr. Daniel Correa:
Lorri, I truly appreciate you sharing your story and everything that you're doing to help connect with the community and raise awareness about ALS. And just the model that you and your family have created for both community and local support, it's incredibly impressive. Thank you so much for taking the time to join us here on the Brain & Life podcast.

Lorri Carey:
Oh, thank you. I appreciate you and what you've done. Talking to Brian and Sandra, talking to John Driskell Hopkins, thank you for doing that. It means everything to us. Thank you so much.

Dr. Daniel Correa:
Is this episode leaving you wanting more? Get the latest tips on healthy living and management for more than 250 neurologic conditions by visiting brainandlife.org, where you can learn more about neurology every day powered by trusted neurologists.
I've really appreciated Lorri's openness about her experience with ALS, and I'm excited now to welcome back to the Brain & Life Podcast Dr. Stephen Goutman. He's a neurologist and director of the Pranger ALS Institute at the University of Michigan. And some of you may have caught him in our past episode with John Driskell Hopkins, where we talked with Dr. Goutman and got into some of the basics and specifics about ALS when that was our first ALS episode.
Now he'll be back with us and we're going to build on some more of that information in our third ALS episode. In our conversation we'll learn more about some of the variants in ALS, and some of the important information that people need to know about when they're thinking about the possible treatments and supportive care options that are out there, and some of the decision-making someone might have to have and do with their family later in the condition. Thank you, Stephen, so much for taking the time to join us.

Dr. Stephen Goutman:
Thanks so much, Daniel. It's great to be back.

Dr. Daniel Correa:
Stephen, now there's been various public figures who have opened up about their experience with ALS, and we, as the public, are starting to see very different courses with the condition. To build on the information we've talked about before, what are some of the types and variants of ALS?

Dr. Stephen Goutman:
One of the things that I always tell my patients is that they're living their own lived experience. What's happening to you is individualized to you. And we can start talking about statistics and numbers and how many people have which form of ALS, but at the end of the day, it really matters what's happening to you, as the person going through ALS, and how can we fit a care model and a care plan that best works for you. I think it's really important for people to be aware of the different types of ALS to increase our understanding of the disease, to understand the variance of the disease, and also help to recognize this disease sooner, especially from the standpoint of a health professional.
In general, we usually break it down into where the disease started. People think about, "What type of ALS do I have." I think most people are thinking along the lines of, "Where did my symptoms start moving forward?" We may expand this to think about, "What genetic type of ALS do I have? Do I have a really," what we call familial form still, although we may be moving towards classifying this more as a genetic form or a non-genetic form. And then maybe there's going to be some other molecular subtypes that we'll consider.
But let's take this back to really the clinical presentations of the different types. And some people say, "I started with my symptoms affecting my speech and swallowing," and we call that the bulbar type. Others may say, "I really had trouble using my hand." We call that the cervical onset type. Others may notice some trouble with that ankle catching on the ground when they're walking what we refer to as a foot drop, and we call that the lumbar onset type. These are going to be the most common clinical presentations of ALS. So speaking and swallowing difficulties, hand weakness, and foot drop.
Now just want to clarify for anybody listening to this, there's a lot of other reasons in the world of neurology why people can have trouble with speaking or swallowing or with the use of their hand or their foot catching on the ground. So I don't want anyone listening to this to think if any of those symptoms develop, it's ALS, but these are the most common forms that we see with ALS.
There are some less common types, and I think our concerns as the community is that some of these less common types are not as recognizable and there's often a delay to diagnosis when people have these less common forms. And so what are these? One of them is what we call flail arm syndrome, or also known as brachial amyotrophic diplegia. This is a form of ALS where there's weakness in the arms that usually starts by the shoulders and moves its way down to the hands, really the opposite direction of cervical onset ALS when that weakness starts in the hand. There's a type that's respiratory onset. People develop trouble with breathing pretty profoundly, and that gets worse. It can present like that really before the weakness develops. People may have a lot of weight loss and it's really a profound form of ALS.
And then we talk about these other variants called progressive muscular atrophy where it has a different presentation in terms of the types of motor neurons that are affected. And so when people come to see us and we talk about the diagnosis of ALS, we think about what parts of the nervous system are affected and what motor neurons are affected. And people that present with progressive muscular atrophy really have more of a pronounced involvement of motor neurons in the spinal cord compared to the brain. And there's some other types of ALS, but I would say those are the major ones that we're going to see in clinic.

Dr. Daniel Correa:
You mentioned, in a way we break them down by what part of the body or the region the symptoms started in. Let's go with the hopeful question that I'm sure many people come with, is how likely or how often do you start to see that kind of onset, whether it's in the hand or the foot or in their face, and it doesn't end up progressing outside of that region.

Dr. Stephen Goutman:
I think unfortunately, it really typically will extend beyond the place where it starts. And so there's a characteristic spread of ALS that moves from one side of the body to the other and really up and down the body. And so if we think about somebody whose symptoms start in their right hand, the spread that we would expect would be the weakness moving to the left hand into the right foot, and to the muscles of the face and the head and neck and going from there, involving the respiratory muscles and the leg muscles.
So we do typically expect that spread to occur. I would say it's not common that I see somebody's whose disease really arrest. It's what we hope for, but it's unfortunately not a common thing that we see.

Dr. Daniel Correa:
Lorri Carey, as she has her podcast, I'm Dying to Tell You, and on her podcast she interviews lots of different community members living with ALS. She herself, as I mentioned, has had symptoms since 2004, and then when she received her diagnosis. And you talked about, we end up characterizing the kind of ALS variant by where the symptoms start. But beyond just the weakness or voice change or a respiratory change, is there some other symptomatic start that should be considered for more evaluation for possible ALS?

Dr. Stephen Goutman:
The symptoms of weakness are really going to be the most prominent symptoms that are going to bring somebody to attention and to be alerting someone to the possibility that this is ALS. There are some other features that may point in the ALS direction that are not linked to weakness. And for any healthcare provider out there, I would make note of something called the thinkALS tool that's put out by the ALS Association, that really helps us think about the different symptoms and the different supportive symptoms.
So a few of these that are separate from weakness. One that I would highlight is anyone who has a family history of ALS who's presenting with any strange or unusual neurological symptoms, I think it's important for us to be thinking about the possibility of this being ALS. I see that avoided on many occasions, and I think it's because we just hope that we're going to find something else, but I don't think we should ignore it.
Symptoms of pseudobulbar affect. So this is emotional ability where individuals may laugh or cry without inhibitions or laugh or cry at inappropriate times. That could be a supportive feature of ALS. There are individuals who present with profound respiratory symptoms and when there's no clear, say, pulmonary cardiac cause of that, may want to think about, is this a neuromuscular type of weakness. So neuromuscular type of respiratory failure that would push us to consider ALS.
And then there are some individuals who present with some forms of cognitive changes that may go on to develop weakness. That's a situation where there may be a dementia linked to somebody's ALS and it's the cognitive symptoms occurring first that then later on develop into the weakness. So those are some of the symptoms that may not necessarily start out as weakness.
One of the other things would be unexplained weight loss as a supportive feature. Somebody who's having unexplained weight loss and then they're going on to get weak, that weight loss may be a feature of their disease process.

Dr. Daniel Correa:
Lorri herself has been a big advocate both in education about the condition, but also with working with I AM ALS. Brian Wallach, of course, as we mentioned, is one of the co-founders of that organization, have been working towards advocacy for the condition. I'm just wondering, for the patients that you work with in the community, do you encourage them to take a look at opportunities to participate within the ALS community and look at advocating for not only themselves but others in the community?

Dr. Stephen Goutman:
This is incredible work that they're doing. And at the American Academy of Neurology meeting that just happened in April of this year, actually showed the documentary of Brian Wallach. And it was really a moving documentary in the way that he and the others that he has worked with have really pushed the envelope and sped up this advocacy process and sped up legislation around ALS. It's really incredible.
We are in need of more people out there to advocate for this disease, and it's part of a message of hope that I give to people that I see in clinic. This is something that I learned when I was early on in my career, from another neurologist in the community, is how to help people with this idea of hope. And I think one of those is through advocacy work, and knowing that even facing this difficult disease, you can bring hope by pushing things forward. Improving funding, improving funding for research, for clinical care, improving clinical care, improving clinical services. There's a whole host of ways that we can have people advocate to make positive change. And I think it's really, really important.

Dr. Daniel Correa:
And I'm wondering then, as you said, all these changes and the movement that has been going forward, how does this come into your clinical practice, in your conversations? When I started my training, there was just one oral medication that was out there. Then during my training and IV medicine came out. But more recently, in this last year or two years, there's been a lot of activity of both approvals and new investigative therapies that are coming out and some patients getting experimental access or getting placed on new medicines. Where is your treatment discussion now?

Dr. Stephen Goutman:
ALS is one of the hot areas of drug research and drug development, which is great to see. There are so many clinical trials and so many clinical studies. So the way that I see myself, and I think everyone has a different clinical perspective, but it's really important I think to separate out what are the FDA approved treatments and then what are the non FDA approved treatments, and how does that fit into one's overall care plan.
And so everyone's going to want to take a different risk, I think, with what treatment options that they want. I think it's hard for me to sit here in this conversation today and say, "Here's the recipe book for taking drug one, two, three, or four, and then adding these supplements or these therapies." So I think it's a really individualized conversation. And I'll tell you what I talk to my patients about, and it's a matter of, "What are your goals for this disease? What are your quality of life goals? What are your personal goals? What risk are you willing to take? And how much knowledge do you want to know about each of the drugs that's out there? What stage of the disease are you in?" And after we talk about those points, then we say, "Okay, here are the drugs that are out there. How did these meet your expectations, meet your goals, meet your tolerance for risk or for side effects," and then go from there.
And then there's some really excellent resources out there for people understanding some of the non-pharmacologic therapies or some of the supplements or alternative therapies. And ALSUntangled is a really wonderful resource for people to get information about some of the alternative treatment options, and that's run by Dr. Rick Bedlack, who's at Duke, and he has been really a champion of that research and a champ of that area of ALS. And then we figure out how these types of therapies really align with what people want out of their disease.

Dr. Daniel Correa:
I think it's an important thing for all of us to remember is that it's okay to have goals and priorities that are different from what we're seeing and what we hear. Brian Wallach and Sandra Abrevaya have been amazing advocates for people to have access to different treatments that may give them a few more months. And with this idea of stacking on time may give them better progression, more time for more supportive care, more time with their family, but also maybe future access to other treatments.
But it's okay to not necessarily say that you want to accept anything that will be thrown your way and tolerate all possible risk or financial challenge for the next medicine, if that's not what you or your family want as your next step.

Dr. Stephen Goutman:
Absolutely. And everyone has different goals and different life goals. I've learned that people have an incredible ability to live towards an important event, whether that be a wedding, whether that be a grandchild. People have a real desire to watch their family grow, and everyone has really different things that they find meaningful. And connecting on those I find is the most important piece of what I do. How can I help you reach a goal the best that I can, knowing the limitations that we have, but how can we make this goal achievable together.

Dr. Daniel Correa:
Whether it's mobility issues, staying in the home versus other care settings, or even these procedures and surgical interventions, there can be a lot of barriers that a person and/or their family may encounter getting the equipment and the support that they need. How do you help people manage these situations and what are some of the resources that are out there for that?

Dr. Stephen Goutman:
What's critical is to inform your medical care team about what you need and then to take advantage of your local ALS organization, to let them know what you need as well. And different ALS organizations around the country have different abilities and different ways of helping, and there are some lone causes out there, and asking for help. And then hopefully, as we're seeing people in our multidisciplinary clinics, we can anticipate needs and get those prescribed really before they're needed so we don't wait until something's needed, but we get it in place before it's needed. So it just becomes part of the treatment plan.

Dr. Daniel Correa:
Stephen, I really appreciate you taking the time to speak with us, but really the time that you take with the individuals and the family that you help support in their journey.

Dr. Stephen Goutman:
Well, thank you. I mean, as someone who treats people with ALS and researches ALS, I would say thank you for dedicating so much time to this topic that we are so passionate about to bring awareness to the community. So thank you.

Dr. Daniel Correa:
Thank you again for joining us today on the Brain & 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 & Life magazine for free at brainandlife.org. Don't forget about Brain & Life en Español.

Dr. Katy 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@braindandlife.org and leave us a message at 612 928 6206.

Dr. Daniel Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain & Life magazine on many of your preferred social media channels.

Dr. Katy Peters:
And these episodes would not be possible without the Brain & Life podcast team.

Dr. Daniel Correa:
Including Nicole Lussier, our Senior Manager of Public Engagement.

Dr. Katy Peters:
Rachel Robertson, our Public Engagement Coordinator, and Twin Cities Sound, our audio editing partner.

Dr. Daniel Correa:
We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

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

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

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

Dr. Daniel Correa:
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Finding Strength in ALS Advocacy with Podcaster Lorri Carey

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