EPISODE 66

[INTRODUCTION]

[00:00:05] MBH: Thanks for joining us at Keys for SLPs, opening new doors for speech-language pathologists to better serve clients throughout the lifespan. A weekly audio course and podcast from speechtherapypd.com. I'm your host, Mary Beth Hines, a curious SLP who embraces lifelong learning. 

Keys for SLPs brings you experts in the field of speech-language pathology as well as collaborative professionals, patients and caregivers to discuss therapy strategies, research, challenges, triumphs and career opportunities. Engage with a range of practitioners, from young innovators to pioneers in the field, as we discuss a variety of topics to help the inspired clinician thrive. 

Each episode of Keys for SLPs has an accompanying audio course on speechtherapypd.com available for .1 ASHA CEUs. We are offering an audio core subscription special coupon code to listeners of this podcast. Type the word KEYS for twenty dollars off. With hundreds of audio courses on demand and new courses released weekly, it's only $59 per year with the code word KEYS. Visit speechtherapypd.com and start earning ASHA CEUs today. 

[INTERVIEW] 

[00:01:24] MBH: Welcome to this episode of Keys for SLPs. Keys to Staying Loudly: Her ALS Journey. I'm your host, Mary Beth Hines. This is our 66th episode and marks our two-year anniversary of Keys for SLPs. I would like to take this time to thank everyone at speechtherapypd.com who has worked behind the scenes to realize the mission of Keys for SLPs over the past two years. 

When I was asked to host this podcast, the thought of hosting a podcast was completely outside of my comfort zone. But with Yumi's encouragement, I took a chance. And I'm so happy that I did. 

It's been an incredible learning opportunity for me and afforded me the chance to interview pioneers in our field, expert clinicians, new SLPs, clinical fellows, students, caregivers and people with communication challenges. An added bonus has been making new friends in the process. While I have enjoyed all the episodes, the opportunity to interview people with communication challenges has truly been a gift. Today, I am honored to welcome our guest and my new friend, Sam Telgkamp. 


Before we get started, we have a few items to mention. Here are the financial and non-financial disclosures. I am the host of this podcast and receive compensation for this presentation from speechtherapypd.com. No relevant non-financial relationships exist. Sam Telgkamp receives an honorarium from speechtherapypd.com for this presentation. No relevant non-financial relationships exist. 

And here are our learning objectives for today. Explain how ALS is diagnosed and misdiagnosed in young women. Describe recommendations for communicating with a young person with ALS from the perspective of a young person with ALS. And, three, lists three support groups for young people with ALS. 

As mentioned earlier, our guest is Sam Telgkamp. I met Sam a little over a month ago when she brought a lacrosse stadium to their feet in a standing ovation after she spoke at halftime. At this point in my life, I have attended thousands of half times during youth sports. And this halftime I will remember like no other. I knew after the game that I had to meet her and bring her story to Keys for SLPs. So I sought her out after the game. 

Over the past month, I've gotten to know Sam. And I am in awe of her advocacy work, determination and legacy. Sam Telgkamp, a retired certified child life specialist, enjoys spending time with her family and friends, being outside, reading writing as well as assisting with a local girls' high school lacrosse team. 

She earned her Bachelor of Science in child and family studies with a concentration in child life. Sam worked as a child life specialist at Nationwide Children's Hospital in Columbus, Ohio on the hematology, oncology and bone marrow transplant floor where she provided support to patients and families navigating the hospital. 

Three years into this job, at age 25, Sam received a diagnosis of ALS. Due to her diagnosis, she is no longer working in the hospital but continues to carry on her role as an advocate and voice for those living with ALS through her blog Staying Loudly. 

Welcome, Sam. 

[00:04:51] ST: Hi. Thank you for having me.

[00:04:54] MBH: Well, thank you for being here. Will you tell us a little bit about yourself?

[00:04:58] ST: Yeah. So I grew up here in Cincinnati. I'm the oldest of three girls. I kind of hold the role of being big sister, momma hen. But I would probably describe myself as a very busy and athletic kid growing up. I'm definitely like was always that athletic games. So whether it was soccer, lacrosse, basketball, swimming. We were a very busy family. And so, yeah, I grew up here. And then kind of worked my way into like middle school and more so focused on lacrosse and soccer. 

I want to say I found out about lacrosse in middle school. I started lacrosse Ð was playing soccer. Was very team-oriented. Every day after school, we had practiced. We were always trying to like stay busy with club soccer. And so, when I started to find lacrosse, I ended up switching the school of soccer and played lacrosse and fell in love with it. 

And so, kind of going back and forth between those sports and switching to like a middle school and then to a high school, I kind of went through a lot of mental health changes. So even through high school and being an athlete, I was kind of struggling mentally. 

So I ended up quitting soccer and lacrosse around my senior, junior year, which was really challenging for me to like comprehend and find myself and who I was beyond sports. 

I found different passions in like creativity side of me, which is where the writing Ð and I did a lot of photography and volunteer work. And that's kind of where I landed in the world of child life. 

I was trying to find what I wanted to do in my future and who I was. And I really liked science but I also liked psychology. And I knew I wanted to work with hematology-oncology patients. I had Googled I think like counselor and pediatric oncology setting. And that's when I found what child life was in high school, which is not normal for a lot of people who study child life. 

Yeah, I found that and I landed at OU, which is where I studied for the next four years for child life. And my first-year studying was when my lacrosse coach found out he had ALS. I was processing what ALS is and watching my community process what ALS is while I was in college. 

And then in college and going through all my internships and practicums for the path to certification, I started noticing some changes in my hands that I just assumed was carpal tunnel. And so, after graduating, I think it was 2019, my coach had passed away. And that's around the time that I started like going to the doctor to see what was happening with my hands and if I should get tests for carpal tunnel. And we just cut down that path as I continued to work at Nationwide. So it's been quite the journey. 

[00:09:57] MBH: Well, that is quite the journey. And thank you for sharing. And you share some of those earlier challenges in middle school and high school in your blog. I would like everyone Ð I would like to encourage everyone to visit your blog, which is called Staying Loudly. Because you worked so hard to become a child life specialist. 

Can you tell us a little bit about Ð so you worked so hard, and you graduated, and you landed your dream job and you went to a primary care doctor. Was that the first person that you went to about what you thought was carpal tunnel? 

[00:10:36] ST: Yeah. So I want to say the first time I went to my primary care doctor was in like the middle of COVID. So around 2019. I had gone in and like Ð I was like, "This is bothering when I'm typing." It was an achy feeling. I knew it happened more so at night or when I was like very tired at the end of the day, which is similar for carpal tunnel, I think. I think people wear braces at night because that's when it hurts the most. 

And she kind of just looked at my hand. Like not even like looked at my hand. But like just eye on my hand and kind of said, "You know, I think this might just be tendonitis. I don't think it's carpal tunnel." 

So I came back almost a year, two years. What would it be? Probably like 20 Ð yeah, it would be two years because COVID kind of wiped out the whole year. It was like 2022, 2021, I went back to see my primary care again and I was like, "Okay. So this time it's not okay. I need you to do some tests." 

At work, I was getting really tired typing. I was having these weird like twitching feelings in my arms sometimes. And then this might sound really weird. But like you do sign language with kids sometimes or like you Ð I had learned this song in like sixth grade. And it's you make like a hand shape for like a moose and like I think a llama or something and I couldn't make the shape with my hand. 

And so, that kind of freaked me out a little bit. And then one day I went to clip my badge and my phone to my shirt at work and I couldn't pinch the like super easy clasp that goes onto your shirt. And so, that's when I was going in the second time with those symptoms. 

In that time, she actually looked at my hand. And when she looked at it, I was like, "It kind of feels like it's swollen. My fingers feel like they're stuck to each other." And when she looked at it she was like, "I actually don't think it's swollen. It looks like you are swollen because you're losing the muscle mass in the palm of your hand." 

And so, that's when I went to get an EMG with no explanation of like what it could be. An EMG is used for carpal tunnel. So I kind of went down the Google rabbit holes at the time. But, yeah, when I got my EMG, which is like an electro-test. So they Ð oh, shoot. What's the stickers called? 

[00:14:36] MBH: Electrodes? 

[00:14:36] ST: Yeah. They put the electrodes on your arm in different areas and then use a probe to kind of give you a little bit of a shock and then the electrodes pick up how your arm is responding. 

They did it on my left arm. And working as a child life specialist and being in really heavy rooms and conversations, I noticed and I'm very sensitive to how people change their body language even if they are speaking all happy and positive. And this technician was very cheerful and very kind. But also, like too much. And so, I felt like the room was changing. 

And she went from my left to my right hand and kept apologizing for how long it was taking. And then the neurologist came in and did more studies, which is the one that uses the needle, like an acupuncture needle, to listen to your muscles. And he kept focusing on certain areas like the corner where your thumb and your pointer finger meet, which to me look different on my left hand compared to my right. Definitely less muscle mass. 

And so, I kept focusing on those on both sides. And at the end of that appointment I still didn't get an answer. And that might not be their fault. I don't really know the protocol for that neurologist if they can share what they see in the study or not. But he was able to write in a chart "known". And for me, I knew how to read my chart. And because of my experience, I knew what motor neuron disease meant. It's just another way to call ALS without saying it's ALS. 

Unfortunately, was in my car when I actually got my diagnosis. From there, I met with a real neurologist for ALS about maybe a whole month later. And that's when the rest of the journeys kind of started unfolding. 

The EMG can't diagnose anybody with ALS. It's usually the first test. You have to undergo multiple tests through basically everything before they can tell you that's what you have. 

I did the EMG. Then I went and did an MRI lab work, a full neurological exam. And on a second EMG of my left leg and then my like torso area. And all of the other tests came back negative. But the EMG showed weakness and changes in my left leg and my torso. 

When you have more than one body part showing that weakness, it's more of a definite diagnosis of ALS. Yeah, I saw him and then got a second opinion. And the second opinion was in Cincinnati. He's now my primary doctor and who I see. 

[00:19:05] MBH: Wow. Wow. You had a whole month from that initial test, the EMG and the needle test, with the note on my chart before you were able to see another doctor. 

[00:19:22] ST: Yeah. And even the time between Ð   The second opinion was the only thing that happened fast just because my lacrosse coach, his wife, is a very close family friend. And when she knew I was going through this. She put in a quick phone call and got me in like a week. 

Unfortunately, my story is actually pretty fast. I think a lot of it was because I'm, one, pretty attuned to my body. But two, I think my knowing of what ALS is kind of helped me speed up things compared to some of the people I've met who has taken them two to three years to get diagnosed. Very interesting and very unfortunate that there's not a single, like, "Do this blood test. And now you have this." It's several months of hoping that you have anything but. 

[00:20:57] MBH: Right. I remember when I read your blog and you had the MRI. And most people go for an MRI and they're hoping and praying for negative results. But you knew when you got the negative results that that meant ALS was more likely.

[00:21:14] MBH: Mm-hmm. Yeah. And I don't think I'm probably not the first person to say this, but like Ð I mean, I worked with kids who had cancer, right? I know what that meant. And like me and a couple of my peers that I talked to that have ALS, like you're almost like sitting there like, "Please, let it be cancer," or like something that has treatment or better prognosis rather than this thing that doesn't have anything.

[00:21:55] MBH: Hmm. Thank you for sharing that. That's hard to say. And I just can't tell you how much I appreciate your openness. And I certainly am sorry that you were going through this. I can't express that more. I also can't express more how impressed I am with the way that you have handled and continue to handle this. Let's move on. If that's okay with you. 

[00:22:28] ST: Yeah. 

[00:22:30] MBH: I talked a little bit about the incidence of ALS. And so, you have decided along those lines. You have decided, "Okay, I'm going to be an advocate." I was an advocate as a child life specialist an advocate for my patients. And now I'm going to be an advocate for ALS. One of your missions in your blog and the book that you are writing is to share information about ALS. And maybe in that sharing that will help expedite the process of diagnosis for someone else down the line and with having the awareness.

[00:23:04] MBH: I feel like I just decided like in my spiral of Googling and my knowledge of ALS, I knew of it through my lacrosse coach and, unfortunately, a family member. I had a great uncle who had ALS. And I was very little when he had it. But it was very fast for him. So I knew what it could do and I knew what it was. 

And so, when I'm Googling and processing this might be a possibility for me, I'm like where am in this statistic? And is it even possible for someone my age to have this or someone to be female and have this? 

And so, I kept trying to find a story that reflected me and was struggling at the time to find it. I kind of found Ð with my mental health journey, I kind of found writing as like my therapy. And so, the whole time, I was writing in my journal. Like through the whole diagnosis process. 

And so, when I couldn't find a story, and I had already wrote so much, that's when I decided like, "Okay. Well, if this is a possibility and it is affecting anybody out there and they're feeling the same way I am, I want this to be shared." 

So that's why I started the blog. I've since found out the statistic parts of everything. And, unfortunately, just like the diagnosis. And diagnosing it is very Ð I don't know if ambiguous is the word. But it's not entirely always clear because of a couple different reasons. 

One being that when someone receives the diagnosis of ALS today, it's a two to five-year life expectancy. A couple years ago, I know that might not have been the case. There are some things that they have found to help prolong life. But the two to five years impacts how many people in the world are living with it. So when you go to account that number, it's very hard to keep track of. 

Another hard reason that like having that number is challenging and to like pinpoint it is like we are a diagnosis that's not mandated to like be reported. When someone gets a type of cancer, it's required to report that number for everybody that has that particular cancer so they keep track of it and they're able to like have a very specific one in 100 get this type of cancer, right? 

[00:27:17] MBH: And when you say they, are you talking about the CDC? 

[00:27:21] ST: I believe so, from my understanding. For ALS, they don't have to mandate that. The numbers that they use are coming from Medicare, Medicaid, or Veterans, or a Ð like for me, an elective survey.

When I was diagnosed, the clinic said, "Fill out this national survey so we can do X, Y and Z." So it will keep track of me as a statistic. It will show me different studies that come up. It also like helps them track progression and all of that. Electively, there might be people who don't want to sign up for that if they don't hit the other boxes that aren't being counted. That number can change. Currently, the CDC would say that, at the highest, it's like 9.9. And at the lowest, it's like 7.7 persons per 100,000 that are diagnosed with ALS in the US population. 

If you were to look at some other organizations that do a very similar way of study to calculate numbers of people, their number would look around like one in 400 people are impacted by ALS. 

I feel like those numbers, if you were to put that on TV, they look very different in like the way people perceive how many people are impacted by this disease. Obviously, I'm not a math person. So you could calculate that and see how similar they are in the ways that they're measured. But if you were to hear one in 400 compared to nine in 100,000 per US population, like it feels rare or it feels very common. 

And as someone who is living with it and has slowly met so many people impacted by it even just locally, like I would lean towards it's more common than we think. We just don't know how to calculate or keep track of it. 

I feel like I got diagnosed in the amount of people in my life who I would never know have been impacted. Like my sister had this. My aunt had this. I would have never known those things until now. I just feel like the number is incorrect and is much larger than we think. 

Even if you were to break down the CDC number to see like if it's more females, more males. Like the number sways more towards males. But there are female individuals with ALS. The number does show a higher rate than you would think. But I don't know. I feel like if you're to look at the news, it's not represented that way, um which can be incredibly frustrating. 

[00:31:50] MBH: Absolutely. And the other thing that's not really represented is the number of young people. When we were at that lacrosse game and you spoke Ð and after you spoke, as I said, people were so moved. And there was chatter. Like I didn't know a young person could get it. And then I didn't know a young woman could get it, which also leads to the missed diagnosis. 

[00:32:21] ST: Yeah. And so, I know we'll talk a little bit more about this later. But we Ð once I got my diagnosis and did a little more digging and people in my community did a little more digging for me, we found this incredible community of women diagnosed under the age of 35. 

I mean, I joined in November. And there was probably around 30 women part of this group. Now there's 50-plus. Now that we've kind of expanded and put social media out there, it's kind of growing and like super supportive. But it's crazy to see how many of us there are out there. And like the cool part for me is this community of women isn't just the US. It's women all over the world and how our stories are very much the same but also drastically different. 

But, yeah, I feel like, in some ways Ð sorry. I'm getting ready to lose my voice. I feel like in some ways we are a lower statistic. It's not common for someone my age or any age under the age of 35, 39, I want to say. It's what CDC cuts it off at. We're a lower statistic. 

But I don't have an exact number because of all the other chaos of pinpointing just even how many cases of ALS there are in the world. Yeah, I like to say I'm a little bit of a unicorn. But maybe not. I don't know. 

[00:34:45] MBH: For the younger people who are diagnosed, are males diagnosed Ð or is there a higher incidence in males than females? 

[00:34:55] ST: That's a good question. I don't know if I know the answer. I do know there's a group called Young Faces of ALS. And that's where I've met a lot of younger men who have ALS. And I want to say that number is slightly larger than female. 

If you were to like group us all together Ð and I'm by no means a scientist. This is all my experience. But if you were to group us all together, I feel like the younger group of individuals impacted by ALS are either it's hereditary and genetic. Not hereditary, genetic. Or is like individuals who are professional or collegiate athletes or just very athletic people. It's very interesting to like why. But, usually, that's our commonplace is we're very type A athletic people or there's like a history of ALS in their family. 

[00:36:17] MBH: Wow. That is interesting. And you were both athletic and have a history in your family. But correct me if I'm wrong. You do not have the genetic type of ALS. Is that correct? 

[00:36:31] ST: When I was diagnosed because of my uncle having, I did take the genetic test and it came back negative for all of the genes that they currently know are related to ALS. There's a SOD1 gene. There's another one that's pretty common that I can't remember the number. It's like C something that's also very common. My doctor is like, "I've never seen a genetic version where it skips a generation." Usually, if it's genetic, it's like your grandparent had it and now your mom has it. And now you have it. It wasn't like that for me. But we still did the test just to see. 

Unfortunately, it's another one of those things where like you kind of hope it is in one way. Because like you hope Ð because the current science for ALS, it's very targeted to the genetic kind because they have somewhere to pinpoint, right? They have that gene to look at and to understand and to treat. 

In one way you're like hopeful that maybe you can get into a really good study if you have that. But then you're also like, "I don't want that because I don't want this whole part of my family to go through it either." Yeah, it's crazy. 

But I do not have the gene. Do I believe maybe there's a gene out there that's in me that might be related to why? Possibly. We just don't know what that is yet. But, yeah.

[00:38:55] MBH: Wow. Well, because there is Ð as far as Ð I read on the ALS Foundation website, there is a medication that has shown a lot of promise with a certain genetic type of ALS. 

[00:39:14] ST: Yeah. They just recently released a lot of that. A specific gene, I believe it is the SOD1 gene, which impacts actually a lot of my friends that are in the study and has shown to help them a lot. Has been able to be used for anybody with that gene rather than just being study-based. Definitely a big step for those individuals and for the science of ALS. 

[00:40:00] MBH: The FDA just approved that last month, right? 

[00:40:04] ST: Yeah. Yeah. 

[00:40:04] MBH: For longer [inaudible 00:40:05] custody basis. Well, that is encouraging for your friends. And hopefully, that will lead to further science for everyone with ALS. 

[00:40:16] ST: Yeah. 

[00:40:20] MBH: All right. And then there are different types of ALS according to the genes. Do you want to talk a little bit more about the different types that your friends have and that you know of? 

[00:40:33] ST: Yeah. I'm sorry. I'm trying to not lose my voice. In my understanding, if you were to look up motor neuron disease, ALS or Lou Gehrig disease, that all means ALS. MND or motor neuron disease is what a lot of people outside of the US are diagnosed with. It's just a different way that they Ð like a different term, I guess. ALS is the more so US term of the diagnosis. Lou Gehrig disease is just the common term just because Lou Gehrig was a public figure who was diagnosed. 

The specific types Ð so there's I don't know how many different gene. Like the different genes that are associated with ALS. But the two we spoke about I feel like are the most common that I've heard of. And then the Ð I think it's PLS is like a version. I'm trying to remember what the P stands for. It's like a version of ALS that progresses very slow. These individuals might live up to 20 years compared to the two to five. 

[00:42:33] MBH: Okay. 

[00:42:34] ST: Their progression is a lot slower. There's also a version that a couple people I've heard of have that it starts in their arms and like just stays in their arms for a very long time. So that is like a slower-progressing version of ALS. 

Within like ALS you can be diagnosed based on where your progression starts. For me, mine is more upper motor neuron disease. Sorry. I just said that backwards. If you have Ð like your voice is what is impacted first, you have more of a Bulbar-onset. So might have more challenges with speaking or swallowing. Mine is more the movement of my arms and my legs. That is where my progression started. I feel like that would be like the biggest difference. But they're not like too different types of ALS. They're just where your progression starts. 

[00:44:13] MBH: Okay. Well, thank you. Okay. So we kind of talked ahead of time and prepared some different questions that I was going to ask you. So let's move on to those. Kind of related to therapy and speech therapists. When you meet, especially having been in healthcare yourself Ð when you meet a healthcare professional, specifically therapists, what do you want them to know about you? 

[00:44:44] ST: Yeah, I feel like it comes from my philosophy as a child life specialist. But like I feel like I appreciate the people who walk into the room and are completely open to hearing my story and perspective and like reading my body language, and my voice, and my mood, where I'm at. Rather than like walking in the room with a game plan and like missing the individual, right? 

One of the people that I currently work with, I work with my occupational therapist a lot right now. And so, when I first met her it was like tell me about you. Tell me about what you are experiencing right now as a challenge because of ALS. And like those are what our goals are focused on. I can't use my hands. How can I write? 

And like as I progress, each step of the way we had to adjust how I can write differently each time. And like some days I might come in and Ð like at one day, I came in I had a really bad cramp from my diaphragm, which is like probably the most pain I've ever been in like in my life. And the way she read and responded to me was like we're going to have a super relaxed conversation. We're not going to do anything strenuous. And so, I just feel like I appreciate that rather than like coming in with a checklist and hitting your goals and kind of meeting me where I'm at. 

[00:47:02] MBH: Mm-hmm. Mm-hmm. So important to put that patient first. To put you first. 

[00:47:10] ST: Yeah. 

[00:47:11] MBH: Yeah. 

[00:47:12] MBH: Yeah. And you know how it is. Sometimes with productivity, having to see so many patients, it's sometimes hard as a clinician to come in and remember. It's not my goals. It's your goals. It sounds like she does a really good job of that. 

Okay. Well, what is your advice for people when they are communicating with a young person with ALS? 

[00:47:41] ST: Yeah. It's been quite interesting actually. I really like this question. Because I go into my clinic every six months. And that's when I see like the whole interdisciplinary team. And I feel like the first time they met me, I even asked my social worker, like when I first met her, if there's anybody in the area that was close to my age, female close to my age. And she hadn't Ð of course, HIPPA. But like she has like no response to even reach out to somebody to see if they'd be interested in meeting me. 

I think there was somebody who was like in their 30s and was a male. And then the next person was in their 40s, which is different because of what you're going on in your life. That person who's 40 might have a husband and kids versus the 30-year-old who's the male and might not understand how do you put a bra on with no hands? 

Yeah, going into clinic, I'd ask that. And then realized after meeting everybody after that, that not a lot of these individuals have met somebody my age going through this. And so, one of the responses was like Ð almost like they felt sorry for me and had like pity. And like that was frustrating. I get it's sad. And maybe it's more or less sad to see somebody who has maybe more of a life to live compared to somebody that might be more in the retirement age range, which I don't think is fair to say. Because even people that age have so much life to live. But I think like that response is frustrating. Sorry. 

[00:50:27] MBH: Sam, thank you for sharing that. That is so important for us, Keys for SLPs is mostly for speech language pathologists to earn continuing education units in order to have their certification re-certified through ASHA, the American Speech-Language-Hearing Association. 

But that said, your name will be on this podcast. And you have a lot of friends. So your reach is very far. So I think it's so important for SLPs to hear that but for everyone to hear that. So as hard as that is to say, thank you for telling us that. When they meet someone, don't pity them. That's what you don't want them to do. What would you tell them to do? 

[00:51:25] ST: Yeah. And I didn't even finish that thought without getting emotional too. I feel like there was that side and there's also like the side of like I've only ever worked with the older population. And like I'm younger. And so, my interests are different. 

And so, the technology side of things and how to communicate with people through technology was pretty important to me. And the lack of resources was pretty significant when I started asking those questions because they've never been asked them before. I feel like the pity and then a little bit of like the I don't know kind of like Ð and just ending there. Not like let me find out for you. 

And so, I think a couple in the clinic that I've worked with, the outpatient, I think the things that have been helpful are like the I don't know but I'm going to find out. The let me ask. And just being open and honest. And like this is the first time I've ever had this happen. Like I'd rather you say that and then like just give me no choice of like moving on or feeling like something is being completely taken away. Having the opportunity to like continue to grow is pretty important to me. Yeah. 

[00:53:32] MBH: So, I don't know but I'll get back to you. And then following up. Getting back to you. And realizing that you want to continue to grow and are continuing to grow. And whatever we can do to help you continue to grow is going to be much more helpful than any pity or any answer of I don't know. 

[00:53:56] ST: Yeah. 

[00:53:58] MBH: Okay. Oh, thank you. Thank you. 

Okay, let's get into speech therapy a little bit. Tell us about your experience with speech therapy. 11 months ago, you had your initial EMG. And then 10 months ago you had your definitive diagnosis and your second opinion. 

[00:54:23] ST: Yes. 

[00:54:24] MBH: Okay. July time frame, you had your definitive diagnosis. When did you first meet a speech-language pathologist after that? 

[00:54:34] ST: Yeah. I met with my second opinion, my doctor that currently follows me. And he confirmed the diagnosis. And I believe it was Ð he made the choice for me to see the whole team at the following clinic. It was almost like one-week turnaround, which was pretty great of him to do for me. 

And those appointments are like four hours long. So you meet your doctor. You meet uh PT, OT, speech, respiratory and then social work. So I go to clinic every six months and then I see my doctor every three months. I see him in between the clinic appointments in addition to a clinic. 

My first-time meeting speech was about a week after my diagnosis. Just kidding. That's a lie. She was on vacation. So I don't know when I met her the first time. I got a paper with her information and all that the first time. I met her six months later at my second clinic appointment. Yes, that's how it worked. 

Yeah. I met her at my clinic. I had known about voice thinking from my knowledge of what ALS is. And through Ð I feel like my life has like little tiny tidbits of like I'm going to give you this tidbit because you're going to need it later in life. And one of those things was I had volunteered in college to donate my voice, theory of voice thinking agency. 

[00:56:48] MBH: That's so interesting. I had never heard of donating Ð see? You're teaching Ð you learn something new every day. I did not know that. 

[00:56:56] ST: I don't know if they still do it. But it was Ð oh, what was Ð Vocal ID is Ð I donated my voice through there. I spent like four hours doing that. And it was kind of proposed to me as like a kid who maybe vocalizes certain sounds but doesn't have a complete voice. Or like somebody who maybe had a traumatic incident and like didn't have time to bank their voice. This is to give them a voice. 

I know like siblings can donate if they're sibling has gone through something and they want to create a non-Siri voice. But, yeah. I don't know how I found that to be honest. But I remember doing it. And so, I knew what that looked like. Even when I got that paper, that was kind of the first thing that I did without even like seeing her face to face. I was starting to think. 

And when I met her face to face, it was more of the conversation of like what it's going to look like with progression? And what to look for in my voice and swallowing. And then kind of seeing the future of talking devices and ways that she foresees that I will continue to be able to communicate when I no longer have a voice. 

We had all that discussion. And then she also opened the conversation about a study that has been done that shows to slow vocal progression. And to me, anything that has shown something to slow, it's like I'm in. I was very easily in. And so, that's when I got to spend more time with her outside of clinic was through that study. 

[00:59:31] MBH: And you've Ð you've finished the study now. 

[00:59:34] ST: Yeah. I believe it was five weeks, I want to say. I saw her in-person every two weeks. Maybe it's five appointments. More than five weeks. I went in. Had my initial appointment. They use the EMST device.

[01:00:06] MBH: That's the expiratory muscle strength trainer.

[01:00:09] ST: Yes. To kind of measure where I was in my strength. And it did not go very far for me. We got my baseline. And then I took the device home and had to do that five days a week for Ð yeah, five days a week. And then I had to turn it to increase the pressure and then do five days a week and meet her that week to just check my progression. Or I don't know if progression is the word. Progress. Hopefully, we're slowing progression Ð progress. 

And then we did that for the total of five appointments, I believe. And so, at the fifth appointment, that becomes my new baseline or the EMST number. That new number is where I stay currently. And I do that every Ð not every three days. But three days a week. At least three days a week. And that is something that I'll continue to do until my doctor says no more. 

I feel like it's helped. It's not the most attractive and fun thing to do. You have to like do your breaths for like Ð I feel like I do it nine minutes if [inaudible 01:02:14] every time. So I do my really strong blow into it with a nose plug and I do that every 15 seconds. Then have a minute break. 15 seconds and minute break. Or 15 seconds for a whole minute then have a minute break. Then 15 seconds for a whole minute and then have a minute break. So I think it adds up to like the nine-minute mark. 

Having me do it by myself, that means a nose plug for nine minutes. But having somebody sitting next to me means uncontrollable laughter. It's usually an interesting time getting that done. 

[01:03:10] MBH: Well, that is great. Well, I'm glad that it has been helpful. And speaking of uncontrollable, laughter reading your blog, it seems like that has definitely helped you. You have a really, really fun family. Including your Uncle Tom. I'm a big fan of Uncle Tom. And the laughter has really helped you get through this last year.

[01:03:32] ST: Yeah. Yeah. It started out as like what is happening to me? And then it was kind of funny. And then it became annoying when I was uncontrollably laughing and like not laughing at things that are funny. And then realized, "Oh, that's a symptom of ALS." And my doctor had a medication that has shown to decrease that symptom a little bit. Right now, it's more back to the funny side of things.

[01:04:19] MBH: Appropriate laughter. Yes. Yeah. Well, I'm sorry. I should have clarified that. Because I did read that well in your blog that the uncontrollable laughter, that came in like October, November of last year? 

[01:04:35] ST: Yeah. Yeah. And it's uncontrollable laughter and then also crying. It's almost like you're laughing and then you're laughing but you're angry. And then people are laughing with you because you're laughing so hard. But you're still angry. And so, then once you've got control of the laughter, you're now crying because you're upset and like it just makes people feel awkward. And sometimes it's like, "Oh, my gosh. I'm so sorry. Like I had no idea you're angry and nobody's crying and I don't know how to console you." 

Yeah. When I'm on a medication, everything's good. If I miss a dose, you know it because everything spirals real fast. But, yeah, it's a weird side effect to have. But it has probably brought a lot of humor and funny stories to my family. Like the pie story.

[01:05:52] MBH: I was just thinking. I wonder if I could ask her to share the pie story. I don't want to spoil anything for the book or the blog because it is such a funny story. But you brought it up. So do you mind sharing? 

[01:06:05] ST: Yeah. Last year around Thanksgiving, my dad had just bought a truck right before my diagnosis. And for some reason, we had to take the truck to Thanksgiving. And on my way out of the truck into my aunt's house, I had fallen out of the truck. And it wasn't like I didn't get hurt. It was just more funny than anything. 

We moved on. And I knew getting back in the truck that I was probably about to have a laughing attack. And so, everybody was fully prepared around me because they didn't want me to fall again. And so, I started to get up and I just immediately started laughing. 

And when I laughed, all my muscles kind of just Ð I don't know if like contract is the word. Or just like I don't have control of them very well. Usually, if I'm laughing, I'm very unstable. And my family knew this. They were there trying to get me into the truck while I'm laughing to make sure I don't fall out of the truck. 

And when my dad went to push me into the car or into the truck, he pushed my upper body rather than my lower body. And I did not have enough strength to keep me up in my upper body. I just like timbered over into the middle of the seat. And, unfortunately, in the middle of the seat was a leftover pie. And it had aluminum foil on it. But I was like, "Oh, my gosh. That was too soft to be anything but food. I landed on the leftover pie. 

[01:08:11] MBH: Oh, my goodness. 

[01:08:12] ST: I haven't lived that one down yet. But all of my falls have been surrounded by laughter, unfortunately. It's a blessing and a curse because we're laughing. But I don't know. Just leads to instability and I'm down. 

[01:08:38] MBH: And you're down. Well. Of course, you don't want the laughter to lead to instability and to be down. It does give you a lot to talk about though, doesn't it?

[01:08:52] ST: Yeah. 

[01:08:55] MBH: Your poor dad in the truck, I bet he felt bad even though it did create a good story. 

[01:09:03] ST: Oh, yeah. And every time you go to the doctor, or to PT, or OT and they Ð or like outpatient is when I see PT and OT. And they always ask, like, "Have you had any falls in the past?" And I'm like Ð I totally use that one. And I told my doctor, "Yeah, my dad pushed me into the pie." Or give a sob story to make it funny. I hate reporting a fall, but to have a good story behind it makes it better. 

[01:09:44] MBH: It sure does make it better. Well, as I said, reading your blog. And actually, when I met you, when I stalked you after that game, I did have the opportunity to briefly meet your family. And you can just tell there's so much love and support. What a wonderful family that you have. And then, also, you have found a lot of love and support through some different support groups. And before we go, if you could talk a little bit about those. The one that you mentioned earlier is Her ALS Story. That was started in 2019? 

[01:10:22] ST: Yes. The person who started it, her name is Leah. She kind of was in a similar position as me and wanted to find a way to connect woman diagnosed under the age of 35. Because she felt like her story wasn't out there. And that the group of Ð this group of population of people with ALS isn't talked about enough. 

And so, it started out as a very small group. And since has grown to be around 50 plus people. And these are people all over the world. I think there's like four of us from Ohio. And then we've kind of expanded to multiple different states throughout the country. We have people from Sweden and from Russia, Israel. I think Australia. 

So we're very widespread group. But it's been pretty incredible to connect virtually with a group of individuals who are going through something but like going through it very similarly. I can go to a local support group and walk in, and like that day I might be struggling with things like periods or bras. Or like how to put on my hair. And then I look around the room and there's like only one other female in the room and her hair is super short. Or like she hasn't [inaudible 01:12:30] and it's just her voice is gone. 

So, to me, a group of people who like are super open and going through similar parts of life has been extremely, extremely helpful. And I don't think I have enough words to describe how meaningful it is to me. 

The incredible part about it is we are currently fundraising to have a retreat where we meet in person. So they got to meet last fall right around the time where I was just adjusting to my diagnosis. And so, this fall I'll be able to go and meet a lot of the people that have grown to love in-person. Super excited about that. 

[01:13:41] MBH: Also, where is the retreat going to be held? 

[01:13:45] ST: Cape Cod. 

[01:13:46] MBH: Oh, nice. Cape Cod is beautiful. 

[01:13:49] ST: One of our members is from Cape Cod and she volunteered to try and plan out this huge retreat. Yeah, we're visiting Cape Cod and doing all kinds of different things while we're there and bringing our caregivers along. 

[01:14:11] MBH: Oh, that is wonderful. So good to hear. And so, up until the fall, you will have met virtually online. Do you meet with like anyone who's part of the group or is it subdivided into smaller groups? 

[01:14:31] ST: So we meet bi-weekly virtually. And then we have group chats on WhatsApp. Because WhatsApp is helpful for international reasons. But, unfortunately, like there are pods of us that are in closer states or proximity to each other. A couple of the girls meet quite often because they live like New York, New Jersey, Connecticut area where they can have a two-hour drive and be pretty close. 

The girls in Ohio are trying to meet sometime this summer. We just are all spread across Ohio. So we need to find a good central location where everybody can meet all at once So that is our goal. But, yeah. 

[01:15:33] MBH: Well, I'm so thankful for Leah for starting that. And she has brought so much support to so many people. It's so true though, having a lived experience and being able to relate to other people who can relate to you is just invaluable. I'm so happy that you have that. 

You've also had some support through the ALS Foundation and then Team Gleason. Actually, we're recording this. I'm recording this from New Orleans today, which is the home of Team Gleason. Can you tell people a little bit about that and what support you've gotten through that organization? 

[01:16:16] ST: Yeah. Team Gleason is very, very supportive. The first thing that I reached out to was for voice banking. There are certain places you bank your voice that cost to receive your voice. And, unfortunately, that's the one I chose. I got assistance through Team Gleason to pay for that portion to receive my banked voice when I completed it, which was very helpful. 

And then once I had that initial interaction, I realized how much other things that they provide support for. Currently, I get very fatigued moving around and walking. At home I use a walker. But like when we met, I was in a power chair. Just a very light power chair that I can use travel-wise. It folds up really nicely to fit into a car that isn't accessible. It's available to go on a plane. 

It's kind of the step between the real heavy-duty power chair and suffering through a walker everywhere. I've been using that. And that was donated by Team Gleason, which I feel like freeing is the word. I was able to help the girls' lacrosse team because of that. There's no way I would have been able to be on the sideline and doing what I was doing at their practices if I hadn't had that available to me. And to just be able to go outside and keep up with the pace that everybody else is, it's been pretty impactful for me. 

[01:18:37] MBH: Oh, that is great to hear. And you know what, Sam? You've been so gracious throughout in talking about your community and the lacrosse team. So let's give a little shout-out to the name of that community and the name of that lacrosse team. 

[01:18:54] ST: Yeah. I grew up here in Mariemont, Ohio, and Mariemont City School. That is currently um the community that I moved home to when I was diagnosed. I had to move back home with my parents. When I moved back home, I knew I wanted to help out and to find a way to volunteer with kids and to Ð unfortunately, because of my lacrosse coach and what I was going through, to kind of keep his legacy going. And then, also, share how much I learned from him with a group of girls who has met him and have also been impacted by stories. 

I ended up volunteering for the girls' high school lacrosse team who I played for growing up and who my Ð where I had met my lacrosse coach who had ALS. And also, where my dad coaches. It's fun to be able to be with my dad, to be a part of a team and working with kids since I can't do that in my job anymore. And then, also, to be a part of a community and a legacy that my coach left here, which is Mariemont Lacrosse. 

[01:20:48] MBH: And my girls might not like me saying this. But they're also really good lacrosse. My girls don't play for Mariemont. They play for rival teams. And it's always fun to play Mariemont because it's a great lacrosse program. 

[01:21:02] ST: Yes. It's been pretty, pretty cool to watch it grow. And my sister was younger than me. So she went through it after I went through it and was a part of a lot of the state wins. Being able to be a part of this community that's so small and have so many state wins is actually pretty impressive. 

[01:21:33] MBH: Absolutely. It is a great program and a great community. And they've been so supportive of you and Coach Graham who was a long-time coach at Mariemont. 

[01:21:45] ST: Yes. 

[01:21:48] MBH: And that leads us to talk a little bit about the book you are writing and the legacy that you spoke about when I first met you at the lacrosse half-time. Your book is called Staying Loudly. And that's the same name as your blog, right? 

[01:22:08] ST: Yeah. I think that might be what ends up being called. I don't know for sure yet. But Ð 

[01:22:15] MBH: TBD. 

[01:22:17] ST: Yes. I've been writing my blog. And a lot of people have encouraged me to write a book. And it was always my dream before all this to write a children's book. But maybe because of all this, it might not be a children's book right away. It might be a real-life story kind of book. 

Bits and pieces of my blog probably will inspire a lot of the book. But, yes, I don't know what it's going to be called. But it's very much going to be centered around my journey leading up to my diagnosis. And the incredible people in my life and the community I live in. And how much that has impacted my story. 

And then through all of that, how much it's important to talk about ALS, and my age and being a female with ALS. Those are kind of my goals with writing something and to be able to share. So that when there's another fem out there who's going through a diagnosis and googling and trying to find a reflection, maybe this is Ð this could be that. Yeah, that's kind of where that is playing in. 

Also, a little bit back to Team Gleason, they have provided me with the program Dragon. I'll be writing it with my voice since my hands don't let me type. That's my big challenge is saving my voice so that I can write that way. And then if my voice gives out, I'll have a head mouse through Team Gleason. And then, also, further down the line, probably Tobii. Or one of the communication devices that uses Ñ lots of work to be done on that end for the making of the book.

But definitely, a big part of it is the legacy part that you were talking about. Wanting to be able to share my story but also honor Graham's story was a huge reason of that game. But also, coming to a community who I knew supported and backed him up. I wanted to be able to honor that and not feel as though I'm taking away from his story or Ð I don't know. Feeling I'm taken away from his story or like overpowering with mine. Being able to share it and to honor him is my biggest goal. 

[01:26:20] MBH: Wow. Wow. Well, I did not know coach Graham. But something tells me that he would not be looking as anything but an honor for you to share. With that, we're just about out of time. Would you mind? I know we've talked a little bit over. But would you mind going through what LEGACY stands for? 

[01:26:45] ST: Yeah The high school girls' lacrosse team sat down and decided to create a vision and mission. And so, they created their statement through the word LEGACY. And so, L stands for Ð each letter stands for something. L stands for love, which we interpret as love yourself, love others, love your family, love your community. But also, in the game of lacrosse, love the game and everything that makes the game possible. 

E stands for energy. We kind of describe it as bringing the juice. But bringing the joy to the game. Playing with joy. When somebody's cup is looking a little less empty, be the one to fill it for them. If you're feeling a little empty, vulnerable and say I need something to pick me up. And bring that energy for others when they need it. 

G is for grit, which I feel like G is for Graham and G is for grit. But grit means Graham. Graham was the epitome of grit. When life throws something hard at you as not why is this happening to me? But what can I learn from this and then dig in. Rather than sitting and letting it trample over, push and see what you can learn from it and grow. 

Trying to spell it wrong. A is attitude. So, show up to the game obviously and be a positive person on the team. Respect yourself and respect others. But I also think attitude kind of also tags in with gratitude. Be grateful for the opportunity to play, the opportunity to be where you are. To have the community that you have in the people to support you and to give yourself some grace when you're working hard. 

And then C is competition. Competition is important for us because we have these high standards for ourselves and as athletes. And so, yes, work hard and play hard. But also, don't beat yourself up. As long as you're giving your full effort, that's all you can ask. And so, that's competition. 

And then Y is simply yours. But I kind of changed that into your responsibility. So you have responsibility to your community, to yourself, to your team, to the people you love and you know to live your life to the fullest. To love it until the very moment. Every little second, minute, hour, just soak it all in. Even if it's the worst day ever, you can grow from it and you can learn from it. 

Even love and dig into those hard moments. And I think with all of it, the legacy in general is to share your story. But also, realize your story is a part of so many other people's story. And just honor and represent everybody who's ever helped you out by living to the fullest. 

[01:32:30] MBH: Well, that is so beautiful, Sam. And thank you for sharing your legacy and your story with us today. I just feel so honored that you did. And it was such a gift to meet you. It was probably only six weeks ago. But it seems like it was a year ago. It's been really great to get to know you through preparing for this podcast. And I know that we will be keeping in touch. So I look forward to talking with you soon. I'm only five minutes from Mariemont. 

[01:33:03] ST: Thank you so much for having me and for reaching out. 

[01:33:07] MBH: Well, again, thank you so much. It is our pleasure. And we will be in touch. Have a great day. 

[01:33:13] ST: Thank you too. 

[01:33:15] MBH: Thank you. 

[OUTRO]

[01:33:17] MBH: Thanks for joining us here at Keys for SLPs, providing keys to open new doors to better serve our clients throughout the lifespan. Remember to go to speechtherapypd.com to learn more about earning ASHA CEUs for this episode and more. 

Thanks for your positive reviews and support. I would love for you to write a quick review and subscribe. Keep up the good work. 

[END]


KFSP 66		Transcript

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