The Difficult Dance: The SLP’s Role in Huntington’s Disease

This episode delves into the intricacies of Huntington's disease, derived from a recent patient encounter that underscored the challenges faced by speech-language pathologists. We provide a historical overview, tracing the condition back to George Huntington's 1872 paper, and discuss its neurodegenerative impact on motor and cognitive functions. Emphasizing informed consent in dysphagia treatment, and discuss advocating for a patient-centered approach that empowers individuals to make their own dietary choices. We also cover the progression of Huntington's, care challenges, and the importance of daily structure in enhancing patient quality of life.
Huntington’s Disease and the SLP: What does evidence-based practice look like when the disease is progressive, fatal, and relentlessly complex?
This week on Speech Talk, Emily and Eva discuss clinical management of Huntington’s disease in long-term and residential care settings. Using a comprehensive 2007 primer for speech-language pathologists, we explore dysphagia progression, dysarthria, AAC challenges, behavioral supports, staff training, and the importance of early education.
We also reflect on real-world clinical decision making with a late-stage patient — including thickened liquids, unintelligible speech, low-tech and high tech AAC, impulsivity, weight loss, and the emotional weight of progressive decline. Because sometimes evidence-based practice isn’t about fixing — it’s about guiding, adapting, and supporting with intention.
Note to our listeners: Your headphones are not broken, the audio on this episode is a little funky (all Emily's fault). It is still worth a listen and we promise it won't happen again :)
Citations
Klasner, E. R., & Yorkston, K. M. (2007). A primer for speech-language pathologists managing clients with Huntington’s disease in a residential care facility. Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 17(2), 59–64. https://pmc.ncbi.nlm.nih.gov/articles/PMC4958906/
George Huntington (1872). On chorea. The Medical and Surgical Reporter.
Huntington’s Disease Society of America. History of Huntington’s Disease. https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/history-of-huntingtons-disease/
BBC News. (2024). Experimental gene therapy slows progression of Huntington’s disease. https://www.bbc.com/news/articles/cevz13xkxpro
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Speaker1:
[0:15] Hi, everyone. I'm Emily.
Speaker0:
[0:17] And this is Eva.
Speaker1:
[0:18] And you're listening to Speech Talk.
Speaker0:
[0:20] We're your research-based book club so you can do evidence-based practice in practice.
Speaker1:
[0:25] So let's start talking.
Speaker0:
[0:27] Emily, how was your week?
Speaker1:
[0:28] So this week I had a good week. I went to a virtual live CEU on informed consent with dysphagia and if you guys have not visited the dysphagia outreach collective the dysphagia outreach project they have really good free resources on implementing a informed consent procedure and guides it was really good it was super informative i actually listened to it on loud in my therapy gym and my co-workers were not as impressed as I was, but there for the conversation. Diva, how was your week?
Speaker0:
[1:14] Well, one, I just want to say I really love that consent in dysphagia is such an important topic and definitely ties into what we're going to be talking about today. But it's so hard when you want to have a certain recommendation and the patient doesn't like it, trying to get buy-in for appropriate diet textures or just respecting someone's autonomy and maybe they want to like cough and gag a little bit. And that's definitely the thing we have to navigate in the clinical space. So way to do that learning, way to get learned.
Speaker1:
[1:46] One of the biggest takeaways was that us as speech language pathologists should not be the ones really recommending any diets. We are there to provide education and the recommendation or the dietary decision should solely be on the patient with us facilitating informed consent through getting instrumentals and making sure people are very well aware of their choices and potential outcomes. Consequences and helping them not even make that choice just giving information on a platter and saying this is this is it
Speaker0:
[2:30] Oh that is radical and you know the more i think about it the more on that side of the fence i am because you can't control what people eat once they leave your facility so if they're not going to be doing that anyways might as well let them try something really difficult and potentially dangerous in your facility where there are resources and hopefully just educate and support them towards making a safer choice. But that person was out there being like, full, full patient choice. Dang.
Speaker1:
[3:06] Yeah, it's good. It's a good way to see the field going towards so it doesn't feel like, you know, we are the diet police. The diet police. Stop.
Speaker0:
[3:17] In the name of food.
Speaker1:
[3:18] We don't have to be saviors we don't have to be all this extra we can just use our brains to provide knowledge and document and step away doesn't we we are not saving the world sorry
Speaker0:
[3:31] I'm still on the diet policing it's like someone like knocking on me like let me see the textural order do you have a permission to be eating that sir.
Speaker1:
[3:42] Anyways, give me your.
Speaker0:
[3:44] Yeah, it's constant cartoons in my brain.
Speaker0:
[3:48] Anywho, fun this week. Let's see. I got to play Uno in a visual scanning group and I didn't play to support my patients. I played to win.
Speaker1:
[4:02] Did you win?
Speaker0:
[4:04] No, no. Oh, but I was really close.
Speaker1:
[4:10] You know what? You won because your clients did their job at visual scanning. So, you know, it was a good therapy session.
Speaker0:
[4:18] That was so sweet. And a highlight within that was that one of the folks in the group started by saying, oh, I don't want to, I can't play. I don't want to participate. But we just got her over that hurdle. And by the end, she tied to win. Because we could only play till the end of the session, not fully until someone had completed Uno. But she did so great and she was really a scan and left scan and right um with decreasing cues you'd love to see that scaffolded independence so that was a lot of fun you.
Speaker1:
[4:51] Know that you enjoy something eva when you tap into your jazz voice
Speaker0:
[4:54] I always have a really good time you can tell when I talk like this.
Speaker1:
[5:01] Into the episode. Today, we are going to be talking about Huntington's Korea. George Huntington, back in the ancient days of 1872, wrote a paper titled On Korea, which he based on the Greek word for dance. His paper was some of the earliest detailed writing on this condition.
Speaker0:
[5:24] Yeah. Anyways, it's not a fun dance. It's like a fatal, hereditary, progressive, neurodegenerative disease. If I ever am made famous for a dance, Emily, make sure that it is a fun one. If you're unfamiliar with the progression of Huntington's, the brain atrophies and these toxic clumps of repeating Huntington protein form, and there's kind of system failure across motor, cognitive, and psychiatric symptoms, which result in everything from impaired speech and cognitive linguistic function to dystonia, dysphagia, the chorea, the dance-like movements, and that bradykinesis or slow movements and difficulty with initiating movements.
Speaker1:
[6:07] Iba, why are we talking about this?
Speaker0:
[6:11] This episode is kind of an homage. I wanted to do an episode in honor of a recent patient. He was in a fairly late stage of his disease progression.
Speaker0:
[6:22] And I felt like I was really struggling to provide appropriate services for his needs. I must never have progressive degenerative conditions besides dementia. And while there is some correlation between how dementia and Huntington's presents, it was different enough that I felt that I didn't provide as good of care as I could have if I knew a little more. So I wanted to do a deep dive.
Speaker1:
[6:50] Iva, I love that though about you. And I feel like as a highlight to clinical therapists in this setting, we are always asked to treat people who we just feel like maybe out of our comfort zone. And just having that like, you know, I could do this better or I could do this again or if I could do it again just shows that you are a good clinician because you are thinking and reconsidering how you are doing something. And that's the best you can do. That's my motto as a mom.
Speaker0:
[7:18] As a mom, I think about what I could have done better to raise my children, and I maybe try it later.
Speaker1:
[7:25] Oh, yeah, less next time.
Speaker0:
[7:27] Yeah, well, somebody in grad school, I can't remember if it was a teacher, a peer, someone I worked with. I literally have no idea who said this, but they said that. If you feel like you did something wrong, consider writing the patient a letter. You don't have to send it. It's just to essentially process that feeling. And because we have this podcast, I don't write letters. I do research. And then I talk to you. But it is pretty cathartic to kind of go, you know what? I realized that at the time I didn't have the means to kind of bulk up on my knowledge. but I can take the time eventually, and I will do better by the next patient. So yeah, anyways, that inspired me to find this article written way back when in 2007.
Speaker0:
[8:18] It was called A Primer for Speech-Language Pathologists Managing Clients with Huntington's Disease in a Residential Care Facility. It's pretty short and amazingly comprehensive. Pretty much every article I found about SLPs managing Huntington's after that referenced this paper. So I just decided to read this paper. Let's get into it.
Speaker1:
[8:41] So an overview of the disease process appears between ages 30 to 50. The most salient symptom is the typical chorea or the jerky movements, dances that Ivo was talking about. There's also, again, the dystonia, bradykinesia, discoordination. The greatest indicators of placement in a nursing home are motor impairments, dysphagia, and weight loss. And believe it or not, depression is pretty common.
Speaker0:
[9:12] Yeah. Imagine having all of that taken from you, your speech, your cognition, your ability to move. It's almost like someone might get depressed.
Speaker1:
[9:21] Symptoms for this disease last 10 to 25 years. And, you know, not because it gets better, but Because death is normally the next thing, right? We're progressing to the great beyond.
Speaker0:
[9:33] Yeah. And the great beyond. It's like the Australian outback, but like not. The death from complications usually is like pneumonia, infections and cardiac failure. So right there, we have some pretty good indicators as to what speech therapists should be looking at for doing patient safety, infection and pneumonia. You know, for pneumonia, we're obviously looking at dysphagia. But for infection, we could be looking at, you know, cognition, safety awareness, mobility, not from the PT or OT side, but encouraging them to remain mobile within their safety parameters so that they're less likely to have, you know, skin tears and sepsis, things like that. Or, you know, one of the big ones is UTIs leading to infection. Anyways, the article recommends counseling. I don't know if you feel this way, Emily, but I feel like the more I learn about pretty much any condition or people's experiences in hospitals or skilled nursing, I'm like, everyone deserves therapy. Everybody. Everybody get counseling. Get counseled now.
Speaker1:
[10:40] Yeah, and it's always so hard because... I feel like for us, we have so much of that talking aspect to our language side, and we can provide counseling on how the person's doing and giving emotional support. But the actual therapy, therapy side of those things is still difficult for me personally to provide counseling.
Speaker0:
[11:06] Yeah, definitely. And obviously that gets harder. Your verbal expression is dwindling. Your intelligibility is dwindling. and you still have a lot of feelings and they're increasingly hard to get out. And so that can also result in behavioral management difficulties for facilities. It's, you know, knowing what to do with a person who is expressing the many big feelings they have physically. But going back to some recommendations from the article, they talk about structured daily routines, environmental spinal support, visual and verbal cueing. And that kind of gets back to that similarity with dementia. You know, a lot of those same stimulations are helpful. You know, over-learning at an early stage to help continue knowledge later on as the disease progresses. I also want to dive back into my experience with my patient. So he had pretty much all of the above impairments we've discussed. He could only eat and drink thickened liquids. He had poor prosodic control of his voice, so it sounded like he was always shouting. But his voice was also unintelligible. He had slurred words, rapid rate, and he was contracted with tremors. And that increased whenever he was trying to grab something or point to something. So I was trying to take all that in with him and go, what, what is the best use of my therapy time? Emily, what would you do?
Speaker1:
[12:32] That's hard. Cause like, what can you do, right? If they're only eating and drinking... Basically, liquids, thicken liquids. Can you do exercises to strengthen? I'd like maybe not because they're contractedly spastic. You know what those can, those, and it gets worse with volitional movement. So I don't know. I, I think like in general, knowing that they're going to be progressive, I would do AAC, maybe reaching out to AAC reps for eye gaze and And I don't know. I don't know, girl. I'm glad I'm not you. That's what I do now. I am glad that I was not in this situation because I don't know. I would have cried.
Speaker0:
[13:19] I would have cried. I did. I think at some point. But I really wanted to turn this to you and be like, what would you do? Like off the bat, because that confusion that you're feeling is something that was so highlighted it in the article that I read, that it's really hard for people to support in clinical management because the impacts are so multifactorial. They're like, oh, well, let's target strengthening. Oh, but they're contracted and have chorea. Oh, well, then let's do breath support. Oh, well, their breath is also impaired because of their posture. And there's layers and layers of things in terms of their overall impairment. So how we target it is very difficult. Anyways, here's what I did do. I targeted food safety like crazy because even with his recommended textures, he had aspiration, family knew about it.
Speaker0:
[14:15] And then communication was really where I felt like I was letting this patient down because he had impairments in learning for attention, memory, executive function. I wanted to do pacing and articulation, but he couldn't focus on the activities. The motor coordination wasn't there.
Speaker0:
[14:38] Eventually we did AAC but then the career was so bad he couldn't target small icons and he couldn't really focus on a large visual field and eventually I used our Canva account Emily to make him a really low-tech AAC with just like four pictures per page and that finally was okay because he could ID some images and read some words.
Speaker1:
[15:03] I love that you, you know, really pulled it down to his level in that and using that, those big AAC icons because, you know, it has to be personalized. And if it's functional, then you did a good job.
Speaker0:
[15:20] I think I would have really liked to have done a yes, no button, but I've never had them at any of my facilities. Have you?
Speaker1:
[15:26] I have used a switch button in my clinical rotations. I worked with one person who had cerebral palsy and loads of other things. And that was before I knew how to contact AAC consultants. So we got one of those buttons from Amazon that are... It sounds terrible, but they're for dog communication. Have you seen those?
Speaker0:
[16:01] No.
Speaker1:
[16:01] You just press them and you have like, you record your voice saying something. It's just like a switch button. And then he, like that person would use it to, you know, make simple requests, like just to gain attention to himself. Um so i have used buttons before but it was one it was one solid switch button and i used um a different switch button and working with kids. But it's, I mean, it's, it's cool. It's definitely like a cool thing to use.
Speaker0:
[16:34] Also, I wouldn't worry about where you get it from. Whatever works, works, you know?
Speaker1:
[16:39] Yeah. If you reach out to AAC, there's like a million of them. I always go through Lingraphica first because they'll do a benefits check and tell you which insurance companies or which AAC companies are covered by insurance. So I'd be like, thanks. Try one of the other ones if it's not covered.
Speaker0:
[16:59] That's great. I didn't know they did that. That's fantastic. I always got to ask you first.
Speaker1:
[17:04] So Huntington in general, let's go more of a deep dive into our domains as it pertains to Huntington's. So for dysphagia, the progression, as the disease progresses. The chewing is reduced. They have impaired self-feeding coordination and attention and impulsiveness.
Speaker0:
[17:28] And going back to what you were sharing at the very beginning, there's a lot of rejection of textual consistency. So that patient consent, that teamwork around feeding is really important. And what are some things we can do to help facilitate in nutritional intake.
Speaker1:
[17:48] I love this thing that they talked about in the article of snack clubs. So like just having something where people are socializing and having something to eat, ordering out something special, always possible to consult us and working with our activities department on picking something that might be best suited within their current, I don't know what to say because of the informed consent thing. So now I'm like all messed up on how to.
Speaker0:
[18:19] Yeah. Well, I think that does reflect part of the difficulties that we still have to kind of do... What our facilities recommend, because they're our employers.
Speaker1:
[18:31] We can't. We can't do that.
Speaker0:
[18:34] But we also need the patient to be the driver in their textural choice. If they're willing to go all the way down to what you're recommending, but they still don't like it, maybe in like a social snack club, you do something fun like put whipped cream on it, you know, something that's a transitional texture that's easy to process, but is special and yummy and a treat.
Speaker1:
[18:56] And being there when they decide that they want to have chicken domain anyways.
Speaker0:
[19:00] Yeah. Be like, I will smack you on the back when you cough on it. You got this. Something I learned in this article was that part of their weight loss is not just because of dysphagia. It's because they have an uncontrollable metabolism and variance in body temperature. Apparently, the variance in body temperature is not always consistent. And if it does happen, you should reach out to an MD or immediately. But apparently their metabolism is insane. And so they're just burning through calories and it's really hard for them to maintain weight, which is really important for maintaining muscle mass and overall system function. So that was big to me.
Speaker1:
[19:41] That is interesting. When I saw this in originally too, I thought that, yeah, their swallowing is degrading. Like the weight loss part of it must be because they cannot eat but body metabolism and temperature that's different moving on the speech and language start side of things so they have a dysarthria dysarthria which is like a difficulty coordinating your articulators for appropriate speech so it's is can be slurry or hard it's all different right and
Speaker0:
[20:20] You know what i.
Speaker1:
[20:21] Forgot about like spastic dysarthria versus flaccid
Speaker0:
[20:25] Dysarthria until like.
Speaker1:
[20:26] Fairly recently and i was like oh my gosh
Speaker0:
[20:29] Right so the the muscle tone in the art in the articulation of speech really results in slurred speech for huntington's patients and then on top of that they have poor coordination for respiration. So their loudness is all over the place. They are shortening their phrases. They can't tolerate long conversations because they're running out of breath and the speech is really effortful for them. So it's a really difficult linguistic progression, speech progression to manage.
Speaker1:
[21:03] Yeah. And then what do we do? We educate. We educate the patient on this natural progression of their speech. We educate their communication partners that They're not going to be able to yell to you across the room. Like if you want to talk to them, you're going to have to come close. You might have to watch them talk. You may have to be looking at something together to make sure you know what he's or she is talking about. So you're not getting frustrated in that interaction.
Speaker0:
[21:33] Yeah, especially since the AAC is not a one and done. You know, they, first of all, advanced AAC, like tablets and stuff is not necessarily recommended because they can't always hold the device or they may accidentally throw it, drop it or break it. So, frankly, low tech images or icons. But they were just saying like the word board, image board is probably the best thing to do. It's durable. It's easy to use. Super portable. And going back to the it's not one and done, they're not going to just be able to sign out their messages really easily. It takes a lot of work with the speaking partner to be like, oh, you pointed to the A. Is that right? The person then has to be like, yes, A or no A. They might have selected the wrong letter if they're doing letter based or they might be able to point to an image, but they can't turn the page in their communication book. So speaking partners are so involved in the use of AAC for Huntington's.
Speaker1:
[22:39] I think this article might be aging itself with this low-tech thing because our high-tech AAC options are so expansive. I think that, like, durability is probably not a thing anymore.
Speaker0:
[22:52] Not an issue anymore?
Speaker1:
[22:54] No, it's not. And I like I am very quick to be emailing AAC because if their insurance will pay for it then
Speaker1:
[23:04] Limiting, you know, the availability of communication is so 2007, man. Our AAC devices are portable. They have eye gaze that, you know, that can hook to their wheelchair, can hook to a table. Normally it only pays for one, but we have switches. I've seen someone use an AAC device that is behind their back and they listen to the words it's saying and they hit the switch button until it gets to the word they need. And then they, you know, they select that word. So even though it's limited in, you know, some of the accessibility things, don't count them out. Like it, and it can be put down. If you don't like one AAC device for your client, for whatever reason, try another one. Lingraphica too is so awesome with their support. I mean, they are mostly stroke support, but, and that's the one I work with a lot. But if you like don't like that particular device, try something else. I just downloaded a smart, I think it's SmartBox because they have an evaluators app that's free. You email them, they'll get you another tablet app. So you can evaluate someone's ability to use their smart box platform on your tablet and see if it's appropriate so you're
Speaker1:
[24:32] I don't know, 2007. We're working on.
Speaker0:
[24:35] I always got to check with you because I've had super limited access to AAC in my work. And so I just, I'm genuinely behind on what's available. Me and 2007, we got to get updated. But going quickly back to education, also making sure you're doing that education for dysphagia as well. Because early education about the disease progression and letting people know that likely they will eventually end up on puree, and that they have a high aspiration risk may inform whether or not they think they want to do tube feeding down the line. And you got to remind patients and families that, hey, even if when you started working on your Huntington's symptoms, you wanted a tube feed, you may not end up being a good candidate. You may have cognitive decline, so you don't remember that it's there and you want to jerk it out. You may, for other reasons, like frailty, may not be a good surgical candidate. So make sure they're just aware of what that picture can look like so that they can start making those decisions before things get too far along and potentially consent can be impaired.
Speaker1:
[25:53] Or making sure that, like, your wishes and wants are communicated very clearly to your POA so that when consent is impaired, somebody else knows your ultimate wishes.
Speaker0:
[26:08] Yeah, man, if you're out here and you have a partner or a parent who you would like to take charge in the event of a medical accident, go tell them what your preferences are. Go tell them if you're DNR, DNI, if you want two feet, if you want to have someone like pounding on your chest to see if they can revive your heart, like just go tell somebody. All right, because it's terrible when you have to get to these decisions made and you can either not communicate or you're unconscious. Just general PSA. Make sure someone knows.
Speaker1:
[26:48] So recommendations to the SLP. We want to be out of the box. We want to be functional. We want to be engaging and collaborate with activities. Try to get everybody involved. We want to get the patients involved in social groups to support engagement, support that actual functional communication in which you're going to be using these strategies.
Speaker0:
[27:18] Yeah. And if you're in a residential care facility, making sure that somebody with Huntington's has a social group that they're involved in because their family members are not going to be able to come in all the time. And if they're still up and out of bed, making sure there are other people in the SNF community or other, you know, residential care facility who are involved in this person's well-being, who are checking in on them, seeing if they had a good day. You know, when your only interaction is somebody coming in to check your briefs and give you medications, it can be very, very isolating. Anywho, again, I always feel like I'm ending on sad notes about stuff.
Speaker1:
[28:02] Yeah, instant brownie face.
Speaker0:
[28:05] Instant brownie face. I also didn't know about the Huntington Disease Society of America. Apparently, it's a national organization with a lot of local chapters. So check what's available in cities near you. And see what's available in cities near you.
Speaker1:
[28:23] We love it with the jazz voice.
Speaker0:
[28:25] And now, back to the future. Emily, tell us what we can look forward to. Yeah.
Speaker1:
[28:31] So way back in the dark ages of 2007, when this paper was published and we only use low-tech AAC for communication, there are no cures or treatments for Huntington's disease, only management strategies. The authors indicated that there was finally a gene identification for Huntington's disease. That was about as far as they had gotten. But 20-ish years later, we've made some progress.
Speaker0:
[28:58] Yeah, man. There's been some exciting news in the news. A new gene therapy treatment. It's crazy. I'm going to very briefly describe this. Over a 12 to 18 hour brain surgery, they are able to deliver DNA that reprograms neurons to produce microRNA therapy. Then the microRNA blocks the cells that provide the instructions for making mutant Huntington protein and lowering its levels in the brain. And it's been shown to reduce the disease progression by 75%. So again, not a cure, but a huge treatment strategy. Man, brain stuff. Thank you, neurosurgery and science out there.
Speaker1:
[29:48] Isn't that so cool? Like, that is amazing to be able to have these diseases. I mean, 2007 is almost 20 years ago, but it's still like, that's huge.
Speaker0:
[30:00] And the extent of what gene therapy is doing is expanding in other directions. So there's some more gene therapy that can extend the age of onset and part of how Huntington's works is that the Huntington protein which everybody's brain produces but for people with Huntington's disease it's kind of out of control it kind of creates these expanded proteins that build up basically garbage in your brain and become toxic the gene therapy can help with the cleanup process for that. So to help move some of those toxic blocks, people are out here. I saw something that was like, we're getting stem cells from teeth. And that has a promising trial. Like, it's magic. They're out here working magic.
Speaker1:
[30:46] I have not ever worked with someone with Huntington's disease, but I know my extent of understanding of Huntington's disease really comes from Selma Blair.
Speaker0:
[30:56] I don't know who that is.
Speaker1:
[30:58] Oh, my God. You don't know Selma Blair from Cruel Intentions?
Speaker0:
[31:03] I've never seen Cruel Intentions.
Speaker1:
[31:06] You haven't seen Cruel Intentions?
Speaker0:
[31:08] Yeah. Yeah, it's not just modern pop culture, I don't know. It's pretty much all pop culture, I don't know.
Speaker1:
[31:15] Oh, Selma Blair is a fantastic actress, and she has really been outspoken about her Huntington's disease diagnosis and the battle she's overcome with it.
Speaker0:
[31:29] Man, famous people out here just changing how the world sees disease. I love it. Michael J. Fox, that one lady with aphasia who's in the news who I don't know but everyone talks about, that other famous person who recently came out and was like, I have OCD, you know, all those people whose names I don't know.
Speaker1:
[31:49] I don't know these stories. But that's okay. We can look at Eva. That works together. I don't know.
Speaker0:
[31:59] Well, when I can't say the person's name or reference anything about them, I feel like you're excused from not knowing who they are.
Speaker1:
[32:06] Yeah, maybe I do know. We're just not enough context.
Speaker0:
[32:10] Also, something I'd heard about for Parkinson's, which is deep brain stimulation, DBS, can be an appropriate treatment strategy for people whose primary deficit is the chorea. And they're still pretty early on in the disease progression because deep brain stimulation can help improve the motor patterns by essentially modulating electricity in the brain. And we'll see. There was one more thing I saw. It was, oh, right, how now we can kind of map where these Huntington proteins that are mutant are happening in the brain and therefore make like a little map of the disease progression in someone's brain. We don't really know what they're doing with that yet, but it's still cool.
Speaker1:
[32:59] You gotta have a map to know where you're going.
Speaker0:
[33:01] Hey, yeah, that's positive sounding. And if you guys want to read anything more about Huntington's, there is an organization or website called HD Buzz, HD for Huntington disease, Buzz. And they are just out here publishing all of the updates on all the science,
Speaker0:
[33:20] on people's, you know, kind of op-ed stuff in the news. They're just kind of a hub for everything Huntington's. So if you're looking for more resources on the disease itself, go check them out. They're doing cool stuff.
Speaker1:
[33:34] And remember, you do not have to be the master of all things. It's okay not to know and to seek out additional research. Because our scope is huge and it's a huge disease and there's a lot of things. Whatever happens, you are helpful. Eva, you were helpful.
Speaker0:
[33:55] And for you listeners, I'm going to do my best to turn this really awesome article, maybe plus some AAC resources from Emily, into a nice little pamphlet for if you have patients with Huntington's, something you could provide them with to help guide your speech therapy and their understanding of the disease progression from a speech orientation. Hopefully I'll get that done by the time this episode is on the air.
Speaker1:
[34:21] Okay, guys, this discussion might be archived, but the research continues.
Speaker0:
[34:26] Bye.
Speaker1:
[34:28] You've been listening to Speech Talk.
Speaker0:
[34:31] Thank you, everyone, for coming to listen to our research book club. Until next time, keep learning and leading with research.
Speaker1:
[34:37] If you like this episode and you want to give us some love, please rate us on your favorite podcasting app. Leave a review and tell the world, because as podcasters, our love language is in positive affirmations.
Speaker0:
[34:48] If you have a research topic you want us to cover, or you have episode comments, clinical experience you want to share, or just want to send us some love letters, send us an email at hello at speech talk pod.com.
Speaker1:
[35:02] If you want even more speech talk content, check out our website at speech talk pod.com where you can find all of our resources we made for you copies of articles covered and Eva's blog, following these topics and more.
Speaker0:
[35:14] We're your hosts, Eva Johnson and Emily Brady.
Speaker1:
[35:17] Our editor and engineer is Andrew Sims.
Speaker0:
[35:20] Our music is by Omar Benzvi.
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[35:22] Our executive producers are Erin Corney, Rob Goldman, and Shanti Brooke.
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[35:27] To learn about Speech Talk's program disclaimer and ethics policy, verification and licensing terms, and HIPAA release terms, you can go to speechtalkpod.com slash disclaimers.
Speaker1:
[35:39] Speech Talk is a proud member of the Human Content Podcast Network. Human's office.
































