EPISODE 80

[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.

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[EPISODE]

[0:01:24] MBH: Welcome to this episode of Keys for SLPs: Keys to Starting a Dysphasia Support Group as Part of a Private Practice. I am Mary Beth Hines. Before we get started, we have a few items to mention. Here are the financial and non-financial disclosures. I am the host of Keys for SLPs and receive compensation from SpeechTherapyPD.com. Kristin Winter is the owner of a private practice. She receives an honorarium from SpeechTherapyPD.com for her appearance on this episode. She is the co-facilitator of Dysphasia Digest, endorsed by the National Foundation of Swallowing Disorders.

Now, here are our learning objectives for today. One, explain the purpose of a dysphasia support group. Two, develop a plan to start a dysphasia support group. Three, identify three positive outcomes resulting from a dysphasia support group. Now, we welcome our guest today, Kristin Winter, MEd, CCC-SLP. Kristin has specialized in treating adults with speech and swallowing deficits for over 20 years. She received her master's degree from Florida Atlantic University and her bachelor's degree in speech pathology from the University of Florida. She received ace awards for the past four years from ASHA for exceeding the requirement for continuing education hours, earning 70 plus per period. Kristin will be presenting at her Florida State Boards Annual Conference in Daytona Beach this summer. Kristin works closely with people with head and neck cancers, voice problems, and Parkinson's disease. She is passionate about advocating and educating her patients, their caregivers, and their families, which led her to facilitate the Dysphasia Digest of Florida support group for people with swallowing impairments.

All right. Well, welcome, Kristin.

[0:03:17] KW: Thank you so much for having me tonight.

[0:03:19] MBH: Well, we are so happy to have you here. It was so fun to meet you at ASHA. One of my favorite things about going to ASHA and meeting people from all over the country is learning about new things that I have not been aware of. I actually interviewed someone a couple of years ago who had a dysphasia support group at a university clinic, but I had never heard of anyone having one as part of a private practice.

[0:03:46] KW: Yes, it's been fantastic. We started in 2020, and it's just grown ever since. So it's just been a real passion of mine for several years now. 

[0:04:00] MBH: Well, that is wonderful. Tell us about your journey as an SLP, and what led you to start the Dysphasia Digest of Florida.

[0:04:08] KW: Sure. I, I think, probably like many people working with adults, I've worked in hospitals, acute care settings, SNFs, home health. I think I've pretty much done it all. Was the lead speech pathologist at my local hospital for many years. In 2020, I decided to start my own private practice in my town. Of course, as many of you all know, that was during the pandemic, and I was just really seeing that there was a need for outpatient speech therapy in my community. 

I met a friend of mine, Maggie Donaker, who ran what was the Dysphasia Digest of Sarasota, Florida, which is over on the West Coast. I am on the East Coast over in Stuart, Florida. We actually met at a conference, at a FEES conference. FEES swallow study conference just before the pandemic. We met there, kept in touch, spoke a bit through LinkedIn. She asked me if I would like to be the co-facilitator of her Dysphasia Digest group. So I ran a stroke support group at the hospital for 10 years, so I had quite a bit of experience running a support group. Just in our many conversations, that's just sort of how that sort of segued into her asking me to help her out. And we really just saw a need on the East Coast and West Coast of Florida, and wanted to open it up to everyone in Florida. That's really how it all began. 

[0:06:11] MBH: Well, that is wonderful. Are most of your Ð the people in the support group, are most of them part or have been part of your two private practices? Are you getting people from all over the state?

[0:06:27] KW: You know what? It's honestly a little bit of both. We both do encourage our patients in our practices that have dysphasia to join the group. But we've also done quite a bit of marketing to head and neck cancer, or cancer centers, other hospitals, nurse practitioners that we know, case managers that we have some great relationships with. So we've done a bit of marketing to them, and then they also refer people to our group. We also have a website, dysphasiadigest.com, and we have had a few people reach out, just found us on Google, and then found the website, and have joined the group just through our website.

[0:07:21] MBH: Well, what a wonderful resource to the people of Florida. Now, can you join if you are not in Florida?

[0:07:29] KW: Yes. Oh, yes, absolutely. Our speakers often sometimes are out of state. So anyone, anyone can join. We are just based out of Florida.

[0:07:40] MBH: Okay. Well, that's great. Okay. Tell us about the mission of the Dysphasia Digest of Florida.

[0:07:48] KW: Sure. Really, our mission is to assist, and support, and just really to provide that camaraderie for those with dysphasia. We have found that most of the people in our group that stay in the group for months and years on end now do have head and neck cancers. They truly have more of that long-term dysphasia. But we also have others with strokes, and Parkinson's disease, MS, and some other neurological type disorders. But we call ourselves a support group, but we also like to frame it sometimes to people that we are more like a workshop, an educational workshop where you can come, ask questions, ask the speech pathologist questions, or ask the speakers, and the group questions. Then, those that are in the group also provide support as well.

We both have learned through the years that some people are a little bit hesitant to come to a support group, that they don't want to be in a group where people are upset, or really sharing sad stories. But again, just to be able to provide that camaraderie, and that common link that they all share. Many times, everyone's laughing, and just really having a wonderful time, and supporting each other on Zoom, then even off Zoom. They might call each other, or email, and ask questions. It's just really been a fantastic resource for our people in Florida with dysphasia.

[0:09:49] MBH: Well, that is great. Now, tell us a little bit about the format.

[0:09:52] KW: We meet on Zoom. We have asked our group members if they'd like to meet in person. But oddly enough, everyone that's been in the group has been happy just to stick with the Zoom format. We meet for an hour and a half. We meet from 6:30 at night until 8:00 Eastern Standard Time. We have had people join from other time zones. We found that the hour and a half is really needed, especially if we have a speaker. The speaker might speak for anywhere from half an hour or 45 minutes. Then, we'd like to leave a lot of time for questions.

Then, sometimes the speaker might say goodbye and wish everyone well. And then, the people in the group stay on, and then that's where they get to chat, and again, sort of provide that support from one another. Ask about, what's gone well since the last month? What hasn't gone well? What have you learned? Do you have anything new to share? And even sometimes, even after that hour and a half, we have to kind of shut it down and be very, very aware of people's times, and honor that, not go too much past our 8 PM. But we've just found that an hour and a half time is just a good amount of time. Occasionally, people join late or leave a little early, and that's fine too.

[0:11:24] MBH: Well, that's great. Okay, so it is led by two SLPs, or do you tag team? One does one month, and one does the next?

[0:11:32] KW: No. Yes. Typically, almost every month, it is both of us on, and then we have other speech pathologists that love to join as well. Especially when we bring speakers that are promoting products, or services, or things like that. We often get other SLPs that join. Then, we'll even ask if they'd like to add anything, or sometimes some of the people in the group, ask them their opinion on things. It's great. We've had grad students participate, undergraduate SLP students that are just wanting to learn a bit. We really welcome everyone.

[0:12:17] MBH: Well, that is great. Now, you mentioned speakers. Do you have a speaker every single month?

[0:12:22] KW: No, that varies too. I would say, six out of the 12 months out of the year, we have a speaker. Sometimes, and we've gotten some feedback, and we've surveyed some of the members in the group. Sometimes they do just like to get on, and really just chat. Some of them with PEG tubes might have questions, or about their supplements that they drink by mouth, or the tube feedings that they have. They really just like to bounce things off and questions off one another. That hour and a half to sometimes just goes by fast. Maggie Donaker and I, we often come with questions and with things to ask. But oftentimes, one question leads to another, and then things just sort of organically evolve out of that. Then, the conversations just always tend to flow.

Some of the group members have been on, one of them for two years and three years. So some of them I've never even met in person, or actually, I don't think any of them have met in person.

[0:13:35] MBH: Oh, really?

[0:13:36] KW: They know one another, because they're on every month. So it's really great. We usually start off with like a little introduction between Maggie and myself, and where we introduce the speaker, we might introduce some of the new people in the group, or the new speech pathologist in the group. We always tell people, sometimes they come with their video on, sometimes they leave it off. We tell them, whatever you feel comfortable with. If you don't feel like sharing, if you're just there to listen, that's perfectly fine too. We do have someone that attends pretty regularly. She's told us on the sidebar that I'm just here to listen. That's perfectly fine. We found that just by leaving sort of that open format really just makes it very comfortable for everyone. It kind of allows those conversations just to evolve sort of organically within the conversation.

[0:14:39] MBH: Wonderful. What is the age range of the participants?

[0:14:43] KW: Well, it's all adults. I would say, typically, they're around 35 to probably about 85 years old. 

[0:14:53] MBH: Okay. On the younger end, what are their diagnoses?

[0:15:01] KW: We had one younger gentleman with a stroke. We did have someone on with MS. Sometimes, they come on for a time or two. and just say, "Okay, thank you so much. This is what I wanted to hear for tonight," and then we don't see them again. We do send out emails every month, reminding everyone. We typically meet the third Thursday of every month. Next week, or next month, sorry, February 2024, we are meeting on the second Thursday of the month. But we try to Ð we try to have it at a time too that is convenient for most people we talk to about, "Well, should we move this during the daytime?" People have said, no. They're happy with meeting at night.

Again, most of the participants do have some type of cancer, but not all. And the ones that are there with cancer, we sometimes have those with Parkinson's or strokes, they're always asking, "What are you doing? What's working well?" And just everyone there with a swallowing disorder just communicates and just supports each other as best they can.

[0:16:23] MBH: It's wonderful to have that support. You mentioned the speakers. For other people who are thinking, "Oh, this would be a great thing to add to my private practice." Can you tell us about some of the speakers and some that have especially worked well, and maybe a type of speaker you would not suggest?

[0:16:42] KW: Yes. Well, most recently, I'll give her a little shout out. We had Brooke Billman, a lot of people know her. She knows quite a bit, very well versed in head neck cancer, and lymphedema, radiation, fibrosis syndrome. We had her speak, and they had lots of great questions there for her. We've had someone on from the Tongueometer, from Mobility. We had a prosthodontist on from Savorease. We've had Dr. Eric Flicker speak about acid reflux and LPR. We've had a very, big, wide, gamut of different speakers. We've had a social worker that provides counseling and then left information available if anyone felt that they needed counseling. We've had a nutritionist.

For anyone that's thinking about starting their own dysphasia group, you really could almost Ð you could ask those speakers maybe even year after year, or get maybe someone else to speak year after year. But I think, people like to hear from the speakers, from the experts in the field, and then they also just really like to hear what's the latest and greatest dysphasia modality or resource out there for me. What can I talk to my speech pathologist about? What can I ask my doctor about?

They really enjoy that too. We have a few of them that tell us like, ÒWow, I wasn't told any of this when I was going through my treatments. I had no idea my swallowing was going to be this bad. I had no idea that I needed to be super vigilant about, say brushing your teeth.Ó We talk a lot about oral care, and brushing your teeth, almost in every meeting. Because again, it really is. It's only 12 times a year that we meet, and we always have new people on. We'd like to be sharing that same method, just about having great oral care. and brushing your teeth, and how important that is in preventing aspiration pneumonia.

[0:19:29] MBH: Exactly. On average, how many people attend each meeting? 

[0:19:35] KW: It varies. Sometimes we have about six. I think this last time we had 20, 25. It depends on, I think the speakers, the interest level, maybe even sometimes, that night, if a certain Ð people can join. But it's always, again, it's always just a great group. We love it too when graduate students come on. We've had someone interested in maybe becoming a speech pathologist, and just feel like it's a great learning opportunity all around.

[0:20:13] MBH: Yes, it is. Yes. Do you have an affiliation with the University of Florida or with the university? Or did the graduate students just find you?

[0:20:22] KW: Yes. No, I actually don't. We have reached out to the NSSLHA group at the University of Central Florida, which is in Orlando. But honestly, Mary Beth, that's a good idea. That's something that we should do. We have had other graduate students reach out, email us, and say, "Oh, hey. Do you mind if I jump on? I need to observe a few support groups." That has happened. But there's quite a few universities in the State of Florida, so very good idea. We should reach out.

[0:21:04] MBH: As far as Ð it's on Zoom, online. As far as costs go, are there any costs that people should be aware of?

[0:21:15] KW: No. So we are a free group. Occasionally, we have had someone who wanted to offer a donation, but no. We are free and open to the public.

[0:21:28] MBH: Excellent. Okay. You also mentioned that you had a nutritionist at one point when we talked, come to the group. What did the nutritionist share with the group?

[0:21:42] KW: She talked a lot about Ð the participants meeting with their own nutritionist, or their own dietitian, and just calculating if they're eating the correct amount of calories. If they're sustaining their nutrition, if their weight has remained the same, if they're eating enough proteins, carbs, and fats, or if they do have a feeding tube, is it the right feeding tube, or supplement? Or should they be supplementing oral supplements? Just some different things like that. They all had some great questions for her too.

[0:22:30] MBH: That's wonderful. Okay. How do you market and obtain referrals from other SLPs, physicians, and nurse practitioners?

[0:22:40] KW: We have brought our fliers, like I think Ð like I said earlier to the local cancer center, or to radiation oncology offices, and oncologists, GI physicians, ENTs, general practitioners. I've met with actually a few nurse practitioner groups. That's become much more popular. We've gone to our local Council on Aging and dropped off flyers. Then, just reaching out to our local speech pathologists, whether they're in the hospitals, or in an outpatient setting, and just dropped off flyers, and ask them if they would please share. People are always willing to share so that others can receive that great support.

[0:23:42] MBH: All right. Well, let's talk about some case studies. Over the course of three-plus years, you've had a lot of success, and a lot of people have gained a lot from being part of the group. I imagine that most of these people would not know other people with dysphasia necessarily. Would you say that's a fair assessment?

[0:24:05] KW: Yes. Yes. I think a lot of these people do feel isolated, and they do feel like they are alone. Eating is so social, and one of the most fun things that we do in our daily routine. When someone is not able to eat and drink like they used to, it can be very saddening to them, and they really find just wonderful support through talking to others about it, laughing. Maybe every once in a while, shedding a tear. But it just really brings them all together and makes them feel like they're not alone.

[0:24:52] MBH: There's nothing like being able to talk to someone else who's gone through something similar, that you've gone through. All right, so some case studies.

[0:25:01] KW: Okay. One gentleman, most recently, when he first came to our group, he had a PEG tube, he was stage four base of tongue cancer. Only having ice chips and water at home. Through his speech therapy, his home exercise program, going to a certified lymphedema therapist, receiving a tactile medical Flexitouch pneumatic compression device, he was able to advance from PEG tube feeding all the way up to now having a minced and moist diet, and then liquids. But he did admit, and he admitted to me privately that he almost felt guilty sharing that story with the group. But I told him, "No, no, no. The members of the group are so happy. They want to share your positive experience. They want to cheer you on." 

So he did share, and then he got his feeding tube removed by his doctor, so he was very happy to share that. Everyone in the group really was happy. There are some that still have feeding tubes, and they eat a little bit, pleasure feeds by now. But I just love how the other group just supported him. and lifted him up in his great accomplishment. 

[0:26:39] MBH: Oh, that's great. Now, he was Ð tell us about the tactile Ð what did you mention? The tactile?

[0:26:47] KW: Yes, pneumatic compression device. It is a vest device, vest on the chest, and over the head. Sorry, I don't work for them, so I hope I can explain Ð

[0:27:03] MBH: No, no, that's okay. I think it'll be interesting to people.

[0:27:08] KW: Right. So it is a pneumatic compression device that is attached to a pump that provides like a pillow of air and helps to slowly move that lymphedema, and that fluid away, possibly from the cheeks, from the segmental area, from the neck, and then from the chest, and divert it to the armpits. The participants wear that. I think it's for 27 minutes. They encourage people to wear that two times a day. He's had just really, really great results. He does some of his own manual lymphatic drainage himself. But then he also wears the vest and the headpiece two times a day, and just really, again, had just super success with that.

[0:28:07] MBH: Wow, that's wonderful. Was he in feeding or swallowing therapy?

[0:28:13] KW: Yes, he was with me, he was my patient, actually. So yes, he came to me twice a week, for about 12 weeks, and he was a Snowbird. In Florida, we have Snowbirds, where people live up north, and then they come down to sunny Florida for a few months. He would go back up north, and then visit his doctors for about three to four weeks. And then, the therapy would halt and stop for a little while. He was great at doing his home exercise program. Then, he would come back and we would start up again. But very, very proud of him. So much of it is what he did, but I hope that I was a little part in just educating him, and empowering him to just be super strong, and fight for his recovery, and he did. Very proud.

[0:29:07] MBH: That is so exciting. How long have you been treating him?

[0:29:11] KW: It was about a year, a little over a year. But again, holding off a bit with those little bit of breaks.

[0:29:21] MBH: So nice that he was able to share his story with the rest of the group and they supported him.

[0:29:28] KW: Yes, I know.

[0:29:30] MBH: Well, that's a good one. Congratulations on being part of that team. 

[0:29:34] KW: Well, thank you.

[0:29:38] MBH: All right. Well, how about another one?

[0:29:41] KW: Like I said, the others in the group have similar stories, and have head and neck cancer. I'll tell you, the ones I'm thinking of, some of them are still Ð they still have feeding tubes. But they have pleasure, they're able to eat, and have pleasure feeds as well. But we had one gentleman that had aspiration pneumonia three times in about an eight-month period. That he came to our group, and we talked to him a lot about brushing your teeth, even three times a day. Not just the morning and night, but morning, afternoon. Then, at night before you go to bed, using a great quality mouthwash. He felt that just by us telling us that Ð telling him that. Keeping up with his walking routine and staying physical, he didn't get aspiration pneumonia again.

We feel like, we hope to say, maybe that was another one of our success stories. But he said, he said over and over, new people that join the group, ÒI didn't know just how important that was.Ó Everyone knows, "Yes, of course, you need to brush your teeth twice a day." But for him, I think brushing three times a day, or every time after he eats, he's got to brush his teeth. He pretty much did a Fraizer free water protocol where he would brush his teeth, and then have water at home as well.

[0:31:29] MBH: Did he say before the group, did he say how many times a day he was brushing his teeth before that?

[0:31:36] KW: He would say twice. He would definitely say twice, he was up to three, sometimes four, or five. We talked to him to just about being more physical, and getting exercise, and walking, and helping that lymphatic system too. He took up a great walking routine. So he really feels that those two things added to his daily routine just helped, help prevent aspiration pneumonia. Because he's definitely a chronic aspirator, a functional aspirator. He knows that he does, but he wants to still consume food and drinks on occasion when he can. So now, he just feels so much better equipped to do that, where he didn't feel as equipped prior.

[0:32:30] MBH: What are your current or future projects or plans?

[0:32:37] KW: We continue to meet in 2024. We have a few speakers lined up. Actually, Maggie Donaker, who some people know, she is pregnant. 

[0:32:51] MBH: Oh, how exciting.

[0:32:55] KW: Yes. Next month, she'll be out of the group for a few months or so. I actually have my CF that's starting with me, actually in about two weeks here. She will be my co-facilitator. I think it'll be wonderful, it'd be a great learning experience for her. She'll ask some speakers, and I'll have her really run the groups and I just think that'll be, again, just a super opportunity for her to learn and how to better help those with dysphasia.

[0:33:30] MBH: Well, that is great. It's for the patients or people with dysphasia. But you do have some caregivers who participate as well?

[0:33:41] KW: Yes. Caregivers, or spouses, or even friends, sure, anyone.

[0:33:47] MBH: That's great. Thank you, Kristin Winters. We truly appreciate the information that you provided about Dysphasia Digest. I think it's very helpful to other SLPs, who own their own private practices, or maybe who work in another outpatient setting, that they would be interested in starting this group. You've given them a lot to go on, and it's a great way to support our community.

[0:34:12] KW: Yes. Well, thank you so much for having me. This was great. I'm happy to share.

[0:34:16] MBH: Well, thank you. Take care. Have a great night.

[0:34:19] KW: Thank you. You too. Bye-bye.

[0:34:20] MBH: Bye-bye. 

[OUTRO]

[0:34:21] 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's 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 80		Transcript

	©Ê2024 Keys for SLPs Podcast	1