Aphasia Access Conversations

Episode #65: Nuts, and Bolts and S'mores and Aphasia: In Conversation with Marybeth Clark and Jerry Hoepner

von Aphasia Access Conversations | Vom 2021-02-25

During this episode, Dr. Janet Patterson, Chief of the Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System talks with Dr. Jerry Hoepner, Professor in the Department of Communication Sciences and Disorders, University of Wisconsin Eau Claire, and Marybeth Clark, M.S., speech-language pathologist at the Mayo Clinic in Eau Claire, about improving the lives of people with aphasia, both indoors and outdoors, through the Chippewa Valley Aphasia Camp. These Show Notes capture the experiences, recollections and wisdom of Marybeth and Jerry at camp. In today’s episode you will discover the philosophy of “Challenge by Choice” as a path to personal change and growth hear how activities that reveal competencies in persons with aphasia lead to transformations in many people – students, Aphasia Camp staff, individuals in the surrounding community, and of course the persons with aphasia themselves hear how the phrase, “We are all in this this together” takes on new meaning in the real life daily activities of Aphasia Camp. Dr. Janet Patterson. In 1997, with colleagues Tom Hintgen and Tina Radichel, Marybeth founded the Chippewa Valley Aphasia Group. Shortly after that Jerry started volunteering with the group and a beautiful partnership began. One of the outcomes of this partnership is the Chippewa Valley Aphasia Camp, which started in 2004. Tom Sather, Michelle Knudsen, and Carin Keyes are also part of the Chippewa Valley Aphasia Camp.  The Chippewa Valley Aphasia Camp meets at Camp Manitou near New Auburn WI, and is a three-day retreat offering people with aphasia and their family members, activities and resources to increase social interaction and to facilitate communication success in daily life. Faculty and students from the University of Wisconsin at Eau Claire partner with staff from the Mayo Clinic Health System to offer communication activities nestled inside outdoor activities. This community partnership provides support for people with aphasia while providing a firsthand field experience for communication sciences and disorders students. Janet. Welcome Marybeth and Jerry. The idea of experiencing communication in an outdoor environment is appealing to me, and I hope also to our listeners. I have several questions for you today as we explore your work in aphasia camp. Marybeth, let me start by saying how sorry I am that Aphasia Camp had to be canceled in 2020, and I hope it will be back in business, if not this year, then hopefully next year. Thinking back to 2004, how did the Chippewa Valley Aphasia Camp grow from your work with the aphasia group? What led you and your colleagues to envision a clinic camp program? Marybeth Clark. Janet, back in 2004, it was our dream to be able to create a peaceful, relaxing retreat for individuals with aphasia and their significant others. Ultimately, we were thinking about providing the optimal aphasia friendly atmosphere. We were very much influenced by the Life Participation Approach to Aphasia. Tom Hintgen and I had traveled up to see the Aphasia Institute, the Pat Arato Aphasia Center, and we were also influenced by Lynn Fox's approach to conversational intervention. Those are the key drivers in our overall thinking of developing this relaxing weekend retreat. We were looking to create a participation-focused weekend experience that fosters socialization, and meaningful, authentic activities, within the backdrop of conversation, and at the same time instilling a sense of confidence within the activity participation, fostering a hopefulness, and promoting a sense of wellbeing. Jerry has heard me say this a number of times, but I was really fortunate when I was a young girl to work at Camp Manitou as a counselor, and then as a program director for seven years. Those experiences at camp were some of the most memorable experiences that I've had over my lifetime and I'm still in contact with those friends and counselors, and people I worked with. We talked about different venues and it all came back to, why not think about the YMCA Camp Manitou? It's a peaceful, relaxing atmosphere that has the opportunities for activity, and relationship building. It’s quiet, serene, nestled in the woods, and yet has that rustic environment to it where people share cabins, there’s a main lodge, there's a dining hall, etc. So, it just seemed to be the perfect, or at least in my mind, the perfect backdrop to provide this type of a weekend retreat. Janet. It sounds beautiful. I can visualize it up in the northern woods. Jerry, what attracted you to begin volunteering in the Aphasia Camp, and kept you returning year after year? Dr. Jerry Hoepner. As you said, in your introduction, Janet, I started volunteering with the Chippewa Valley Aphasia Group shortly after its inception and had the honor and the privilege of being mentored by Marybeth and by Tom Hintgen. They were really well versed in life participation-based aphasia interventions before that was even really a thing. They would bring in speakers, so I got to see John Lyons, I got to do an introduction for John Lyons. I got to see Audrey Holland. You know, when I was just in my formative years, they took us on a trip to Speaking Out the very first Speaking Out in Chicago, and I got to see people like Roberta Elman and Aura Kagan and Ellen Bernstein-Ellis. I was just hooked. Fast forward seven years, and Marybeth and Tom came back from Pat Arato, and Marybeth said, “We're going to do a camp”, and I don't think there was ever any question for Tom Sather and I - we were just in. With that great mentorship and the opportunity to work alongside them all those years, it was just an easy decision. I grew up camping and going to camp and fishing all summer long with my dad and my mom, so it just made a perfect fit. What keeps me going, I think, is obviously the campers and the stories that we have about campers, the students and the outcomes that students have there. But what really, really keeps me going is the great colleagues that I've been able to work with over those years. Not only colleagues, but some of my closest friends, Marybeth and Tom and Tom Hintgen when he was still there, and Michelle, and Carin and everyone else at camp, and all of our community volunteers that continue to come year after year, and that includes my dad as one of the fishing experts. So that really explains why I'm a part of this and continue to just love this year after year. Janet: I know you mentioned earlier, Jerry and Marybeth, that when you are actually in the camp for those three days they are exhausting, intensive and focused to get everything done. I imagine there must be such rewards for you at the end of those days. Listening to you describe why you are involved in the camp and how you got involved, I can understand your feeling of whatever you have to put into it is worth it at the other end, both for yourselves and for the campers. I imagine there are numerous logistical arrangements that have to be planned and managed to launch a venture as successful as your Aphasia Camp, and to keep it running year after year. Would you talk to us about the nuts and bolts of how you plan and implement Aphasia Camp? That is, what happens in advance and behind the scenes to keep the lights on, those nuts and bolt tight, and the s’mores at the ready? Marybeth. Sure, back in 2004, the initial conversations that took place between myself, Tom Hintgen, Tom Sather, and Jerry involved meeting with the neurology division here at Mayo Clinic Health System, meeting with actually two of the neurologists here, and then describing the retreat weekend that we wanted to put together, talking them through some of the financial resources, and asking their permission to go ahead then to promote a weekend retreat that would be supported by Mayo. In order to make that happen we also needed to develop or find a partner that would be a primary stakeholder with the program moving forward. We decided that the best partnership for the development of camp would be the University of Wisconsin Eau Claire, primarily the Department of Communication Sciences and Disorders. Some of the financial and people resources that were utilized here at Mayo included nurses from the neurosciences department, occupational therapists, physical therapists, chaplains, massage therapists, and at that time, four speech-language pathologists. We also had to get the permission of the Rehab Services Department in order to help finance the initial weekend of camp, which looking back now was not a difficult thing to do, because of the fact that we had already identified a partnership with the university and we had also had the conversation with the neurology department. The initial planning that was involved with that first camp involved identifying the key stakeholders that we wanted involved with the camp. It was important for us to identify the key stakeholders that shared our philosophy in developing the camp. The idea that, “We are all in this together”, was valued by all of us and we were looking to provide a sense of community, a sense of activity, a sense of relationship, in terms of developing that peaceful, relaxing weekend retreat with individuals with aphasia and their significant others. The university partnership was actually the best partnership that we could have ever imagined, because of the fact that we had two speech pathologists that were teaching within the Department of Communication Sciences and Disorders. In addition to the fact that we knew that in order to build this relaxing, fun filled weekend for individuals, we would need a community to help us. We would need volunteers that would be trained in communicating with individuals with aphasia. We knew that we needed a lot of volunteers in order to make this happen. And the students at the university who were studying communication disorders, were our best allies in terms of putting this camp together. In addition to the university development with the students, and the trainings that were involved with the students, we also put together an Aphasia Camp board, including the staff of the camp, the speech pathologists, a massage therapist here from Mayo, who actually was so invested in working with us that she turned out to be a staff person that has worked with us for over 10 years in putting this camp together. We also included individuals with aphasia and significant others to participate on the board. The reason we did that is because we wanted their expertise in developing a list of activities and events that would be most enjoyable to people with aphasia and their significant others. It was important for us to hear their voice and to put their recommendations and their ideas forward with camp. Another key planning step is the budget or the financial piece. Putting together the staff of these experts, including physical therapists, occupational therapists, nurses, neuro nurses that could spend the entire weekend with us, a massage therapist, and chaplaincy required some additional financial resources. It was so positive for us to hear that back then and even up until most recently, that the Neurology Department or the Neurosciences Department helped us with the financing of some of these positions. The Rehab Services Department provided the occupational therapist, the physical therapist, and the time for speech- language pathologists. To be perfectly honest, we could not have put this camp together without that financial support, both from Mayo and from the University of Wisconsin Eau Claire. In terms of working on the collaboration of the funding, some of the key items that we needed to look at were: the cost for a keynote speaker; the cost of some of the activities or the main events that we wanted to provide; the student fee, whether we were charging students or paying for the students to stay at camp and participate; the overall camp cost, meaning the rental of the cabins, the rental of the camp property, the rental of all of the buildings; and any resources that we may have used at camp, including boats, or drivers for boats, or kitchen cooks, maintenance team, what have you. Those are just some of the YMCA camp costs that we needed to consider. And then there were the other resources, including people and activities, including golf experts, community volunteers, or what we call community experts. Those individuals that we've identified that share our philosophy, that are willing to invest time for this weekend, willing to learn a little bit about aphasia and the best techniques for conversation, and those individuals that are wanting to provide an experience that is challenging, yet support the individual at the same time in order to meet their goals or to help them to be successful. Some of those individuals included a golf expert, an artist, a musician, some of the university team from the Drama Department, other individuals were from the Technical Department, Nursing Department, and the Physical Education Department at the university. Also, there were community artists, including some of the musicians, and artists, and chefs within the community that we knew were willing to participate and willing to spend the weekend with us. At the same time, we also knew that we needed to give them some type of an honorarium, pay some mileage. Also, when you're looking at providing a three-day retreat, you also have to consider the fact that there's going to be meals provided throughout that entire time and when you invite the community experts, the community volunteers, we also have to have enough money set aside that's going to pay for their time at camp and for their meals at camp. Other logistical planning centers around meeting with the YMCA camp director and working through logistics, including the actual lodging, the numbers of cabins that are needed, the number of cabins that could be used by student volunteers, the buildings that may have to be renovated a little in terms of helping us with accessibility, or even the consideration of technology with respect to Wi-Fi. And believe it or not, when you're in a woodsy-type setting, when you're trying to create this rustic, relaxing, beautiful weekend on a lake, it's difficult to have everything work from a technology perspective. There were many phone calls and many meetings just to kind of talk through some of the technology pieces and the Wi-Fi pieces, and if we had an activity that required an abundant resource of electricity, or an abundant number of computers. We had to make sure that we were in the right location in order for all of that to work. We also had to work through other logistics at camp, including some of the grounds areas. This camp was designed for children and so the pathways to and from cabins initially were like dirt pathways, lots of stone on the pathways. The pathways weren't lit very well, we had some areas of access down by the lake, or down near the boat dock in the marina, which were fine for children walking between these locations or accessing the dock or getting down to the marina, but we needed to work through some of the logistics in order to have people in wheelchairs or people who walked with canes to be able to access that area successfully as well. So that was just one of the major logistics that was involved in those initial planning years. Another piece that has to be considered is the overall scheduling and planning of the activities. Once the aphasia camp board decides on their host of activities and events, we then need to match those activities with the best expert or lead individual for that specific activity, and then develop a schedule for that weekend. It's always been very important for us to have that schedule be balanced with enough rest and activity for the individual with aphasia. This has been something that we've learned over the years and something that we continue to check at all times when we're putting activities together. We want to make sure that there's that time for people just to sit down, relax, take a walk, or maybe just sit by the lake and rest for a little bit. So, we're always looking for that for that even balance. The planning of those activities is something that we take very seriously and involve our camp board members in putting that all together. We also take a serious look at providing activities that could be challenging for individuals, but at the same time, provide that key support that they need in order to be successful. So, we take time to look for resources that would be beneficial for people to be successful, whether it be the adaptive bikes, different types of archery tools, different types of rods for fishing, art equipment that will help someone be able to do some techniques one handed, different types of cooking utensils, or cooking resources that will help individuals be successful, any type of adaptive equipment that we may need for golf in terms of helping people. Those are just a few of the examples that we need to consider when we're putting this entire schedule together. Through this entire planning process, we have a timeline that's proven to be fairly effective in order to keep us on task and making sure that we're meeting the list of activities, the list of schedules, that financial pieces are set, we've got payments that are ready to be made, etc. So, the timeline helps us to keep things moving along. As it gets closer to camp, we make sure that professionals are those experts or community volunteers are provided with the training, that they need to feel successful at leading these activities at camp. We also look then to have one lead speech pathologist and for our team, it's actually Michelle Knudson, who is incredibly organized. She has the eye for looking at a schedule, looking at a list of campers, looking at addresses, phone numbers, contact information, all their information, and then helping to put that together and organize all the communication that needs to go out to these campers in order to help them prepare for the weekend at camp. That task alone, the communication and all of that preparedness that goes into place for these campers in order to prepare for that weekend at camp, that action is something that takes a great deal of time. We actually do need one individual to manage all of that communication. I think Jerry could talk more about the student aspect in terms of the student trainings, and what we do to help them feel more successful and more prepared for camp as well. Jerry: Yeah, I'm happy to weigh in on that. I think when we talk a little bit about a day in the life of Aphasia Camp, we'll talk a little bit about that process of involving students. But as you can see, there's a lot of details that go into running a successful camp and I just really want to highlight the importance of all of those partnerships that Marybeth talked about. The partnerships with the university and with all of those community experts, as she said, to really keep camp going. I was thinking as Marybeth was talking at the beginning, I wasn't actually full time at the university until maybe our fourth year at camp, so we didn't have a direct liaison, and we didn't necessarily have funding. So as Marybeth alluded to, in those first four years, students actually paid to go to camp, paid to work their butts off for an entire weekend, which is kind of remarkable if you think about it, that we found enough students that would come in and do that. We'll talk a little bit more later about how we did get funding in those sorts of things, and what opportunities that creates for students in terms of preparation and learning. But a lot of those early days were a little grassroots and you know, us heading over to the university, providing some trainings, and we've gotten pretty efficient and dialed in on how to deliver those trainings in a way that prepares the students to be effective, and so that we can choose students that are a good fit for the camp. Because not everyone is a good fit for that context, but we think we know which ones are. Janet: As I listen to both of you talk, I started out with a beautiful vision of a bucolic area, and of a lake and trees, and then I began to hear all of things that have to go into creating this bucolic scene, and oh my goodness! You speak of a lot of excitement and cooperation, and positive things – I commend you for the efforts you have made over the years to keep this camp running. You mentioned a few obstacles you faced, such as training students. I am wondering what other obstacles you may have faced in starting the Chippewa Valley Aphasia Camp in 2004 and in keeping it vibrant for over 15 years now? I am thinking of things like permitting issues, or accessibility challenges, or liability constraints? How did you successfully overcome them? Marybeth: Yeah, there were a number of obstacles. The relationship that Mayo has with the Eau Claire YMCA was also a benefit to us because of the fact that there were some events that Mayo at that time held up at this camp. So that ongoing relationship helped us in terms of working through some of the liability types of things you're mentioning or that permit piece. Mayo put together a waiver form that we used for all of our individuals attending camp. So that was one of the first pieces that needed to happen. The second thing, or one of the most important things that we had to look at initially was, what was our process going to be if someone were to get injured at camp, or if someone needed medical attention, and that was something that was looked at by the key stakeholders, meaning, the YMCA, camp, Mayo, the university, and the camp board itself. We wanted to be able to have that process in place then in case something would happen to an individual either with aphasia, or just one of the family members. So, one of the things that was important from a Mayo perspective was to have that nurse up at camp the entire time or for that entire weekend. And so right from the beginning of our camp days, we've had a neuro nurse involved with us up at camp. The neurologist, the nurse, and the camp director then helped us work through the process, or that medical process, including that transportation, what happens when something happens at camp, how do you get that individual to the hospital, how do you access that medical team, etc. Those types of things needed to be worked out for that initial camp season. Thankfully, we've actually never had to use that process, but just knowing that we've had that nurse available at camp that we've got that process in place, has actually been really appreciated. In terms of the camp itself, one of the things that we needed to talk through with our entire camp board is the fact that these cabins have 10 to 12 bunks in them, single bed bunks. They also have no indoor plumbing and no heat. So, thinking about camp on a fall weekend, which usually our camp is the second weekend in September, forced us to also think about the weather and how we were going to keep these people warm, how we were going to make sure that people were comfortable in these cabins with the fact that there was no indoor plumbing. And then also, in addition to that, work through any types of transportation issues that we might have in terms of getting people from their cabins down to the main lodge or assisting people in getting to meals in the dining hall. It was important to us to be able to work through all the accessibility issues so that no matter how much of a physical limitation an individual had, we would be able to provide an opportunity for these people to have a successful relaxing, enjoyable time at camp. And so, we worked with the camp director, and also with the physical therapists and the occupational therapists, and all of the speech pathologists to make sure that we had taken the necessary steps in terms of making the pathways more accessible to individuals. We needed to think about lighting the pathways in the evening, we needed to use those orange cones to make sure people would watch out for any of those roots or rocks or anything that may cause someone to stumble. We needed to work with the camp director in terms of additional docking that would need to be done to help individuals access pontoons or access boats safely. We also needed to talk with them about repairs that needed to happen within the dining hall in terms of making any type of steps that were too high for some individuals to access to make sure that we had some type of a ramp or some means for people to be able to go to those areas without any type of a risk. We also made a decision early on to rent golf carts, a number of golf carts actually, to be used so that people wouldn't be fatigued, that they'd have easy access to those activities that might be off the grounds, including like an archery range, or to be able to go up to an area that was maybe a quarter mile away, in order to enjoy some biking, or to be able to take a ride on a pontoon, which, from their cabin, maybe was a tenth of a mile. So, it was important for us to be able to provide that means of transportation for them, that ease of access for them. One of the things that we were surprised at finding out and I guess, from working up there, this wasn't too surprising for me. Our individual campers really didn't mind the fact that we had no indoor plumbing, or the fact that there wasn't heat within the cabins. Everyone who is signed up for camp or everyone that we had talked to about attending camp knew that this was a rustic environment. This wasn't a hotel. This was a place where you're going to have to carry a flashlight when you're out at night, or you may need to go to the other side of a building and into a wash house, if you wanted to use the bathroom. People didn't mind that, though. They were actually looking forward to that peaceful, relaxing weekend. So yes, to your question, there were obstacles. But actually, with everyone working together, we were able to work through all of the issues without too much difficulty. And to be honest, without a whole lot of expense. The camp director and the Eau Claire YMCA were very, very interested in providing this type of an experience for these individuals, so they were on board to help in any way that they could. Jerry: Marybeth if I can add, the YMCA over the years has really done a lot to increase accessibility, not just for our camp, but for all of the camps that happened in the summer with children as well. That’s something that, you know, it's still a rustic camp, as you said. But that accessibility has really allowed us to do a lot of things with outdoor activities with sailing, and as you said, pontoons and fishing boats and kayaks and all of those sorts of things. Marybeth: Yeah, exactly. Exactly. Janet:: It sounds to me like you had this wonderful vision, and there were obstacles, but you must have had fun overcoming some of those obstacles. I can hear it in your voices. I bet it took a lot of s'mores though and a lot of discussion during those numerous meetings. Jerry: And a lot of coffee. Janet: A lot of coffee is right! Tell us about a day in the life of the Chippewa Valley Aphasia Camp. What is camp life like for you, for your staff, or your campers, and for the students? Jerry: Marybeth, maybe I'll start with the students if that's okay. Marybeth: Yeah, that would be great. Jerry: Students really begin this process months in advance, and I think Marybeth was alluding to this earlier. So, each spring around late March, early April, we put out a call for student volunteers. And typically, we get about twice the number of applicants as we have spots. So, it's a pretty competitive kind of position. Most of our students are from communication sciences and disorders, but we always have a few spots saved for some other disciplines as well. We have a kinesiology program that has pre occupational therapy, pre physical therapy, so we typically have one or two students there. We get some students from social work. We haven't had students apply from nursing, but that's always an option as well. We've even had students apply from computer science and they're a really great asset, given all of the technology it takes to carry out some of the things that camp. In fact, one of them has been with us, I don't know 10 years plus at this point, and really a part of our staff at this point. When students make their applications, we read through their essays and we try to get a sense, as I said, of whether they'll be a good fit for camp and some are and some are just not quite the right fit for camp. Those accepted go through an online training module, and then we have three face to face trainings as well. In two of the trainings, they learn a little bit about a day in the life at camp actually. Then we train supported conversation techniques. Those meetings are each two hours long. Then we have a third meeting, another two-hour meeting, just about a week before camp, really focused on logistics, last minute planning and their roles. We talk a little bit about their talents and how they might bring those talents like singing, playing a guitar playing the drums, those sorts of things, at camp, to the campfire, and so forth. We're always looking for a few crafty people to help out with things that we do in terms of prep in the evenings and so forth. Some of them have projects straight up to the time of camp, to prepare things for different sessions, and so forth. Once they're at camp, they are working hard. From 6:30 or 7:00 o'clock in the morning, they're up helping prepare breakfast and then they have a full day of interacting with those campers as well. Their roles are really to help engage people in meaningful activity, and to kind of transparently, almost like they're not there, provide communication ramps and supports that allow people to communicate within those activities. It's really fun to see a well-trained and a terrific volunteer just kind of seamlessly providing those supports while the person is just engaged in archery, or making a craft, or whatever the activity happens to be. Because of that, both our students and our campers really say that it just feels really natural. Campers often say that they feel like they don't recognize that they have aphasia for a moment or two, which is obviously our big goal for the for the camp. We don't assign students to specific campers, but we do assign them to sessions, because we want to be able to balance the number of campers with those potential supports. So, students will, just like campers, go from session to session, and engage in the session. We don't want them just standing there but be prepared to kind of step in at any given moment, to provide those supports when they're necessary. We have an expression for campers that everything at camp is “Challenge by Choice”. We want people to push themselves, but not to the point where they're uncomfortable. And for the most part, that's true for students too. We tease them that a few students get assigned to the Polar Plunge on Sunday morning, and that's kind of challenge by, you know, force, but they're really good sports, and they're always good at jumping into that ice-cold water mid-September. So that's a pretty typical day for them. A couple of other things along with interacting with campers and their partners and all of the great conversations that happen within sessions or just sitting at the campfire, each do a rotation of kitchen duty, and they help out with all of the other logistic tasks behind the scene in terms of setting up for sessions and so forth. And again, they do it in a way that is really transparent, and you can't even really recognize sometimes that they're providing those supports. Every evening after we close down the campfire, and we have these great campfires singing and telling stories and interacting with each other. After that's all done, the students make sure that the campers are returned to their cabins. And then we keep them busy for a little bit longer. So, we have them do individual reflections and video reflections and then we get together in small groups or pods, where we kind of debrief the day, what went well, what could have gone better, what their goals are for that next day. And then at the end of the entire weekend, they stay around to clean up the camp, we do another final debriefing, and then they're still actually not off the hook yet. They help us haul materials back to the university and back to Mayo. And that ends up being late Sunday afternoon by the time that they're returned. We see this real transformation for some of those students and you know just what that experience brings them. And many of the students will volunteer year after year. We have some of those students who have kind of a veteran experience and can be mentors to the newer students as well. Janet: I think I'd like to be a volunteer at your camp. It sounds fun, even the Polar Plunge. Marybeth: Yes, I was just going to add that the camp staff then handles some of the logistics early in the morning before the campers rise. Some of that early activity participation includes unloading the canoes from the racks, getting life jackets out, organizing paddles, getting the adaptive gloves ready that need to be used for canoe paddling, or getting those special adaptive pieces that we use on the recumbent bikes so that individuals that have some physical limitations are also able to participate in in biking. We're making sure that we've got the archery equipment where it's supposed to be, that we have the adaptive pieces set up, that we've got the rods with the reels for fishing, and the necessary gloves that need to be used for fishing. We also have some of our students actually take those golf carts around in the morning prior to breakfast, making sure that if people need rides down to the dining hall, early to have that that cup of coffee, or to visit with people, or just to go for a little walk in the morning. We then have students ready to provide that service to our campers. One of the things that I wanted to mention in terms of training with our students is we continually tell them that the attitude of “Whatever it takes”, and “How can I help”, is what we're promoting at camp. It's just amazing to see from the start of camp, and watching the students in terms of providing that kindness, that genuine care to foster that sense of enjoyment and that relaxation, for those campers is seen early on, and then just flourishes even more, and it's something that's contagious. We see all of our students doing that throughout the entire weekend. We hear from our campers, we hear from those individuals that they've never experienced anything quite so kind and caring and where they felt like people were always willing to help them. We also then check in with our community volunteers are those experts coming up for the day to make sure that they've got everything they need, that their activity or their session is organized and ready to go. We have one individual staff person that is basically on standby and just oversees all of the different activities, checking to make sure that if there's something that is needed, from a technology standpoint, or some device that's needed by another camper, or an instructor that may need an additional massage chair, that all of those little things are taken care of by this individual who kind of oversees everything. Then as Jerry mentioned, we just go from activity to activity and check our schedules. We make sure that if campers are interested in switching an activity or they maybe see something else that looks a little bit more pleasing to them than their original activity, then we also help to make that happen so that campers are able to participate in activities that that they're driven to and that they're really motivated to attend. Janet: It sounds like you and your staff, your students and campers are busy from sunup to sundown, and even past in your campfires. I bet everyone goes to sleep exhausted at night but very happy with their days. I can just see it and sense it in your voices as you are describing the enthusiasm you have for camp. How do you secure funding to support your camp every year? Marybeth: That goes back again to Mayo, who is the primary funding source, but also to our partnership with the university. The university provides extensive funding in terms of the student's ability to participate at camp because to be perfectly honest, Mayo would not be able to fund the entire camp weekend for individuals without the support of the university providing that financial support for students, and also providing some of the financial support for a keynote speaker we may have, or one of the main events that we may want to provide. We've also been privileged, actually, to receive some donations by individual campers. Over the years, we've received financial donations, in addition to actually receiving a couple of recumbent bikes from campers that have wanted us to provide biking to individuals, and knew that we didn't have all those recumbent bikes that had the bells and whistles that were most appreciated by individuals with some physical limitations. We were so very, very pleased to receive a couple of these recumbent bikes. In addition, I have to say that the speech pathology staff and some of these other key members on our team have donated hours and hours of their time. That's not, you know, a financial piece, but that's definitely another piece of putting this entire camp together, the amount of talent and time, in addition to the money that's needed. Jerry: I can speak a little bit about some of the specifics at the university as well. So, as I mentioned, for the first few years, I wasn't employed at the university. So, my first year in employment at the university, I applied for what's called a UW Systems Differential Tuition Grant and I somehow was fully funded for five years. Then we had that renewable for a number of additional years. So, we had three years of renewal, and then our state went through some difficult financial times, so we lost that funding. Just as we lost that funding, we had a fairly new dean, who is fabulous, supports all of the work that we do, and she secured funding for long term. Our college actually funds all of the students attending camp, travel time, time for their training, the food for their training, the lodging at camp, the food at camp, and then, as Marybeth said, some additional funds for keynote speakers or other activities at camp. Also funding for staff, for Tom Sather and myself, for all of the development time for camp, and then for our time at Camp as well. We’ve been really fortunate to be in that position of being well funded between Mayo and the university. Janet: That’s good to know. Marybeth, I am reminded of what you said earlier, that you were all in this together, and it does sound like that through the years you’ve shown the positive effect you can have on the students and the campers, and that encourages people to give you additional funding. It is great that you have been able to do this and sustain the amount of funding. Jerry and Marybeth, I imagine that despite your best planning, there have been some hold-your-breath moments with campers in camp life. Will you tell our listeners about some of those moments and how you worked through the challenges they may have posed? Jerry: Do you want to start, Marybeth? Marybeth: I'm not sure if you and I have the same thoughts here, but when I thought back on some challenges that we've that we've gone through, two of the things that come to mind quickly is ,we had one camper that that fell in one of our wash houses when they were getting ready in the morning, washing up and using the bathroom. Now, it might not sound like a big thing, but when you are hosting individuals at camp that have had strokes, or individuals that have had strokes and seizures, in addition to maybe a few other medical comorbidities, you are always thinking that if someone may fall, or have a seizure, or have some type of an event when they're out on the lake in a boat, or on a pontoon or sailboat canoe, what have you that you're always concerned as to how you're going to handle that situation. And fortunately, we've had only two situations where, in one case, an individual fell while he was getting ready in the morning while he was in the wash house. Now these wash houses have cement floors, so the individual did fall. He did hit his head, not hard, according to his father, but you know, he did hit his head and that was serious. We contacted the nurse right away, she came, she oversaw the situation, and talked with his father. He was watched carefully and per his and his father's decision, he was feeling fine, he was doing all right, they wanted to stay for the day and just see how things went. That situation turned out fine. He was okay, and we followed up with him the next day after him and his father had left at the end of camp and he was totally fine. But those things can be really scary, especially when you're out in the wilderness, and then you have something happen. And, yes, you've got trained people there, but it's not a hospital and you're not in a hotel where you can access things really quickly, either. So that's just, one of the things that I can recall that was actually challenging. And Jerry, maybe you have other ideas. Jerry: I was thinking of a couple of stories, I think it might have been our second year at camp, we had a lady there who was actually maybe only six months out of her stroke, something like that. One morning, she just decided to go for a little walk on her own and I remember kind of panicking looking around for her. She was just down the road, you know, a few 100 yards or something like that, didn't think anything of it, but got our blood pressure up a little bit. Probably the next best story is one, I think Marybeth and Tom Sather and I were involved in. We had this really cool ceremony one year where we had floating lanterns with candles in them, and we sent away our troubles and our goals for the next year, those kinds of things. If you've seen the floating candles, it's kind of like that, but you send them out on the lake. So, these candles went out into the lake and it was just beautiful, and we have just the most beautiful pictures of all of these candles floating off into the distance. Then all of the campers left, and it was great. About that time the wind picked up and blew all the candles directly to the shore, along the pine needles and so forth. Tom Sather and I scurried to the boat, and we had our net, and we're scooping up all of the candles and trying to put them all out before they hit the shoreline and started camp on fire, which fortunately we averted. But that was definitely a moment that it went from the most tranquil, beautiful setting to oh my gosh, we're going to burn down the camp. But we did not. Janet: No contingency plan for that one, just get in the boat and go quickly! I'm sure that there are many more heartwarming stories that you have from Aphasia Camp than hold-your-breath moments. Tell us about some of those heartwarming stories. Marybeth: Sure, I can start. There's one particular lady who has come to our camp. I think she's come to our camp for 12 years now with her husband. She’s a musician who played in a group when she was a young woman, sort of did that on the side sang, played the guitar, and I'm not sure if she did keyboard too. She had a stroke and had a non-fluent type of aphasia. She communicated with few words, but her facial expression and her gestures said it all. We typically invite different types of artists to camp every year, because we really want to provide that type of activity to our individuals. And we know based upon that feedback that we get from the individuals that attend camp, that many of them do appreciate art in the various arts. So, this one particular year, we invited an artist, a very well-known artist, who came and did some pictures of natural still life and a few other things, but primarily this still life was something in his repertoire. This lady attended the class and she was so engaged. and I think many of our listeners would actually say that she looked as if she was in flow, when she was participating in art. To watch people come around behind her or to come up and look at her painting when she was finished, was breathtaking. Because here's this woman who had very, very few words, who had some physical limitations, who was using her non dominant hand, and painted this beautiful, beautiful picture. For her husband to see her painting and to see her participate was simply amazing. He was so taken with her artistic talent. That weekend after they left our camp, I received a call from him, I think it was the Monday following camp. He told he told me that he was so happy to see her participating and painting and enjoying it so much that on their way home from camp, they stopped at an art supply store and he bought her an easel. He bought her all these paints, brushes, different types of paper and boards that she could work from. I don't think I'll ever, ever forget that image of seeing her paint. And then also to hear his comments about how appreciative he was that we could help to reveal those skills. Janet: Moments like that make it all worth it, don't they? And Jerry, I'm sure you have a heartwarming story as well. Jerry: I was thinking as Marybeth was talking, I have hundreds of snapshots in my mind. And what Marybeth said about revealing competence and revealing what that person can still do through those activities at camp, a lot of times it's very much like that, where they didn't realize what capabilities they had until they did it again. I'm just going to walk you through a few of them. I happen to run the woodworking class at camp because that's one of my skills. I've seen people who are carpenters and woodworkers doing this for the first time since their stroke years later. I know Tom Sather is one of our resident golfers and we've seen golfers swing their club for the first time since their stroke. Often one of the things that they'll say is something like, “Why haven't I been doing this for the last five years?”, “I didn't do it again until I was at camp.” A couple of years ago I had a young woman with aphasia, catch a 44-inch muskie on a Sunday morning, just before our closing sessions We did a little scrambling but were able to kind of incorporate that in the slideshow, and just the joy and the pride on her face when that came up on the screen, and everyone just kind of said, “What?” She had this massive fish and was holding it in her arms. We've done that by having campers lead sessions. We have a guy who leads crossbow sessions, and another one who leads cooking classes, and another lady who leads crafting and beading sessions and shows her adaptive equipment that she uses. We have another that makes candles and makes cards. We even had a partner who is a printer, and she printed all of our t-shirts, but kind of personalized t-shirts for all of the campers right at camp. That was pretty cool. So those are the kinds of things that really, really stick out to me. And then I have got to say, our students, just so many fabulous students who have this, the only thing I can say is just this remarkable transformation of understanding what it's like to live with aphasia. And what it takes to support that individual and whether they go on to serve people with aphasia, or children, or whatever it is, they've got that glimmer in their eye that says they care about that human being. And that's really powerful. Janet: I can imagine. Two words struck me in listening to the two of you talk about these heartwarming stories. One phrase is revealing competencies; that you are uncovering what has been there all along and are helping people understand how to do what they want to do in a different way or a new way. The second word that you said is transform. Students are being transformed; campers are being transformed; even you as the staff are being transformed in your way of thinking. It is your camp activities that are doing that. I think it is a wonderful thing you are doing, and I can certainly see that excitement and the transformation in you as you help the campers reveal their competencies. For our listeners who are thinking about starting an aphasia camp, well, that is whenever we can, again gather in person, what advice or suggestions or lessons learned, can you share with them? Marybeth: I think one of the very important things that people will want to consider is to take time to select the key stakeholders that share that similar philosophy. I think identifying those partnerships is critical and crucial to the success of whatever type of retreat or event that you want to provide. Secondly, I think you want to be focused on providing that atmosphere of delight. And always thinking about that, “whatever it takes” approach when developing your schedule of activities or your schedule for the weekend. And thirdly, I also totally believe that it's important to listen and involve the individuals with aphasia, and their significant others in the development and the planning of everything. I think they need to be involved from the get-go. They need to be involved in those early stages, so that we understand, we learn from them, in terms of what's going to help the most, what they're looking for their goals, their ideas, things that they want to be challenged with, what have you. I believe those are the most important things.  Jerry: Agreed. I would say just surround yourself, and Marybeth talked about this too, surround yourself with good colleagues and friends, people that you're going to want to be around for 16 hours a day, 17 18 hours a day while you're at camp, plus all the prep time. We stay up all night long practically. To have good people around you is important. Find a good network of community volunteers. We talk about this ripple effect that it creates; you know, they talk to their friends and we get people involved. We have community volunteers who plan their vacation time around aphasia camp so they can come. Last year during the pandemic I had people call me and say, “I'm so sad that we're not having camp, let me know about 2021, I want to be there.” Those people just come back year after year. Recruitment and training of students is important. We specifically seek out students for whom this is going to be a turning point kind of experience. Some of them are ones that may not be as strong academically, but really may excel clinically, or in their interactions. We think for them, it's an opportunity; we still get our pick of a lot of really terrific, strong students, but we always seek out a few students for whom this is just going to change them. Then I would just say, connect with other camps and talk to other people at other camps. Janet: Thank you both or those wonderful insights. Jerry, you mentioned a ripple effect, in so many ways. You said earlier in our interview today about the changes that happened at the YMCA camp as a result of beginning to host people with aphasia. That is a ripple effect too, of the changes that went out into the community that you have supported, the physical changes that happened to the camp, the changes in thinking people have made by welcoming people who have physical disabilities and communication disabilities. Good job for all of you, for the work you have done and the connections you have made, and the lessons you have shared with all of us.  As we close this conversation, I would like to compliment you on an amazing and vibrant program, and to ask each you to recount one of your favorite camp stories from among the many, many that you may have. How about you going first Marybeth? Marybeth: Okay, two things, and I'll do this really quickly. I think the expressions on the faces of our camp planning team, when I bring up some of the crazy ideas and crazy experiences that I've gone through in my early days as being a camp counselor or camp program director is exciting for me to see. That whole idea of the of the Polar Plunge, or taking individuals out sailing and actually having people with aphasia being the person that's leading the sailing or in charge of sailing the boats, taking people on long hikes into the woods where it's maybe a half mile and the terrain isn't great. Seeing the expression and then also seeing that next expression, which is “Yeah, right, why can't we do that? Of course, we can do that. We can do anything.” I think that's one of the really cool things when I think about camp. The other vision or image that comes to my mind is one where we help people to be able to ride bicycle by riding these recumbent bikes. For some people who've never been on a recumbent bike or have never been on a bike since their stroke, to watch them going down the road whizzing by, pedaling because it works with the type of adaptive equipment we have, is totally amazing. Totally amazing. Jerry: Yeah, I've got two big things that come to mind. One is just probably my favorite thing at camp, and this is saying a lot given how much I love the interactions with campers, but this is with my friends and colleagues when we're up at 3:30 or 4:00 o'clock in the morning eating Circus Peanuts and drinking coffee and waiting for the hour and a half of sleep that we're going to get before the next day. We goof around, we have fun, and have a lot to do, but that will always be one of my favorites. I think one of the other things is the closing ceremonies that we have where we give camper commissions. Essentially, that's their charge for the next year; “Right. So, here's what we saw you doing at camp. This is the change that we've seen in you and the activities that you undertook and the accomplishments that you made. And this is your charge for next year, what we hope to see from you.” I think that's really powerful. I just want to mention one other thing for the listeners. We have a number of publications, including one that came out this past week, and we'll make those available if people are interested as well. Janet: Thank you both, Marybeth and Jerry, for your inspiring stories, and the practical guidance from your experience at the Chippewa Valley Aphasia Camp. I have said this a couple of times today – I want to be a volunteer there, it sounds like so much fun, even if I would be up until 4:00 in the morning eating Circus Peanuts and Coffee??? Probably not the best diet, but it works at camp, I guess. Jerry: Sure does! Janet: I appreciate both of you taking the time to talk with me today. This is Janet Patterson, speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guests, Marybeth Clark and Jerry Hoepner for sharing their knowledge, wisdom, experience and stories as leaders, campers and chief s’more makers at the Chippewa Valley Aphasia Camp. You can find references, links, and the Show Notes from today's podcast interview with Marybeth Clark and Jerry Hoepner at Aphasia Access under the resource tab on the homepage. References and Resources for the Chippewa Valley Aphasia Camp https://www.uwec.edu/academics/college-education-human-sciences/departments-programs/communication-sciences-disorders/about/community-resources/aphasia-camp/ https://www.uwec.edu/news/academics/hands-on-learning-provides-support-to-aphasia-community-686/ https://www.mayoclinichealthsystem.org/locations/eau-claire/services-and-treatments/neurology/aphasia-camp  

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Aphasia Access Conversations brings you the latest aphasia resources, tips and a-ha moments from Life Participation professionals who deliver way more than stroke and aphasia facts. Topics include: aphasia group treatment ideas, communication access strategies, plus ways for growing awareness and funds for your group aphasia therapy program. ​This podcast is produced by Aphasia Access.