Show Notes - Episode 49

Primary Progressive Aphasia:

A Collaborative Approach to Remaining Engaged in Life

A Conversation with Wayne Zorn, CeCelia Zorn, and Tania Riske

Welcome to the Aphasia Access Conversations Podcast. I am Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. I am privileged to introduce today’s guests: Mr. Wayne Zorn, his partner CeCelia Zorn, and their speech language pathologist, Tania Riske. Some of you may recognize these names from presentations at the 2019 Aphasia Access Leadership Summit or their article “Three Voices at the Table.” They are currently working on writing up a follow up article regarding living with Primary Progressive Aphasia.

GUEST BIO:

Wayne Zorn is a man of many dimensions. As others discover who he is, they find a person with a giving heart, a curious, precise, and engineering mind, and a fun-loving soul. He is a great man with a beautiful smile. Others say whether he wins or loses he is someone who always is ready for a Jameson on ice or a Bloody Mary. Kids, teenagers, or adults are drawn to him. Whether it is a game of Uno or Cribbage, learning about monarch butterflies, watching the Packers or the 400-member University of Wisconsin Eau Claire marching band, fixing a broken makeup mirror, baking a Danish pastry, painting the garage door, weeding the flower beds, biking with the family, singing solo in the memory choir or playing and improving his golf score Wayne is there and he loves every minute. CeCelia and Wayne met in high school in rural northeastern Wisconsin. Married for 45 years, CeCelia brings a threefold background to our discussion about PPA. She is a registered nurse and a lifelong writer. She has been an award-winning university professor for 32 years. Cecelia shares many of Wayne’s interests such

as travel, biking, tent camping and the arts, but not the golf, fishing or assembling jigsaw puzzles. CeCelia reads voraciously and is relearning how to play the flute – taking individual lessons, playing in community bands, and auditing university music history class. She volunteers at the local free clinic and is an active member of the Board of Directors for Wayne’s memory choir. Daily, CeCelia strives for a life enriched by kindness, joy, perseverance, curiosity, patience, and collaboration. But she will be the first to tell you, “some days are easy but some days you just crash. Yet everyday it counts because I remind myself, life is not waiting for the storm to pass it is about learning to dance in the rain.” Our third member of the trio, Tania Riske, is a speech-language pathologist at Mayo Health Systems – Eau Claire. She initially entered speech language pathology field through her volunteer work with the Chippewa Valley Aphasia Group and graduated from the University of Wisconsin – Eau Claire Communication Sciences and Disorders program. Tania continues to enjoy treating patients with aphasia and their families within the LPAA Paradigm. Developing plans of care, counseling individuals’ unique lifestyles, goals, interests, and priorities. Tania is an avid trail runner and rides horses with her teenaged children, in eventing competitions. We are so fortunate today to have a conversation with Wayne and CeCelia and Tania Riske as they share their ongoing collaborations to foster communication and participation in the face of Primary Progressive Aphasia. We know that our listeners, whether individuals with aphasia, partners, clinicians, or researchers will value this trio’s outstanding insights into living successfully with PPA.

In today’s episode you will:

• Learn about living successfully with primary progressive aphasia (PPA) from an individual with PPA (shared through tools like the whiteboard on his iPad, photos, gestures, eye gaze, and tone of voice – not always evident in this podcast), his partner, and their speech-language pathologist.

• Learn about examples of participating in personally relevant activities like singing, travel, and golfing – along with what it takes for this to happen through collaborations between an individual with PPA, his partner, and a speech-language pathologist.

• Learn about following the lead of the individual with PPA and his partner as a context and vehicle for authentic, person-focused interventions (and letting go of one’s own plan).

• Learn how this trio implemented collaborative interventions and authentic steps they took in that process (right down to the notes and picture prompts in his music sheets).

• Learn about how to engage community partners in meaningful, participation-based collaborations.

• Learn about the challenges this couple has encountered (with family, friends, and community) and the positive way they have addressed those challenges.

Edited show transcript follows:

Jerry: Thank you for joining me for a conversation tonight, we are really looking forward to this conversation. I think it will have a lot to offer for people who are listeners of Aphasia Access, so excited to join in your conversation. CeCelia: Our pleasure. Jerry: Alright. Well maybe we can start with a little bit of conversation, the four of us, just kind of catching up on what you have been doing lately and then kind of working our way into a conversation about life with Primary Progressive Aphasia. Sound okay? Tania: CeCelia you were saying that earlier today you and Wayne were meeting with Nancy, the pianist and accompanist for the music that Wayne has been singing. So, you have got it out in front of you. How has that been going? Because I have not heard Wayne sing for probably a month now. CeCelia: Well what has happened, Wayne has developed solos for three songs. The first one was familiar to him. He sang it in weddings, and maybe a funeral along the line. So that was familiar, Bette Midler's "The Rose". And then the second one was a new learning, "today, while the blossoms still cling to the vine", I do not know who made that popular, so that was new learning and then the third one was actually most difficult, Wayne had not had experience singing it,

"My Heart Will Go On" from The Titanic. It was harder and it was longer, and it had a key change in it, so lots of things about it made it more difficult. We are kind of going back, rehearsing all three, so they can be videotaped in a couple of weeks. That is what we are working on with Nancy. Nancy and I noticed that the first piece, and we are looking at it now, Tania helped us put visuals in it, increased the spacing, the font size, used highlighters and some of that. And then when we got to the second one, Nancy and I just noticed it today, for some reason we did not have any visuals in it. Tania: Really? That surprises me because we spent a lot of time on that... Cecelia: Right. Tania: But no visuals. Cecelia: I think this little sketch you did once upon a time thinking, well, maybe there would be a little visual and noticing that it was going from the refrain to verse one or some such thing and there were some pitch changes in it that we tried to highlight, but actually that one, currently, is going the easiest for you. And then the third one was, is I should say, “My Heart Will Go On”. And we used lots of visuals and used some dots to indicate beats and measures and lowering of pitch. And this all evolved over probably a couple of months.

Tania: Easily a couple of months. We spent a lot of time just refining our supports, trying different things, what worked, what did not work.

CeCelia: Right.

Jerry: Can you talk a little bit about that process? What that looks like, from where you started?

Tania: I think when we first started, we had just a printed sheet of lyrics.

CeCelia: About font size 12 with all the song being on one page. That was me just being totally uninformed about things.

Tania: But that was the first new experience that we had with working with singing during Wayne’s PPA.

CeCelia: Right.

Tania: So, I think the first thing we did was really lightened up how much text was on each page. So maybe it was, we changed it to, I do not know, what font size do you think that was?

CeCelia: I do not know, maybe initially from 12 to probably maybe 18, in bold, and just…

Tania: And spaces between lines.

CeCelia: Yes. Yes. So, the division would be logical, where the phrase of the song ends, then the line ends, and going on.

Tania: And then I think once we had a little less density of words on the page, then we started to think about putting some of those pictures and that would provide some visual cues. I think you and Wayne collaboratively chose those pictures.

CeCelia: I think so, it was sort of a Google check and I remember the last one, this one actually “My Heart Will Go On” and I was saying to you at one meeting, Tania, something about I ca not find any pictures that reflect “you are here and there is nothing I fear and I know that my heart will go on” and she said, “Oh, just put some pictures from your photo collection on it, it does not matter.” Really, what the picture was you suggested…

Tania: Right. I think it is easy to get hung up in that idea of having to find a picture that perfectly, but perhaps generically, provides a visual for the word or, the line. But all that we really needed was a visual cue for Wayne, just something that gave the prompt that it was either a change, in the verse or whatever we needed to communicate…

CeCelia: Right.

Tania: …some picture that gave the visual cue for that.

CeCelia: Yeah. The picture that we are looking at now on the page is in the last bit of the song, there is a sustained “Oh” that changes pitch. It starts more of a baseline, goes up for three beats and then comes down, and Nancy was really

trying to help Wayne shape his mouth to enunciate the “Oh” sounds as clearly as he could. And just saying that to Wayne was not necessarily very meaningful, but the little picture of the little guy and his face and sort of the “Oh,” it was…

Jerry: Very iconic.

CeCelia: I think a little bit more helpful than just saying, “Wayne, you need to shape your mouth into an ’O’ to maintain this” and then rest and do it again and so on. And the last “Oh,” Wayne had difficulty with, I think it was just sort of fading away and what we decided was to break it and then Nancy would join Wayne in the very last, probably about four measures here, that ends the song. It was just a nice, strong collaboration…

Jerry: Oh nice.

CeCelia: …rather than Wayne just sort of having difficulty and sort of fading away after doing fifteen measures of these “Ohs” sort of a thing.

Jerry: Yeah.

CeCelia: So, it just brought it to a nice, a stronger finish.

Tania: And I think one other piece that is important to bring up in terms of the cueing and the music, we have a lot of visual cues, but also, CeCelia, you have been a really strong support with some auditory cues. Because we figured out that sometimes the visual cues just were not quite enough to support Wayne. So, CeCelia, you got good at predicting those times when Wayne might struggle more and just giving that little bit of an auditory cue. And you hit just that right balance, you did not take over, but just gave that little bit of support so that Wayne knew where he needed to go. So, between the visual supports that we figure out, and the auditory support, and lots and lots of rehearsal.

CeCelia: Right. Right. What Nancy and I discovered today, and we still do not have it figured out, Wayne is struggling with the word that begins with L. So it is “some say love, it is a razor,” the razor sometimes gets confused with river, but beyond that, the line “that leaves your heart to bleed,” that L sound is really hard for me to cue Wayne, because it is not like train, or son, it is “leaves” and that sound is not as easy, I do not think.

Jerry: Yeah.

CeCelia: And you are the experts, for Wayne to hear…

Tania: Sure.

CeCelia: I tried to kind of lean in a little closer, come in on a little earlier because the “that” is like a 16th note, it is like “that leaves”. It is just there is not much time there to cue Wayne that this is “leaves”. And it is just a hard sound.

Tania: That is interesting, I would not have thought of that.

CeCelia: Yeah, so just little things along the way.

Jerry: So those notes, CeCelia, are they as much for you as for Wayne or…

CeCelia: I think it is for both of us.

Jerry: That is what I was thinking, yeah?

CeCelia: Yeah. Yeah. Because the little bumps are predictable, although sometimes there is a new one, so they really are helpful, I think, to both of us. And I think Wayne essentially knows the words, it would be interesting to not even have the book in front of us. I do not know; we have not tried that.

Jerry: So, this will lead to a performance and a recording, and hopefully we will get a little taste of that recording as part of this podcast.

CeCelia: Hopefully, yeah, I think that is happening in a couple of weeks. And Wayne has sung in front of, or as a prelude to, a concert and in a church, service focused on disability, and a couple of little public places. So just as kind of a stand-up singer, and that has been easy just because I do not think the anxiety is very much of a barrier.

Jerry: Yeah.

CeCelia: It would be for me, but for Wayne it is not, and he just takes off.

Jerry: Then that performance at the healing arts show last spring was amazing, just to see your comfort level in that setting and how beautiful that song was.

CeCelia: Thank you.

Jerry: Absolutely.

CeCelia: Thank you.

Jerry: I am excited to hear the next round.

CeCelia: Yeah. (indistinct) You are singing.

Jerry: Because you have a powerful voice carried through that whole hall, with all the, I mean, hundred or more than a hundred people there.

CeCelia: Yeah, close.

Jerry: Yeah, so…

CeCelia: And the pianist Nancy is such a collaborator in terms of her teaching skill, and she does well with repetition. So, she will not start with a, like this chunky line, that is a little bit of a bump. She will start from the beginning, always, rather than trying to pick out a piece. It seems to have to flow in a bigger chunk and not just pick out a line or a word that is a stumbler.

Jerry: Right. And how did that relationship develop or how did this all come to fruition? In terms of this idea.

CeCelia: Actually, we were encouraged and invited to join the stand in the light memory choir that is here in the community. Another couple that we know, the husband in the partnership has Primary Progressive Aphasia, and they were enjoying the choir and they said, “Oh you would like that” and I said, “Well, I cannot sing a note, but Wayne can.” So, based on their encouragement and invitation, we attended a concert. We had a great time listening, and then it started there.

Jerry: Wow.

CeCelia: And Nancy is the pianist for the concert.

Jerry: Okay. Okay, nice.

CeCelia: But there was a time that Wayne really was not singing or humming or whistling like he did most of his life, so that was gone. And Wayne still does not hum or sing in the shower or whatever but moves to music when he hears it publicly. I do not remember chronologically how this happened, but we were at a Packer game at Lambeau and the “Star Spangled Banner,” started. Of course, there was a soloist and the words came up on the jumbotron…

Jerry: Sure.

CeCelia: Everybody stood up. Everybody was singing, and Wayne just launched into the “Star Spangled Banner”.

Jerry: Oh, wow.

CeCelia: And I thought, of course, this is a big piece that is missing.

Jerry: Yeah.

Tania: And I think at one point we even lamented, a little bit, that loss of singing for Wayne, knowing that this was a big part of your life, Wayne, and something you really enjoy doing and we knew that that piece had dropped off. And until, I think until you spent the time with the memory choir, it was not really something that we explored, but once that started…

CeCelia: Right.

Tania: It just took off for us and really became an important part of our time together.

Cecelia: Yeah, yeah. And it was just a perfect fit with Nancy and Tania, and Wayne. Just the stars were aligned.

Jerry: So, it started with that choir, but then it became kind of a part of your everyday therapy, and…

Tania: One of our big goals in therapy was really to support what was going on in choir because choir was becoming this increasingly big part of Wayne’s social being. You are spending more time in rehearsals., I do not even remember how the song was identified for the initial solo, but once those things started, we really

wanted to support Wayne having success with that and really being able to be a part of the choir and really being able to latch on to singing as something that is important and valued and just part of his identity.

CeCelia: And another layer and another opportunity, was some friends that we hang around with, she hosts a home recital once or twice a year with a variety of novice and quite expert musicians, and she invited Wayne to sing. So that was like “Oh okay then,” you know, “this is going to work.” So that came together as well as a home recital for probably 10 or 15 people and…

Jerry: Wow.

CeCelia: Tania had the luxury of attending it a couple of times, and so it is an informal gathering but provides sort of a social, public experience.

Tania: And thinking that that first recital was the first time that Wayne sang “The Rose” for an audience.

CeCelia: I think so, right, except years ago for…

Tania: Right.

CeCelia: …weddings and so on and so on. But yes, now more recently, yeah that was sort of his jump into the water.

Jerry: What I think it so great about that is it really follows that life participation model, right, finding out what matters to the person and following that lead, rather than trying to impose some plan that you developed out of what was a struggle, or what he did not test well on, or something like that.

CeCelia: Right, right.

Tania: And there has been a lot of fodder for therapy sessions, with singing. We were talking before about just how we developed and evolved our support materials, but also just the rehearsals, identifying those areas that are difficult and giving the opportunity for validating that what you are doing, Wayne, is meaningful and just a real part of who you are and what is important to you.

CeCelia: We would often just walk into Tania’s office and Wayne opened his folder with his song.

Jerry: That is great.

CeCelia: …and off we went. I have a recording on my phone from Nancy and just turn that on.

Jerry: Wow.

CeCelia: So, it was really a source of pride and contribution.

Jerry: I think that leads into part of the conversation we want to have tonight so well. We want to highlight the importance of collaboration, and you have already mentioned four or five different collaborators, Tania and Nancy and the other people dealing with Primary Progressive Aphasia and the choir. I think that is a good opening for that conversation.

Tania: Even just the collaborating that we do, which is just a small piece

Jerry: Yeah.

Tania: …of all these different relationships you have, it is certainly not anything that any one of us could do alone. This is such a process of identifying what is going on in your lives. So, what is going well? What are your plans? What are the things that you are doing that we want to make sure that we are prepared for?

Jerry: Yeah.

Tania: And, in some cases, what is not going well, or changing, and things that we need to seek solutions for.

CeCelia: Right. And in the collaboration piece, it is sort of a ripple effect; the person that I mentioned about hosting the home recital, she knows nothing about Primary Progressive Aphasia. She wanted to read the article that Wayne and Tania and I wrote, and she wanted to share it with other guests that are coming to the recital so they would be prepared in meeting Wayne. Some key people that were coming, so it is really a ripple of people in the community learning and supporting based on what the aphasia community offers, that I

would not know to share with other people who can then share with other people and so on and so on.

Jerry: Absolutely.

CeCelia: Yeah, it is key. I mean there is more people that know about PPA in this community than say 5 or 10 years ago.

Jerry: Absolutely.

CeCelia: And it is just because of that ripple effect that I think that that happens. And people generally are interested. We were in flight one time a couple years ago, and Wayne has an aphasia card that briefly describes his skills and what works and so on in communicating. And we were in flight and the choice was ‘what kind of snack do you want,’ of course, and so I wrote them quickly on Wayne’s whiteboard and he circled the one he was hoping for, the flight attendant asked about, “So what is this?” and Wayne wrote, at that time he could write the word aphasia on his whiteboard. She, after she delivered all the peanuts and pretzels and so on, came back and really had a conversation with what is going on. It is just little bits and pieces that happen in interesting and incredibly supportive ways. And people are curious and want to be helpful.

Jerry: That is amazing to hear about that ripple. I just think that leads into our, our conversation so well. I am also really glad that you brought up the “Three Voices at the Table” article, which I encourage all of our listeners to read, if it’s okay with you we will include that in our materials…

CeCelia: Of course, yes.

Jerry: …and resources. Maybe we could take just a little bit of time to talk about those different people around the table, and Tania you mentioned that is something that is constantly changing. And when you mentioned the flight attendant, right? Another person at the table. But kind of what that looks like, how that changes over time or by the situation.

Tania: I think when we were writing the paper, we were thinking about, specifically, our three voices. But there is so much of a ripple effect. So now, at the time, we think if we just look at those three voices in a very literal way, there is me as the therapist, CeCelia as the care partner, and Wayne as a person with

PPA. And when we are together, the three of us are interacting. Sometimes it might be more verbal, other times we are using the whiteboard that is on the iPad. Wayne is like this amazing artist and, he is brave in terms of taking a stab at drawing something.

Jerry: Right.

Tania: And that has always been a really, a strength that we have had on our side since this all started, but it is also been a skill that then the two of you have taken out into the community. So when you are out to dinner at a restaurant, when you are meeting with friends, when you are doing all those things out in the community, you are taking that piece that the three of us collaborated on within the therapy session. But then you are taking that out and you are using it in the community to support Wayne’s independence. And just like the flight that you described, people notice that and are interested. You mentioned Wayne’s aphasia card that I have seen him pull out so, so many times and people read it and “oh okay” and it impacts them and what they know and how they interact. So much of what we might talk about and collaborate about, you take that next step of taking out into the community.

Jerry: And can I catch you just for a second… before we move on, I just want to highlight or let our listeners know Wayne has got his iPad and whiteboard here. And we have got paper and a sharpie. And while you may not hear Wayne’s voice all the time, he is a part of this conversation and one of those voices. So, I just want to let the listeners know what you cannot see, behind the scenes. Sorry, CeCelia, what were you about to say?

CeCelia: Oh, that is okay. Tania was talking about the sharing beyond Tania’s office together. An example of that, and Jerry, you would probably relate very closely to this, Wayne and I and a couple of friends were at a local fish farm where you can fish and then they fry your fish and you can, and if you don’t catch any, they offer some from their hatchery, etc., etc. So, it is kind of a unique little place outside of town, and I do not know a thing about fishing, but one of the friends that was with us is very much a fisher person. So, the discussion was “what kind of bait do we buy for the fish?” And I think the choices were, correct me if I am wrong Jerry, but I think there was corn and some little wormy thing and some other little thing. Marge, our friend seemed to not know either or wanted to have some discussion with Wayne about what kind of bait we should

get to catch these fish in this pond. So, what she did, and it just melted my heart, she took Wayne’s iPad, went to the whiteboard, and wrote the three choices in her own writing because she has seen us do that….

Jerry: Wow.

CeCelia: …so many times. And that was the first time she ever did it and Wayne circled whatever squirmy wormy thing that he thought would catch us the most fish. But it was such a moment of thank you for doing this…

Jerry: Yeah.

CeCelia: As I said, she had seen us do it many times in a restaurant, or when we are out at her house, or whatever about the choices on the whiteboard.

Jerry: Right.

CeCelia: And she just went, in her bold hand, and wrote them, and Wayne circled and that is what we got. Was not successful but not because…

Jerry: From a fishing sense, right?

CeCelia: Right, right. But it was so empowering…

Jerry: Yeah.

CeCelia: To see her do that, sort of just naturally, without almost, I do not even think she asked…

Jerry: Right.

CeCelia: …I was just so grateful that it just stopped my heart and my breath when she did that. So, it is that sort of ‘out in the community’ that people take on because they know how to do it.

Jerry: Well that really speaks to the kind of models that you are giving them in the interactions that you are having in those contexts.

CeCelia: Right.

Jerry: For sure.

CeCelia: Yeah.

Tania: And the most empowering piece of it is that, it still becomes Wayne’s decision. It is his expression of what he wants, rather than you just making the decision or making that presumption. So that is one of the things that is very cool, is that we are preserving his independence, the expression of what you like, what you do not like, what you want to do, what you do not want to do, and that is, that is the (indistinct).

CeCelia: And sometimes that is a little bit of a challenge because sometimes people will try to be helpful and to do something for Wayne.

Jerry: Oh sure.

CeCelia: Like to order a drink at a bar. So, and so will go with Wayne to the bar and order a Guinness because he knows Wayne likes a Guinness, and Wayne just sort of tags along. Or when they plan a cribbage date, the friend will take Wayne’s calendar on his iPad and just enter the date and time. Whereas, if he wrote it on the paper, Wayne could enter the date and the time and the activity. So…

Jerry: Right.

CeCelia: …to be helpful, sometimes people just…

Jerry: Yeah, just take it away.

CeCelia: ….do for, and then well should I just kind of let it happen? Or there was a time we were at a family member’s house and someone who lives there got up, and Wayne was ready for breakfast, and got up and was going to make Wayne some toast. I said, “Wayne can make toast, makes toast at home all the time.” So, I felt comfortable saying do not worry about it Paul, and he says, “Okay, of course, I know, I know.” So, it was just his effort at being helpful and being a host and so on. So sometimes it is a little balance with….

Jerry: Sure.

CeCelia: …just inviting people to support Wayne’s independence.

Jerry: Right and finding that balance or that right fit.

CeCelia: Yeah, without being a nag or without being, you know, shut somebody down or you know, it is just, it is a balance. Yeah.

Jerry: Yeah, that would be tricky.

CeCelia: Yeah.

Jerry: So, you talked about family members, friends and even service workers that kind of incidentally meet you. I am just wondering about doctors and physical therapists and occupational therapists, is there a role that they play at the table? And what does that look like?

CeCelia: Wayne was diagnosed about, almost six years ago, and was diagnosed very quickly by the local neurology service. And I am incredibly grateful for that speedy diagnosis, it was done here in town, just a follow up at a central site for our healthcare system. And then, I think maybe it was the second meeting when the final diagnosis was made, the information that was given to us by neurology, the neurologist was sort of, eat a healthy diet, maintain your exercise, and I thought, ‘yeah, we kind of do that,’ that is kind of what we try and do in life.

Jerry: Right.

CeCelia: It just was not very meaningful. And then the information that he gave us was an academic article that was very detailed about the types of PPA and I do not know if there were MRI readings in it, or something that was very academic and very geared toward a neurologist reader…

Jerry: Yeah.

CeCelia: So that was not helpful at all. I did not even understand the words with these types and my background is in healthcare, and I thought if I do not understand this…

Jerry: Right.

CeCelia: I was embarrassed because I did not understand it.

Jerry: Sure.

CeCelia: And it was not helpful. And then as we moved into Speech Language Pathology, a lot of information was shared that was much more meaningful. So, the call to SLPs is to provide information.

Jerry: Right.

CeCelia: You know? Just we need you to look at us, do not look away, sort of a notion.

Jerry: And you mentioned at one point in a previous conversation, that just knowing the difference between primary progressive aphasia and a stroke-based aphasia is helpful as a starting point.

CeCelia: Right, extremely helpful. It helped me to understand, but it also helped describe it to other family and friends, some of whom have people in their family circles that have had strokes, who have speech problems. So, they quickly latched on to ‘okay, this is not like a stroke, this is different’ you know? So, it was helpful because I heard it from Speech Language Pathologists, both individually but also in the aphasia groups here, on campus. I think everyone in those aphasia groups understands the difference now because that constantly comes up and I’ve heard them say that to other people that are new to the group, “No, Wayne has primary progressive aphasia” You know, they are real advocates for this. And it is because of that constant repetition…

Jerry: Wow.

CeCelia: Yeah, so it is cool.

Jerry: Yeah, that is cool. If we are talking about where things started with that diagnosis, and the education or whatever we call it, that followed that. Do you mind talking just a little bit about that evolution of the primary progressive aphasia, where that started and how you learned through that process?

CeCelia: I am not sure exactly how to respond.

Jerry: That is a big question.

CeCelia: I, yeah, I think it was in small steps. And that is kind of an abstract sort of term. I think it was also around role changes and what Wayne was still able to do and no longer was able to do, and those things changed over time. Maybe just a note to others would be to ask directly about that -

in terms of what is changing and what do you need help with? Like, I needed help with technology because Wayne was very tech savvy. So, the printer would get stuck or this would happen, and I did not have a clue about it and Wayne was able to problem solve lots of things around that. Or the television remote control or, you know, just some of those basic household technology things. I needed help with that. And I remember saying to a couple of people, you know, we have a speech therapist and a physical therapist, an occupational therapist, we need a tech therapist that can serve people who need tech help -

and I am fortunate because of the help desk on campus -

that I use a lot; they know my username. So that, I am so fortunate to have that and a lot of it is by phone so they can help. So I think the evolution of role change maybe was, was big and it was recognized, but maybe taking the next step in ‘what kind of help do you need?’ and ‘what is available in the community that can be helpful’. I mean, right now I wish somebody would buy a new car and put it in my garage because we need a new car, and I hate car shopping. And I mean, that is just a personal thing–

when it does show up in the garage.

Jerry: Yeah. What strikes me about that is those are your needs as a couple, right? The things that you need are unique to you, and the only way you get there is by asking questions, right?

CeCelia: Right, right.

Jerry: And you started making a few good questions in terms of what a speech-language pathologist can ask you, to help you through this process in terms of what your needs are.

CeCelia: Yeah.

Tania: And it is easy as a therapist to sometimes, frankly, forget that when you leave my office and go home, that there are all kinds of needs that I do not see. It is easy to sometimes forget to check in and say, “Okay, what has changed since I saw you last?” but it is, it is a very important question to ask, what has changed since I saw you? Or what are you planning? What is coming up that we need to do some talking about, because life does not stay just the same for anyone and your life is changing all the time. So, I think there is a real call for speech-language pathologists to remember to ask the questions overtly.

CeCelia: Very much so and repetitively, and of course respectfully and all those things that go along with it. But people want to tell other people what is going on in their life. I mean, that is pretty, normal – human, in my view, just want to share what is happening and what some of the challenges are and providing that environment, I think is important.

Tania: And of course, because of the nature of PPA, there is kind of always new needs to be addressed. Whether it is the process for putting gas in the car.

Or thinking about travel or whatever is going on in your lives. It is different than it was before PPA, it is different than it was a year ago with PPA. So always remembering that those changes are happening.

Jerry: And continuing to ask those same questions. Tania how do you balance kind of your internal agenda as a speech-language pathologist, these are the things that we need to accomplish, with following that agenda of Wayne and CeCelia…

Tania: The agenda must be pretty fluid. I might have my ideas of goals that I have set, things that might have to do with communication, that might have to do… Maybe they are more language based, maybe they are more static or therapy-based activities. But when you come in the door and tell me, this is getting harder, the gas station thing comes to mind for me. So, what had been happening was Wayne was continuing to drive at that time and was putting gas in the car when it needed gas. But there had been a little snafu that we never did quite figure out all the details on, all we know is that Wayne knew something was not quite right, and CeCelia got the phone call that there had been an unpaid gas experience.

CeCelia: A little letter from Kwik Trip, yeah, yup. Oh my.

Tania: So, that was a call to action there. So, we did not feel like we were ready to say, “No more driving, no more putting gas in the car” because Wayne was doing a lot of things independently, and that was a piece of it. So, what we did was we talked our way through creating, basically a story based on pictures at the gas pump. So Wayne and CeCelia took Wayne’s iPad and went to Kwik Trip and took pictures of the screens that come up on the gas pump, and then brought those in and we doctored them up, circled ‘yes’, crossed off things ‘no’. So that Wayne had basically a script. And, it turned out that he did so much, once we got through this all, he did not really need too much to rely on the script. The process of creating the script really gave the support and the rehearsal. But that was an example of something that I maybe wouldn’t have thought of, had you not come in and said, “Ooh, we had this little thing happen, what do you think we should do about it?” And that I think is key right there. Yes, maybe I have my idea of tasks that I would like to work on, but when you walk through my door and say, this happened, or this has changed, or what about this? That is really a call to action to be flexible with what we are doing with our time.

Jerry: Right. And those are the real needs.

CeCelia: Right, right. And even now, as things are changing, that process of credit vs debit. Knowing Wayne has credit and he knows how to do that, not debit on the screen. Or would you like a receipt? Or do you want a carwash? Those typical sort of questions with minimal cueing, Wayne still has those because of that process versus me just saying, “Well, I will fill the gas,” and I do not even like doing that, but it just sort of helped sustain more independence in that process than I think would have happened without that.

Tania: Because it could have been quite easy to say, “Oh, you know, I am just, I am just going to do the gas.” But in terms of independence and continuing to do those, those tasks that are everyday life tasks.

CeCelia: Even how to put the credit card in and placing the strip to the right, etc., etc. All those things. And I was thinking about when you asked Jerry about coming in, or Tania you mentioned coming in with situations that are happening if people, I think if people are not willing or able or choose not to or whatever, or do not know what to ask for the speech-language pathologist to say “Well other people that I have worked with often will struggle with role change, being patient, describing this to family and friends, how is that for you?” You know, so

it kind of identifies common issues and gives people, “Oh yeah, maybe…” whatever and gives them the permission or the invitation or kind of the environment to ask for help in ways or to share some things that maybe they would not know how to or feel comfortable doing or whatever.

Jerry: Creates a space, kind of opens the door for that kind of conversation. And I think it is worth saying you, you mentioned earlier that your background is in healthcare, CeCelia, you are a nurse and a PhD faculty member emeritus as a nurse. So, you have knowledge and experience to draw upon in terms of advocacy and in terms of knowing what kinds of questions to ask, that some people might not have.

CeCelia: Right.

Jerry: I mean, I think what you just said in terms of that therapist, that speech therapist, that SLP, drawing upon those types of experiences and saying, not your name, but “CeCelia Zorn and Wayne would have had this issue, we would have worked through it this way,” right?

CeCelia: Yeah.

Jerry: Is that how you get there?

CeCelia: Yeah, right. And just saying, I think, what other people I that have PPA in their relationships, struggle with or find somethings difficult, and I will just share them with you. How is that for you? Just to open that possibility.

Jerry: Yeah, agreed.

Tania: I think that is key too in identifying that the sorts of things that have been challenges for you, maybe challenges for other people because, first, they are common themes. And second, they really identify that this is different from a stroke-based aphasia where the hope is that things get better. We know that roles are going to be changing, responsibilities, your interactions are going to be changing in a way that requires more and more from you - more support. And I think that also can be initially a difficult thing for people to hear or understand - with that new and fresh PPA diagnosis. What they would, what would be wonderful if we could provide, but we cannot and what many people would like is sort of that, the fix. We set these goals, you come in, we work on these things and

we send you on your way. But that is not an effective strategy for PPA because we know it is going to be degenerative; we know that there is going to continue to be needs. And there is a real responsibility on the part of the SLP to follow that through.

CeCelia: Right. And for us, that whole kind of concept of progression was one we had never experienced before. We both have chronic diseases, and they are managed with meds or have been managed with surgery. Yes, they are chronic, but the degeneration is either not there or minimal so that the concept of degeneration or progression is new. And conceptually that is, that is a steep learning curve.

Jerry: Yeah. And it is a different mindset for everyone involved. And I think there is a, as you said Tania, I think there is a temptation or a risk for the speech pathologist to say I am just going to do this discrete stuff because I know what to work on and then just say, okay we are done, and then move on. But this is not that type of a situation.

CeCelia: Right.

Tania: And truly, there is never, there is never a lack of things to work on, because of that changing nature. And, because of your active involved lives, you travel, you go to concerts, you are out in the community. So, there is plenty of fodder for things to work on.

Jerry: And this is a tough question, and maybe one we cannot answer, but if you were not the kind of people who were so engaged and so active, how would that change in terms of that relationship? What could we do to help continue that engagement and encourage that in, in the face of it is hard to get out there when things are not going the way that you would like them to go?

CeCelia: It is such a basic question because of people’s lifestyle is sort of established. That is probably not going to change. People automatically are not going to probably change basic ways of life. So I guess it is meeting, I mean, yeah, from your expertise, I guess I would suggest meeting people where their life is at and if it is you know, whatever that life is for them, and not necessarily changing their life, but changing the quality of where they are at. I do not know, that feels mushy, but…

Jerry: Well, no. I, might have been a hard question and one that was not answerable. But I think you answered it exactly right. First you must know what matters to those people or to whoever it is you are working with and meet them there. And, I think maybe something Tania has done, instill hope that you can continue to do that on some, some level to maintain that, those social contexts, and those activities? But you must find out what those things are.

CeCelia: What life is if it is life participation. Yeah.

Jerry: Great conversation. So just stepping out of role, just kind of regrouping to see if, I think we have addressed a lot of the questions. Things that we have not addressed directly: the SLPs role in education, providing that, and we did a little bit indirectly. I do not know if that is something we want to get into a little bit more directly.

Tania: That might be a good thing, a little bit more about the SLPs’ role in providing education and that it may be that, that balance of neurology and other disciplines provide versus what SLPs provide. What do you think we chomped into that enough?

CeCelia: Yeah, I do not know what else there is to say about that. We might need those pictures.

Jerry: Yeah, I was kind of thinking that might be a good thing to wrap up with.

CeCelia: Other than just to emphasize the need for information and the need for repetition, because not only does it inform the person and the care partner, it provides a strategy for the person and the care partner to describe the situation to other people. Otherwise, there is a struggle for language and content. So, it is, I think it is helpful in two ways.

Jerry: So, to have that model from the speech-language pathologist and the words… Yeah.

Tania: And that could help because I do not think we talked a ton about responding to friends and family about what is going on. So that might help too if we talk a little bit about that, because that gives you some of the language for talking to friends and family.

CeCelia: Right, right. You know, I have had families say, well, how is Wayne doing? Are things better? And I will say, well yeah, so how do you respond to that, are things better? And I will say, well we are in therapy and we are managing the best that we can. No, they are not better, they will continually degenerate. So, something like that is what I usually say. And they will say, oh, there is not a response for family to say to that, I understand the loss for them as well. Even that kind of phrase, I think is honest and people need to hear that. And, and I have heard it from the professionals in our community, so I feel comfortable saying that rather than say no, kind of fudging around and saying, “Well yeah, things are better.” They are not better.

Jerry: And I appreciate the was that you are so gracious and compassionate that those people are just trying to… your family, your friends, are just trying to do the best that they can with that interaction.

CeCelia: Yes.

Jerry: And they probably know even less than any of us do, right?

CeCelia: You know, I had an older brother, my oldest brother, who said - we will get to that Wayne...

Jerry: Wayne is chomping at the bit to tell us a little bit about your last vacation. I will let you tell your story about your older brother and then maybe we can just wrap things up with a good conversation about your trip to New York, so…

CeCelia: Right, right. My oldest brother said, Why? Why was it Wayne? And there is no answer to that. It is just, just a reflection of how much he, just how fond he is of Wayne and of me, I think as his little baby sister. You know, why was it not me?

Jerry: Wow.

CeCelia: Why was it Wayne?

Jerry: That is moving.

CeCelia: Yeah, yeah. So, you know, people just say that, even though sometimes they are clunky and whatever, it comes from a place of compassion.

Wayne: Yeah, but like that. Yeah, but like that.

Tania: Meaning well… caring…

CeCelia: Yes, of course, of course. Yeah.

Jerry: So, this looks like a brownstone -

Wayne: Yeah, but like that. Yeah, but like that.

Jerry: - somewhere in New York. Okay. And when, so when you were at New York, recently, you went to some plays on Broadway?

CeCelia: We did, we went to three musicals and a play. And Wayne loves music and yeah, so it was, it was great, four different theaters.

Jerry: Wow, that is great.

CeCelia: So, on the pictures that Wayne is showing, the first one was “Chicago,” lots of music and that one with the orchestra on stage. And the second one, the one we are looking at now is “Wicked” so that was fun with lots of music. This picture, Wayne and I are riding the Metro, lots, and lots of hanging on…

Tania: So, who was taking that picture there?

Jerry: I was going to say for all of them, who took…

CeCelia: My sister was with us.

Jerry: They are incredibly good pictures.

CeCelia: Yeah, my eldest sister.

Jerry: And I really appreciate the captions that you have included, to help share part of that experience.

CeCelia: Right. That may have been Tania’s idea early on. I cannot remember exactly but…

Tania: You guys have always come in with these fun pictures to share, different things that you are doing but sometimes you just did not know what to, as a conversation partner, I just would not always know what to do with that picture. There was not enough context. What Wayne and CeCelia started doing, was just editing, and putting some text in each of these pictures, just short little blurbs, so that it gives a little bit of context and it provides a means for conversation.

CeCelia: Right.

Tania: So, it is really, it is a helpful tool.

Wayne: Yeah.

CeCelia: It is a collaborative effort in doing the captions, I write them on a paper and Wayne types them onto the picture and then we together alter color and size and placement and Wayne hits done and we go on to the next one, we can do about four or five in a row. So, it is very, very, very collaborative, which is fun to do. It is a conversation starter, a person in the memory choir, without any loss in cognition, she is a singing partner. She asked me about what a good way would be to communicate with Wayne. And we did not know her until we joined the choir. I said, “Well he has got some pictures and, and he loves to show pictures.” I suggested to her, Laurie, that she not ask questions about the pictures, but simply make comments about the caption. So, for example, this one says, ‘Riding the Metro in New York City, hanging on to dear life,’ saying boy there are, just commenting and I showed her an example… “There are a lot of people in this Metro Car and you were standing holding on to this pole.” So just commenting on what, what she was seeing in the picture rather than, “So, how often did you ride the Metro?” Well, Wayne would not be able to provide that information. So anyway, that is very much in that conversation.

Jerry: Yeah.

Tania: And it is always something I look forward to when you walk in my door. The first thing Wayne does is to pull out his iPad and show pictures from what has been going on since the last time I saw him.

Jerry: Which is what any of us would do, right? To have that conversation about what we have been up to.

CeCelia: Right.

Tania: It is such a natural, a natural conversational activity of sharing.

CeCelia: And people in our social circles know Wayne has these pictures. So they are, you know, chomping at the bit to see the latest pictures.

Jerry: And what a great way for them to engage and to know that this is an effective way to communicate

Wayne: Yeah, but like that.

CeCelia: Yes, yes. Little National Geographic, yeah.

Jerry: I got to tell you, one of my favorite pictures, you mentioned that you have such great, they have great pictures, but Aphasia Access Conference, the last time with the three of you at happy hour, I think.

CeCelia: Oh, was it?

Jerry: Maybe before or after Aphasia Access, that was a great picture.

CeCelia: I do not think we saw that one.

Tania: Was that us at the airport?

Wayne: Yeah, but like that.

CeCelia: Oh, I think that was after we got through TSA and before we boarded the flight, yeah that is always a little hairy for Wayne to get through TSA, for both of us…

Wayne: Yeah, but like that. Yeah, but like that.

Jerry: It is powerful.

CeCelia: Yeah, it is. It just kind of my heart stopped when I saw that. I thought, Oh my…

Wayne: Yeah, but like that. Yeah, but like that.

Jerry: So that was your third show, right?

CeCelia: Yeah, “Chicago,” “Wicked,” Tina Turner

Jerry: Oh, Tina Turner, that is right.

CeCelia: Tina Turner the musical about her life, and then “To Kill a Mockingbird.”

Jerry: Wow.

CeCelia: Yeah all in four different theaters.

Wayne: Yeah, but like that. Yeah, but like that.

Tania: I love that picture. Just so cool.

CeCelia: Is it not fantastic? Yeah, my sister is skilled at photos.

Tania: Yeah, you know when she does take your pictures, you always have this nice backdrop.

CeCelia: Yeah, yeah, she is, she is good.

Wayne: Yeah, but like that. Yeah, but like that.

CeCelia: Yeah, yeah that was fun. That was lots of energy. And it is fun for us to go to musicals just because of our love and Wayne’s love particularly, of music and moving to the music and the people are moving to the music. You know, it is just a shared energy as compared to like, “To Kill a Mockingbird” did not have any music – it is just, it is all dialogue, essentially. So that was just maybe a little bit harder. Although we have gotten theater season tickets and continue to do that.

Wayne: Yeah, but like that. Yeah, but like that.

CeCelia: Your chin is all tucked in there, you must have had a cold chin. (Laughter)

Wayne: Yeah, but like that. Yeah, but like that. Yeah, but like that.

CeCelia: That was our farewell.

Jerry: There is the guests waving goodbye. Well, I think that is a great way to cap off this conversation. I think we could continue to have a conversation for hours here but really appreciate this opportunity to talk to you, all of you. Is there anything that anyone wants to share as we kind of like, bring things to a close?

Wayne: Yeah, but like that. Yeah, but like that. Yeah, but like that.

Jerry: Closing thoughts, ideas?

Wayne: Yeah, but like that. Yeah, but like that. Yeah, but like that.

CeCelia: I am not sure that we really talked a lot about the idea of emotions.

Jerry: We did not. Yeah, we just kind of, we can return to that we can always put it someplace else.

CeCelia: Yeah.

Jerry: Yeah.

CeCelia: The only comment I would make about that, because I do not want to disregard it, is the emotion for me and I really cannot speak for Wayne even or for other people is the emotion of grieving a loss. Just because we carry it well, does not mean it is not heavy.

Jerry: Right.

CeCelia: You know, it is that sort of notion, but some of the other emotions of anger and denial and bargaining and, you know, so those have not really been part of my sort of feelings.

Wayne: Yeah but like that. Yeah but like that.

Jerry: That loss.

CeCelia: Yeah just the, and the acceptance I think is probably the, the two key pieces.

Wayne: Yeah, but like that. Yeah, but like that.

Tania: I would think that grieving process could be a very individual thing but there is always going to be some degree of grief. Because it is a, it is a loss –

CeCelia: Right.

Jerry: And it is always changing

CeCelia: Yeah, yeah, yeah. So, I just wanted to add that as another piece of the puzzle for the listener.

Jerry: I think that is a point that will resonate with a lot of people.

Tania: And I think that is a balance to, that as an SLP you do struggle with, because I recognize that yes, there is a loss and grief there. And at the same time, some of the information that we need to talk about is hard and it can feel very tempting to skirt those issues sometimes –because, of course, nobody wants to see another person hurt or feel like you are adding to that hurt but by the same token, there are so many things that we need to talk about.

CeCelia: Right.

Jerry: And you said it well, just because you carry yourself well and have a smile on your face does not mean that there is not a need to have that conversation.

CeCelia: Right.

Jerry: And at least it, like we have said about other things to create a space, a safe space and time to do that.

CeCelia: Nothing can be fixed. I mean, it is just a matter of sharing, and people are informed about it a bigger picture. And if the emotions are not attended to that feels like a gap.

Jerry: And we have had conversations on Aphasia Access before about dealing with that emotional part of living with aphasia of any type. Listeners might remember the conversation with Ian Kneebone. But one of the important things there is just opening that conversation and the speech-language pathologist is in a unique position to do that, because we are the ones that can have that conversation sometimes –and can use written choice and can use other modalities to communicate. So, I think if, even though it is never comfortable, it is a door that we must step into.

Tania: We do.

Jerry: Yeah. So, I am glad that you brought that up.

CeCelia: Yeah, yeah.

Jerry: Okay. Well, thank you again for this great conversation and goodbye for now.

CeCelia: A pleasure, a pleasure, a pleasure.

Tania: Thank you.

On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at info@aphasiaaccess.org Thanks again for your ongoing support of Aphasia Access.

Resources

Riske, T., & Zorn, C.R. (2018). Three voices at the table. The Journal of Humanities in Rehabilitation. 1-10. https://www.jhrehab.org/2018/11/08/three-voices-at-the-table/