EPISODE 78 [INTRODUCTION] [00:00:05] MBH: Thanks for joining us at Keys for SLPs, opening new doors for speech-language pathologists to better serve clients throughout their lifespan. A weekly audio course and podcast from SpeechTherapyPD.com. I'm your host, Mary Beth Hines, a curious SLP who embraces lifelong learning. Keys for SLPs brings you experts in the field of speech-language pathology as well as collaborative professionals, patients, and caregivers to discuss therapy strategies, research, challenges, triumphs, and career opportunities. Engage with a range of practitioners, from young innovators to pioneers in the field, as we discuss a variety of topics to help the inspired clinician thrive. Each episode of Keys for SLPs has an accompanying audio course on SpeechTherapyPD.com available for .1 ASHA CEUs. We are offering an audio core subscription special coupon code to listeners of this podcast. Type the word KEYS for twenty dollars off. With hundreds of audio courses on demand and new courses released weekly, it's only $59 per year with the code word KEYS. Visit SpeechTherapyPD.com and start earning ASHA CEUs today.Ê [INTERVIEW] [00:01:24] MBH: Welcome to this episode of Keys for SLPs. Keys to a Right Hemisphere Stroke Journey. I am Mary Beth Hines. Before we get started, we have a few items to mention. As a reminder, if you are joining us for the live course and your state license requires live CEUs, be sure to complete all course modules including the one that says complete course before the end of the day today on your SpeechTherapyPD.com account.Ê We encourage questions from our participants. You can put your questions in the chat box for our guests to answer at the end of the episode. And here are the financial and non-financial disclosures. I am the host of Keys for SLPs and receive compensation from SpeechTherapyPD.com. Simon Barton is the author of two books;ÊNot so Green as Cabbage LookingÊandÊBad Rhymes, No Reason, and receives royalties from the sale of the books. He will receive an honorarium for his appearance from SpeechTherapyPD.com. No relevant non-financial relationships exist. Sarah Barton will receive an honorarium from SpeechTherapyPD.com for her appearance. No relevant non-financial relationships exist.Ê And here are our learning objectives for today. One; describe challenges following a right hemisphere stroke and explain why right hemisphere stroke is considered a hidden diagnosis. Two; describe challenges to care partners of a person recovering from a right hemisphere stroke. Three; discuss the right hemisphere post-stroke survivor journey, ongoing challenges, and supports. And now we welcome our guests today, Simon and Sarah Barton. Simon was born in Teddington, Greater London in 1960. He studied and practiced design mechanical B manufacturing engineering. He is a chartered engineer and a member of The Institute of Mechanical Engineers. He married his high school sweetheart, Sarah Hannock, and they had three children. He accepted a job offer and they moved to Raleigh, North Carolina in 1994. Following a right hemisphere stroke in 2013, Simon found the mathematics associated with his previous job too difficult and he sought early retirement disability in 2015. He has since reinvented himself as a published author of two books;ÊNot so Green as Cabbage LookingÊin 2019 andÊBad Rhymes, No ReasonÊin 2022.Ê Sarah was born in Balham, Greater London in 1960. And following a period of being a stay-at-home mother to her children, she returned to the airline industry, which she served for over 40 years. Sarah and Simon, we are so happy and honored to have you on Keys for SLPs to discuss your journey of recovery from right hemisphere stroke.Ê [00:04:10] SimonB: Well, hello.Ê [00:04:11] SarahB: Hello. We're very happy to be here. [00:04:14] MBH: Well, thank you for being here. We really truly appreciate it. We first met in November of 2023 at ASHA where I heard you speak and had the opportunity to talk to you a little bit afterwards. And I really just am so honored that you agreed to speak with us today. Simon, we talked before. Had a great conversation back about a month ago. And you said that Ğ we have the disclosures. But then you said you had some disclaimers. And you wanted to say what those disclaimers were before we got started. Can you tell us about your disclaimers?Ê [00:04:53] SimonB: Sure. Basically, when I do a presentation publicly or whatever, I like to come out with a few disclaimers. I like to get my apologies done in advance, if anything. Because I'm prone to offending people very easily. If you're easily offended, you need to leave now basically is what I say. That's the first disclaimer.Ê An SLP told me when I was recuperating in the rehab hospital after my ICU stint, an SLP said, "Simon, you've got to be very, very careful because it's likely that you've lost all your filters."Ê The first disclaimer therefore is that I have a medical excuse to be rude. And so, I tend to flaunt that terribly. Because I didn't have many filters to begin with to be honest.Ê [00:05:35] MBH: All right. Well, thank you for sharing that. And can you tell us why you decided to join us today?Ê [00:05:40] SimonB: Well, it's a bit of giving back. It's like when I was there at ASHA. I was invited to speak at the ASHA Conference, which was a fabulous opportunity for me to be able to talk to SLPs particularly because the SLP Community for me have been instrumental at least to helping me get through this jour journey with the least amount of damage, cognitively. And whilst physically I still struggle quite badly, at least my mindset and my mental health, I feel very good and very happy to the extent that most of the presentations that I do, I actually recommend that everybody has a stroke. Including all the SLPs that are innocently sitting there listening to it. And if I do my job right with my story of my journey, I would like to think I have them leaving the room thinking, "I got to get me one of them strokes." That was my best attempt at an American accent, which is obviously pretty ĞÊ [00:06:41] MBH: And it was a very good attempt at that. Well, no. I don't think anyone is wishing to have a stroke. But I really appreciate that sentiment. And we'll see. I think I might be one of those people today. Now I didn't see your full presentation at ASHA because I was working our booth. I only caught the last few minutes. But at that time, someone twisted Sarah's arm to say a few words and I was so impressed with Sarah's journey as well that I asked you both to come. Again, really appreciate both of you being here. All right. You also had something that I appreciated that was also a little humorous. Before we get started, can you tell us what you think about the term SLP?Ê [00:07:23] SimonB: Well, yes. Again, when I talk to SLPs, I open up by saying I've never understood the reason why in rehab hospital I had a physical therapist and I had an occupational therapist. PT and OT respectively. And then I had an SLP, a speech-language pathologist. And I've never liked the word pathologist. Because pathologist to me makes me think of crime scenes and dead bodies.Ê And then I go into some diet tribe about the difference Ğ the actual technical term, the difference between a therapist and a pathologist. And then I end up by saying, whether you think of yourselves as therapists or pathologists, it's up to you. But from now on, I will just regard you as super lovely people. SLP.Ê [00:08:11] MBH: Well, I love that. And I would rather consider myself a super lovely person, I think, than an SLP. It's funny, Simon, because I have been one of those people that really has stuck to the term speech-language pathologist. But when I heard it from your perspective, I really do think speech therapist is a more appropriate terms. Thank you for sharing that.Ê I heard other people's opinion of whether it should be a therapist or a pathologist. But when I heard it from you, it really resonated with me. Anyway, I will think of myself as a super lovely person/speech therapist.Ê All right. We mentioned it a little bit in your bio, but can you tell us about your background and describe what your life was like before your right hemisphere stroke?Ê [00:08:58] SimonB: I feel that we were on a roll, the family. When I say we, I'm talking about my lovely family. I have not only this beautiful lady. We now have been 40 years together as a married couple. [00:09:09] MBH: Congratulations.Ê [00:09:09] SimonB: We celebrated our ruby anniversary last June, which quite frankly is a major feat when I think what she's been through particularly the last 10 years. And my business was going like crazy. We were doing well. Three kids were all grown and up moving on doing their own things, which was nice.Ê In fact, the week of my stroke, that weekend beforehand, my eldest son was getting married and the reception was at my house. And in fact, I'd been working on the yard area, the big tent and nice waterfall and all sorts of nice little things around for the guests to enjoy while they were there. The night before, I had my stroke. And I think that probably didn't help matters. Because I was a bit physically drained. But anyway. I missed the whole bloody thing because I was in hospital. Although, an ambulance did take me in nicely. They broke all the rules to get me there. I actually attended the wedding horizontally.Ê [00:10:06] MBH: Wow. Wow. You were determined.Ê [00:10:10] SimonB: Life was good. And long answer to your question. But life I would say was really, really good, and then this thing happened. [00:10:15] MBH: Okay. And then tell us a little bit about your business. [00:10:19] SimonB: Well, we were a design engineering company serving the manufacturing industries of machine tools mainly. And it wasn't like it was lots of widgets. Small sales. They were usually big project sales. One or two a year of anywhere between as little as $100,000 to as much as a couple of million bucks. Quite big. Heavy design and professional engineering people that I had to have. And they were doing very well actually when I was in the hospital and going through my rehab journey.Ê And then I made the fatal mistake a year later, and this is I think part of the right brain issue, of thinking that I could get back to work, and start all over again and then run the business like I was doing it before. And I started making decisions that my key employees, particularly, said, "You don't want to do, Simon," particularly in the areas of investment, research, and development. Things that cost money. And as a result of those stupid decisions I made because I was always right, I was dogmatic in that respect, we filed for bankruptcy the year after. Literally closed the company down. My failings, my inability to listen to other people's opinions and advice and so forth. [00:11:32] MBH: Which was really caused by the stroke. [00:11:34] SimonB: Yes. I'd like to say that.Ê [00:11:35] MBH: Mm-hmm. Mm-hmm. Well, I am sorry that that happened. But as we will talk later, you have found a lot of resilience in your recovery. We really appreciate you sharing that. Okay. Tell us about your hospital course and the symptoms after your stroke. [00:11:53] SimonB: I'd like to pass that over to the boss here to my right. Because I remember when I was actually doing my ASHA presentation, Sarah came up to me afterward and said, "You were a lot longer in the hospital than you said you were." And I couldn't necessarily remember. She was the one that was coming out every day to see me. I was in ICU ĞÊ [00:12:12] SarahB: For 10 days. 10 days in ICU. And at which point one of the doctors told me that he would probably only be a cabbage when he came out. [00:12:21] MBH: One of the doctors told you that in ICU?Ê [00:12:25] SarahB: Yeah. I was very distraught and trying to prepare. Because we had this wedding coming up and we were only 52. It was like this shouldn't happen to us. We're too young for this. I stayed in ICU. And then he was transferred to a rehab unit in Raleigh, which fortunately for us is one of the best ones in the area. And so, he went there. And he was there for just over three months with therapy every day. And he was not very good at it. He was depressed. He wouldn't talk. He didn't want to eat. He looked 30 years older than he looks now. And he went from being 52 to like 82 just overnight virtually. I mean, he was in a wheelchair. He couldn't walk. Couldn't do anything basically. And he became very, very depressed.Ê He finally came out of hospital Ğ or the rehab after about three months. And during which time we had have to try Ğ we had a regular two-story typical house. And we had to try and Ğ we didn't have a shower or anything downstairs. And so, we had to try and do the best we could with reorganizing the house, which we never did get the shower downstairs. But we did have another toilet put in. And he had to be wheelchaired to the toilet. And then at night to go to bed and have a shower.Ê My daughter was living with me at the time because she was staying with me and my son was around at the time, which he's not now. They used to help us help me get him up the stairs every night. Every night, the three of us were getting him up the stairs. Getting him into the shower and just getting Ğ and I had to get up in the night, every night to take him to the bathroom. And in the meantime, I was still trying to go to work. It was very stressful for all of us. All of us.We didn't know anything about strokes much. [00:14:18] MBH: You didn't know. Did you know anyone who had a stroke before this?Ê [00:14:22] SarahB: Not really. No.Ê [00:14:23] SimonB: No. We only knew of people. In other words, Winston Churchill for example, our most famous statesman from the UK. We know that he died of a stroke. [00:14:33] SarahB: Mostly happened to older people. Usually people ĞÊ [00:14:34] SimonB: Exactly. But he was 90-some when had his last stroke killed him. [00:14:39] SarahB: But now we know lots of young people that have had strokes because we're active in the stroke community. We do know it happens to lot of young.Ê [00:14:47] MBH: Not having known anyone besides Winston that it must have just been a shock.Ê [00:14:53] SarahB: It was a huge shock to all of us. Yeah. [00:14:55] MBH: You are walking now and you use a scooter for long distances. Is that correct?Ê [00:15:01] SimonB: No. I walk as far as I need to walk. We've went flying in Ğ we went to France for my sister's 60th birthday party on a skiing holiday in the Alps. And I was happy walking right across the airport to get on the planes and so forth. It's not the end of the world. I don't walk well. You would say, "Look at that cripple walking over there." But it's not like I walk like Sarah walks or you walk. I get from A to B ugly. But I do it. So, I'm happy with that. And I walk every morning, too, part of my exercise routine that I do every day. [00:15:37] MBH: That's wonderful. When did you start to be able to walk on your own without the wheelchair?Ê [00:15:43] SarahB: That took about I would say another three months with the help of an absolutely amazing physical therapist who mainly deals with people with brain injuries. She was very, very used to dealing with Simon's condition. And in fact, everyone recommended that we go to her after the hospital. And she was amazing.Ê And she got him up. And he didn't want to do it because he was still very depressed at this point. He couldn't move his face to the right. He would always look left. And he was miserable most of the time. But she forced him to get up and walk. And he did. And the first days, we were all in tears when he actually started to walk. Every one of us. My daughter was there. And so, we were just crying with joy that he could actually now walk just a little bit. And gradually he got better and better. [00:16:34] MBH: Oh, thank goodness. Thank goodness you had her. And also, you had the determination to get to where you are now.Ê [00:16:42] SarahB: Yeah. The therapists were really, really wonderful. All of them.Ê [00:16:46] SimonB: Yes. In rehab hospital, they at least taught me to be able to stand or at least use my strength to be able to get up from a sitting position. And then Sarah was trained by the PTs to how to manhandle me from the chair to a sofa, or a chair to the bed, or the bed to the chair back to the toilet and so forth. It was literally physically getting me from one object to another up until that point until I could actually walk for myself. [00:17:17] SarahB: Yeah, which was about three to four months. [00:17:21] SimonB: Long answer to your question. [00:17:22] MBH: We should also say thank goodness for Sarah as well being by your side and helping you through all this. [00:17:28] SimonB: Bloody right. Yeah. [00:17:29] MBH: You said you were prior to this, during the three or four months post, you were depressed. When do you feel like that depression lifted? I imagine was probably gradual.Ê [00:17:41] SarahB: After the business failed, it was a good couple of years to live and got over there. And it was only really when he started to write his first book that there was a change. Because he had purpose again. Before that, he used to sit in front of the TV all day watching nothing as we all do. He suddenly started to have a purpose in life and he started working on his book. And then that really, really helped.Ê [00:18:05] MBH: Well, much of what I talk about when I'm doing these presentations is the importance of being happy as a goal. My goals when I left rehab - hospital was sort of a challenge. I guess it's the sort of the character that I was beforehand. Developing new technologies, patenting them and having a fairly good successful career at that point of going over and above what the average engineering person was doing. And so, when somebody says, "Simon, it's going to be a very long recovery. It'll be a long time before you can walk again. Forget ever playing tennis again. Forget ever playing your guitar or all these things. Like, golf and so forth." To me, that was just a challenge when I left the hospital. And I was quite determined that I would be playing tennis, playing my guitar and doing everything. Going back to work. Doing all the things I was doing before I had my stroke. Everything was going to be back to normal.Ê [00:19:09] SarahB: Then it wasn't. [00:19:11] SimonB: And so, I set these ridiculous goals that people that have had a brain injury shouldn't be setting goals for themselves in my opinion. Because I didn't know any better. As Sarah said, I've never had a stroke before. We've never experienced anything like this before. What do I know about how the brain supposedly recovers?Ê And, literally at that point, it's out in the presentations. The word recovery, if you actually look it up in, for example, the Oxford English Dictionary, means regaining something back or getting something back that you've lost is the technical meaning. And in medical terms, back to a normal state of health.Ê When somebody talks about recovery, I think, "Well, I'm going to be back." And the thing that you learn or that I've learned has taken me 10 years to learn it. You know you don't recover from stroke. You'll never get back what you got back before. Everything, anyway.Ê [00:20:09] MBH: You were really Ğ oh, go ahead. [00:20:12] SimonB: Therefore, through my writing, I reset my goal. As in what is it that makes me happy? And being the egotistical son of a bitch that I am, I took the view that, "Well, I like the sense of achievement." Somebody packed me on the back saying, "Good job, Simon," made me really happy.Ê When I wrote a little essay, or a little poem, or something, I said, "What do you think of this?" And they said, "Simon, that was really good. Good job." Then that made me happy. I thought I'd write some more. And then when somebody says, like, this lady, Jamila Minga, the Duke professor that I became close with, and she said, "Simon, I'd like you to come and speak to my class." And I spoke to a class of junior young, one of the SLPs. And they all gave me a round of applause at the end. And Jamila afterward then turns around and says, "Simon, that was really good. Well done." A little tear weld in my eyes, "Oh, yeah. I did well." And it made me happy. And then that just made me want to write more, talk more, and do other things more.Ê And so, I found myself accidentally, if you like, reinventing myself. And as you read in this last book, I wrote the poem calledÊReinvention. And that's what I think that we, as stroke survivors, all go through. And that's what I like to try to convey to my audiences whether it'd be full of stroke survivors or SLPs to relate to other stroke survivors is forget this word recovery. It's not a recovery journey. It's a journey of discovery. Not recovery. We're learning how to be ourselves. It's like being reborn. Except, obviously, you have some disabilities.Ê We have to learn how to walk again. We have to learn how to talk again in the case of people with aphasia and so forth. We have to learn how to be ourselves again. And maybe the path that we had when we were fit and young isn't available to us, then you have to reinvent a new path. And, basically, that's what I've done for me, which has made me as happy as I am now. And I'm very content with where I am now, which is why I say everybody should have a stroke. You'll feel a lot better for it. [00:22:33] MBH: Well, your journey of discovery and reinvention is so inspirational. How many years after your stroke did you get to that do you feel like you got to that point?Ê [00:22:46] SimonB: It was gradual. It was a long time. Fortunately, one of my first SLPs said, "Simon, you need to keep a journal. Start writing in a journal." And she also said, "If any time you want to talk about something that you're struggling with for our next session, write a little essay. Let me read it and we'll talk about it when you get back." Any excuse to write things down, do it. Well, again, as was said at the beginning, I struggled my filters. I offended a lot of people. Therapists particularly. Physical therapists, occupational therapists.Ê In fact, the whole last book started because of a lousy comment I made to my occupational therapist when I called her a cow. Because she made me do an exercise that I was struggling with. And when she told me to do another 10 reps, I just said, "Oh, you cow."Ê [00:23:39] MBH: And cow is one of those words that there are some little nuances between American English and Great Britain English. Tell us about the difference between your cow and my cow. [00:23:50] SimonB: Well, a cow to an English man is a term of endearment. She's my favorite cow right here. If I call you a cow, it actually means I quite like you really, Mary Beth.Ê [00:24:03] MBH: Okay. [00:24:04] SimonB: Of course, I tried that on with the occupational woman and she said, "What did you call me?" I said, "A cow." And then immediately, thinking as fast as I could, I said, "But it means that I like you, honestly." And then all the other therapists in the room that heard this conversation got on her side and said, "Over here, we don't say that sort of thing to each other over here. No. No. No. No. No." So, then I wrote this poem of apology, which basically ends up with me being right all along that it is a term of interment. Because a cow gives much of herself in terms of what a cow Ğ milk and all that sort of stuff. But anyway. [00:24:42] MBH: Ah. Now do you think you would have made that mistake or said that prior to the stroke? Would you have called an American female a cow?Ê [00:24:56] SimonB: Yes. Oh, yes. Well, I mean, as I write in my book, I made mistakes the whole way through. George Bernard Shaw, a famous playwright, once said that England and America are separated by a common language, which is absolutely true.Ê When I first came as Ğ an example, since I told you I have no filters. As an example, my very first lady secretary that I employed when I came over here Ğ because I used to do all my engineering drawings with a pencil. I'd made a mistake. I went up to her and I said, "Katherine, do you have a rubber?" She said, "I beg your pardon?" I said, "Do you have a rubber?" She said, "What do you take me for?" I said, "You're my secretary. Do you have a rubber?" And it took that long to realize that what I was talking about was what you called an eraser. [00:25:50] MBH: And it had to go from bad to worse before you got there. [00:25:53] SimonB: Yes. As I put in the book Ğ and, literally, she was also sort of Ğ because I used to handwrite all my letters, and this in the days before we did everything ourselves on our laptops. I'd handwrite my letters and give it to her and then go out the door and she'd type them up and send them off in the mail and so forth.Ê And this woman once said, "Oh. And, by the way, Simon, I have corrected all your spelling mistakes." Well, of course, that made her an absolute first-class cow. But I didn't say it out loud because I didn't really like her. There you are, right?Ê Yes. The answer to your long Ğ again, long answer to your Ğ this is the other thing about stroke is I tend to deviate and waffle a bit. Sorry for that. But, again, I'll answer your question. What was it the ĞÊ [00:26:52] SarahB: What was the question?Ê [00:26:54] MBH: I think the last one was the Ğ well, my question was would you have said those same things? Would you have called someone a cow before Ğ in 2012, would you have called an American female a cow?Ê [00:27:10] SarahB: Only English ones. [00:27:13] MBH: Only English. You would have known the distinct Ğ you had that distinction.Ê [00:27:16] SarahB: Yeah.Ê [00:27:18] SimonB: No. If I liked the lady, I probably would have done.Ê [00:27:25] SarahB: Well, in England, we call each other cows. Women call women cows, too. [00:27:28] MBH: Okay. Okay. [00:27:29] SarahB: I could call my sister a silly cow. She would call me a silly cow. Could you say something silly or whatever, you know?Ê [00:27:36] MBH: Yes. Yes. [00:27:38] SarahB: It's very common in England. Everyone's a silly cow. [00:27:39] MBH: Okay. Okay. Okay. Simon back to your hospital course and when you were in intensive care in the hospital and in rehab. What was your biggest challenge as far as communication goes?Ê [00:27:58] SimonB: Comprehension, I think. Yeah, probably. Comprehension. First of all, as Sarah said, I couldn't actually look face-to-face at the person. I was usually up there somewhere or Ğ and people would be directing things saying, "This is what you need to do." And it would go in there and out. Yeah. I just couldn't absorb what was being said.Ê [00:28:25] SarahB: Yeah. You didn't know what was going on. Just didn't understand anything, did you?Ê [00:28:30] SimonB: That was quite oblivious. [00:28:30] SarahB: You'd sit like that all the time. And it was just sad. [00:28:35] MBH: And just sit and stare. And when did you start to feel like your comprehension was starting to improve?Ê [00:28:42] SimonB: When I started writing. Because I think that's the beauty of writing, is that our brain just doesn't work as fast after a damage like I had and others have had. You asking me a question certainly in the early days, I couldn't process it and respond to it as well. When I look back in the failure of my business time, when I tried to get back to work, I can look back now and think of all the things that my top execs were saying, "Simon, you need to do this. You need to do that." Or, "Don't do this." Or, "Don't do that." They said it but I just couldn't comprehend it. Sarah has said many things, I know, in the past that it wasn't until a day or 24 hours later that I realized she was right. I think comprehension was the biggest problem.Ê But when I sit down and type one letter at a time with my one good hand and I sit back and look Ğ if I look at it and then reread the sentence and then make the corrections and so forth as you do when you're writing, then it's absorbing it. Say, starting with writing, gradually from then on, the comprehension got better. And the other thing I struggle with is group talk. Conferences and meetings. I couldn't get it out. Somebody would say something and I'd have something in my head and I want to get it out. I couldn't find the right time to be able to say it. And by the time that I did, we'd moved on to another subject. That was really hard, too.Ê [00:30:31] MBH: Looking back, do you wish you had waited to go back to work?Ê [00:30:34] SimonB: No doubt about it. They were doing a pretty Ğ we got execs that were left in charge of the business when I was in hospital, were doing a good job. The business was liquid. It was struggling a little bit. It needed a little bit of help. But I think they would have done okay without me. Much better than with me there, for sure.Ê [00:30:57] MBH: And then if you had come, if you could do things over again, would you have waited like another year or another six months? What would you think?Ê [00:31:09] SimonB: I don't know. I don't know when there would have been a good time, to be honest. And I suppose, also, the extent. Because when I said I was going back, I decided I was going to go back every day. Now, appearing Ğ going every day is quite different to maybe showing your face maybe once a week for a couple of hours just to check on things and contribute if you feel you could.Ê [00:31:35] MBH: But when you went back, you wanted to go back as you were the president. [00:31:40] SimonB: Exactly. Yes. This presentation I did at ASHA was entitled Him, That Person, And Me. And they're three completely different characters in the one body all surrounded by the stroke. Him was the guy, what I coin the bloke before the stroke. Who I was before. And then I talk about who he was. My background and all that stuff. Then that person is this horrible person that was created immediately after the stroke. Maybe one to two years after the stroke who was bolshy, depressed, angry all the time. Until, finally, through my writing and achieving a little bit more happiness and reinvention, it ends up with me.Ê That person is the guy that we're talking about. He couldn't listen to anything. He was incapable of really performing to any competent level, in my humble opinion. And I say it's such a slow gradual process. I couldn't say that, "Oh, there it was," right there and then. At that moment, it went from that person to me. It wasn't a eureka moment. It was just slowly Ğ through the writing, really. Anyway, if you've written a book or whatever, it's quite a long process. And so, the whole writing bit was an evolution, if you like. Creation. [00:33:36] MBH: That's wonderful. Good advice to others who may be listening. I think we talked before, this podcast is designed for speech-language pathologists. [00:33:46] SimonB: Super lovely people.Ê [00:33:47] MBH: Super lovely people who can listen and get continuing education units. But it is also available or will be available in the future on podcast platforms. There might be someone who is a right hemisphere stroke survivor who listens to this. And that's very good advice. The writing is very good advice. Thank you for sharing that. Well, thank you. And, Sarah, do you agree with that evolution of him, that person, and me?Ê [00:34:20] SarahB: Yes. Three distinct people. And now that he's the new one. He's much better. [00:34:25] SimonB: She actually loves me now. She didn't before.Ê [00:34:28] MBH: Something tells me she loved you all along. But some days, it's easier to love our loved ones than others, right?Ê [00:34:33] SarahB: Right. Exactly. Exactly. There was a couple of years there where I could have cheaply strangled him. But he came back.Ê [00:34:41] MBH: And, Simon, you said you have three children. We didn't really talk about it ahead of time. But how would you say that they have evolved as you have evolved from him ĞÊ [00:34:54] SimonB: I'm terribly proud of them. And my eldest, the one that got married the week of my stroke, they had my fourth grandchild last Ğ the end of last Ğ October of last year. That just brings me joy. [00:35:10] MBH: Well, congratulations. [00:35:11] SimonB: I'm very proud of them all. They're each very, very different from each other as well. My daughter runs a restaurant and is doing very well. And she's a sommelier. I learn from her about wines every time she comes around. And, basically, how little I know about wines.Ê my middle son is the Ğ he's the guy that I always wanted to be. Only recently, he was in South Africa filming something for Netflix. Yes. And now he's back in Kentucky in a bourbon bar having a good time doing that.Ê [00:35:53] SarahB: He's a world traveler. He likes to travel the world. [00:35:56] MBH: Well, how exciting. Your children are dual citizens? [00:36:01] SimonB: Yes. Well, no. Our daughter is.Ê [00:36:05] SarahB: Yeah. Hannah, the only one that is. The two boys still haven't got their citizenship yet only because they're lazy. They didn't want to fill out the forms. [00:36:14] MBH: Well, it is an extensive process. I know that. Because I have a sister-in-law ĞÊ [00:36:19] SimonB: It's easier just to Ğ maybe they just fly to Mexico and walk across the border. That's probably the way to do it.Ê [00:36:25] MBH: But how is your Ğ it's sounds like they are all thriving. And that I can only imagine they were in their early 20s when this happened to their father and their family and really changed the dynamics of your family. [00:36:38] SarahB: It did. It did change the dynamics of the family. Because Simon was always the one in charge. Telling everyone what to do. And what we were going to do. And he was always holding a party about something. You know, "Let's have a party." All about that. And then that just disappeared.Ê [00:36:57] MBH: He wasn't in charge anymore. I was. And it wasn't so much fun. Not for me anyway. [00:37:06] MBH: A lot of changes. How about relating to them, Simon? When you were that person?Ê [00:37:13] SimonB: No. I was pushing them away. Again, I'm grateful to my whole family because they have had to put up with an awful lot with that person in those early years, for sure, that I dread to think what they were thinking during that time. I mean, she said she could have strangled me. I'm sure they would they would have held me down while she did it.Ê [00:37:37] MBH: But how wonderful that you have come to the point where you are now with your family dynamics, and all your children and grandchildren. Thank you, again. We hope that inspires other right hemisphere stroke survivors. Do you call yourself a survivor?Ê [00:37:58] SimonB: I do. Although a local charity that I support refers to us as warriors. [00:38:06] SarahB: I've got the t-shirt on. [00:38:06] MBH: Oh, I love it. I love it. Can you get up a little bit so we can see? Oh, my gosh. I love that. That's so cute. Well, I'll have to ask you afterward how I can get one of those.Ê Okay. We have a question from one of our participants. Were you a writer at all before your stroke?Ê [00:38:29] SimonB: No. I think I have a good Ğ I've had a good command of English. And I used to write a lot of technical papers. Whether it'd be for a technology that I just developed. An engineering technology and was presenting, I would write a technical paper. Go to a conference. I could write business plans. Technical engineering, stuff like that. Business, stuff like that. But in terms of writing something that somebody might be interested in reading is a completely other different story.Ê But, no. I'm really pleased that I've enjoyed Ğ because, obviously, I know nothing about strokes. But I know a lot about what I've been through. And I think some the experience Ğ I think I have a sense of humor. And being able to put a sense of humor in the whole thing has helped as well for sure. And being able to write with a sense of humor, I think it's also helped. [00:39:29] MBH: Absolutely.Ê [00:39:31] SimonB: I'm learning as I'm going along. [00:39:35] MBH: Do you think Ğ and, again, we can't go back in time. But do you think if that Ğ I almost said SLP. But I'm going to say you think if that speech therapist, that initial speech therapist, do you think if she hadn't told you to write a journal, do you think you would have eventually become an author?Ê [00:39:53] SimonB: I don't know. Well, I'll say the amount of letters of apology, I was leading on to say I don't think I actually said it before, which was actually the start of that second book when I called this lady a cow. Because I Ğ in fact, I talked about that same speech pathologist. I wrote her a letter of apology because we were in class one time and she actually said, "Simon, I do like the way you said Ğ" I know she asks us to read things in the group. Because the group that I was associated with was an aphasia group. There were people in that group that really were struggling with speech.Ê And despite the fact that mine was right brain, I was still part of this group, which was a great thing for me. We would take it in turn maybe to read a passage. And so, I'd read. And this lady would say, "Simon, I love the way you speak. I love the way you said, for example, I like where you said grass." Well, that's fatal to say that to me. Because I said, "Well, do you know, Mora, I've always thought you've had a lovely ass." Which she said, "I beg your pardon?" There's another a letter of apology right there. [00:40:58] MBH: Sarah, I can see you rolling your eyes, right?Ê [00:41:01] SarahB: He is bad. He is bad sometimes. He hasn't even had a drink yet. [00:41:08] MBH: But do you think you would have ended up being an author if the SLP had not said keep a journal? Do you think he would have ĞÊ [00:41:18] SarahB: I think he would have done. Because I think he would have got there himself eventually.Ê [00:41:22] MBH: Eventually. Okay. [00:41:23] SarahB: Because he couldn't. He has to do something. Because he can't sit and do nothing. He did that for two years. And that was awful. He had to do something. I think, eventually Ğ and he can't play golf anymore. He can't play tennis anymore. All those kind of things were out the window. What is he going to do? He's not at work. He had to do something. think writing, he would have eventually got there. But I think that just spurred it along a little bit with the SLP saying that. Because he started him off earlier, I think. Because I don't know what he would have done otherwise.Ê [00:41:59] MBH: It seems through this journey, your advice might be to someone else who has a right hemisphere stroke, find something that you can do and do it. [00:42:13] SarahB: Yes. Find something that you can, so you can do it.Ê [00:42:16] SimonB: Yeah. Well, I think we need to find something. What is it that makes us happy? Because, again, I put this in the book. I recommend everybody gets these books. But anyway, let's stick to the last one. It took me ages to work out that what everybody was saying Ğ I used to hate the fact that other people could move physically quicker than I could. And I would constantly be told, whether it'd be from SLPs, or OTS, or PTs, well, "You got to understand, Simon, everybody's stroke is different." I really hated that answer. I could not accept it.Ê It took me the whole of the first book to recognize that what they were saying all the time was right. Everybody's stroke is different. Everybody's journey is, therefore, going to be different.Ê My friend, Sean, who lives up the road actually, he is the complete opposite to me. He wasn't going to get beaten by this depression of not being able to Ğ he worked really, really hard and he is now running. He is doing many of the Ğ he's playing a lot of golf. And he comes and he says, "Do you want to play golf, Simon? Do you want to do this? Do you want to do that?" And I'm very proud of him and very pleased for him.Ê Everybody's journey is going to be different. I think that's the first lesson is they've got to accept that some people can get some brain cells to actually function and get the arm moving and the leg moving like they used to. It just didn't work out that way with me. Just because writing seemed to be okay with me doesn't mean to say it would be for everybody. But find something that makes you happy. I think that's the most important thing. There's more to life than playing golf, or playing tennis, or doing some of the things that you were doing before. But I have the time. I didn't have before to at least sit at a laptop and just type a letter at a time and concoct a piece. So, that when Sarah gets home in the evening having worked a whole day, I can wave a piece of paper and say, "Look what I did today." And she said, "Very good, dear."Ê [00:44:37] SarahB: Well, they were very good. [00:44:38] SimonB: After rolling her eyes. But ĞÊ [00:44:39] SarahB: No. I didn't roll my eyes. No. They were good. [00:44:42] MBH: Well, and that's good advice. Your advice to someone who's had a stroke is good advice to anyone. Find something that makes you happy. Put your energy where it's going to make you happy. And sometimes we have to reinvent ourselves for different reasons. But your story is so inspirational.Ê Sarah, what do you think Ğ like when you look back Ğ Simon said comprehension was hardest for him initially and looking people in the eye? What do you think was most challenging for Simon?Ê [00:45:19] SarahB: Well, I think the fact that he couldn't drive anymore. He had to be taken everywhere. He couldn't walk. It was just awful. It was awful for everybody. For all our friends and relatives. It was just such a different person. Such a different person. I mean, you couldn't even see properly. We had to go Ğ we went to find a wonderful eye doctor that actually allowed him to be able to drive again. And by having this intense eye therapy, neurological eye therapy, brought back his sight. Just little things like that, you know? And so, he really couldn't do very much at all. The whole thing has just been a long time, hasn't it? Now he can take care of himself. And he takes care of the dog, too. [00:46:07] MBH: Well, when did you start driving again? [00:46:10] SarahB: When was that?Ê [00:46:11] SimonB: A couple of years. [00:46:11] SarahB: About two to three years. Yeah. Two to three years. They did a special class for him. And they took a test and they said he's fine. His car is de-adapted for one hand. One-hand use. And he drives everywhere. I mean, he's driven up to Kentucky, in fact, on his own.Ê [00:46:31] SimonB: I did a presentation at Indiana University, which is quite a drive from here. But I still did it. [00:46:37] SarahB: And that was a big thing though, wasn't it? The independence. [00:46:39] SimonB: Oh, it's huge. The thing is, again, I didn't know anything about it. And it's funny because Ğ and I want to just say that the same guy, Sean, that I mentioned earlier, went the same rehab hospital as me. And I was down in rehab going through some exercise with the PT when this guy comes in who I'd never met before. This young man, Sean, and I could not understand. This PT said, "Hello, Sean. How are you doing?" He'd had him a couple of months before me. He said, "How are you doing?" He said, "Why are you looking so happy?" And, Sean, with a big smile in his face, "I can drive." And I'm there sort of lying down on this map thinking, "What's the big deal?" I didn't understand why he was so happy about being able to drive. Didn't even occur to me what that meant. And I would go through exactly the same thing as he did. But I didn't know it at the time of course. Independence is a massive, massive thing. [00:47:38] MBH: So important for us to hear you say that. Because anything we, as SLPs or speech therapists, can do to help people regain their independence is so important.Ê [00:47:48] SarahB: Yeah. He can do most things. I mean, he can cook. What can't you do? I mean, he puts his clothes on. He goes in the shower. Everything like that he does on his own. He's not very good at cleaning though. [00:48:00] MBH: I don't think Ğ does that have anything to do with the stroke, Sarah? [00:48:03] SarahB: No. Because he couldn't do it before either. [00:48:05] SimonB: The highlight of my day Ğ get this, right? This is absolutely true. And I know that Sarah knows this deep down. But the highlight of my day is that I'm up very, very early doing my exercises, my walk. And Sarah, while she works, she doesn't actually leave the house until about 8:00. And I love the fact that I can actually do a little bit of washing up in the morning and wipe the tops down of the kitchen and then take her in a cup of tea into her bedroom Ğ into the bedroom and just say, "There you are, darling. Cup of tea for you. Good morning."Ê [00:48:38] SarahB: Which is lovely. [00:48:40] SimonB: Which, for me, is fabulous as well. I mean, not because I think she likes it. It's the fact that I feel that I'm contributing something to our house. Just a little bit of a wipe clean up of the kitchen and a cup of tea in the morning says I've done my bit. Or a little bit. [00:49:01] MBH: Yes. So important to feel like we are contributing. And you're part of the team. Those are little signs that you and Sarah are part of a team. She helps you. You're helping her. versus many years where she was shouldering most of the responsibilities.Ê [00:49:18] SarahB: That's the truth. He's just finished the taxes. Another thing that I can't do. [00:49:23] SimonB: Before the end of January is a record for me. [00:49:25] MBH: That is impressive. I can't say the same thing in my house. That hasn't happened yet. Sarah, as the care partner, and wife and mother of your three children, what was the most challenging Ğ you've mentioned a lot of things that were challenging. But looking back. Initially, what was the most challenging thing for you?Ê [00:49:49] SarahB: Well, apart from him, for me what was hard was that we had to leave our house. Because we had a bankruptcy. We had to move and sell our house, which had been our family home for 25 years and find something smaller, which I actually have to say that our little house now is very nice. It's small. Isn't it? Single story. But I found that quite difficult having to give up there.Ê And the other thing was worrying about money all the time. Because he'd always done that. I had just gone to work and raised the kids and taking them to all their sports and all whatever they do. Hadn't really worried about money like that, you know? And now I had to. Because I had to pay all the bills. I was in charge now. And I had never been in charge before. That was hard, too. Just doing the financial stuff, which if you've never done it before, it was hard. But now it's okay.Ê [00:50:44] SimonB: We have a system. [00:50:44] SarahB: We have a system. We have a good system. But that was challenging. [00:50:48] MBH: I'm sorry for that. But thank you for sharing that. And I'm sure there are care partners out there who will hear that and they might be in an earlier phase of this recovery. And to hear how well you both are doing now is very inspirational. Thank you.Ê All right. We have another question. Okay. Let me read it here. Sarah, in retrospect, what would you like to have been different in his medical services?Ê [00:51:21] SarahB: I think we got wonderful care. I mean, the therapists were all amazing. Even the doctor that called him a cabbage became a friend. He was astounded, wasn't he? That was Ğ Football guy. He was astounded. Yeah. And he was thrilled. He was thrilled. All the doctors have been amazing. I really can't say. Can you?Ê [00:51:45] SimonB: No. [00:51:45] SarahB: Because all your doctors now are amazing, too. Aren't they? Great doctors now. [00:51:49] MBH: Well, that is certainly a testament to our doctors here. And you're in the Raleigh area. Yeah, you do have two good medical centers at least that I know of there. [00:52:02] SarahB: Oh, we've got a lot. Yeah. Plus, the fact I had good insurance is also important. [00:52:06] MBH: That does. Makes a huge difference. Okay. Well, as a reminder to our listeners, if you would like to put your questions in the chat, we can answer those questions now. Let's talk about future plans. Simon, what are your future plans here? [00:52:23] SimonB: Well, I'm on book number three, which is going to be Ğ it's completely different. Before, they were just plain memoirs. This one's a novel. [00:52:35] MBH: Oh, yes. Yes. Yes. Yes. Can you reveal a little bit of the plot? Or do we have to wait? Because you mentioned this to me and I just love the plot. [00:52:42] SimonB: Well, the plot is it's going to be a group. Because I've done a lot of stroke support groups. For example, one of the groups that I'm active with only met every two weeks on a Thursday. And we seem to get on so well that, what happens with the Thursday that we're not doing anything, we decided to start up a Grumpy Cripples Club, which basically meets at the pub. And we can have a few beers and have a good old laugh and then about how terrible we are.Ê The idea started really about that, about the Grumpy Cripples Club. There are all these different personalities in this group. Some with aphasia. Some a left brain. Some a right brain. But at the end of the day it's going to be a love story with a right-brain stroke guy falling in love with a left-brain lady. And the matchmaker was an SLP, of course. [00:53:39] MBH: Lovely. I love that. Just out of curiosity, you're in Raleigh, or you're in Wake Forest, where does the Grumpy Group meet?Ê [00:53:48] SimonB: Somewhere between Carrie Ğ well, it used to be at a pub that was sort of reasonably local between all of us. And in fact, the last one, since I've moved to Wake Forest and another guy moved even further north away from the Cary town that he was living in, we found another place in Chapel Hill last time. We just sort of pick a spot that's equal between us. That was the last meet. [00:54:14] MBH: Okay. And are you taking new members? Because I have someone in mind who might love that Grumpy Club. Are you taking new members to that group?Ê [00:54:23] SimonB: Well, the application process is very, very hard. They got to prove that they are very thick-skinned. [00:54:29] MBH: Okay. Well, we can talk about that later. Okay. Here we have another comment from one of our participants, "My husband also had a right hemisphere stroke. And I am an SLP. He had to stop working as an engineer also. We like to play Jeopardy every day."Ê And here is another one, "Would you please tell us some of the strategies, exercises, interventions regarding the neurological vision interventions?" And that person says, "Thank you for sharing your stories."Ê [00:55:01] SimonB: Well, this lady that we were referred to actually by a PT. Our first PT. Because she really helped with Ğ she actually helped with my walking. You cannot underestimate the importance of your site. The damage that's happened from a stroke in my case with the left side particularly. Yeah, peripheral vision and so forth. We were referred to a neurooptometrist. If that's the right term. She was a real doctor with neurological background training. Focusing on the eyes. And she had me doing all sorts of exercises. Singing songs while I was doing all sorts of laser pointer things.Ê [00:55:53] SarahB: Those wheels on that thing.Ê [00:55:55] SimonB: Oh, yeah.Ê [00:55:56] SarahB: So many things. It was a full hour every week.Ê [00:56:00] SimonB: She even developed a pair of glasses I had to wear every so often, which had lights that would flash off at various times in these glasses.Ê [00:56:09] SarahB: She was absolutely amazing. [00:56:10] MBH: It does sound amazing. And compared to your vision and your perception before the stroke, how is it now?Ê [00:56:18] SimonB: I would say it's one of the few things that is back to Ğ there am I saying, you'll never get all everything back. Well, that's probably one thing that I would say. I was already wearing glasses for reading beforehand. It was becoming Ğ and I noticed when I was hitting the golf ball into the trees, I couldn't find it as often as I'd like to think I could.Ê I think the writing was on the wall in terms of my general eyesight. But right now with Ğ I mean, I've been wearing prism glasses obviously for a fairly long time. But the last visit that I had with this lady, actually she said, "I'm going to tone down your prism. You've made a remarkable improvement. Your vision is significantly improved." It's working very, very well. Long answer to your question again. [00:57:12] MBH: No. That's great. How long was the actual therapy when you were visiting her for the hour-long therapy appointment?Ê [00:57:20] SarahB: I think it was 12 weeks. [00:57:23] MBH:12 weeks. Okay. [00:57:24] SarahB: 12 weeks of every week. And then after that, it was like every 3 months maybe just for another checkup. She'd do all these tests and things. [00:57:32] SimonB: And she gave you lots of homework, too. I mean, I had lots of homework. I had little signs all around the kitchen.Ê [00:57:38] SarahB: We had them all over the house. All these little things that she gave us to stop him always looking to the wrong side. Because you're always looking right. It was told to make his vision change. It was amazing. [00:57:51] MBH: That is amazing. So inspirational. I'm so pleased to hear that you have had such great medical care not only with your SLPs but your OTs, PTs, doctors, and optometrists. And then, also that you have been involved in so many groups. Can you tell us a little bit Ğ we have about three more minutes. Can you tell us a little bit about why you choose to go to groups?Ê [00:58:20] SimonB: Well, I would say that probably other stroke survivors are my biggest inspiration. And I talk again in the book, which you need to get, by the way, particularly Ğ again, I've been part of the Triangle Aphasia Project, which is a charity here that has at least 20 groups in that organization, which are made up predominantly of left-brain injuries. People with aphasia particularly. And I find those people give me even more inspiration. Because I think at least I've had my communication.Ê And this is the argument. One of the points that Ğ did you know the lady that Ğ this professor lady that I've been associated with at Duke, Jamila Minga, has done this documentary that's coming out onto PBS at some point. Which is about right hemisphere disorder and how it's a hidden diagnosis. Because she says quite clearly, particularly in the movie, that, with the left-brain injury, it's so averted. It's so clear that this person has got a communication disorder. Right brain tends to go unnoticed. It tends to be hidden. Hence, the term hidden diagnosis.Ê And yet, as this documentary shows, relationships, unless you're particularly stupid or Ğ and your ability to communicate with people is just more than just being able to speak. It's being able to interpret what things are said. As well as how to say what you're trying to say. When to say what you're trying to say.Ê Yes. The group, the aphasia thing, the aphasia groups particularly for me are the ones I love. I like be around those guys more because they have a much Ğ I feel they have a much more of an uphill battle. And when I see them struggling away and Ğ but getting it out. And seeing the progress that they've made, I think, "Wow. That's fantastic."Ê [01:00:40] MBH: Yeah. That is very inspirational.Ê [01:00:42] SimonB: It makes me very happy. [01:00:44] MBH: It seems like some people with right hemisphere strokes, they might not Ğ because their speech is intact, they might not get or seek a full range of SLP services like you that I think that does happen from time to time. Good that you have. And I'm being told we need to wrap up. We could talk forever. But, again, I so appreciate both of you coming on and sharing your stories. We really, really, really appreciate it.Ê I have another Ğ something in the chat that says, "To clarify. Triangle Aphasia Group." And Jamila Minga is the person who has created that documentary. I think with someone else. [01:01:30] SimonB: Yeah. She's the one that's been working most on the right hemisphere. This RHD hidden diagnosis. And has been doing a lot of research on it. [01:01:39] MBH: All right. For anyone else who wants to learn more, she would be a great resource. [01:01:43] SimonB: Jamilaminga@dukeuniversity and Triangle Aphasia Project. [01:01:49] SarahB: TAP. [01:01:50] MBH: TAP. Okay. Great. Wonderful. All right. Well, again, thank you so much. And as a reminder, if you are joining us for the live course and your state license requires live CUEs, be sure to complete all course modules including the one that says complete course before the end of the day today on your SpeechTherapyPD.com account. Wonderful. We really appreciate it. And have a wonderful rest of your day today. [01:02:17] SarahB: Thank you so much. You, too.Ê [01:02:17] SimonB: Bye-bye.Ê [OUTRO] [01:02:19] MBH: Thanks for joining us here at Keys for SLPs, providing keys to open new doors to better serve our clients throughout the lifespan. Remember to go to SpeechTherapyPD.com to learn more about earning ASHA CEUs for this episode and more.Ê Ê[END] KFSP 78 Transcript ©Ê2024 Keys for SLPs 1