58-year-old Brian LeBlanc is an international Alzheimer’s advocate who speaks at conferences, workshops, symposiums, and even on dementia-friendly cruises. He’s got a sense of humor that will knock you over. But don’t call him an Alzheimer’s patient. And don’t call him an Alzheimer’s sufferer. Brian explains why, and he tells us how he’s living well with Alzheimer’s disease in this lively conversation.
JANA PANARITES (HOST): In the United States, the most feared diagnosis is not cancer or stroke or even heart disease. The most feared diagnosis in America is Alzheimer’s disease. But is that fear justified? While it’s factually true that as the disease progresses, life for the person with Alzheimer’s can become more frustrating and even harsh, especially in the end. But a growing number of people are working to promote a more positive, adaptive approach to Alzheimer’s and related dementia. One of them is 58-year-old Brian LeBlanc, who was diagnosed with Alzheimer’s disease four years ago. Brian is using his past experience as a public relations director to share his message of living well with Alzheimer’s. Or as Brian says, I have Alzheimer’s — but it doesn’t have me. Brian LeBlanc is an international Alzheimer’s advocate who speaks at conferences, workshops, symposiums, and even on dementia-friendly cruises and he joins us today from Pensacola, Florida. Brian, welcome to The Agewyz Podcast.
BRIAN: Thank you for having me. I appreciate it.
JANA: Did you grow up in Florida? I feel like I read somewhere that you lived in Virginia at one point as well. Where did you grow up?
BRIAN: No, I actually grew up in New Orleans.
JANA: Oh, New Orleans, okay. NOLA.
BRIAN: Yeah. Yeah. I lived there until, I think I was 30, and then I moved here to Pensacola, in 1990. I moved here to get married and have been here ever since.
JANA: Okay, so what did you know about Alzheimer’s disease before you were diagnosed?
BRIAN: Well, I’ll say this: I’ll say a lot, but not much. I knew it because I’m fourth generation of having this disease. My great grandmother had it and she passed away in the 1800s, so I didn’t know her. My maternal grandfather, he had Alzheimer’s and he died in 1985. My mother had Alzheimer’s and she passed away with Alzheimer’s in 2015. And that was just three months after I was diagnosed in 2014 with Alzheimer’s. So I saw what it did to my grandfather and my mother. Outside of those two, I did not know of anyone who had that disease. I didn’t see anything other than what I saw on videos or TV or anything. It wasn’t until I was diagnosed that I saw the multitude of people that also had the disease.
JANA: That’s so interesting. So what was your experience of it with your mother?
BRIAN: I saw how it was affecting her. I saw that portion of it. What I didn’t know was, I didn’t know others that had Alzheimer’s. So I had nothing to really compare it, to what she was going through and what others were going through. The only thing that I knew, that, you know, she was little by little slipping away and her speech was getting progressively worse to the point where she wasn’t able to verbalize anything anymore. But she could still use her singing voice to hum songs or to– she couldn’t say the words but she could La-La-La… and in perfect pitch I must say, because she sang in church for over 40 years, and she had a beautiful, beautiful singing voice.
JANA: So what was your experience of being diagnosed like? And what was your reaction?
BRIAN: I’m not sure how many other people you have spoken to about the diagnosis process. What I will say is, there are some very phenomenal neurologists, neuropsychologists, neuropsychiatrists, that will give you an in-depth personalized diagnosis and explain everything and humanize it. They are in the minority. My diagnosis was very sterile.
BRIAN: Yeah, I had an MRI. I did not have the PET scan because PET scans are not covered under insurance. So I had the MRIs, the imaging of my brain. He could see some things but not a whole bunch. But from the blood tests, from the genetic testing and so forth, I had two copies of ApoE4, what’s called an allele– it’s a protein, and everybody is born with different numerical values. It’s a two, a three and a four. Now, based upon that number, it basically tells you your chances of developing Alzheimer’s. So you can get a two from your mother and a two from your father, or a two, one a three, or you know, any, any variation. Well, four being the highest gives you over 12 times the chances of developing Alzheimer’s. Well, I had the four from my mother and I had a four from my father.
BRIAN: So that put me, you know, at the 12 times numerical value of developing Alzheimer’s. I also have Type 2 diabetes and I also have heart disease. I’ve had three heart attacks and I have two stents. So the genetic factor, the ApoE, the diabetes and the heart disease– there were a lot of things that were against me. And I failed horribly, all the testing and so forth. But you know, when I got my diagnosis, the doctor walked into the room and sat down in the chair, and never looked at my wife and I. We just– we sat there, and he just looked down at his notes. And he started going through and telling me all these medical terms, which I understand, you know, he is a doctor and so he wanted to give the medical part of it, but I stopped him and I said, look, I said, I appreciate what you’re saying, but number one, I have no idea what you’re saying.
BRIAN: I said, what I’m wondering is do I have Alzheimer’s? And he paused and he says, yes, you have what we call early onset Alzheimer’s, which is for people that are under the age of 65. Now, he went on to say other things, but to be honest with you, I did not hear anything because I just lost it. The image of my mother and the image of my grandfather just kept running through my mind. And I thought, well, I know my future. I see what my future is going to be and there’s nothing I can do about it. Now the doctor stayed in there for about, I don’t know, a minute more? Because as I was crying, he just stopped talking. And then he just got up and he said, I’ll be right back. And he walked out the door. And about 10 minutes later, I can’t tell you who it was, whether it was a nurse, a nurse practitioner, or a physician assistant, somebody walked back in the room with prescriptions for Namenda and Aricept and said, take these medicines. The doctor wants you to come back in six weeks. And then they walked out the door. So it was basically in a nutshell, hey, you have Alzheimer’s disease. Good luck with that. And gone.
JANA: Wow. Brian, what was the image in your head that you had of your mother that you referred to earlier? What was that image?
BRIAN: Well, my grandfather, I saw him, you know, progress all the way through. My mom was just in a state where she was not able to understand things. At this point my father had already passed away, and ironically he had vascular dementia. So he passed away in 2010, so my mother was on her own, but she was in a facility and it was just to see her sitting in a wheelchair because she wasn’t able to walk without falling anymore, and would just look at you and– she would still smile sometimes, but she could not relate. And you could see just that faraway look in her eyes, and it was just heart wrenching. And you look at that and think, oh my God, that’s going to be me. And trust me, you don’t want to see that.
JANA: Oh, I’m so sorry that you had that experience. So your message is about living well with Alzheimer’s. How did you get from that diagnosis and your reaction to it, to where you are now, which sounds like a really healthy outlook. Not to in any way to sugarcoat it. [both laugh] We don’t sugarcoat on this show.
BRIAN: No, no. No, I don’t sugarcoat anything. After my diagnosis, it was maybe like three days, I didn’t move from my bed. Um, I kind of stayed curled up in a ball, not really responding, not really doing too much of anything. On the third day I had sort of a premonition. And I use this scenario in my presentation. I was in a boxing ring, and there was this huge, huge guy that I was fighting. And the bell rang, we came out and the guy just cold cocked me right in the chin and knocked me out. Fell to the mat. I don’t know if it was a dream, if I was sleeping or if I was daydreaming. I have no idea. I just remember getting knocked out, and then hearing the referee starting to count me down. And something– I don’t know where the voice came from, but it kept on saying, get up.
BRIAN: You’ve got to get up. If it goes to one, you’re out. You’re gone. And that scared the hell out of me. I kept on hearing this over and over again as the referee was counting down. So once he got to two, I knew that once he got to one, that was going to be it. And so in my dream or whatever it was, I sat up in the bed and when I opened my eyes, I was physically sitting up in the bed, and I just had this revelation that, you know, my background is in public relations and all I did was talk. And when my wife got home, I told him, I said, I know that I have to do. And she said, what? I said, I got to talk about this. And she looked at me and she said, just remember, once she put it out there, you can’t take it back.
BRIAN: And those words, although you know, I knew what she was saying, because I knew– well, I didn’t know. I thought I knew. But I had no idea the stigmatization that comes along with that diagnosis. Huge. I mean, people that talk to you one day– they’re your best friends, they joke, they laugh, they want to have drinks, they wanted him lunch, they want to do all this stuff. The next day, you have Alzheimer’s. Well, guess what happens? These people don’t talk to you anymore. You get no lunch invitations, you get no, let’s go out and have a drink. But when you call, the calls go unanswered the majority of the time. So began the, you can’t take it back.
JANA: Yeah. And that was a really courageous choice that you made.
BRIAN: Well, look at it this way. There are millions of people that are living just in the United States that have been diagnosed with Alzheimer’s. There are hundreds of thousands of people living just here in the United States that have been diagnosed with early onset. But there are more — many more that have not been diagnosed, or have been diagnosed, but don’t make people aware of their diagnosis because of the stigmatization. So there are people walking around that have this, but they’re scared to go to the doctor because they don’t want to put a name to it. So the facts and figures are based on just the people that have been diagnosed.
JANA: Good point. Can you give us an example of a reaction that you’ve gotten in a social situation?
BRIAN: Oh yeah. I’ll tell you two. The first one was when we were somewhere, I can’t remember, I think it was in the mall or something. And we were — there was some friends of ours that saw us and you know, we said hey. And they came walking over saying hey, how y’all doing and blah blah blah. And then all of a sudden one of them kind of leaned in towards my wife and said, so, uh… how– how’s he doing? And me being, me being who I am, I just leaned back into them and said, I’m doing okay. And I said, and I can hear you.
JANA: Oh, God. [both laugh]
BRIAN: And I think just because you have Alzheimer’s, it means that you can no longer understand, nor can you reply to any questions, which is why they leaned in, towards my wife. So I’ve found that kind of funny. But then the second one is, I went to — and this is not a joke — I went to a nut store locally here in Pensacola and um, I was looking for these little sesame sticks that I really loved, and I couldn’t find them. And when I can’t find something, I get frustrated, I get very anxious. So I walked up to the person that was in the store, I asked her to help me, I started fumbling with my words and I couldn’t get it out. I took a deep breath and I said, I’m sorry. I said, look, I said I have Alzheimer’s. I said, I get very anxious when I’m not able to do normal things. And she goes, oh, that’s okay honey. She goes, I get Alzheimer’s when I drink. And so… I started, started laughing, you know, because she was trying to make light of the situation and so forth.
BRIAN: So we finally found the product that we needed, went up to the cash register and she was the one that was going to check me out. Well, I just felt this pull. And I said, I gotta talk to her. And so I said, listen, I don’t mean to hurt your feelings, but when you said that you get Alzheimer’s when you drink, I said, I understood that. I said, I’m a funny person. I understand. I like humor. I love laughing. I said, but if you say that to the wrong person, you’re going to really, really insult somebody. Or you may insult their care partner, their spouse, their child. I’m not telling you not to be funny, but just be aware of what you’re being funny about. So she started asking me questions about Alzheimer’s. And so I started telling her everything that I’ve been through and what I do and so forth.
BRIAN: Well, out the corner of my eye, I noticed motion. So I turned around — there was like 10 people that formed like a semicircle around me, in back of me listening to what I was saying. And I said, I’m, I’m so sorry. I said I didn’t mean to hold y’all up. And one of them said, oh no, she said, you’re sharing all this information and I know that I have someone in my family that has this and what you’re saying, I had no idea. And other people started to chime in. And so I found it rather ironic that here I was giving a mini-education and awareness forum in a nut store. [both laugh]
JANA: Yeah. But what a great moment. I mean, what a wonderful opportunity to teach people things they don’t know about Alzheimer’s. And good for you for seizing that moment.
BRIAN: Well I didn’t know how to do anything else. I didn’t want her saying that same thing to somebody else and having their feelings hurt. I understood it, because it was humor. But like I said, if you say that to the wrong person, it’s not good.
JANA: So how does Alzheimer’s feel to you from the inside? I mean, preach on it. Tell us. [both laugh]
BRIAN: Brothers and sisters, let me… My mother used to tell me that– cause I got in trouble, so much trouble in school, talking– and she said, you know, you’ve been talking since you came out the womb. But one of the things that I talk about a lot is my fog. And that’s what I call in the brain– if you ever look up fog in the dictionary… and I had no idea. Every time I write a new blog post, I’ll look up definitions and put the definitions in my posts because I want to make sure that I’m talking about the right thing. And I want my readers to understand what I’m talking about. Well, when you look up fog, the first definition is it’s a weather condition. But then the second definition that comes up, it says: a way to describe mental cognitivity or uh, what do you call it when you’re mentally incognitive or something along those lines.
BRIAN: I never heard it that way before. I thought I came up with a great term. Little did I know it was already in the dictionary. But it was the only way– it’s the only way I can describe what happens. I had a little bit of it this morning when I woke up. You are not able to form a thought. Nothing really works. Because in your brain you hear the saying that you kind of see with your mind’s eye. Well, your mind’s eye becomes blinded by the fog. And I use the scenario of: you’re driving down a road and it’s a beautiful day, you know, you got your radio playing and it’s great. All of a sudden you round the bend and– boom, you’re in a fog bank. Well, what do you do when you’re driving and you enter a fog bank? What do you do?
JANA: Pull over. You freak out.
BRIAN: Okay. Okay, you can do that. You can pull over, you can freak out, you can slow down, you can do any number of things. Whatever it is that you have been trained or taught how to do. And so you do these things because you know if you proceed any further, it could cause an accident. You could die, you could do anything. So you just sit in it for a little bit until it lifts. Then it lifts and you keep going. Now it’s all great, until you round another bend, and guess what’s around that other bend? Another fog bank. This fog can roll in and out ten times a day, three times a day, some days, not at all. You never know when the fog is going to roll in. So you can’t really prepare for it, because you don’t know when it’s going to strike. You just know that when it comes, you know that your reaction is going to be: slow down. Pull over. Sit in it for a while until it passes. And so I just sit. When I’m starting to come out of it a little bit, I play music, because music is my go-to. It brings me out of so many incognitive moments. Music is very, very powerful therapy.
JANA: Yes, I’ve heard this. Well, music is the last thing to go, right? It’s at the back of the brain.
BRIAN: Hearing. Yes.
JANA: Right. Now your wife… she’s supportive. You guys are still together, I assume? Or is that a wrong assumption?
BRIAN: Um… well, no. [laughs]
JANA: Okay. Back that up.
BRIAN: We separated back in 2017 and we were divorced in 2018. However, she is still very supportive of me. There are care partners, people that can care for individuals, and there are those that can’t or it’s just difficult for them. And I hold no animosity towards her whatsoever. I mean, we’re wonderful friends now. She stops by and has coffee with me two or three times a week. She’ll call and ask me if I need anything from the grocery. It’s wonderful. And when she’s done, she can just go home. And it’s hard because I went from a very vivacious person, I went from a very outgoing person, fun person to a withdrawn person, to an angry person, to someone that she had no idea who I was. I didn’t know who I was. And so it got to the point where we had a discussion and she says, I don’t know if I can do this anymore.
BRIAN: It’s just, it’s making me crazy. So I took the initiative. I said, look, I cannot stay here and put you through what you’re going through. I said, it’s not fair. You didn’t ask for this. It’s not like when you married me, you knew that this was going to happen. So I just– I can’t do this. And so I left the marriage. And a friend of mine lives in Knoxville, Tennessee, and offered me a place to stay. And I can tell you, if you know anyone that has Alzheimer’s and they come to you one day and they say, Hey, I know I have Alzheimer’s but I’m going to move to another city where I’ve never been before in my life and start my whole life over again. And before they say anything any more, just slap them in the face and say, no, you can’t do that!
JANA: Yeah, change of scenery is not good for folks with dementia.
BRIAN: No. It sounded good on paper. So I moved there in November, and I was back here in Pensacola in April.
JANA: Oh, so you made the move and then you came back.
BRIAN: Oh, yeah. It did not work out. And I understood that. My anger started to play a part in it, which I wasn’t proud of. And I still do go through my anger, but I tend to do it in private because it’s always better to aim the anger towards yourself and sit in it. It’s kind of like the fog. You sit in it till it passes. But when you start directing your anger towards someone else, that’s not good. Because it’s not their fault. They did nothing to you, to make you angry. You made yourself angry, or you have allowed Alzheimer’s to make you angry.
JANA: Did the Namenda or the Aricept have any positive effect on you? Because my mom has Alzheimer’s and those drugs, you know, they just push them on you. And when you said that the doctor said, come back in six weeks, right there alarm bells went off in my head. Because six weeks is nothing when you start taking medication. So I was just wondering if you’ve taken any medications that have helped you at all.
BRIAN: I will say the Aricept and Namenda– I had horrible migraines, nausea and things of that nature. I got off of it after about three or four weeks, I think. I called the office and I told them what was happening and they said, all right, discontinue it. I haven’t been on anything else since then. Now that was four years ago. I am looking into the Exelon patch, which a lot of people have used and it has had a lot of good results for folks. But the one thing that has had a positive effect on people is marijuana. When I was in Colorado several months ago, I had an edible. It was a delicious chocolate candy. But after you eat it, it takes about 45 minutes to an hour, and I felt it coming on, and all my anxiousness was just gone. And I actually had clarity. I mean I felt like I had not felt in years. Now that’s me. You know, I have other friends of mine that say they’ve tried it and have really had no good reactions to it. I have no idea. It could be because I still had some in my system from my teenage and early twenties.
JANA: No, I think your slate was probably clean by 58.
BRIAN: Yeah. [laughs]
JANA: So have you continued to use that?
BRIAN: Well, no. It’s just starting to catch some tread here in Florida.
JANA: Right. But you can get medical marijuana.
BRIAN: Right. But to get that, you got to pay like two or three hundred dollars for the testing and all this stuff. And when you’re on Social Security Disability, you don’t have much money left at the end of the month. So that kind of makes it difficult. So I’m trying to find ways to do that. I’m sure I could find someone that would just give me some, but I don’t want to do that. I want to do things the right way. But the thing that gets me is this: you can get a pot and you can grow an apple tree, or you can grow a lemon tree or a pear tree or anything. And then when it ripens, you can go outside and you can pick it off the bush and take it inside and eat it, because it’s nature. It’s a natural plant that grows of the earth and has been here for billions of years. Well, so has marijuana. It’s been around for millions of years, and it’s a natural medicinal plant. Yet it’s deemed illegal and against the law in many states still. I don’t understand how something of nature can be like that. But I know there’s rules and regulations. That’s just my thought on things. The things that I think about.
JANA: Mm-hmm. Well, you’re preaching to the choir here.
BRIAN: Yeah. If it’s something that helps, why not just say, okay, go ahead. Knock yourself out.
JANA: Yeah. I think Florida governor, Ron DeSantis just recently signed off on approving medical marijuana. Which really surprised me, but good on him.
BRIAN: Yeah. Well think about it: the state of Florida has one of the highest populations of people that are living with a dementia-related illness. So it makes sense. I mean, look at the senior community that we have here. I mean, you know, down in South Florida– but now it’s not just south Florida, it’s all Florida. People come here to retire, and as they age they started having some symptoms of dementia.
JANA: Yup. It’s so true. Brian, in one of your blog posts you wrote that it bugs you when people with Alzheimer’s are referred to, as they often are, as an Alzheimer’s patient or a sufferer. What is it about these words that bother you? And how do you want to be referred to?
BRIAN: Because I’m not a patient– I’m not a patient. I’m sorry– you struck a nerve.
JANA: Yeah, well go for it. I mean, this was a very powerful blog post, so I’d love for you to comment on it.
BRIAN: I am a patient only to my doctor. That is the only person that I am a patient to. I am not a patient to you, I’m not a patient to my brothers and my sister, I’m not a patient to anyone but my doctor. So no one has the right to call me a patient, except for my doctor. And I can say yes, I’m a patient of Dr. so and so because I am. But I’m not a patient to Bobby or Sue or anybody else. So that irks me because of the fact that that puts me in a different category. That takes my individuality away. I go from being a person or an individual to a patient. And I am so much more than a patient. And this goes for anybody that has any type of disease. They should never be referred to as a patient because it diminishes their individuality.
BRIAN: And then “sufferer.” I don’t look at it as suffering. I don’t suffer. I struggle. And I struggle every day. There’s always one part of my day where the wave of Alzheimer’s swarms over me and makes me just kind of go blank. Picture, you are doing a task and you are so concentrated on fulfilling that task. You know you have all your thoughts written on the blackboard and all of a sudden somebody comes along with a rag and just wipes it clean. And there’s nothingness. That’s what happens in– well that’s what happens in my brain. Nothingness. So I don’t suffer. When I think of suffering, I think of pain. And I’m not really in pain until I lose my balance and fall, cause I fall quite frequently. But that’s when I suffer is when I have pain. But my Alzheimer’s does not cause me pain in and of itself. It causes my body to malfunction, and that’s what causes me pain if– like I said, if I fall or touch something that’s hot and, you know this, that and the other. So that’s why I’m very, as you can see, I’m kind of passionate about that. Because you know, it all falls under the person-centered focus thing.
JANA: Right. Explain that: person-centered focus.
BRIAN: See me, not my disease. I’m still a person. And I don’t care who you are; until you close your eyes and your heart stops beating, you are still a person. And even after you die, you’re still a person. You may not be of this earth, but you still should be referred to as a person. So person-centered focus basically means number one, treat me as a person. It also means include me in decisions. You know, I already have my durable power of attorney. All the legal stuff is done. Everything down to when I die, I’m going to be cremated. I have where I want my ashes to be spread. I don’t want a traditional funeral because I don’t want people crying over me. I’m not going to be laid out in a casket. I want to have a big old party. I want people to come over there. I want music to be playing. I want alcohol. I want to have a big celebration of my life. I want people to talk about how they felt. I want them to talk about memories that they have of me. Maybe good, bad and all the indifferent stuff, you know? It’s all about the celebration. You hear about this stuff: the celebration of life. But there’s always this one part where it gets real, real teary-eyed and so forth. It’s like, I know people get to be sad, but I want it to be a celebration. I have that in that document.
JANA: Wow. You specified it.
BRIAN: Yeah. Who knows you better than yourself?
JANA: So where do you find meaning in your life? And what do you do for fun?
BRIAN: Well, I’m still a technical guy. I still like to find out what’s going on in the world of technology, and if there’s anything that I can utilize that can be to my benefit, I do so. I do tell people that I’m divorced now, but I do date. And I have two girlfriends, one is named Alexa and the other is Siri.
JANA: [laughs] And they’re very cooperative.
BRIAN: They are! You know? I was giving a presentation– I always use that in the presentation– and when I tell people, I say yeah, I have two girlfriends and everybody’s– you know, I can see their facial expressions, until I tell them their names, and then they just crack up, just like you did. If you can’t laugh at life, you’re missing out on things. So yeah, I use a lot of humor because it helps me get through a day. But using these two things, the reason I use them is number one, to take my medications. You know, I have to have a reminder every day in the morning and in the evening to take my medicine.
JANA: So you use Alexa?
BRIAN: Right. And I don’t say her name again because when I say her name out loud, she’s right next to me and she’ll say, I’m sorry, I don’t understand. So anyway… I spend too much time talking to her, but she never tells me no! I also need reminders to eat, because due to my Alzheimer’s I have lost a significant part of my sense of smell and my taste. And over the past year or so I’ve lost an immense amount of weight. My average weight used to be around maybe 210, 220. And now I weigh about 153 soaking wet.
JANA: Oh, gosh. How tall are you?
BRIAN: Five nine and a half. Well, I used to be. I used to be five nine and a half. I think I’m only five, nine now because I had neck surgery and back surgery where they had to fuse my discs, and I think I lost that half an inch with that surgery. So let’s just call it five nine. But yeah, I went from a size 36 sometimes 38 in clothes, and my waist size, to a 30 or a 32.
JANA: Wow, that’s a big drop. How do you feel?
BRIAN: I feel wonderful. At 58 years old, I can wear skinny jeans. [both laugh]
JANA: Right on. And Alexa will order them for you.
BRIAN: Yes she can. Yes she can.
JANA: So what’s some of the feedback like, that you’ve gotten from where you’ve spoken?
BRIAN: It’s very humbling. It’s very humbling. Last week I was in Bar Harbor, Maine where I spoke at a senior care community. And I don’t like calling them facility, because that’s medical. So I call them what it is: it’s a community. And it was absolutely beautiful. They still have like five and six foot snow drifts and, you know, being in Pensacola, you know, all we see is sand.
JANA: Right. Right. Flat earth.
BRIAN: It might snow here, you know, once in a blue moon and it melts within about 10 minutes. But the reactions that I get — and I just spoke yesterday at a symposium here in Pensacola — the response that I always get is overwhelming. Because I have people coming up to me and just thanking me. Some of them are in tears. Because they say, number one, thank you for explaining these things that you do in your presentation; I better understand now what my mother, father, grandmother, grandfather, whoever, spouse was trying to maybe explain to me, but they couldn’t find the words. You have filled in the blanks. You put these things into words. And then I have others that say, you know, thank you for letting me know how you feel. Because especially when I explain the fog, they say, now it all makes sense. Now when I see them go through that, I’m going to understand exactly what they’re going through. And they said, you know, most of the time we hear from the medical world. And nothing, nothing against that because of the fact that getting the medical information is very important for those that want to understand it. And I have a very good friend of mine, Dr. Rodney Guttmann, who is a huge, huge dementia advocate. He teaches at the University of West Florida here in Pensacola. And then there’s a neurologist friend of mine, Dr. Daniel Potts in Tuscaloosa, Alabama. He’s the neurologist at the VA in Tuscaloosa and he also teaches at the University of Alabama.
BRIAN: They give that medical perspective. But they also understand the humanistic point of view, so they include that but they always tell me, they say, you know, I wish you could have been here with me to explain what you go through because that coupled with the medical part of it really gives everybody clarity. And that’s what I get out of it. You know, I’m just a guy who happens to be living with Alzheimer’s who can still speak on most days. However, one of the things that I just introduced into my PowerPoint is, last year I was on my way to Ontario, Canada to make a presentation and a friend of mine, she was traveling with me, her name was Carmen and she’s a professional photographer. And I told her, I said one time I would like for you to video me when I’m having a bad day. And she goes, I don’t know if I can do that.
BRIAN: I said, why? She goes, you have no idea how hard it is to see you in that moment. You are so much different than what you are. And I said, I understand that. I said, but if people continue to see me, like I am, like I sound now, very, very cognitively aware, very, very on point as to what I’m doing, they’re not going to understand when I talk about my bad days. I want a visual, so that they can see that. So she did that. And it’s about a four minute video. And it’s to me having a bad day.
JANA: That’s so gutsy of you, that you would make room for that in your presentations.
BRIAN: The thing is, is I didn’t know that I was doing this until about the second or third time that I showed it. I can’t watch it. I kind of stand off to the side and just, I don’t know what I do, but I can’t, I can’t look at it because it’s, um, I don’t recognize him. I’ve been told how I react, how I sound, how I look. To me, that’s somebody else up there. If I myself… [pauses] I’m sorry. Um… it’s hard. [pauses] If I — if I look up there and, and see that person, I’m scared that I’m going to turn into them, that I’m going to turn into that person immediately. I know in my part of my brain that makes sense, I know that’s not gonna happen, but I just, I– I– I can’t do that. But since I have put that into the presentation, so many people have thanked me for doing that. For showing that side. Because it shows both sides. And usually when I’m having a bad day, nobody sees me. Because I don’t go outside. I stay inside. If I talk to somebody on the phone, they know immediately that I’m having a bad day because I can’t really talk. I’ll try, but it doesn’t come out very well. And it makes that– makes that moisture form in my eyes that I hate. [laughs]
JANA: It’s real. It’s life.
BRIAN: It is.
JANA: Brian, I’ve made you work too hard. I feel like you– [both laugh]
BRIAN: –no you didn’t. You know because I’ve chosen this life. I put it out there and I can’t take it back. I can’t all of a sudden say, oh, I decided not to do this anymore. You know, because that would be selfish of me to do. But this has now become a mission. It sounds strange to say it, to hear myself say it, but this is what I feel that I’ve been put on this earth to do. Because I do have a voice that I’ve been using all of my life. And like I said, got me in a lot of trouble for using it [laughs]. But now I’m using it for good. I give a voice to the people that are living with this disease that can’t speak anymore. I give a voice to the people who are no longer here. I give a voice to sort of their reality. To things that they went through, to explain to the people that cared and loved them. I give them a voice as to what was going on. And I’ve made that vow, to continue doing it until I myself am going to have to have someone speak for me. But I– that’s why I fight this so, so hard every single day of my life: so that I can continue doing what I do.
JANA: Well, we’re all lucky for it. That’s all I know. Is there anything else that you would like to say before we close? Is there anything you want people to know about your life with Alzheimer’s that they may not know that they should know?
BRIAN: Well, yeah, just because I have Alzheimer’s doesn’t mean that I cease to live. Being that I, you know, I am an advocate and I get to travel, I’ve gone to places that I’ve never been before. I joined up with Kathy Shoaf, with her elite cruises and vacations. She started a dementia-friendly cruise. And so we go all the places that everybody else goes, but on the days that we’re at sea we hold conferences and I give my presentation on my Alzheimer’s. And the next day we’re watching whales in Alaska or looking at the beautiful churches and scenery in Nova Scotia. You know, going all over the place. Places I’ve never been.
JANA: It’s not a bad way to live.
BRIAN: And you said the magic word, is: live. Because you live each and every day that you open your eyes. No matter what condition you’re in, as long as you open your eyes at the beginning of each day, you’re living. And they say that the last thing to go in somebody with Alzheimer’s is the hearing. So they can hear. We can still hear words of, I love you, I want to hug you. I think of you all the time. Let me play your favorite song. Let me tell you a joke. So we are still living. You know Lisa Genova wrote in her book “Still Alice” — and it was in the movie– about living in the moment. And you live each moment, moment to moment because that’s all we have are these little moments at a time. So live those to the fullest. What I do is I have live each moment, moment to moment, because of the fact that’s all we have in life, are these little significant moments that we may remember, or that we don’t remember. But the ones that we do remember bring us such joy. And I take pictures at least once a day of anything that brings me joy so I can look back, cause when you look at a picture it takes you back to that specific moment, that specific place. But when I was first diagnosed and I announced that I handle Alzheimer’s, my friend Guy Keyes, he lives in Oklahoma, I think it’s Oklahoma –sorry, Guy, if I got the state wrong– but I announced it that, you know, that I had Alzheimer’s and this, that and the other. Well, I mean it was just minutes later, he sends me a response. And it was a picture of a t-shirt, and it said roses are red, violets are blue, I have Alzheimer’s, cheese on toast. [both laugh]
BRIAN: What he did in that moment was saying, Brian, I am not going to cut you any slack. I am going to treat you just as I’m treating you now from this point forward. Nothing’s going to change. And that’s all I ask people to do. I have friends that, I may not see them for months at a time, and when they see me, they say, oh, almost forgot — do you have that 20 bucks that I gave you last time? And then I have to stop and think, and they see the look on my face and they say, you fall for that every single time. [both laugh]
BRIAN: Those people are my real friends. Those are the friends that I surround myself with, because they know what goes on with me, but they keep it real. And they keep me laughing. And we cry enough. We need the laughter, because it’s so much better than shedding the tears. One of my favorite quotes, and I can’t remember the name of a person that wrote the quote, so excuse me… but it says, broken crayons can still color a beautiful picture. So even though our brains may not be working just as good as they used to, they can still do magnificent, beautiful things.
JANA: That sounds like a great place to end. We’ve been speaking with international Alzheimer’s advocate Brian LeBlanc, who was diagnosed with Alzheimer’s disease four years ago and is now using his experience to educate people about living well with Alzheimer’s. We’ll have a link on the Agewyz website to Brian’s website ,where you can read some of his wonderful blog posts. Brian, thank you for being on the show and thank you for your honesty and your courage and your mind, which is beautiful. Thank you, Brian.
BRIAN: Well, thank you for having me because giving a voice to me is giving a voice to millions of other people. And I appreciate you allowing me to be here today.