Welcome And Accessibility Introductions

Chantal 0:30

Welcome to the Sunflower Conversations. Your host today is myself, Chantal, and also is Lynn Smith from uh the USA, who heads up the USA operation. So, hello Lynn, how are you? Hello, very good. Thank you. We will be discussing dementia in this episode with Jay Reinstein, who runs the VOA Foundation in America, which supports people living with Alzheimer's, which is a form of dementia. But before we start that, I'm just going to give a quick visual description of myself, then Lynn, if you can do the same, and then you, Jay, um, just for accessibility. So I am a female in my uh midlife. I have got brown skin, I've got long brown curly hair, I'm wearing glasses, and I've got a um scarf around my neck and the I support Sunflower lanyard on. So uh Lynn, can I pass over to you?

Lynn 1:27

Absolutely. Um, my name's Lynn, obviously. I am a white female with dark brown hair, wearing a black jacket, burgundy shirt, and um I I have fringe or bangs, as I was told. Bangs in the US, fringe in the UK. Um so, Jay, how about yourself?

Jay 1:50

I'm Jay Rhinstein. I'm 64-year-old white male. I have no fringe or bangs because I am bald. I'm wearing a black, sort of turtleneck shirt, and I'm wearing the uh lanyard that has Sunflowers on it.

Early Warning Signs At Work

Chantal 2:06

Thank you very much, and thank you so much for your time today. We really appreciate it. So globally, we know that someone develops dementia every three seconds. Uh, the more common types of dementia include Alzheimer's, vascular dementia, dementia, Lewy bodies, frontal temporal dementia, mixed dementia, young onset dementia, but there are also rarer forms of the health condition. So um Jay is obviously from the charity, so he's got uh a depth of knowledge around dementia and about his own uh lived experience. So can we start off, Jay? Can you just please share with us what has your personal journey been?

Jay 2:49

Well, you know, I I um probably at 57 years old, I was still working in local government, and I had a career of almost 30 years, uh serving, I think, the last six as an assistant city manager in Fayetteville, North Carolina. Had a great job, had a family, wife, three kids, five grandkids. Life was going pretty well. And um I started struggling a little bit in the office with uh recall. Um I'd be in meetings and it was just difficult to process information at times. And I really attributed it initially to information overload because it was a big job, a lot of responsibility. And as months went by, I started noticing that things weren't really changing. And I remember um a specific situation when I was with our uh uh city manager and city attorney where they had asked me um about federal funds regarding a recent hurricane, and I was over the federal funding. And it was like I was hearing the question for the first time. I mean, honestly, I was totally confused and wasn't able to answer the questions. Um I was embarrassed, and I just said I would get back to them a little later with the details. And then another situation happened soon thereafter. I always used this example because it just really hit home. Uh, I was working with a community group, and one of the uh folks asked me the departments that I supervised in the organization, and I could not remember the departments. And I remember um in the back, uh our communications uh director said, Oh, Jay's just having a senior moment, kiddingly, and sort of rattled off the departments. It was probably uh a few days later I ended up calling a friend who's a neurologist over at Duke Hospital, and they got me set up with a neuropsychological because I just didn't know what was happening. And we did the neuropsych. Um he noticed a few issues, but I came back, I think it was nine months later, and that's when um he could see that there were some real issues with memory. And uh I ended up getting an MRI, I had a PET scan, and there was um uh amyloid plaque on my brain, and then I got a diagnosis of early onset Alzheimer's. So I was 58 at the time, and um it was a game changer. I mean, my life just changed dramatically after the um um uh uh diagnosis.

Chantal 5:30

So 57 is when you first started noticing the symptoms. Yeah. And you've told us two quite significant things there, but I imagine there was probably a few other things in your day-to-day life, maybe at home where your memory was affected.

Jay 5:46

Yeah, I'm well, one of the things that was sort of interesting in my situation. Um, I lived, my wife lived an hour and a half from me. I had to buy a home in the uh community that I worked in. That was a residency requirement. So I was away from her five days a week and I'd come home on the weekends. Um so my wife didn't notice a lot. She just noticed that I would ask similar, you know, after the fact, it was telling me, yeah, you'd ask the same question a number of times, but she didn't really think much about it. Um and I think it was really myself um struggling. You know, I'd work later hours, actually. You know, I'd be there till like eight o'clock because it was harder for me to um go through some of the uh emails and just really get through the day. And my counterparts would be leaving at like six, I'd be working late. Um, and then I found myself also giving uh my staff more of my work. Uh, you know, I would be, you know, typically a week for me would be having to go before city council during one of our uh agendas, and I would not necessarily be able to talk about one of my issues, so I would give it to one of my uh direct reports. And I was doing that more and more. Um and it was sort of scary and I was embarrassed, quite honestly, because I really didn't know what was happening.

Chantal 7:12

Yeah.

Jay 7:12

It's a lot of confusion. Yeah, it wasn't good, it was not a I was not in a good place, I will tell you.

Chantal 7:18

Lynn will understand the setup of local uh council and government more in America more so than I, but that sounds like a very responsible job.

Jay 7:29

Yeah, it was. It was. You know, it was a it was really a big we had about 2200 employees. I had six departments, and uh I was there for about six years. So for me, uh it was my life, and I don't know if Lynn wants to speak to it, but I can just tell you uh there's a lot of headaches dealing with local politicians. Um they are very needy and they expect you to uh as soon as they call, they want a uh they want a result.

Diagnosis Fear And Leaving Employment

Lynn 7:59

Yeah, you have to be on your game, you know. So I can see how you would be embarrassed if you couldn't remember something that you should know, and you're in the public's eye a lot. So I can understand how that would affect you and how you would kind of start having other people take over because you were kind of embarrassed of what you might forget. Was the diagnosis a relief when you found out?

Jay 8:23

Um, you know, it's funny. I yes and no. I was I think it was more fear. Um, yeah, I was glad that I knew there was a name to it. Um, but I also feared future, you know, what is it gonna mean for my finances? What is it gonna mean for my family? You know, I don't want to be a burden. And then I think a big thing is, you know, what was I gonna do? I mean, I'm still pretty, it's not young, young, but it's relatively young where I had a full life ahead of me. And um, I wasn't sure what the heck I was gonna do. So it it was a lot of fear and sadness and depression and and anxiety and um, you know, just about everything. And I think it was very difficult. It's still difficult for my wife uh to talk about a lot. I know she struggles with having to go to support groups and things of that nature. It's just a real struggle for her. Uh, my daughter has been, it's a little easier for her, and she's been there for me. They've both been there for me, but it's it's a struggle.

Chantal 9:30

I think that's the thing, isn't it? When it it doesn't just impact you, it's it's your nucleus family and the people around you because your whole life had to change. So you you presumably gave up work at that point, did you, when you got your diagnosis? Or did you keep home for a little while?

Jay 9:45

Or Chantal, it was what was really um helpful is that I had an employer who uh was very understanding, and my boss uh gave me a six-month period to um transition out of the organization. Um it was very helpful for me because I was able to tie up loose ends and also help hire the new um person uh that would take my place. What was difficult, I think, and was sort of interesting, I was then starting to hear the stories from people. I remember my HR director, she had told me uh sometimes I would call her like two or three times in a day about the same issue.

Chantal 10:27

Really?

Jay 10:28

You're telling me now stories after the fact. And I think I don't think people put two and two together, but I was hearing those. Even my boss said, You weren't the same for the last while, Jay. You know, I could tell there were issues, but we just sort of, you know, it wasn't a big deal, but people noticed there were some changes. And um uh, but I felt like I felt like I was embraced by my organization, including the um elected officials, and that made me feel pretty good. Now there were people in the organization, and it would get back to me that and that was just unfortunate. I think people just needed to be educated about the disease, but there were people that were saying, Well, why is he still here? How is he making decisions? Um, you know, and it was very hurtful, but I didn't know about the disease. I didn't realize that a diagnosis isn't a death sentence. Yeah, you know, and I I I have done so many things advocating over the last several years, um, and it's given me purpose. I wouldn't have thought that when I received the diagnosis, but I have really uh um made the best of a uh made the best of a bad uh bad news.

Chantal 11:43

In terms of where you are now with your diagnosis, which is what about five years on? Yeah, and you're before we before we started recording, you were talking about projects that you're working on and traveling, etc. Do you think that the things that you're doing are like passion projects and you're not under a kind of like a responsibility, a burden to deliver for the you know, for the state or whatever? Do you do you has that affected the severity or the frequency of your symptoms or not?

Finding Purpose Through Advocacy

Jay 12:17

That's a really great question. That's never asked been asked quite like that, and and that's um, I think absolutely um, you know, I went through a period, a sort of a really dark period for me. I'm still, you know, I still see a therapist every two weeks. Uh I have an incredible network of friends. Um, but finding that purpose and finding those projects, and I'm on, I think, four different boards right now. I feel like I'm I feel like I have purpose and what I'm doing is making a difference, and it's giving people hope. And and more importantly, um, I feel it's giving me hope because I I wake up every day and not every day is great. Sometimes I have uh uh um difficulty in the mornings, um, but I feel like there are things that I can still do. And honestly, you know, when I when I get together with friends, we don't talk about my disease that much. You know, I have a lot of other health issues. So whether it's uh lupus, I just got diagnosed again with um, oh God, it's with my eye. Uh they have to inject, I have to get injections in my eye now, and I can't remember what it's called. Anyway, it's pretty serious. The point is I could focus on all my medical stuff and go crazy. Uh, but I also have sort of a glass half full kind of outlook. And yeah, while there's serious things going on in my world, I have so many great things going on. The travel, the family, friends. I go to lunch. I don't drive anymore, but I have friends picking me up for lunch uh just about every day. And so I get to see people and I'm living life.

Chantal 14:06

Kind of like early retirement doing the things that you actually enjoy.

Jay 14:10

Yeah, and and things that I wasn't, you know, I was a workaholic, Chantal. I mean, I worked, work, work. Um, I love my job, I love being a public servant. So for me, I was in heaven, really. I mean, it was just the perfect match for me. After grad school, everything just fell in place. Um, so I really worried um about not working anymore. But you know, I got a pension and then I got Social Security disability. So financially I was able to survive. And that's a good thing. So that took a lot of pressure off of my family, but it it it could be a lot worse. It could be a lot worse.

Chantal 14:49

I mean, I don't know if you know what the prevalence is of early onset dementia. Is that increasing now, uh, early onset? Because it's something we always would associate with, you know, old the much older generation. Yeah.

Jay 15:04

Yeah. They say now again, the statistics aren't that accurate. I I think it's between two and three hundred thousand early uh onset in the U.S. I think it's a lot more, but with early detection and this new blood test that's uh now been approved by the FDA in the U.S., early detection is going to get those numbers. I think those numbers are going to go way up. And through my journey, I mean, I've met people in their early 40s that have been diagnosed with Alzheimer's. And again, like you said, I always thought it was, you know, an old person's disease. And the expectation is, you know, someone sitting in a wheelchair drooling, uh, sort of at the end of the uh, but but there's so many people that are still living life with the disease, and that's what I want to focus on. Uh, it's reducing stigma. Yeah, you know. Uh, look at me, people will say, Oh, you don't, you know, it's the old thing, you don't look like you have Alzheimer's. And I always say, Well, what does that look like?

Chantal 16:01

Yeah.

Jay 16:02

So, you know, that's sort of where where I am.

Chantal 16:09

You are listening to the Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes. I really like your philosophy. It's very positive, outlook, reducing stigma. Um, one of the things that we do want to cover in the podcast though is what the barriers are, so that anybody listening can be a bit more um empathetic uh and understanding. So I'm not wanting to sort of go down on a doom and gloom road, but it would be very useful to find out what are some of those. So obviously, there's a big shift in terms of like working. Um, you mentioned that mornings can be difficult. So just in general, and uh and also some of the comments that you got from your colleagues, you know, that stigma, uh, which really hurtful comments. Are there any other ch challenges and adjustments that you've had to navigate? Like you were talking about your morning routine?

Jay 17:08

Sure, absolutely. Well, one of the big thing uh was um sort of my loss of independence with the inability to drive. So not being able to drive was a big one, and uh I wasn't sure how I was gonna handle it, but you know, I fortunately have that uh group of uh a lot of good friends that have helped me in that area. I think um uh quite honestly, you know, every you had mentioned early on the different types of dementia, you know, whether it's frontal temporal or Alzheimer's, I think everyone uh has different barriers. I think for me, it was um uh what was really important is getting into a support group who really can you don't feel all alone uh and you can talk about things that are affecting you. Like for me, I'm not ashamed about uh my anxiety issues and and depression. Um and I take uh anxiety medication, uh I I see a therapist every two weeks. And and that's I think just part of the journey. I think another thing that I've tried to do um is you know, it's hard for me to read books now. I I I don't retain what I'm reading. So rather than focus and get really frustrated with trying to read, what I do is I'll just look at headlines. I'll go online and I just look at headlines and maybe read the first couple sentences that sort of give me an idea. So I know what's going on in the world. You know, um it's those little things I I use a calendar for everything. So even when I have not an appointment or something I need to remember, I just plug everything into the calendar. And it's just sort of my way to remember sort of my to-dos and appointments and everything uh like that. Because it's it's like I'll be talking to someone and then I remember something. I say, hold on a minute, let me just put this in here, otherwise I'll forget. Um and then I think uh the other thing is too, just sort of a thing that's helped me, you know, I'll be watching a series. I mean, I love some of these new series on Netflix, or uh there's some great things on TV, and I find that if I have to wait a week for the next episode, I don't remember what. So what I try to do is binge watching. It's much easier if I can watch four episodes back to back to back than so just little things like that have helped me out a great deal. And then, you know, like I said, support groups, getting involved, not isolating yourself. Isolation is really bad. And um if the the the the uh uh the more I can use my brain and to stay active, the better I think I am. And I think my neurologists, I have two neurologists in two different hospitals. They both agree it's it's keeping that brain active is has really been helpful for me. I hope that answered some of your questions.

Chantal 20:12

Oh my gosh, no. I that they're they're all I I was just thinking about the advance of technology in terms of when you said you plug it into your calendar. I'm I'm assuming that's on your phone, is it?

Jay 20:24

Yes, yes, right on the iPhone.

Chantal 20:26

So, you know, that's just great because if it was I don't know, 20 years ago and it'd be like getting your diary out and having to write all these little things in there, it would be a lot more challenging, wouldn't it? Oh you can leave a little voice note even if if like you know, if typing becomes difficult or spelling or anything like that, you can leave notes in the form of a voice note or you can annotate them into your your calendar or your to-do and and Netflix as well. I mean, in America, we've always had access to about a billion channels, where in the UK might have been a ball more more recent in the last 20 years for us here. It used to be when I was little, girl, it was three channels.

Jay 21:08

Me too.

Chantal 21:09

Okay, so um, but yes, that adva at the advance of like it binge watching and being able to do devour uh a season or whatever, which means that you are able to be included, and then if your friends are watching those programs, you can enjoy the conversation, and it's a uh in a turn that also reduces the isolation because there's things to participate in conversation and current affairs.

Jay 21:39

I mean, you don't want to feel different and having to uh ex, you know, I don't want a lot of accommodations. And you said something that really has helped me is the voice. I don't my typing is really bad. So everything I do from my emails to my calendar, everything, and then I have to check because it sometimes will, you know, uh autocorrect and it's not correct. But but the point is that has helped just the voice uh and And scheduling things and doing really everything has been a huge help. Brilliant.

Voices Of Alzheimer’s And Medicare Reform

Lynn 22:15

Jay, when I met you through Voice of Alzheimer's, you also have Jim Taylor that works with you. Yes. So is he one of the good friends? How did that all come about? And tell us a little bit more about Voices of Alzheimer's because Jim is the president.

Jay 22:32

I am one of the officers. So I happen to be in Denver, Colorado, and I met Jim for the first time. I think it was five years ago. It was a AAIC conference. It was the medical folks from all over the world were coming in to Denver to talk about new Alzheimer's research. And Jim, I think we were on one call one time before, but anyway, we started talking and he had this vision for an organization that was run by people with uh early onset Alzheimer's or Alzheimer's in general. Um and he sort of became this visionary, and I was there in the very early stages, and we created uh we have the Voices of Alzheimer's Foundation. Um we have two parts. One part can do our lobbying with Congress, uh, and then the other part is sort of the fundraising piece. We have different programming, we have podcasts to inform folks about new uh treatments. This one legislative item is really big, and I just mentioned that. Um this is something VOA is really pushing is to get people with an early diagnosis before the age of 65 to receive their Social Security disability benefits, but most importantly, Medicare insurance immediately instead of a two-year wait. Because honestly, there's so many folks that are diagnosed with this disease, and then they're out of work, and then they, you know, the money and the insurance goes away. So we we are now uh working with a lobbyist. Uh we have, I think, two co-sponsors now for a bill, and we're hoping we can gain some traction with that. Um, we're also working with general practitioners and neurologists to introduce them and make sure that folks are aware of the different treatments because what's very interesting, a lot of general practitioners don't know a lot about Alzheimer's. So we're trying to do these sessions where it's a lot of information sharing. We just did a thing with the Sunflower program, so which is very exciting. We had a group of our champions, those are people who are members of our organization. We did a letter writing campaign and we sent letters to all of the airlines, and we said, hey, uh, we wanted to introduce the Sunflower program because it really can benefit people with hidden disabilities. And we started gaining some traction. I know Lynn was extremely helpful with this, but those are the kind of things we do. It's it's just really getting out there and trying to uh change and even reduce stigma regarding this disease. I don't think I explained it maybe as well as I could have, but it's really a great organization. We do get, I do have to say, we get a lot of money from uh the uh from Big Pharma. And we just we just completed a video um uh that will be going on uh different ads around the country about uh Alzheimer's disease. And you know, we're doing a lot of things.

Chantal 25:54

We're so busy.

Jay 25:56

It is, it's really a great organization, and uh we have uh six members now on our board that are living with the disease, and then we have six other members that are very successful business people around the country that had helped us initially with sort of our initial uh funding, and now we're we're doing very well with our uh funding.

Lynn 26:18

I know um VOA has been great um in partnering with us as a Sunflower organization, and I love your letter writing campaigns, especially we kind of agree who to target or who to actually send the letters to. And uh, you know, we did have United Airlines come on as our first airline partner, and you guys have been wonderful sending lots of letters to them and giving me feedback every time you go to an airport. And a lot of times I'll get pictures from Jay at the airport, which is uh great. It's it's nice to see and what's working well and what his experiences have been.

Jay 26:58

I had a can I share a really interesting experience just uh two weeks ago regarding my uh um I was at Raleigh Durham Airport and heading to Boston, I had a meeting with uh uh pharmaceutical company that invited me for a couple days. So I went with a friend of mine uh because I didn't I don't like traveling myself. So my friend and I are going through security, he gets through before me, and I get stopped. They say that my ticket did not match my passport, they would not let me go through, and I'm like in a panic because he's already through. He should have waited for me, but that's another story. And they said, We're gonna have to, you know, figure this out. And I said, Well, what are we gonna do? Well, the TSA guy recognized the Sunflower right away, which was really nice. He walked me to my airline back to JetBlue. They got the ticket fixed, he walked me back to security, got me through security, and when it was over, uh, when he got me through, I asked to see his manager because I was so impressed with the great customer service. And both of them were familiar with it. I wrote a letter to TSA talking about my experience, and they responded, not in an automated response, that they were going to share this with his coworkers and everything. And the point was, this lanyard made a difference. And honestly, it has helped me. The first time I heard about it was in the U.S., I read an article and I knew it was more popular in Europe. And I was in Heathrow a couple years ago. That's how I got in touch with Lynn. I was in Heathrow, I asked the person from United, I believe it was United or American. I can't believe I can't remember, but I think it was United, if he had a lanyard. And once I got the lanyard from them, there was a the actual one of the employees was wearing one as well. They took care of everything for me. And you talk about anxiety, Heathrow's a big place, and this really made a difference. So I am sold on it. I wear it all the time to airports, and it it also opens up conversations with people in line because people will often ask, what is that? And I'm proud to tell them, you know, about the programs. It's it's it's been a really good program, and I'm so glad that we connected our voices of Alzheimer's with it. But hopefully, we're gonna connect a lot more people with this program because it really does make a difference.

Chantal 29:33

Absolutely, and you've got this three things that you're living with, and they're all non-visible, you know. Nobody would know that you have lupus or that you have a degenerative eye condition either. So yeah, you you're an amazing advocate. No wonder Lynn was uh so happy to uh to to meet you and get connected.

Jay 29:56

Yeah, it's it's been great though. I think that we really want to um stress the issue with other airlines because honestly, I try to fly United now, knowing that they support this. You would think that other airlines would want to get on board with this. To me, it's just a win-win. I mean, it's not a huge cost. It's great when you talk about customers, you know, uh uh from a customer service perspective. And um it really does make a difference. So the hope is is we continue plugging away and we get another airline. I know Air Canada is on board, but if we can get more airlines in the US on board, I think it's just a win-win.

Advice After Diagnosis And Getting Help

Chantal 30:37

Yeah, and then I mean, in in the UK, well, also in in America, we're in across all sectors. So transportation, entertainment, leisure, uh, you know, hospitality, and that's what we want. We want the Sunflower wearer to have an end-to-end journey where they are acknowledged and supported. Um, and uh that's the that's the goal. You've been so amazing. I felt really emotional during this conversation. Um so uh thank you for that. Um I I just want to I have one final question, and I don't know if Lynn has anything else that she wants to ask. But do you have any advice for somebody who's recently received a diagnosis of any form of dementia?

Jay 31:24

Yeah, 100%. I mean, first of all, you know, you gotta figure out sort of what you're gonna do. I think one of the things that really helped me is I had a social worker that was part of the um neurologist's office. The social worker really helped walk me through the process. There's so many things and resources out there. Um, but having that social worker was really important. Getting involved in a support group. There are support groups for either early onset or Alzheimer's, and now most of them are on Zoom, you know, so you don't have to drive somewhere to go. Um get involved in an organization. You know, I was very involved with the Alzheimer's uh association, um, and I ended up serving on their national board of directors. That got me, it opened a lot of doors. But it started with the walk to end Alzheimer's, and I started meeting people that way. Um, and just getting involved, you know. Uh I think that uh it's easy to sit home and watch TV all day, but but I would recommend that um, you know, go to a baseball game, uh try to hang out with friends. There are organizations, you know, go to there's some um museum days they do here for people with Alzheimer's, just in the Durham area, you know, it's finding those activities and finding something you do. I started pottery, you know, because I needed something and I always liked art. So for me, it was very therapeutic for me to find that hobby because I didn't have a lot of hobbies, you know, it was pretty much watching sports and um, and and when I found uh pottery, that was really good. So, you know, it's finding finding that passion project, finding something you love, getting, you know, there are those treatments out there now that are slowing down the progression. There are a lot of resources out there. So check your resources.

Chantal 33:28

And I don't know what how do how how how do people reach out to um the charity, the the organization, VOA?

Jay 33:36

Voices of Alzheimer's. Well, you would just go to Voices of Alzheimer's Foundation or Voices of Alzheimer's.org. We're on, I mean, there's we have an incredible website. You can join as a member. Membership is only $10 a year, uh, so it's really nothing. And you get so much out of it from the podcasts to a lot of uh resources that we provide.

Lynn 33:59

Amazing. Thank you so much, Jay, for joining us today. It's been so wonderful to speak with you.

Jay 34:07

It's been great being here. I really appreciate the opportunity, and uh uh we'll keep pushing this Sunflower program and uh hopefully we'll have more airlines in the US uh on board.

Chantal 34:19

Thank you. Yeah, that's um amazing. Just to say, please go to your healthcare practitioner and do everything through the medical medical profession um who can advise you on your own individual situation. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non visible disabilities and the hidden disability Sunflower. You can also follow and subscribe to the Sunflower Conversations Podcast.