39. Living with Early Onset Alzheimer’s Disease: Patient Advocate Jay Reinstein Shares his Story

Published November 3, 2021

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Show Notes

Jay Reinstein is a graduate of the Alliance’s Talk NERDY to Me program, which trains older adult on patient-centered outcomes research and the clinical trials process. Jay, who has early-onset Alzheimer’s disease, shares his story this Alzheimer’s Awareness Month.

Episode Transcript

Sue Peschin:

Hi, everyone. Welcome to This is Growing Old, a podcast from the Alliance for Aging Research. I’m Sue Peschin, president and CEO of the Alliance for Aging Research. I’m thrilled to introduce you to today’s guest, Jay Reinstein. I met Jay a couple of years ago after he applied for the Alliance’s Talk NERDY to Me program and joined us. And we were so lucky that he joined us. Our Talk NERDY to Me program trains older adults and family caregivers on patient-centered outcomes research and the clinical trials process, and then gets them involved in advisory roles to help improve the research process. Since November is Alzheimer’s Awareness Month, we thought it would be a great opportunity to raise awareness and spotlight Jay, who has his own podcast and is an amazing star in his own right? So, as I told him, I’m trying to up my game here today, and Jay has early onset Alzheimer’s disease. Jay, welcome to This is Growing Old, and thank you so much for being here.

Jay Reinstein:

Well, thank you for having me, Susan, and it’s really an honor to be here and chat with you for a little while.

Sue Peschin:

As I mentioned, you are a graduate of the Alliance’s Talk NERDY to Me program, which empowers older adults to engage in patient-centered outcomes research. Why is patient advocacy as a part of the research process important to you?

Jay Reinstein:

Well, first of all, it gives me and others, other individuals living with cognitive issues, a voice. And a voice is really is critical. When we look at research opportunities, I remember in the Talk NERDY classes, it was an opportunity from a patient’s perspective to see the type of research that was going on and to be able to provide ideas and hopefully thoughts that may help researchers better understand the patient. Because if they don’t have any interactions with the patients, it doesn’t give them a perspective of someone living with the disease. And I think it just, it can really ultimately help the researchers.

Sue Peschin:

Absolutely. Yes. Thank you. That’s exactly what we’re trying to get out with the program. Can you share your experience a bit with our listeners as someone living with early onset Alzheimer’s disease? What is that like for you?

Jay Reinstein:

Well, for someone that was an incredibly busy individual, someone that had a job that he loved in a local government for an entire 30 years, when I started having those issues with my short-term memory, having to work longer hours, being in meetings where I would hear things and I didn’t quite understand what I was hearing, it was very frustrating and scary actually. I was going through a period of time where I thought it might’ve been information overload. So after a period of time, I spoke with my wife, because I wasn’t sure if this was normal, if this was normal aging or what was going on. So it was really eyeopening and it was that time where I had to see a neurologist and get a better understanding what was happening.

Jay Reinstein:

After neuropsychological testing, after some scans, I think I a PET scan and MRI, it was at that point, I realized that I had a diagnosis of early-stage Alzheimer’s. But living with the disease, a lot of frustration, because I was able to do so many things and now I have a lot more difficulty. It’s more making lists. It is my wife checking on me, am I taking my medications right? I’ll be in situations where I have to ask the question multiple times before I really get an understanding. So it’s really sort of a change in how I do things, and quite honestly, a lot of frustration goes with it. But one thing I’ve learned is that I try to focus on those things that I can do well, instead of those things that I can’t do as well anymore.

Sue Peschin:

Yeah. Well, and November, as you know, is Alzheimer’s Awareness Month. What do you want people to know about what it’s like to live with Alzheimer’s? For people who have maybe never experienced it in their families or themselves, what do we all need to know and what could we be doing better?

Jay Reinstein:

Patience one thing I would tell anyone. Be patient. My brain is a little different. It acts differently. I don’t have the same level of times of understanding. Sometimes you’ll have to ask me the question two times, before three times. Understand that I’m going to ask more questions. For example, I have difficulty now watching a series on television because I can’t always remember the characters. I have more difficulty with reading retention. So instead of reading books, I’ll read short articles on the internet. I need more reminders. Patience is important.

Jay Reinstein:

And also, I’m going to have bad days. Honestly, I think what has been difficult, I’ve been a very upbeat person. Most of my life, I’m always a glass-half-full kind of person, a very positive attitude. What has happened is, while I try to be positive, I have those days where they’re darker days and I’m really down. I’ll wake up and sometimes my brain, I guess, for the lack of a better word to describe, is a little foggy and I just need the support. And I think what’s really important is having people around you that understand, that care, that realize that you’re going through some changes. Thank God for me, my disease is not progressing as fast as others, and that’s a blessing.

Jay Reinstein:

So when you ask the question, what do I want people to know about what it’s like to live with Alzheimer’s? It changes all the time, but the biggest thing is patience and just loyalty. Be there for me when I need you. I might not be driving much longer, so I may need a ride. So those are the kinds of things. But at the end of the day, the thing also I wanted to add too, sense of humor is really important, kidding around. Even people that joke with me about when I do some dumb things, it’s okay to kid around because laughter to me has always been so crucial and critical and in everything I do. So I’m okay with joking here and there, but humor’s really important. Humor’s really important. Don’t take it seriously all the time. Life is short, laugh a little.

Sue Peschin:

I love that. I have a quote in my office about laughter being the closest distance between two people.

Jay Reinstein:

Yeah, I like that. I like that.

Sue Peschin:

I cannot the name of the comedian. I’ll send it to you after this, but it’s one of my favorite quotes. Actually this feeds well into my next question, which is what has helped you get through tough times when you just aren’t feeling positive about getting older or about Alzheimer’s disease?

Jay Reinstein:

Well, I hate to say it’s an easy one, but I am so, so lucky to have a family that is incredibly supportive. I have two daughters and a son, I have four grandkids, I have a wife. My parents are still alive in their 80s and I talk to my folks every day. Every day we have a call and it’s not talking about Alzheimer’s disease. It’s talking about the Washington Football Team, or it’s talking about another event, a concert I’ve been to. I don’t want to have the label of Alzheimer’s on my head all the time. I don’t mind talking about it and I do talk about it, but I want to… There are other things in my life that I want to do. So what helps me get through it are positive people, great friends, doing stuff like…

Jay Reinstein:

I do this radio show. And I got to tell you, that’s one thing that I so look forward to every week because my career is over in local government. And I had a major void and it was like, what the heck was I going to do? I don’t want to sit around, watch TV. I’m a type A personality. So for me, it was finding that niche in radio, having conversations with people, podcasts. That’s what I love to do. It gives me energy and that’s what I needed. So it’s the family, it’s the friends, it’s activities, it’s walking. Now I can eat better, Susan. I can tell you, my diet is not great.

Sue Peschin:

Me too.

Jay Reinstein:

I mean, if I could get away from that ice cream at night, that would be a great thing. I’m very fortunate to have a lot of people in my life that care, and I have to say that I built my entire life and really career on building relationships and that’s paid dividends now in my life. That what’s important.

Sue Peschin:

Absolutely.

Jay Reinstein:

That what’s important.

Sue Peschin:

It’s really good advice. I just want to say, I just think what you’re doing… I know you don’t want to talk about Alzheimer’s all the time, but just the fact that you are, I think just is of tremendous value because there’s so much stigma as you know-

Jay Reinstein:

There is.

Sue Peschin:

… and people get very isolated in the disease. For you to step out of it and the use the time that you have, and we all have limited time, whether we’re diagnosed with something or not.

Jay Reinstein:

That’s right.

Sue Peschin:

Right?

Jay Reinstein:

That’s right.

Sue Peschin:

And you’re choosing to use it in a way to help other people to get out of yourself. That’s an incredible gift and I’m very inspired by it.

Jay Reinstein:

Thank you. I have to talk stigma here for a minute, if I can, because-

Sue Peschin:

Sure.

Jay Reinstein:

… what I’m doing today, what I do on radio, what I do in my life, it is reducing stigma. It is letting people know that we can live life well, and that we can do things, maybe not what we used to do, but we can do other things. I think as being on the National Board of Directors for Alzheimer’s, it gives me that platform. And when I talk to groups, the first thing people do is they look at me and they say… Well, I want them to say that you’re good looking, but that never happens. But what they often say is, “You don’t look like you have Alzheimer’s.” And I go back and I say, “Well, what should I look like?” I think that younger people in this country, people that are under 65 that had been diagnosed, that’s one of the things because you can’t see Alzheimer’s. Obviously when you progress to a certain level, when you get to that stage, yes, you probably can see it more. But the early stages, I can function pretty well, but there are definitely things. So reducing stigma is huge, is huge.

Sue Peschin:

Yeah, absolutely. I just, before we go, I want to make sure people hear what your radio show is and how they can tune in. So just let us know that quickly.

Jay Reinstein:

Oh sure. Oh yeah. I do two shows. One is Honest Conversations with Kev & Jay on WIDU 99.7 FM. And then I do 3600 Seconds with Jay, an opportunity to get to know the movers and shakers in North Carolina. So it’s again, I get to meet so many cool people and listen to their stories and it keeps my brain active. I just have to say one thing. Well, when I go onto the show every Tuesday morning, my co-host Kevin, he does no preparation. He just, he walks into the studio. I have notes. I have spent hours preparing every week, but that preparation keeps my brain active and I love it.

Sue Peschin:

That’s awesome. It’s great advice, I think, for people to stay engaged, to do that. It’s not like a button just gets turned off because you get the diagnosis. There are things you can still do-

Jay Reinstein:

That’s right.

Sue Peschin:

… and that’s really helpful.

Jay Reinstein:

Exactly right.

Sue Peschin:

In your opinion, what’s the biggest challenge facing older adults today?

Jay Reinstein:

Oh gosh. I mean, there’re several. It could be financial, it could be issues with mobility. One of the things that concerns me and other people aging, even with and then when you get Alz, is independence. So, if you look at a person not living with Alzheimer’s, independence might not be as much of an issue. For me, my biggest fear is losing my car. Because once I lose my car, the world changes for me. And that is the thing for me. I know that we’ve already… We just sold our house. We just bought a new house that is being built now. It’s a ranch. So planning for the future. Don’t have the steps in it. It’s going to be easier for us.

Jay Reinstein:

And then the other thing I think for a lot of individuals, and it’s not for me per se, but what I hear a lot from people’s loneliness. I think a lot of… As you get older, if you don’t have that network of friends or those activities, loneliness is really scary. And with this disease, in particular Alzheimer’s, one quick example is… I won’t mention this individual’s name, but a person I’ve gotten very close with since I’ve been diagnosed, who lives near me. He’s younger than me. His progression in the last two years, I mean, he’s in now adult services where he’s trouble getting dressed. He has trouble cutting his his food, but he’s alone a lot. I think that loneliness has led partially to that faster progression. So those are things that I think when we talk about older adults facing today. The financial and mobility and independence.

Sue Peschin:

Yeah, those are all huge issues. I think they’re really like a lot of the primary issues for people. We talk about things like… Yeah, I totally hear you. I think those are good points.

Sue Peschin:

Now for two questions that we ask all of our podcast guests. When you were a kid, what did you imagine growing older would be like?

Jay Reinstein:

That’s a great one. Well, I thought that I would be able to do anything I wanted to do, maybe more independence. But then I also looked at my great-grandmother and I thought that that was not something necessarily I would be looking forward to, because when I was younger, my great-grandmother was already quite old and not very mobile. And I thought, “Hmm, is that really something to look forward to?” So it was a little scary actually. It was not something I necessarily looked forward to. As I started getting older, I started realizing that, wow, I would have maybe some more independence. I could make decisions on my own without having to go to my parents. But I think the image of my great-grandmother as a young person was not something I looked forward to. And I don’t know if that answers the question, but it was more… I wouldn’t say fear, but it was not something that particularly was… Yeah, it’s hard to answer that one.

Sue Peschin:

That’s okay. I mean, there’s no right or wrong answer to it. It’s just your experience and people have different experiences.

Sue Peschin:

What do you enjoy most about growing older now?

Jay Reinstein:

Well, I would have said… Let me backtrack. Five years ago, what I was looking forward to was working another five to [inaudible 00:18:15] because I love working. I enjoy the interaction with employees. I was a workaholic and I loved it. I looked forward to retiring, to maybe buying a vacation home one day and traveling the world and spending time with my grandkids. That’s what really I looked forward to. And my parents and friends.

Jay Reinstein:

Now, if you go five years later, with the diagnosis, it’s different. Now I want to condense everything. I want to do as much traveling as I can while I can. I want to spend as much time with my grandkids. I mean, it’s tough because my grandkids are in Georgia and I just want to see them all the time. I want to see my mom and dad. I just got into this study at Georgetown called the LEAD study. It’s a longitudinal study where there’ll be studying my brain for the next… I don’t know how many years. Well, why we picked Georgetown is, it’s close to my mom and dad. So every three months, I get to see my folks. They’re getting older. It’s changed sort of the perspective and everything.

Jay Reinstein:

And then the other thing I have to say, and I’m really advocating for it is growing older now, what has changed is there’s no drugs except this new Aduhelm that potentially slows down the progression of the disease. I have done more national interviews about wanting to get this infusion. And this new LEAD study will give me that PET scan, which will enable me if we can get Medicare to reduce the cost, to be able to get this infusion. But when I hear about the drugs in the pipeline, Susan, it gives me hope. There are three or four drugs right now that are really showing great promise. And I have to think to myself that it’s got to be something sooner rather than later. If there can be something that gives me an extra couple years, oh my God, it would be incredible.

Jay Reinstein:

The question you asked is what do I enjoy about growing old? It’s spending as much time with those family members in a more condensed period of time. I feel like I have to do it now because I want to enjoy the experiences. I’m really afraid what’s going to happen in the next three or four years. So it’s scary, but I have that glass-half-full attitude and I’m really hopeful that the infusion for Aduhelm is going to work for me, these other drugs in the pipeline, and that I will be able to enjoy growing older. Yeah, it’s tough. It’s tough. But yeah, I hope that helps you and others know that there’s a sense of desperation, is what I’m trying to say.

Sue Peschin:

Oh, yeah. Absolutely. I really appreciate your candidness and putting it out there because I think people… We want to I think sometimes just think people who have a sickness are sort of over there and don’t need to deal. And the thing is, is that it’s going to happen to us on some level sooner or later. People always say like, you’re either a caregiver now, or you will be a caregiver, or someone will be caring for you at some point in your life. So we’re sort of all in this phase, and a lot of times we don’t deal with it until it hits us. And so to have the blessing of hearing from people like yourself and to just say, “Put it out there, I’m afraid. I’m trying to make the most of things now. I also want to see research because I want to continue living and I want to continue enjoying and traveling and having my relationships with people.” That’s all very real and it’s so important.

Sue Peschin:

Thank you so much for being with us today and just of the time that you have, spending some with us means a lot to us. So thank you.

Jay Reinstein:

Thank you so much for this opportunity, Susan. I really appreciate this opportunity. Thank you.

Sue Peschin:

Thanks to all our listeners for tuning in to This is Growing Old. Our intro and outro music is City Sunshine by Kevin McCloud. Please stay tuned for new episodes every other Wednesday, and as always, you can subscribe to us on Apple Podcasts, Google Podcasts, Spotify, or anywhere else you listen to podcasts. And please rate and review us if you’re enjoying the show. Thank you for listening to This is Growing Old, and have a great day.