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Lesson from a fading mind, from a neighbor with early-onset Alzheimer's

Laurie Waters.jpg
Scott Morgan
/
South Carolina Public Radio
Laurie Waters, right, with Candace Taylor, is an advocate for early-onset Alzheimer's. She's spoken to Congress and continues traveling the world to push for a cure she knows she will never personally receive.

Laurie Waters doesn’t mince her words. There’s no point.

There’s no time.

With the candor of a native New Englander, Waters advocates for early-onset Alzheimer’s patients. She received her diagnosis five years ago at age 52. That’s about a decade-and-a-half from the typical earliest onset of the disease.

It has changed her life in ways she didn’t expect, and she refuses to waste away while she can still do something about it.

She’s aware that her memories are fading; she’s scared of what lies ahead.

What follows are Laurie’s words, from a conversation we had at the Alzheimer’s Association Alzheimer’s Association
Walk to End Alzheimer's in Rock Hill in October.

Occasionally, you will see evidence of her trying to find the right words to use. Those moments are left in because they are Laurie’s experiences, as they are; and they most accurately reflect what this piece intends to preserve – Laurie’s words, her story, her mind, and her spirit.

When did you find out you had Alzheimer’s?

I was diagnosed in 2017, five years ago with younger onset Alzheimer's. It's been insane. I used to work for a major pharmaceutical company and I had to stop everything I was doing. Stopped me in my tracks.

My family and I thought I had a brain tumor. And then all of a sudden, at age 52, it was Alzheimer's, something you'd never expect.

How has such an early diagnosis affected your life?

It totally changes everything. When you hear “live your life to the fullest, or do everything you can – you know, live for today” – well, those sentiments actually are here with me, because when you get that diagnosis of Alzheimer's at first, that’s all you can think of.

When I went to join groups or whatever, or learn about it, all I saw was people 70, 80, 90, in later stages. I never saw people like me, that were young and living with Alzheimer's. It took me two years before I found people like myself because there weren't many people that'll come out and say, “Yes, I'm living it.”

I found a group down in Greenville, thank goodness that were like myself and were still living.

In the beginning I wanted to commit suicide. I didn't want to live. I was like, “There's no way I want to sit there drooling on myself, have my family see me like this. What I was looking at was horrid. Disgusting. And I know what I'm gonna be like later on and it's scary. But for now, I'm, I'm fighting.

Do you have a family history of Alzheimer’s?

No. And that's a scary part. And my neurologist – thank God, I have an amazing neurologist – he sat there and he told me there always has to be a first. There has to be a first in every disease. And in my family, I was the first. Nine months ago, my godfather, who was in his eighties, he was actually diagnosed. And just, we just buried him. I just came back from New England. We buried him last week.

How has your family taken the news of your diagnosis?

My children? Amazing. My oldest daughter and my husband were the ones that picked up on it first with me, and my primary care physician. They knew I had it six months prior to me recognizing it. They have been amazing. My oldest daughter and her family moved closer here. Now they're up here in Clover with us to make sure they can help my husband and everything when things get worse. She changed her whole life for us.

When we told my whole family when I was first diagnosed, I have one sister that actually stopped and said, “You're lying. You can't have Alzheimer's. That's only when you're on your death bed, when they do the … not death bed. What's that word? The autopsy.

Sorry. When I do that, it means I can't remember a word.

How do you react to the kinds of things that people think about Alzheimer's?

The worst part is when people sit there and they think that, “Oh, well, I forget too.” Well, it's, “I forget too.” When I forget, it's gone.

When my youngest grandson … lives in Rhode Island. There are times when I go back and visit and I don't recognize him. I don't even know it's him. I have to be told it's him.

My godfather that just passed away -- they were sitting there saying about how he called me right before he passed away. He was talking to me and, I guess sang this song to me. I don't remember that. And that's horrible that I can't remember the last thing this man did, right before he passed away. That's my godfather, that's my soul, my heart, my love that I had with him. He's just, he's my heart. And I don't remember the last thing that man did.

Everybody was talking about it at the funeral. I can't remember it. The closest things, the newest things that happened, I don't remember. And people say, “Oh, well, that's nothing, don't worry about it.” Hello?! It's gonna be gone soon. It's gonna be completely gone and it'll never come back.

I could hardly hear what you were asking me because of that music. So that's why I don't know if that's what the question was.

I don't necessarily know how to ask the right questions. So I don't, I don't want to ask anything that is upsetting.

Nothing, nothing will upset me because I want people to understand what we go through. And it's hard. We know what we're gonna go through. We know. I know I'm facing death. I know I'm not gonna be here, but I want people to understand that, right now, I'm still here and I'm living my best life and I'm doing everything I can.

I travel, I spend time with my family. I tell everybody that I love every single day that I love them. And if I passed away today, hopefully from a massive heart attack, I've had my best life.

I've signed a DNR (do not resuscitate order). People go, “What do you mean you've signed a DNR?” Well, I have a terminal condition. I will eventually die from this. There is no cure for Alzheimer. With all the research, all the money, all the funding, there is no cure for Alzheimer's right now. So eventually I will not be talking. I will not be walking. I will have to have somebody change my diapers. Really?

No, I don't want to be in no diapers. I don't want any of that. So I have a DNR right now. So if I drop up right now and have a heart attack, no, they cannot resuscitate me, and that's my decision.

You mentioned that your first reaction was that you were suicidal. Why are you not anymore?

Because of finding other people like myself with younger-onset Alzheimer's that are living. I run peer-to-peer groups throughout the country, with Zoom. I mean, that's the one bonus Covid did do was brought us all together via Zoom.

We have meetings everywhere. And we work with each other. We keep each other going and we pray for cure. I've gone to Congress, I go around the world, I talk with everybody. And actually, I'm in the middle of working with a television show right now. That is, I'm going to Brazil – excuse me, to Spain in May of 2023, filming it with another gentleman from Singapore.

[Early onset] people from around the world that we are living our best lives. We're living for today and we're gonna work with neurologists and scientists from around the country fighting to hopefully find a cure; that they can learn from us. That there's something out there somewhere, somebody in the entire country is gonna find a cure for this and help the next generation, help my grandchildren, help my great-grandchildren, so they won't have to deal with this or anybody won't have to deal with it, because it's scary.

Is there any evidence that being in your fifties gives you an advantage? Is the deterioration slower than if you’re diagnosed at an older age?

Actually they say the younger you diagnosed, you have eight to 10 years. So because I was diagnosed at 50. They say within eight to 10 years, I'm not gonna be here anymore. Well, I'm five years down the road. And I'm still here. So if I had sat basically on my derriere – see I'm trying to keep the language good – and did nothing, I probably would've already deteriorated. But because I keep my mind active, I think is why I'm still going strong. But I could wake up tomorrow and not be here. That's reality. That's statistics. The younger you're diagnosed, the quicker you go.

People who have had say, close calls with death they often talk about how all of the sudden, the sky is bluer, the food tastes different …. Has that actually happened for you?

A hundred percent. Everything is so much better. Last year I actually, because I had gone to Alaska with one of my sisters and I flew over Denali in Cessna. I had a massive stroke right afterwards. I've lost my vision on the right side. I can't see below there.

It was in the name of my neck, two strokes, massive strokes. And thank God, MUSC in Charleston, I was right there. They saved my life. They said that this is a life-ending stroke.

No, I was in a walker. I went to a cane. They said with the vestibular, with the spinning, “You're not gonna be able to do anything.”

Yeah, right. I'm too stubborn. I see everything. I enjoy every moment I see the sky is blue, the dew on the ground. It's, it's amazing. I appreciate everything.

When I see a dog walking down the street, I don't care if he poops on my lawn. [I say], “Look at that beautiful animal right there. It's amazing.” Everything is great.

It's weird. It really is that saying that everybody says – live your life to the fullest. You really need to do it. You don't have tomorrow, none of us. I just actually am living it. Nobody else takes that and thinks about it.

You could get outta bed tomorrow and get hit by a car or a plane. I just actually know I have an ending coming quick, so I watch for everything. I want to hopefully see my grandchildren graduate. I probably won't, or I won't remember it if I am there, but I'm praying that I do get to see it.

Have you become braver in the ‘stuntman’ sense?

Oh my word. It's crazy!

So with that show that I'm doing, we actually went to Universal Studios two months ago. I went on every single ride there is. They say, “Oh, if you have cognitive issues, don't go on a rollercoaster.” I went on every rollercoaster there is. I would never do that before. It was amazing. I do everything.

My husband hates it. He's terrified. He's like, “You can't do that.” I'm like, “Why? Who's gonna stop me?”

I will do everything. A friend of mine brought me up to the waterfalls last year in North Carolina and they have the stone walls. I'm sitting on top of the stone wall, leaning over, looking at everything. All these people behind us are panicking. They're panicking. Dawn's like, “Get, get away from there”. I'm like, “Why? I enjoy it. I love it.”

I wanted to see that drop of water coming down and how it was coming down. It made me feel alive. It made me feel just watching. Nature was just amazing. I can't explain it.

When I was younger and I was divorced and had two kids and worked three jobs and busted my butt – I owned my own bar – I was fortunate enough, I did a lot of things when I was younger. And now I have a beautiful home and a loving husband and loving children, loving grandchildren. I appreciate everything.

I like to sit on my porch, and just because I can't read anymore that – I used to read a book every weekend prior to losing [partial vision] – now I listen to audio books. And yeah, I might have to re-listen to that book constantly just to get through one book, but I have that privilege of being able to listen to a book. And that might sound foolish because I lost that ability to read those words or to smell the book. But I'm hearing it at least.

I don't think it sounds crazy at all. There are times when my neighbors are playing loud music that I don't particularly care for, and I think, “I hate the music, but I'm so grateful I can hear it.” I’m very grateful too, but I haven't gotten brave enough to go skydiving or something.

Oh, it's, it's amazing. It's amazing.

You've done it?

I've done that. It's amazing. I haven't done it since my diagnosis, but I did it years ago. And I want to do it again. My husband's kind of like, really? I'm like, “Yeah, yeah. I gotta go back up again.”

I want to do ... what is that when you go off the cliff with that thing, what's that?

Hang gliding?

Yes! I wanna go hang gliding. That's one of the things I wanna do now too. Yeah,

I love it. I just can't get myself in the plane to jump out of a perfectly good airplane.

My brother says that. He works for an airline and he's like, “No, no.” I’m like, “Yes.”

I flew by myself last week, two weeks ago, all by myself. I did it and they said, “You can't. That's something that you can't do anymore.” I did. And if that plane was going down, I'd be opening up that door and jumping. Because I want to experience seeing everything before I go. Just enjoy it.

I mean, look how beautiful [the sky] is. Look at that moon right there. It's gorgeous. And did you see the other day that planet that was next to it?

I missed it.

It was gorgeous. See now, and I remember that. I shouldn't be able to remember that, but I do, because I looked at it three days in a row. I took pictures of it and it's just, I'm doing it.

I love knowing that your reaction to all this is, it's hard to deal with, obviously, but it's, just do it.

Just live your life. Take your medication, do what you gotta do and do it. I mean, reality is too, that the medication that I'm on, it's not gonna work much longer. I've been on it four years. There's nothing else to go to. That sucks.

Do you think at some point, within even kids’ reasonable lifetimes now, that there would be a cure for Alzheimer's?

We don't know. So I don't know. They're trying.

So, since you're not a scientist, and you're not working on a cure – what is your reason for being here [at the Alzheimer’s walk] and being an active person now, and talking to the press?

It's not [only] people that are 70, it's people that are 50, that are 40. I met one person that was 28 years old. Alzheimer's is a affecting everybody, and if they don't do something, if they don't find a cure for it, there's millions of people every year that are gonna be dying from it.

And the baby boomers? Hello! Look at me. I'm, I'm one of them. And we're all going to die from it. So they need to get it done, You know what I mean? There is a cure out there somewhere. It's just somebody has to find it. And we have brilliant scientists from around the world that can.

And I'm hoping, like that's why I'm going over to Brazil. Excuse me, I keep saying Brazil – Spain, one of the main producers is from Brazil who's been working with me, that's why I keep saying Brazil, even though it's Spain. But that's the Alzheimer’s that makes me screw up. In Spain, the big pilgrimage, that's what I'll be doing. Walking 30 kilometers. In May of 2023.

And then in September, 2023, it'll be aired.

I didn't realize [the Camina de Santiago] was what you were talking about. That’s very cool. A friend of mine, that's one of her life goals, to go over and do that.

Well, give her my contact. Tell us she's gonna come over when we go, because there's gonna be a ton of people that are fighting Alzheimer's.

And then there will be a big symposium in September of 2023?

Yeah. And it's the world coming together for it.

And you'll be a TV star by then!

Yeah. Just think, from Clover, South Carolina.

Scott Morgan is the Upstate multimedia reporter for South Carolina Public Radio, based in Rock Hill. He cut his teeth as a newspaper reporter and editor in New Jersey before finding a home in public radio in Texas. Scott joined South Carolina Public Radio in March of 2019. His work has appeared in numerous national and regional publications as well as on NPR and MSNBC. He's won numerous state, regional, and national awards for his work including a national Edward R. Murrow.