When Dan Jaworski was about to undergo cognitive testing, his doctor advised him that if he had a “bucket list,” he should start doing it. That’s why after being diagnosed with MCI and later Alzheimer’s disease, he ensured he would compete in IRONMAN Kona before he declined. In this interview, he shares his experience with diagnosis and triathlon training.
This article is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly.
For many people, when they get an Alzheimer’s diagnosis, it becomes a moment to evaluate their life and their “bucket list.” For Alzheimer’s advocate Dan Jaworski, when he was initially diagnosed with Mild Cognitive Impairment (MCI) in 2019, he realized that his goal of competing in IRONMAN Kona at the age of 75 might not be a possibility. IRONMAN is a triathlon competition, with the world championship held in Kona, Hawaii, being known to be the most rigorous.
“I looked up life expectancy with this disease, and the numbers three, 20, and eight come up, meaning your life expectancy is a minimum of three, a maximum of 20, and an average of eight,” Jaworski explained. “That’s why this Iron Man thing came into my mind because I was doing the math.”
Instead of stopping there, Jaworski moved the goalposts and called the organizers of IRONMAN Kona to ask if he could compete on an exception. Three years later, due to COVID-19 pandemic restrictions, Jaworski was able to take part in the competition. Now aiming for 2040’s competition, he continues to take part in other IRONMAN events.
Jaworski, in the past couple of years living with the disease, was also in the Early Stage Advisor cohort with the Alzheimer’s Association and has a diagnosis of MCI caused by Alzheimer’s disease, which was confirmed with a spinal tap.
In this interview, he spoke with Being Patient founder Deborah Kan about his experience with diagnosis, IRONMAN, and the role of exercise in his life.
Watch the full conversation.
Being Patient: Tell us about when you started to become concerned about your memory.
Dan Jaworski: In 2019 [we] were on a family trip in Thailand and apparently I was asking the tour guide the same question over, [like], “When are we doing this?” My family hadn’t said anything to me about this.
So, we get back to Orlando, and my wife and I are driving to a basketball game, which is three miles from my house. I’ve been there literally hundreds of times, and we’re driving, and I stopped the car and said, “Where are we going?” She said, “What do you mean? We’re going to Rollins College.” I said, “I know that. How do I get there?” That’s where I knew something was wrong.
I’ve been to [it] hundreds of times. I’ve driven there. I’m really good friends with a basketball coach. I know how to get there like the back of my hand. But at that moment, it was like I didn’t remember how to get there.
At that point, my kids and wife had kind of seen something and said, “We better go to the doctor and get it checked out.” And so that’s what I did. I went to the doctor and [she’s a] phenomenal lady. It was interesting because very early into our conversation, she says, “We’re going to prepare for the worst, hope for the best. If you have a bucket list, you need to start doing it.”
So I, at that moment, said, “Okay, well, what do we need to do? Let’s go.” From there, I went down [what I call] “the test gauntlet.” For those that have been down this [path], they know what I mean by that.
“Very early into our conversation, she
says, ‘We’re going to prepare for the
worst, hope for the best. If you have a
bucket list, you need to start doing it.'”
Being Patient: Was there a history of Alzheimer’s in your family? Have you gotten any genetic testing?
Being Patient: You were in your 50s at the time, so Alzheimer’s probably wasn’t on your radar. Was it a sudden onset, or were there other signs your family noticed over time?
Jaworski: No, it’s not on your radar at all. For me, it was a complete shock. Once I started [to] go down the testing route, that’s when I was like, “Oh, crap.” They give you a long [test]. The cognitive test is like a three [to] four-hour testing thing. It’s all kinds of different things, from numbers to stories, where they’re giving you a whole litany of things.
Like, “Lori and June were out.” One had a purse, one was wearing earrings, and it was raining, and it goes through all these things. Then you have to kind of recap it at the end. When I got out of that test, I was like, “Okay, something is wrong,” because I’m not able to do some of these things, which I had never figured would happen to me.
Being Patient: You worked in investments and did a lot of traveling overseas at the time. In hindsight, was there anything at work that came up that could be related to Alzheimer’s?
Jaworski: No, not really. That’s what was so surprising about this to me. I didn’t know it until I went down the testing route. I definitely have some issues. There are definitely some cognitive deficiencies.
[Testing] told me that my decision-making abilities are somewhat compromised, and other than that, I’m highly functional and all of that. I might, if you and I are together for a couple of hours, I would probably repeat something to you. I would say something like that, and I might say it a couple of times. That’s about where I am right now on that spectrum. For me, it is to keep doing everything I can to keep that slide from going down.
Being Patient: Tell us about when you were diagnosed. What was that like?
Jaworski: I was out for a run one day, and the phone rang. I carry my phone with me because I like to listen to music. It was my doctor, and I remember these words verbatim and he says, “I’m sorry to tell you that you have mild cognitive impairment consistent with Alzheimer’s, likely to lead to dementia.”
He also added to this, and said, “But we can’t be 100% certain without an autopsy.” I said, “Doc, I’m going to take your word for it.” I don’t need that kind of clarity. That was it. That moment put me on my knees, actually, because I kind of knew it was coming.
What’s funny is the things that go through your mind. I looked up life expectancy with this disease, and the numbers three, 20, and eight come up, meaning your life expectancy is a minimum of three, a maximum of 20, and an average of eight. That’s why this Iron Man thing came into my mind, because I was doing the math.
I said, “Okay, I always thought I would go to IRONMAN in Kona at age 75,” and if I did the math, this plus where I’m at right now, I wouldn’t be able to make it. I would be under the thing. So, that’s how I ended up getting into IRONMAN Kona.
I had called because it’s a race that you have to qualify for. These are all genetic mutants, and I’m an average one of these people. So, I got in on an exception. I was doing IRONMAN before, but the goal for me was always to get to IRONMAN Kona at age 75. It was like, I might be behind my sell by date on this.
“I was doing IRONMAN before, but the goal for
me was always to get to IRONMAN Kona at age 75.
It was like, I might be behind my sell by date on this.”
Being Patient: When did you start training for IRONMAN Kona, and when did you go?
Jaworski: It’s weird. It was actually in 2019 when I got the diagnosis, but it took me three years of [COVID-19] delays to get there, and then I finally got there, and it was awesome. I had a bunch of high school friends, some people that I didn’t even know that I just met on Instagram came over, so we had a big crew. It was very fun.
disease, and so I just was trying to find people and find
out what they were doing. I wanted to learn from
them about the things you can do.” Image courtesy of Dan Jarowski
Being Patient: What does exercise do for you now that you have a diagnosis?
Jaworski: I think it’s the number one. If you put it in order, it would be exercise, diet, brain engagement, [and] sleep. Movement is medicine for your brain as well because it gets the blood flowing and all of that. I think the research that’s coming out is supportive of that as well.
I just know that I feel great when I do it. I feel like I’m punching the disease in the face when I’m doing this. I’ve never had a bad [run]. I’ve had runs that are hard, runs that are long rides that I wish would end, but I always feel great when I’m done because I feel like I’m keeping the disease at bay.
“I’ve never had a bad [run]. I’ve had runs that are
hard, runs that are long rides that I wish would
end, but I always feel great when I’m done
because I feel like I’m keeping the disease at bay.”
Being Patient: What is your training schedule when you’re preparing for IRONMAN?
Jaworski: It depends on when you’re getting into it. For me, it would be two to three runs a week, two bike rides with one long one in there, like a 50 mile or something like that, if it ends up you’re doing a half or a full. A full is a very different animal than a half, even though it’s only twice as long, it’s about four times the effort level.
If you’re doing a half, that’s something I can cork off pretty easily with just decent training, not be super competitive, but have a great day still. That’s where I’m at right now, and my goal is to make it to 2040 when they say that I will not be on this planet. I’ve invited everybody, you’re invited too, to come with me back to Kona in 2040.
Being Patient: You have a lot of IRONMANs between now and then, right?
Jaworski: I’ve got North Carolina coming up. My shoulder [has] got to get healed first. [That’s] the first one that I’ll do. My son is actually my coach. He’s actually in New Zealand right now, competing in the World Championships for the 70.3. He’s fast. My wife and I have very bad genes, but apparently, our kids don’t.
Being Patient: What else are you doing to slow down the disease?
Jaworski: I’m a huge believer in the Mediterranean diet. There’s a gal on Instagram that I follow and I really love, Dr Annie Fenn. She’s called @brainhealthkitchen. She’s got all kinds of great recipes. I bought her cookbook. She’s fantastic.
I will never eat ice cream again. I will never eat most meats. I’ll eat chicken and fish, and that’s it. All the things that I really love, I don’t eat. It hasn’t been a big give-up because this battle’s too important for me on that side, so that hasn’t been hard at all.
Being Patient: Do people treat you differently when you tell them you have Alzheimer’s disease?
Jaworski: I’m very honest with it and open about it because I want to find [people]. One of the biggest things I had when I got diagnosed was that I didn’t know anybody with a disease, and so I just was trying to find people and find out what they were doing. I wanted to learn from them about the things you can do.
So, like the exercise, diet, brain engagement, and sleep, I do a ton of stuff. I’ve got 440 days of Duolingo learning Spanish. I do all the New York Time puzzles and all that kind of stuff. There’s not great evidence that that helps. Maybe that just makes you better, but it doesn’t hurt, sudoku, you name it. A lot of those kinds of things that I try to work on. I play video games, which I’m hoping is good. My wife thinks it’s bad, but we’re pretending that it’s good because I like doing it.
“When I got diagnosed, I didn’t know anybody with the
disease, and so I just was trying to find people and find
out what they were doing. I wanted to learn from
them about the things you can do.”
Being Patient: Are you on any medications or treatments for Alzheimer’s disease? Also, are you planning on taking monoclonal antibody drugs like Leqembi or Kisunla?
Jaworski: [I am taking] Aricept. I’m not taking Namenda. We’re looking at [monoclonal antibody drugs]. I was a little bit [cautious], because I feel like I’ve been so stable.
I’m hanging out in a very good spot. My cognition has been pretty flatline for five years, which is good, I think. I just didn’t want it because I have the one [ApoE4] gene. I don’t want to have a brain bleed in my head from something else, and I just wasn’t ready to do it, but now I am.
Being Patient: Now living with Alzheimer’s disease, what has your experience been the past few years? Have you noticed any changes in cognition?
Jaworski: There will be times I’ll walk into a room, and I’m like, “Okay, why did I come in here?” I guess everybody has that to a degree. It’s things like that, but it’s just more so the daily routines that I know that we have, I don’t [have it]. [I have a] short memory table. If I have too many of them on, I can’t remember it.
We have a big calendar now. You figure out ways to trick it or to manage it, and that’s what we’ve done, I’ve got a great partner. My wife’s unbelievable. She’s just very, very patient with this stuff. I think it’s hard for everybody.
It’s been tough on my daughter. Just the whole, what’s going to happen next? There’s all that. I mean, that’s all very real and very hard. My hope is we find some kind of fix for this, or so it doesn’t get to my kids and my grandkids.
Coming from a world of economics, we can’t afford it. I mean, the economics of people being pulled out of their jobs at their highest earning times and then having to have another person pulled out of the workforce to help them.
I’ve been in DC with the Alzheimer’s Association and talking to the congressional people. It’s too expensive. It will blow up part of the budget. I mean, even though we’re doing a poor job of that anyway, right now. But it’s coming, and if we don’t do something to slow it, it’s [going to] really overwhelm us at some point.
“My hope is we find some kind of fix for this, or
so it doesn’t get to my kids and my grandkids.”
Being Patient: Do you feel like you have control over the disease at this point?
Jaworski: I know it’s there, I know it’s relentless, and it’s coming at me every day. I get up every day and tell it, “I’m still standing.” I do. I talk to it. It’s a little crazy, but I’m a competitive guy, and I’m trying. My goal is to be the first survivor. Like I tell people, don’t bet against me. I know the odds but don’t bet against me.
Being Patient: You certainly are an inspiration to many people. You’re in your 50s, it’s a really young age to face Alzheimer’s, but it’s not stopping you. Congratulations, and you’re redefining what it’s like to live with Alzheimer’s.
Jaworski: I’ve met a lot of great people, and there are so many people, and I just want to find a way to serve this community in any way that I can. I would just tell anybody that’s close to it— get out and go run. Movement is medicine. Get your brain moving. Get your body moving. It will elongate your life. We all end up in the same place, but you can have a much better life if you do that.
Katy Koop is a writer and theater artist based in Raleigh, NC.
