Don’t Panic, Build Community: Laura Tobi on Alzheimer’s, Leqembi, and Lifestyle Changes

This article is part of our Journey to Diagnosis series.

Originally from Argentina, educator and creative entrepreneur Laura Tobi, 58, moved to the U.S. 26 years ago. An educational designer by training, she has worked with labor unions, corporations, government, and public and private school systems, later founding a Miami-based business to cultivate creative thinking for learners of all ages. 

After years as a caregiver to her both husband and daughter through serious chronic illnesses, she and her husband relocated to North Carolina in 2024, where she noticed increased memory problems. A neurologist connected the dots: a lumbar puncture confirmed Alzheimer’s, and further evaluation found epilepsy, revealing silent seizures. 

In this interview with Being Patient’s Mark Niu, Tobi shares how she pairs Leqembi infusions with basic science-backed lifestyle changes — nutrition, exercise, stress management, and social support — while staying rooted in community through volunteering, teaching, improv, and clay sculpture in her home studio. Her takeaways: build community, stay mentally and physically active, advocate for yourself, and keep seeking joy — through teaching, volunteering, improv, and making art.

Being Patient: Can you take us back to the moment when you first realized something wasn’t right with your own memory?

Laura Tobi: I’m a person living with Complex PTSD (CPTSD), so I know memory problems. CPTSD is when you’ve had traumatic incidents throughout your life, and those add up. It’s not one “war,” it’s several “wars” throughout life. I was having serious memory problems, but those [presented as] big batches of forgotten years or groups of years and also other symptoms. I did trauma therapy for some time. So I [have experience with] memory problems.

But when I was about 55, I’m 58 now, I started noticing other kinds of memory problems. In this case, I was forgetting the names of my students and their parents. And yes, I had a lot of students and parents, but I knew these people for many, many years. It wasn’t the regular CPTSD problems [I had experienced]. It was something new.

I talked to my husband and we started seeing some neurologists. And I’m saying neurologists because I was seeing one and I wasn’t getting much of a response. They mainly would do cognitive testing and not much more, and said, “You’re fine.” Still, I didn’t think I was fine. I think I was dismissed a little bit for my age. I was concerned.

When I came to North Carolina, when I moved here, I was very fortunate to find a neurologist who was very straightforward and matter of fact. She heard my story and said, you’ve been given the runaround. We’re going to do a lumbar puncture. That’s what came back positive. That’s when I found out I had Alzheimer’s disease.

Being Patient: Was that a long process, though, to get diagnosed? What’s the time frame for how long that took to get that diagnosis?

Tobi: Three months in total. At the same time, the doctor asked me if I had other problems. I did mention I had an epigastric sensation that I didn’t understand where it was coming from. She immediately said, “You’re going to go see another neurologist.” And I was also diagnosed with epilepsy at that point. I didn’t know that there are both active seizures and silent seizures, and I was having silent seizures.

Being Patient: So where did you turn to for help? Did you leave it all on yourself or did you turn to any organizations that may have helped? How did you cope?

Tobi: Yes, I did start looking for organizations. I connected with the Duke University group, and I started meeting with them. I was also put on Leqembi, and that created a new group for me, which is all the nurses there. I’ve been on Leqembi for almost two years, and the nurses there have become my friends, and they all come to visit me every time I’m in an infusion. That’s a nice support group that I also have.

I’ve been volunteering at the Snow Approach Foundation here in Hillsborough, which is a place that I highly recommend, especially for caregivers because they have a really interesting approach to care. 

Regarding the treatment itself, I’m basically in the hands of doctors. But I also found through CNN a training about lifestyle changes that can help you mitigate the symptoms. There is some reversal of memory loss.

Being Patient: What lifestyle changes are you talking about?

Tobi: The Ornish program. The lifestyle changes include social support. Having a group, we actually have a group of former students of the program that we meet up with weekly. There’s also exercise. Aerobic exercise and weight exercise. There is a link between exercise and neurogenesis, which is very important. There’s a diet, which is a plant-based diet. People think it’s terrible that they’re not going to eat any more meat or any other animal product, but it’s not hard to do at all. Once you get into that groove, I found it really easy. I felt much better in every way. 

The last component is stress management. That involves relaxation, progressive relaxation, imaging, deep breathing. And I’ve seen changes immediately.

Being Patient: Are these things you’ve implemented every single day?

Tobi: Yes. You practice them every day. [I] do the exercises three times a week and [join the] group when we meet, but then stress management and the diet are every day. 

Being Patient: Tell us about your experience with Leqembi so far. How long have you been taking it and what’s it been like?

Tobi: It’s almost been two years. You do have to hydrate before you go. Initially, I would be there for about three hours. It was quite a bit of time. They dispensed the medication extremely slowly, to monitor for side effects. Now at this point, I’m there for an hour max. I go there every two weeks. I haven’t had any side effects. It’s been pretty good.

I had a PET scan done recently. There’s been a reduction in amyloids, but I’m still not out of the woods. I’m going to be on it for at least six more months. I’m not concerned.

Being Patient: How has your background as an educator and designer shaped how you care for yourself?

Tobi: I know what to do, but unfortunately, I’m not very good at taking care of myself. I have to push myself a lot. We are all very different in that sense. I’m very much an “others person” I’m looking out for other people before I look out for myself. Having trauma, having everything that came with moving to the U.S. and everything that was going on in my house and with the work, with the health problems in my house.

The fact that I have Alzheimer’s, I don’t think is only because of a genetic thing. I actually don’t have any genetic markers. I think all that stress adds up. And I think I should take care of myself more, but at this point I’m doing the best I can. Just the fact that I’m not working is enormous for me. I feel like something’s missing. But I don’t use a lot of my educational background to take care of myself. I should, though. I should.

“ I actually don’t have any genetic markers.
I think all that stress adds up. And I think I
should take care of myself more, but at
this point I’m doing the best I can.”

Being Patient: You’re also involved in art, too. Tell me about that.

Tobi: I am involved in art in many ways. I’ve always loved doing art myself. My favorite medium is clay, and I do ceramic sculptures. I have my studio at home, which is beautiful. But I also love the community of artists, and I joined an improv class, so I’m doing that. I recommend improv for people that have early-onset Alzheimer’s because you don’t have to remember anything, everything is in the moment. Whatever is going on in the improvisation, you do your part with whatever comes to mind. I find it is an opportunity to use my words and come up with situations. It’s extremely stimulating. It’s a lot of fun. We’re laughing out loud most of the time with our peers. 

I think you just have to keep looking for sources of joy. A diagnosis is not the end of anything. It might affect you emotionally, but it’s one more thing. You might crash at the corner the next morning, and you’re still going to go fix your car and move on. This is the same thing. Keep doing the treatments that you have to do, but look for joy. That’s going to raise your soul, make your days amazing, get a positive vibe, and teach you new things.

Also, stimulate your brain, because you’re doing all these activities when you’re looking for sources of joy that are new activities, new things that you’re doing, and that learning is extremely important.

I also signed up for ceramic classes myself, so I’m also taking classes just because of the community.

“I recommend improv for people that have
early-onset Alzheimer’s because you don’t have to
remember anything, everything is in the
moment… It’s extremely
stimulating. It’s a lot of fun.”

Being Patient: How did being a caregiver, before you were diagnosed, help you navigate your own Alzheimer’s journey?

Tobi: That’s a good question. I think the first thing was the research part, being very aware that I needed to know as much as possible to make an informed decision. Looking out for professionals that were really committed, both with my husband and my daughter, we saw professionals that were just going through the motions of an appointment but not committing to the treatment and paying attention, really, to the patient. I can pinpoint a professional who’s really into taking care because of the questions that they will [ask] during the session, how much time they’ll take during the follow-up, if they’ll reply to your emails or your messages through my chart or not. That kind of thing makes such a difference.

I highly recommend that whoever is thinking, “Oh, I might have this problem, or one of my family members might have this problem,”  make sure that if you see somebody that you’re not convinced by, go somewhere else, and find somebody [else] because that runaround I was getting in Miami was horrible. It was so frustrating. And, you know, inside you, you know when something has changed radically, when something is completely different, they might say, no, it’s not. But yes, something has happened.

Being Patient: I’d like to ask you to provide any advice or encouraging words you might have to share with someone newly facing a similar diagnosis.

Tobi: First of all, it’s a diagnosis. Don’t panic. There are treatments. There are a lot of treatments that are coming down the pipeline. As a friend of mine says, there’s never been a better time to have Alzheimer’s, which made me laugh a lot. I don’t think it’s that funny of a situation, but she is right. There’s a lot going on right now, so don’t be afraid.

Definitely look for a community. Look for both an Alzheimer’s community, so people that are in the same boat as you are, as well as a community of whatever things you like to do.

Expand your horizons, stay active — mentally and physically, stay connected; it’s extremely important. Eat healthy, exercise, love a lot, get love, connect with nature. It’s the best stimulation you can get. It creates peace within you. I think those were my most important ones. And call your friends, no matter where in the world they are, they’ll always support you.