BEFORE I FORGOT

BEFORE I FORGOT
How One Woman Changed the Course of Her Alzheimer’s Journey
Exclusive Interview with Jamie Betz
Featured in 'Innerviews'
Hosted by Allié McGuire

​Jamie Betz began asking questions before forgetting became the default. When subtle changes in her memory didn’t feel right, she chose to listen, to look closer, and to keep going even when reassurance would have been easier. This is the story of a woman who trusted herself, dared to find out, and, in doing so, changed the course of her Alzheimer’s journey.

ALLIÉ: Let's start like this. Before Alzheimer's ever entered the picture, what did your everyday life look like, and how would you have described yourself then?

JAMIE: I have always been, and still am, quite ambitious and positive. They used to call me the Perky Princess. The bowl is always full. 

I've always worked in the health field for 45 years. And I worked primary care for almost 20. And I felt like they were my second family, and I was always there for them, the patients, and they were my second family. And my primary family is the best thing of my life. I live for my family. Yeah, I really do.

ALLIÉ: That’s a beautiful thing to live for, for sure.

​JAMIE: And I don't know, just always looking for new adventures. I can't sit still for very long. Life's too short. You never know when it's going to be your last day, so I definitely don't want to spend it on the couch.

So I have always worked full time. A mother of two. I have a beautiful husband. We were a great team of parents, and we had both of our sets of parents alive and family gatherings, vacations, lots of memories. I am always trying to make good memories. Like last night, we built a snow fort with my grandsons, and when my son came to pick up his boys, we attacked him with snowballs. I mean, there's just always something. Why not? You know, why not?

ALLIÉ: Yeah, I love that. So you're a collector of memories then. It sounds like you're a collector of memories.
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JAMIE: I am. That is a good title. I am a collector of memories, and I can recover them.

​ALLIÉ: Right. So now that leads on to more questions that I have for you today, because Alzheimer's first became part of your world through your family.

What was it like, a few different questions here, what was it like to walk beside your mother through her illness, then to witness your father's devotion as her caregiver, and then after that to later see your sister begin to experience memory loss herself? Could you just walk me through what those lanes look like for you?

JAMIE: My parents moved away. They sold their home in Ovid. I grew up there in the country, and they sold their home and moved up north. And so we would get up there, you know, our kids were in sports and stuff, so we weren't able to go up there all the time. But we tried to go up there every one to two months and visit my parents.

I never associated my mother with memory loss for quite awhile. She was just getting older. And then she became very ill with a UTI sepsis, and she almost passed away in a hospital in Traverse City. And ever since then, the frailty was even worse. So I never really thought about Alzheimer's. And then I noticed that her aging was just progressing.

And they moved to a new home in Cadillac. They bought a home on Lake Mitchell. And my mother never was able to find the things in the kitchen. She always had the same clothes on because she didn't know where her clothes were. Well, she had closets, but she just never… And then I started realizing, and so did my father and my sister and my brother, she had some dementia. That was eight years ago, and there wasn't much hope. There wasn't much medicine out there to make it better. So they continued to live as full as they could.

They had a place on the lake. They would take trips. My dad is my hero. He's always fun. He's always positive. He's always jolly. He's always cooking and baking and making life perfect for the people around him. Yeah, he truly is a caregiver. And it was never really much of a burden because they continued their day. They were both retired, so they were together. He was always there taking care of her. So it wasn't a burden on anybody because she just had a little bit of memory loss. And then I do recall she was getting worse, and my dad told her she couldn't drive anymore. And that really made her mad. And just after that, the progression was getting more noticeable.

Our kids grew up. We were able to go up there more, and I was able to see the progression more. And our neurology center was one of the leading neurology centers in the nation with Alzheimer's research. And I would say to my father, you need to bring her down to our office. And my mother would not. She wouldn't travel because she was disoriented and would become belligerent. She just was. And so my father just said, okay, we're not going to come down. Looking back now, she was probably too progressed for much of the new medicine to help her anyway.

They had a good doctor through the health system they were with, but it just wasn't Memorial's neurology. Dr. Leahy is amazing. Oh dear Lord, I can't imagine my life without her. And so that just continued to progress.

And then my sister, five years ago, she was a pediatric nurse at MSU. I noticed that she was overwhelmed a lot. So I couldn't tell what it was, but when she was forced to retire from MSU for her memory loss, I was like… and she was 58. I said, we need to get you into neurology.

​She came to neurology, but she didn't see Dr. Leahy. She saw one of the other neurologists. And Dr. Leahy, to be honest, is the one neurologist that really specializes in Alzheimer's. She saw another neurologist, but they did the testing, and she passed with the current testing available at that time. And she didn't need to come back because she didn't test positive for anything.

They didn't have the DNA test at that time. They didn't have the tau blood test. They didn't have the comprehensive cognitive test at that time. They just had the general tools, and she passed all of those. So then, as time progressed and modern medicine continued to grow at Memorial Neurology, we got her back in 2024. And Dr. Leahy did diagnose her with Alzheimer's, and she started on Leqembi. She's getting an infusion every two weeks, and she's getting better. Is her disease going to be reversed? No. But its going to stop that progression.

I took her to a new primary care at Memorial. She was going, because she worked at MSU, in the Lansing area. And I said, “No, I'm here. We're going to have this collaboration of care between you and Memorial primary care.” And I brought her to Dr. Somo. 

ALLIÉ: I love Dr. Somo. 

JAMIE: And we got her on a GLP-1 because that helps the brain also, the neurons. The brain of an Alzheimer's patient looks very similar to a brain of a diabetic, with the neurons being insulin resistant. I've done a lot of research.
And we got her on a GLP-1, and she's feeling fantastic. And we're doing regular visits. She's coming over, and we're doing arts and crafts together, and I'm building her self-esteem, and we're on the road to a much better life.

That is amazing. She really helped my father a lot because she was retired. Toward the end of my mother's life, she would go up and stay with my father and help him. But let me tell you, my father is a saint. My mother lived a beautiful life. She suffered, yeah, yeah. And she went peacefully.

ALLIÉ: And that's all any of us can ask for, I suppose, is the way that we go and for her to go that way.

JAMIE: Now there's a new world for those new patients with new cognitive impairment, new opportunity. And I told my mom, when she goes away, and my father, because of the caregiver role, that there's a new life, there's a new opportunity for these patients. And I so want the world to know about this.

ALLIÉ: Well, and before we had started recording this conversation today, you mentioned that all-important word, hope, and to know that it exists there. And what you just mentioned, like, will this cure it and make it go away? No. But to stop the progression.

I hear you because living with MS myself, no, I can't cure it yet, but there's still hope. You can control the symptoms. You can manage the symptoms. You can do the best that you can. You just have to make the choice to do so.

JAMIE: And I love your slogan, “Because I Can.” 

ALLIÉ: Right? That's what we do. We do what we can because we can. And I want to talk about what you have done because you can. So when you started noticing changes in your own memory, having already seen what your mother had gone through, having seen your sister's symptoms, you were initially told everything was fine.

JAMIE: My primary care did not do anything wrong. My message out there is that I was still passing the primary care test. I just would not be able to come up with a common word, and I would be stumbling, and my friends would finish my sentences for me. And I'm thinking, I'm not nervous. I've been doing this for 44 years. I'm not nervous. What's going on?

I let it go for a couple of months, and I thought, no, I'm going to go because I have it being so strong in our family. And my uncle, my father's uncle, died in his 60s of Alzheimer's. So we have it on both sides.
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​JAMIE: So I went to primary care and was told it was negative, and I didn't settle for that. When somebody's told in primary care that their cognitive test is normal, they're going to think, oh, I'm just getting old, or I'm just nervous, or I'm not getting enough sleep, or whatever it is. They're going to brush it off, and I have to stop that.

So I did get in to see Dr. Leahy late last year, in the fall of 2024, and she did the comprehensive cognitive test. The new one the NIA is doing but still not being done in primary care yet because it takes too long. It takes 15 minutes.

ALLIÉ: It doesn't seem like much.

JAMIE: So I failed it. And she ordered the lab work, and my elevated protein tau came out positive. My protein tau came out positive, and my DNA came out positive. I had to go to U of M in January a year ago. I had my PET scan. Matter of fact, it was a year ago today.

ALLIÉ: No way. Okay, goosebumps.

JAMIE: Anything over 30 centiloids, we all have plaque in our brain, but anything over 30 particles, and they're called centiloids, is abnormal. I had 80. Dr. Leahy called me at home and told me. And I said, okay. She said, come back in, and we're going to talk about your options. So I went back in.

Let me tell you, this experience has been nothing but fine. I'm fine. And she is amazing. Her team is amazing. It's been nothing but a chapter of my life, maybe a couple chapters. Seriously, it hasn't been devastating because, thank God, I wasn't diagnosed until now. Having the diagnosis now, there's hope.

And I made a decision to start on Kisunla. There are two drugs. My sister's on Leqembi, and I'm on Kisunla. And I started it in February of last year, and I'm to have my 11th infusion next week. My head is clear. I don't forget my words anymore.

Dr. Leahy is going to do a PET scan on me January 30 and expects my centiloids will be at a normal level. So, disease reversed. Yeah. And I'm going to go on Leqembi, the other drug, for maintenance with auto-injections at home to prevent any new growth.
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​ALLIÉ: That is amazing. Early intervention, early intervention, right? There's a reason they say timing is everything.
So let's talk about today. Let's talk about where you are today. The fact that you speak with hope about travel, love, time with your gorgeous grandchildren. As someone that is living proof of what early diagnosis and treatment can make possible, what do you want others to hear if they feel afraid to ask the next question about their own health?

JAMIE: I went to a lunch-and-learn with Dr. Leahy where we had a huge community show up. It was last August or September, and it was on memory, Alzheimer's disease. I sat next to two friends from work whose mothers have Alzheimer's disease too. And they both said to me, I'm too afraid to know.

And I said, you just attended an hour-long educational session of hope, of treatment, and the earlier the better. And they both said, I'm going to go home and talk to my family about it. And I'm like, it's my brain. It's my life. I don't care what their input is.

I love my family to death, but it doesn't matter what their input is. I have to take care of myself. We are of no value to anybody until… Who's your best friend? My best friend is me. How about you?

ALLIÉ: Maybe I should rethink that.

JAMIE: We have to take care of ourselves before we're good to anybody else. Yeah, I thought that was a crazy reply, but to each his own. I respected that, but that's why I went and got tested.

ALLIÉ: Well, there's a fear of the unknown, but there's also the fear of knowing.
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JAMIE: Oh yeah. The earlier you know, the better. We're always apprehensive to go get a mammogram or cancer screenings because what if. The earlier you know, the better.

ALLIÉ: And to know that this isn't a death sentence. This is a sentence, and there's another one to follow and another after that. The earlier you start finishing those sentences, the sooner you can start writing the next ones.

JAMIE: Yes. My message to people who are afraid is there is such great science and medication and a bright future with earlier diagnosis. Even if you wait a couple of months or six months, still go. They may not be able to reverse it, but they can stop the progression. My sister was three years in. I know everybody's disease progresses at a different rate, but go. And I always say, schedule your appointment now because it takes months to get in to see Dr. Leahy. Get it on the books. Make it happen.

Don't be afraid. Life… Don't be afraid of life. Don't be afraid of living.

ALLIÉ: I always say there's nothing I'm afraid of except not trying. I'm afraid of not trying. We're cut from the same cloth, Jamie. Sisters from another mister, I don't know. But thank you so much. This is very close to me as well, with members of my family that I've lost.

Going back to where we first began this conversation, it's those memories you love making, building snow forts and throwing snowballs. When I had those same memories that those close to me couldn't remember, to save those moments, to save those memories, isn't it worth finding out so you have the opportunity to protect what you don't want to lose?

JAMIE: Yes. And we have Mimi Papa Camp every summer. Last year was year two, so this July will be year three. And every Christmas, their 12th Day of Christmas present is a photo album of Mimi Papa Camp, just for them, with their pictures.

There are group pictures too, but my husband was assigned the photographer job this year, and he did such a fabulous job because I'm too busy having fun. I'm terrible at pictures because I'm in those pictures.

I told my grandchildren this year that my dream is to have Mimi Papa Camp until the day I die. “You're going to be 40 years old, flying in from New York, and we're going to meet in Traverse City. And by gosh, we're having Mimi Papa Camp.” And they went, “We're there.” ∎