From WXXI news.

This is Connections.

I'm Evan Dawson.

Our connection this hour was made in Cape Cod, where a man was on a routine trip to drop off garbage at the dump.

He got out of his vehicle, dropped off the trash, and then turned around.

His yellow Jeep four door was right there in front of him.

And yet somehow, Greg O'Brien's brain would not tell him that this was his car.

The car he had driven for thousands of miles.

He knew he could call his family for help, but the problem in that moment was more than just the Jeep.

He realized he could not recall how to get home on a different occasion.

He had been driving a road he had known his entire life.

He saw and a red and white sign at an intersection, but his brain did not register that this was a stop sign, and he blew through it.

Other cars blared their horns, but there was no collision.

Thank goodness.

Just another reminder that every day a person with Alzheimer's can have moments of forgetting or losing recognition.

The remarkable part of Greg's story is that he is documented for the world to read and hear.

Greg is a decorated journalist who became a caregiver for his mother when she was diagnosed with Alzheimer's.

In fact, Greg writes that Alzheimer's took his maternal grandfather, his mother, and his paternal uncle, and before his father died, he too was diagnosed not with Alzheimer's but with dementia.

So after a head injury at the age of 59, Greg was diagnosed with early onset Alzheimer's.

He said that it frankly scared the hell out of him, but he also knew how isolating it could be.

So we set out to write about it.

Greg's diagnosis was 17 years ago.

Back in 2014, five years after the diagnosis.

Greg published the book on Pluto Inside the Mind of Alzheimer's.

Here's a little bit about the title of his book.

Greg says, quote, my advice to anyone is to show love.

Love is shown in body language.

It is shown and touch.

It's shown in how you care.

Let patients know that you care and let them know that they're not alone.

That's why I called my book on Pluto, because it's the perfect metaphor for Alzheimer's and the desolation and the isolation.

I had to invent a place for when I drifted out, which I do, so I could go and tell people where I was.

And I'd say to people, I'm on Pluto.

That's what it was like.

You just drift.

End quote.

Greg has been featured on PBS and many other networks.

He's going to be in Rochester for an event at Saint John's next week, and we're going to tell you all about that.

But first, he's joining us this hour on Connections.

Greg's a career journalist, the author of On Pluto.

Greg, welcome to the show.

Thank you for making the time for us today.

Well thank you.

So some introduction.

I don't think my mother could have done better.

So I'm going.

Well, that is a lovely thing to hear, but the book is very powerful.

Your work is powerful.

And I want to introduce the guest who we have with us in studio as well.

Tom Harner is director of marketing at Saint John's, which is hosting the event.

Tom welcome back.

Nice to see you.

Thank you.

And welcome to Doctor David Gill, chief of the Division of Cognitive and Behavioral Neurology at the University of Rochester.

Medicine.

Thank you for being with us as well, doctor.

Thank you.

So, Tom Harner, why don't you start by telling us a little bit about what's coming up next week?

There's a couple of events on one one on Wednesday, one on Thursday.

Yeah.

So, we've Saint Johns, we've worked with a number of, other community organizations.

Lifespan of Greater Rochester, Nazareth University, University of Rochester, aging Institute on core chorus.

Really, a collection of groups that support caregivers.

So we've done caregiving events, over the past few years.

We connected with, with Greg earlier this year.

And it's just been kind of amazing, talking to him and and coordinating things with him.

But we have two events next week.

One is at Nazareth University.

It's a panel event, on November 4th at 4 p.m.. It's called The Conversation on living with dementia.

With faith, hope and humor, which you'll hear a lot about from Greg today.

And then our, more caregiver focused about is the next day, November 5th, on Thursday.

It's at 1:00.

It's at our brick stone by Saint John's community, and it's called walking Together dementia, caregiving and Community.

And it's so going to be very caregiver focused.

Greg's going to tell his story.

And we're going to have a lot of, resources available as well.

Both of those events are free and open to the public.

Free of charge.

We ask for, folks to register.

But they are free.

We're going to have registration information in the show notes for this program once it posts.

And just as a way of sort of understanding terms.

I want doctor David Gill just to tell us a little bit about when we say dementia, when we say Alzheimer's.

I want to have a little context here for what we are talking about.

Doctor, the floor is yours.

It's a it's a good question because we in medicine really don't do a great job of explaining dementia versus Alzheimer's disease.

And oftentimes it's very confusing for people when they're told they have one or the other.

For the most part, the term dementia is then not a very helpful term.

It just means bad memory, bad enough that somebody can't live their life.

And though I were to make a top ten list of the causes of dementia.

The top seven are Alzheimer's disease.

So what I mean is the vast majority of causes of bad memory as we age, it's Alzheimer's disease.

And so that's by far the most common cause of dementia.

And we now have amazing techniques to make diagnoses and we should be trying to use the most specific terms we can when we make these diagnoses.

Well, I want to start with Greg by asking a little bit about, a little bit about my own apprehension and interviewing you, Greg.

I haven't had an interview like this where I have a decorated journalist who has done such a meticulous job of telling their own story, of a progression of a disease.

Your book is now 12 years old, and in reading your book, I felt compelled to ask you about certain things that happened.

And if you forgive me for asking a clumsy question, I don't know if we sit here.

If you if you recall incidents that you wrote about in your book 12 years ago, if you can kind of draw upon those.

How sharp you feel.

How are you doing these days?

I'll start by asking you that.

How are you?

It's taken us course.

I mean, there's all sorts of points of view on it.

I was at both my parents deathbed from Alzheimer's, my dad from dementia, and, it it, just watching her go further into the weeds.

But defying this, the stereotypes which are wrong about this disease.

I got a call when, I have notes here, so I hope that's okay.

Absolutely.

Yes, sir.

Absolutely.

Well, I can't I can't pull it out of my head or any other place in the body.

That's a joke.

And some of the laughs that they muscle like that.

I try to have Guma and all this because.

How do you get through it?

But, I, I got a call a couple of years ago.

My mom was in a nursing home nearby, and we're very close on Cape Cod.

And the nurse said, your mom is really scared.

And, I went down to to see.

I'm curious to what the doctor thinks, but I saw this firsthand.

I went down to see her, and she was asleep.

Beautiful Irish woman in her 80s, and she had ten kids.

And, you know, an O'Brien and a Brown and, and she was very lovely, smart.

She was asleep, and I tapped her on the shoulder and I said, mom, I, I hate to wake you up because I knew the nurse told me the hand is here.

And, you know, I've seen all times with my mom.

It took 20 years.

So I know they're different points of view, but with a lot of people I've known, it can go 20 years if you're diagnosed early.

And she, defying the stereotypes.

She woke up and said, Greg, I'm glad you're here.

And that was the first time in eight months she could remember my name.

And, and she wanted to talk, and, I had.

And I realized something was happening here, and I had put a framed photo of her father, my grandfather, who died of old timers at the foot of the bed.

And, I just, you know, I know people.

I'm Irish Catholic, but I have a strong faith.

And, I felt his presence in the room, and I said, wow, something's about to happen.

And I talked to my mom a little bit.

And, you know, as she fell asleep, she got up.

I got up to leave.

She woke up and said, Greg, where are you going?

And I've written about this in my book.

And I realized this is hard to talk, but I realized she didn't want to die alone.

And so I stayed with there, held her hand.

She closed her eyes.

I kissed her on the forehead.

She never woke up again.

So there are different journeys in Alzheimer's, and I know a lot of people like to think it's one journey.

It isn't.

I can tell you from experiencing with my family, so I don't know if that's helpful or not.

It's certainly is.

When you talk about stereotypes about Alzheimer's, can you describe to us what you think the stereotypes are and where we might be wrong?

Sometimes?

Well, okay.

I took, one biology course in high school and, had to go to summer school.

Okay, so I wasn't a student, so that give you my sense?

I, I, I know because I've seen it in my own family.

It affects people in different ways.

And that's probably the simplest declarative sentence to say.

It's not one size fits all.

It depends on if you have a fight in you, the heart in you.

My mom taught me, and this is a little on the spiritual side, so I hope it doesn't offend anyone.

My mom taught me how to write and speak from the heart.

Just looking at my notes here.

And, in life, people will always say, tell me what's on your heart.

And, and and she she taught me how to find that place of the heart, and I would I brought Pluto from the heart, which is a Tamayo spiritual way.

And I be typing and looking down at the keyboard, and I look up on the screen and I would say, where did that come from?

I'm not that good.

And, it's a spiritual thing with me, so but it isn't with everyone, and I understand.

I'm just answering the question you asked me.

I appreciate that.

We're talking to Greg O'Brien, whose book is called On Pluto Inside the Mind of Alzheimer's.

He's coming to Rochester for a couple of events next week.

His diagnosis of Alzheimer's was 17 years ago.

He was 59 years old and got an early onset Alzheimer's diagnosis.

And that.

Can I just real quick?

Yeah.

I, and the doctor, I'm sure would know this.

I've had a serious head injuries, head traumas that I should have died from.

And, the last one was, I went for a bike ride with my son, and went up to see my mother in the throes of Alzheimer's and, you know, people and life savers.

I'm the same way I overdress in the summertime because I, you know, I think it's cold.

And she got upset and said, you know, Connor had to wear a winter coat.

It's like 84 degrees.

So get back on the bike trail.

And I was riding and, I was all time can take you back to your childhood lease with me.

I can't remember things in an instant.

My wife will tell you that, but I can.

I can focus back on my childhood.

And I was riding the bike.

Connor was behind me.

I had his jacket on the handlebars, and something in my heart said something bad is about to happen.

And with seconds the jacket, slipped off the handlebars, went into the spokes and threw me ten feet in the air.

I landed, got my hand and my hand hit, my head hit and my hand kind of flew away.

And then my head hit twice.

And, I had a serious head injury that the doctor said I shouldn't have, lived through.

And there are doctors and, good friend of mine, Rudy Tanzi at Harvard is is a good friend.

You know, they they will say that I had it.

And when you look at football, a head injury will not cause Alzheimer's.

But if you're just predisposed to get it, it could bring it on sooner.

And you saw the history of my family and I also have the ApoE4 gene and, it's just different for people.

So I don't mean to Haga at the time.

No, I want to turn to the doctor in studio to elaborate a little bit, because we were talking before the program began about the fact that Greg, had has had two major head injuries.

He has a family history of dementia.

And I was asking the doctor before the program, this is important for all of us to hear our head injuries connected to dementia, Alzheimer's, etc.

they are a little bit, just as he was saying, that having a head injury may or may not start the process of Alzheimer's disease, but it may bring it on sooner.

And truthfully, there's a lot about head injuries and injuries we don't know.

The good example of that is the NFL, the data coming out of, the head injury results.

And it does increase the risk of a certain type of dementia called CTE.

And we don't know if that's in some way related to Alzheimer's disease or not.

But there's a lot we don't know about head injuries due to the brain.

And briefly, we'll we should talk about CTE on a separate day.

I think that I saw I didn't read deeply.

I think I saw, someone share information, doctor, about CTE last week that the newest studies we get, the prevalence seems to be going up, up, up in deceased NFL players when they can study the brain.

Is that true?

Yeah.

The study that came out just Wednesday of this week was this week shows that even taking into account biases of who donates their brain, between 60 to 75% of all NFL players may have CTE.

Wow.

Which is an astonishing rate and something we need to be very aware of as we approach, football at all ages.

Okay.

And so, doctor, to be specific then for the audience who are they might be thinking about their own history.

They might be thinking about a parent who had a fall or a head injury, or they might hear Greg talk about the ApoE4 gene he had, he carries two copies, which my understanding increases a lifetime risk of developing Alzheimer's by more than 90%.

But people will hear this and say, okay, if I've had a fall, do I need to be tested?

If I should, I just do the ApoE e4 gene or a genetic testing?

Should we all do that?

Can you take us through a little bit of how we should make those decisions?

Yeah, and I want to take a step back and think about what are the risk factors for Alzheimer's disease, because it really informs what we can do to lower our risk.

Head injury is one of them.

But in addition, all the things increase the risk of heart disease, diabetes, high blood pressure, high cholesterol, being overweight increase the risk of Alzheimer's.

And there are other risk factors, too that are modifiable that we can address right now in midlife or early life and reduce our risk later.

And so I think the bigger picture is, not just avoiding head injuries, but many of these things may reduce our risk substantially and may even prevent Alzheimer's at a number of people.

And so just having a head injury or having diabetes doesn't mean you're going to get Alzheimer's disease.

And so I think the key take home message for most of us should be if we're worried about it, we have one of these risk factors.

If we're concerned about our memory, then we should talk to our doctor to be screened.

My instinct in talking to Doctor Gil before the program, I said that my instinct after reading about Greg story was to think, well, why don't we all just get this genetic testing to see if we've got these genes?

It's also not quite that simple.

Do you want to weigh in on that?

It's true.

Having apiary testing in particular, can tell us that we have an increased risk but doesn't guarantee we're going to have it.

And so we often advise people against getting testing for that reason.

But the other reason to avoid genetic testing is it has huge implications for us, even if it's normal, it affects our ability to get life and long term care insurance later in life.

And so there's all sorts of implications to being tested besides what the results tell us about our own health.

Okay.

I mean, this is the stupid question portion of the interview.

Why can't I, doctor, say I want the genetic testing, but I want it private and I don't want it shared with insurance.

There actually now are companies.

You can do that.

Okay.

You know, 23 and me or those other companies are good examples.

They test some of these genes and you can search them out privately and do it, and it does not show up in your medical record.

Of course, you know, what does that mean for you medically?

If it's positive and you don't have a doctor who's ordered it.

But there are ways to do that now.

Okay.

Again, these are things that we'll probably explore on a separate program, because I know a lot of people have these questions.

What we have to do now is take our very short first break of the hour, and we're going to come right back.

We're talking to Greg O'Brien, a career journalist.

He's the author of On Pluto Inside the Mind of Alzheimer's that tells not only his family story and history of Alzheimer's, but his own documenting of his Alzheimer's.

His diagnosis came now, 17 years ago at the age of 59, with early onset Alzheimer's.

He's coming to Rochester next week.

He'll be a guest, among others, of Saint John's, and Saint John's has a couple of events.

He'd love to see you and Tom Harner's here.

Doctor David Gill is here from University of Rochester.

Medicine.

We'll come right back on Connections.

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This is Connections.

I'm Evan Dawson.

We're talking to Greg O'Brien about his book, his life, his Alzheimer's.

And, Greg, I want to give you some space, if you don't mind, to talk a little bit about what you hope we, as caregivers will take from your experience.

I read a little bit from in the introduction of your council for caregivers to, to recognize that Alzheimer's can be very isolating, that you can feel like you're on Pluto, that you're adrift.

But to not be afraid to still embrace, show touch, show love.

What do you want to make sure caregivers understand, especially as you have now?

You're 17 years into a diagnosis.

Well, absolutely everything you just said I, I don't know if it was good or bad for me, but, I was the caregiver for both my mom and dad, so I, I saw it and as the symptoms were coming on, me and, I was able to talk to my mom when she was, you know, drifting out.

And I remember the time I was emotional.

Talk about it.

I held her hand, looked her in the eye, and I said, mom, I know you're scared.

You remember that little girl, Virginia Brown, who wrote the bicycle down to Rye Beach in Rye, New York?

She's still inside you.

She's still there.

And I think, people, I just wrote I write for Psychology Today a lot.

I wrote a piece about Drive by.

A drive by is when someone says, I'm there for you, but they're really not because I don't want to go deep.

And my my advice is for people to try to become more sensitive and talk to the person.

Because if you let the person and are curious what the doctor says, if you let the person sit there alone, they drift.

So I think communication in ways that is simple, simple, declarative sentences, as we say in journalism, is the way to do it.

And hand-holding, touching.

That's I don't think you have to do more than that.

Well, let's ask the doctor a little bit about, some of Greg's comments there.

Go ahead doctor.

I think those are great pieces of advice, which is to be, direct and short, but also to be connected and loving in ways that aren't verbal.

So touch is a great example of that.

The other, I think, helpful, piece of advice I've gotten from caregivers over the years is to live in the past or the absolute moment.

What I mean by that is talk about things that happened many years ago.

The person is much more likely to remember, because Alzheimer's disease tends to affect recent memories and not remote memories from many years ago, or do something in the moment.

So look at a magazine or a photo album and talk about what's in front of the person in that moment.

Both those styles of communication can be really, productive.

Greg, we hear a lot about the power of music.

I was listening to a podcast series that you did with a colleague about five years ago on forgetting, and in in one of the episodes, you were struggling to remember the word for iPhone.

You struggled to remember the word for podcast.

And I understand day to day those little frustrations can pile up for you.

Are there things that you can do that that ground you again?

That get you off Pluto, that gets you sharper?

And and I'm wondering if music is in that category or not.

I think, music is, I don't have a great singing voice.

The nuns told me I had a terrible voice, but that's just a joke.

But, I I'm sorry.

What's your question again?

That's okay.

Your humor took us off course.

That's good.

Now, Greg, I'm wondering when you do feel like you are as you write in the book on Pluto, that you're adrift.

You can't perhaps remember a word or, what your task is for the day.

Are there things that can happen that get you back to being sharper, that that get you refocused, or get your mind fresher and and stop you from drifting?

Yeah, you you have to fight and often again what the doctor thinks I'd like to hear.

Be helpful to me when I drift.

I'm not really certain that I'm drifting, but I'm not in the present.

Does that make sense?

And, And I have this vacant stare.

And what?

My wife, who's in the other room listening.

She's a tremendous caregiver.

But, you know, she'll come over, hold my hand, and say, Greg, come on back.

And, And I think that's what you do.

There are times when, if I'm drifting, I can't come back and, Because I'm drifting on things that happened years ago that I like, that give me joy because there's no joy in this.

And I think you guys know, I also have, prostate and chest cancer and been operated on.

But, I think this for caregivers, you know, I talked about the touch.

When they're with someone who is drifting, come over and hold their hand.

Give me a hug.

That might be enough, because that way it tells them that they're not isolated.

Because when you drift, you're isolated.

And simply that's.

I know that's not medical, but that's what I would suggest.

And I'm sure the doctor has a better answer.

Doctor, what do you think?

Well, a number of good points as well.

One is that when we're having a conversation, are we need to be able to hold a thought in our head as we get distracted and come back to it, and that's a form of memory.

So that's very difficult for somebody with Alzheimer's disease.

But there are many things that can trigger a memory a smell can, music can touch can.

So those are really effective techniques.

That Greg mentioned.

And when it comes to caregivers, this is all of this I think is really valuable, powerful counsel from Greg and I. I want to give Tom a little space as the director of marketing at Saint John's.

You have your event next Thursday really is targeted a caregivers.

So what are you picking up from Greg's book and from Greg's experience?

Oh, so, so much, we've also one of the pieces of this event series is there's been a, there's been a, virtual book club.

So we've, a group of folks from life span, and caregivers, in the Rochester area have been talking about, his book and reading his book, talking about his book and talking about the takeaways.

And, you know, there's been, you know, people have said there's such intimacy in his writing.

And one person, who was supporting a caregiver, said that, you know, I have this husband or I have this friend whose husband is, is has Alzheimer's disease.

And reading this book and getting Greg's, perspective helps me figure out what kind of questions I need to ask her to support her.

So, I mean, it's just, there's been a lot of great, and it's just very inspiring.

Now, talking, coordinating with Greg, over the past few months, I've been kind of amazed.

He may.

He must have some systems in place.

For, you know, making sure that, you know, he's doing the things that he wants to do because I'll get emails from him saying, hey, you were supposed to get me this information.

You know, what about this that we're doing?

And he, you know, he he's been keeping me on my toes, and it's been really.

There's just, it's really been inspiring.

And he, That's my trusty laptop.

Tom.

Yeah, I have, I've been reduced to making as a journalist, so don't be over impressed.

I have files and I go in and there are questions and I call them up, but that's that's what I have.

I have to write everything down.

But whatever you're doing is working because, we're we're in a good place.

Well, I'm actually going to build on Tom's point there with a question for Greg.

First of all, Greg writes so beautifully about his family, about his wife and his children, and about what it is like being part of a large family, working through Alzheimer's.

There's a lot of Alzheimer's and dementia in Greg's family, as we've been talking about, and I know he credits his family in in many, many ways.

But I also wonder if a part of the reason that we're sitting here today having a pretty sharp, impressive conversation with Greg, 17 years after his diagnosis of Alzheimer's, is because he set out to write about it.

I, I have this idea, Greg.

I don't know if you agree.

I've been watching my father, who's in his 80s, really struggle with cognitive decline, and I have not seen my father show the fire and the effort that you have shown.

My father is much more withdrawn, and he's much less active with what he he's a great writer.

He was a lawyer for years, but he's a great writer.

He doesn't really write anything anymore.

He reads a lot.

I look at you and I say this is somebody who, at 59 years old, took on a new project, and you researched and you interviewed and you thought about your own experiences, and you wrote and you edited.

That is I'm not the doctor in the room, Doctor Gill.

Well, we'll talk about this, but that I think that has to keep your brain really engaged and fired and, and firing.

Do you agree with that, Greg?

Do you think that has helped you stay as sharp as you are?

Yeah, but yet you have to work on it there.

There are times when I am, but then that that's when I relapse.

After that, there's only so much there available.

God gave me a good brain and, and God gave me the ability to write.

And I feel that having seen both parents and then having other family members die, I learned through them the need to fight.

My, my mom fought.

She was a fighter.

And, and she was on the same track as me.

And she taught me at the end.

It came quickly.

But, you have to get up every day and fight it.

And, you know, I use this analogy.

I have it written here is my mind when I get up in the morning, is all over the place, and it's like, because I'm an old guy here, like a file cabinet.

So I went into my file cabinets and through all of the, the, the, what's the word files on the floor?

I had to pick them all up and put them back in the file cabinet.

And that's what my day is like.

But I've learned and again, I know some people like to hear this.

Some people may not.

I give credit to God.

I'm just telling you.

And, and I'm the most imperfect guy ever going to make.

Greg, you you need to make no apology for citing your faith.

I will.

We we are just here to learn from your experience, and we appreciate that.

I will ask Doctor Gill a little bit about the idea that for nearly two decades now, here's someone who has taken his journalistic talents and he's poured them into documents, experience writing articles for Psychology Today, writing a book.

I mean, there's no perfect way to measure this, but do you think that that has helped him stay sharp?

Oh, absolutely.

We know that no matter how old somebody is, or even if they already have memory problems, there are things they can do to maintain their brain and slow down the process.

So the big three are being active physically, mentally and socially.

And the more intensive each of those that you do, for the most part, the more beneficial.

So tackling a book project like this is incredibly mentally challenging.

I think is a great example of the effect that it can have.

I have a note from Alicia named Tom who's really appreciating this conversation and wants to ask a little bit about, how we as families approach family members with early onset Alzheimer's, Alzheimer's, dementia and talk about safety issues.

So I'm going to tell the story that I read in Greg's book.

We'll see if Greg wants to talk about this, and then I want to relate it to maybe what Doctor Gil would also say.

It is never an easy decision for any family to decide, you know, is it safe for someone to drive?

Are they safe doing certain activities?

In Greg's book, he describes an incident in which he is on a riding lawnmower.

He's got a big lawn.

I think he has an acre and he's mowing.

And then was compelled, for whatever reason, to drive it to a neighbor's, but he has to drive it and cross a very busy road, 50 miles an hour.

A lot of traffic.

And cross is not into perfect, another perfect set of grass and lawn, but, you know, almost breaks the mower.

Going and going through some weeds and thicket.

And then he mows the neighbor's lawn in nice, neat rows, and the neighbor is probably stunned and dropped off a thank you card.

And then I think a Christmas card, but was probably confused.

And, and then Greg got admonished by a friend of his who works in law enforcement and said, I don't want to see you in a, an a riding lawn mower on a busy traffic road ever again.

And as a reader, I laughed at the story because it's told.

Greg is such a good writer, but I can also relate to how that might have been a really frightening experience for him or loved ones.

Greg, have you had to make decisions over the years on whether you drive, when to stop, how to do activities that are safe?

Can you talk?

Is that something you think you can talk about?

Yeah, I, I had to get my license up years ago.

I think you know that.

Or maybe.

Yeah, maybe you don't know.

I do, it, it in the beginning, I went through that intersection.

There was a scarier thing.

I'm driving on a road on in Brewster, and there's a crosswalk, and there's a girl walking across the crosswalk, and my mind would not tell me that there was someone there until the last minute.

Oh, when?

When that happened, my doctor was my best friend.

And the police chief is my best friend.

I told him, look, I know where this disease is going.

I've seen it in my family.

And, I'm giving up my right to drive.

And, And there was another time before that when I was driving back at my notes here I was driving back from Boston to Cape Cod late at night after a meeting.

And my mind, my mind told me, we're going home.

So I said, okay, so I'm driving at 2:00 in the morning from Boston.

I'm not far from Rye, New York, where I grew up.

And I realized then that my mind was telling me to go home.

And home is Rye, New York.

So I had to turn around and drive all the way back to Cape Cod.

I realized then that this is a horrible disease.

Doctor Jill, I admired Greg grabbing this hard issue on his own and saying, I need to stop driving.

I also understand why many people might fight to keep the right to drive, even if their loved ones think they're not safe.

Is there a way to navigate this?

A different way to know where that sort of that line is crossed?

Not an easy one.

And the driving discussion is one that we really always dread because it's so difficult.

It's such a form of independence for most of us.

For many people, it's critical for their daily life.

If you live in a rural area, there's often no public transportation.

So both a sign of independence.

But ability to function in life totally change.

If you can't drive, there's very little that we can do in the office setting that will prove whether somebody's safe to drive or not.

So are you having a conversation with somebody without real good information, whether it's safe or not?

Making a huge decision about their next step in life?

And so there are ways for us to figure that out with driver's evaluations, which we often recommend.

But it's a big decision, a difficult one, and almost never a happy one.

Greg's story about realizing, oh, he's got to go home to Cape Cod, not Rye, New York, is not all that uncommon in that people with Alzheimer's have described all of a sudden being compelled to drive back to a childhood memory.

Why is it the deeper memories are in?

I'm going to use the word embedded or remain more accessible, as opposed to more recent term memories with Alzheimer's.

Do we know it's likely that our long term memories get changed into a fact?

Like we learn the sky is blue, long term memories change to something that's more like a fact, and it's much more stable over many years.

And our short term memory system isn't needed anymore.

It's that short term memory system that's injured by Alzheimer's disease.

So once things get out of that system into effect, they're not affected as much by Alzheimer's.

So all of those remain.

And our recent memories kind of go away.

So we live in the past.

We think all those things are more recent.

Remarkable.

Let's take our last break of the hour.

It's a very short one.

We're coming right back in studio with Doctor David Gill, who's chief of the Division of Cognitive and Behavioral Neurology at University of Rochester.

Medicine.

Tom Harner is director of marketing at Saint John's.

Saint John's will be hosting our third guest this hour.

Who's joining us remotely?

Greg O'Brien, a journalist and the author of On Pluto Inside the Mind of Alzheimer's.

He's coming for a couple of events next week.

We'll come right back on Connections.

Support for your public radio station comes from our members and from zealous Blue Cross Blue Shield, working with members to find health coverage for every stage of life, helping to make care and coverage more accessible in more ways for more people across the Rochester community.

Details online at Excel USB, CBS, dot com and Mary Carey Ola center.

Proud supporter of Connections with Evan Dawson, believing an informed and engaged community is a connected one.

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In Puerto Rico, the cost of electricity is almost double what people pay on average in the 50 states, putting a squeeze on families who say they have to choose between electricity and food.

We can just save money for pay the bills.

We just trying to survive that story.

On the next All Things Considered.

From NPR news.

This afternoon at four.

This is Connections.

I'm Evan dawson.

Peter.

Shares this, A listener named Peter writes to the program and says, I appreciate this program, especially that four years ago, I was diagnosed with MCI mild cognitive impairment.

And then this past year, with the beginning stage of Alzheimer's, I just wanted to mention to you that the entire issue of Scientific American for last month was on Alzheimer's because of the huge number of people, and, threats it poses to our society.

So, Peter, thank you.

Hope you're doing well.

It's good to hear from you.

Best wishes.

Certainly best wishes to you and your family.

And, he's talking about the huge number of people it affects.

So, doctor, how many people just.

Do we know how many people Alzheimer's affects?

Well, if if we're 60 to 65, about 5% of us will have Alzheimer's disease.

If we're lucky enough to reach the age of 90, really over half of us will have either Alzheimer's disease or the beginning of that, which is mild cognitive impairment.

And is there a well?

Is there a in the next decade or so, do you see a lot of change coming with how well we either treat diagnose intervention.

Are there changes foot.

Yeah.

After many, many years of not a lot of advances, the past three years have been amazing.

We now have three very accurate tests for Alzheimer's disease a spinal tap, a fancy brain scan called an amyloid Pet scan, and now a blood test.

And we now have two medications that are IV or injection medicines that slow down the process of Alzheimer's disease.

So a really dramatic change that is probably just the beginning of much more advance, which is really quite exciting.

Why would anybody with the option of a blood test get a spinal tap?

They really shouldn't know.

Okay.

Are they equally effective tests?

The three that you described?

They're all above 90%.

Okay, so they're all very accurate.

Okay.

Yeah.

Blood tests for me.

Thank you very much.

No spinal taps unless absolutely necessary.

Years ago, I had a pet.

I had a Pet scan years ago, so I had doctors right on target.

Okay.

So there's a place where there's change.

And Tom, as the director of marketing at Saint John's.

Can you describe, just in general, how prevalent Alzheimer's is in the community where you work and what you see in terms of creating comfort, space and healing is the wrong word.

Therapy, help, etc.. Yeah.

So in, at Saint John's home, our skilled nursing home and, and probably most nursing homes, this is the case.

It's estimated that probably around 80% of the folks who live in nursing homes have some form of dementia.

Different degrees, different stages of the disease.

Yeah, there's, you know, everybody's kind of different as far as, how that affects their daily life.

And, you know, we have lots of support, for residents and their, their caregivers as well.

It's, you know, music.

It's music is up.

We mentioned that before.

Music is always a big one.

You know, but really, it's it's getting to know the, the person on a, on a deeper level and understanding what kind of things make them tick.

So it's really personalized care plans are really the thing that makes, makes us able to support them best.

Really getting to know them and the, the things that they enjoy.

Things that we need to stay away from and an independent living side.

We have, some folks who, who have, various levels of dementia.

Usually it's, it's folks living with their with their loved one, with their spouse.

And there's, there's supports there, too.

Social work elder advocates to help connect them with, additional support services that they need.

Remind people that the two events next week, there's an event on Wednesday and an event on Thursday.

They're both free and open to the public.

We're going to have links to pre-registration if you want to attend or if you know someone who should attend on the show notes for the show when we post it.

What's coming up?

Well, Wednesday, November 4th A conversation on living with dementia with Faith, hope and humor.

That's a panel discussion at the Otto Schultz Community Center at Nazareth University.

And then Thursday, walking together dementia, caregiving and community.

November 5th.

That starts at 1:00 at our stone by Saint John's community.

We have a lot of partners involved with that, including WXXI.

Beth Adams is going to be involved, as as a moderator of a question and answer session with Greg after he, gives his speech.

That's interestingly, when we first talked with Greg and we weren't sure exactly what he would want to do.

He talked about he said, hey, how about you tell me what you want me to talk about, and I'll put together a 45 minute speech.

So that's what he's planning to do.

And then we have, you know, other resources there to support, caregivers who who attend, but also to support Greg.

You know, caregiving is really a community effort.

So we cover a lot of books on Connections, and this one is going to stay in our library.

I'm holding it up now if you're watching on YouTube.

Greg's book is called On Pluto.

And you know how every author wants to get a good blurb.

He got, like, two of the best blurbs I've ever heard.

Greg was called.

First of all, I love this one from David Shenk.

Alzheimer's messed with the wrong man.

And then this one.

Greg is the poet laureate of Alzheimer's.

It is an incredible thing to say about somebody, but the book is so raw and honest and it for us is unusual.

We talked before the program at Connections.

We've talked about Alzheimer's a lot.

We've talked about dementia a lot.

We've never had a conversation like this.

And I, I want to ask a question that feels delicate, but Greg speaks so openly, and I saw an interview that Greg did in 2019, in which he talked a little bit about his prostate cancer and about how he viewed the fight to try to stay present with Alzheimer's.

He said, quote, Greg, here's what you said.

You said, I have prostate cancer, which I am not treating.

It's my exit strategy.

I'm in this fight because it's taken my family, but I'm also in this fight for my kids and for everyone's kids.

End quote.

Can you tell me a little bit more about how you've dealt with cancer diagnosis, how you associate that with also having Alzheimer's and the decisions that you're making?

Yeah.

There times when I want to give up.

Okay.

More and more.

Now, for the first time on this journey, I'm really scared.

And so, I believe I'm going to heaven, so that's not a bad place.

But then I think of who I leave behind, and I need to fight for them because that's.

That's what I'm supposed to do.

So it it, there are moments when, there was once or twice where, I guess I could say it.

I was on a sidewalk.

I had gone to a bank to try to get a loan, and the banker knew me, and I said, look, with your record, we can't give you a loan.

Greg and I go, okay, I understand.

And it was at night and it was drizzly.

This is on Cape Cod.

And, I was walking, just walking aimlessly.

And I kept hearing on my mind, you're worthless.

You're piece of shit.

You shouldn't be in this world.

And, And I know I'm just going to say it, but I got to the point where, I started to step off a curb into cars, and I don't know how to explain it, but something pulled me back, and that was the beginning.

And I'm just telling you what happened.

People can draw their own impressions.

And, you know, I've learned what I want to read one quote here.

I love Ernest Hemingway, and I've used it a lot where Ernest Hemingway says the world breaks everyone and afterwards some are strong in the broken places.

And I hope everyone listening will try to be strong in the broken places in life.

In so many ways, what you're describing is heartbreaking.

But I also respect you so much for being willing to talk about this, Greg, because you have written that when your mom died, you resolved with your own Alzheimer's not to let it push more people into the shadows, that you'd have a lot of experience seeing how isolating it is.

I think just being honest about those feelings of almost giving up or thinking about giving up, I'm sure they are natural, and I'm sure they're more common than people let on.

And I think you're going to help a lot of people.

As we get ready to wrap this hour, I'll take one other question.

David wanted to know if, if you still read a lot, Greg, do you do you take pleasure in reading?

And does that help you?

Yeah, I do, in writing, you have to read a lot, so it's just instinct and, I but here's the downside.

As a journalist, I'm reading about the news, and that is depressing.

And and, well, in some ways, I'm not politically, politically, and, in the middle, I have no party affiliation.

So, but, I'm in the middle, but at what's going on in the world in all ways depressing.

And let me just ask you one more question, Greg.

And then we're going to let you go.

I was curious coming into this interview, I hadn't heard an interview with you for the last five years, so I didn't know how you'd be feeling and how you're doing, and I'm just.

I'm not saying this to you in a sort of, again, sort of genuflect or boost you up.

I'm just telling you honestly, I'm absolutely blown away by how well you're doing.

Do you feel like you're doing well?

Are you doing, are you living well?

I do you feel like your progression is what you thought it might be at this point?

All those years ago when you were first diagnosed?

Because to me, you look great.

You sound great.

Well, it comes and goes.

There are times when, I aimlessly walk out of the house.

There are times when, and my, my wife is, And the doctor would know this, and I'm in rage just at the moment, as, a jock played baseball, football in high school and college.

I've I've learned it life to get up to the game.

But there are times after that's done, whatever is available up here is.

And so I'm going to do the interview, I get up for it and I just go out and do your job.

So, these things, this takes stuff like this takes a lot out of me, but I look at maybe if someone's listening, it could be helpful.

So, Absolutely.

I'll be on the back side.

I'll be on the backside the rest of the day, so.

But that's okay.

If it was helpful, you know, it's it.

And maybe the sports analogy is something that people could relate to.

You rise to a higher level.

And, I learned that playing sports, I'll also say you look to me like someone who's got plenty and cognitive reserve, which is a topic that I know is important here.

Do you want to say a little bit about, how you try to navigate and improvise in hard moments when maybe your mind or your memory isn't giving everything that you need?

Are you are you still able to kind of go into cognitive reserve to kind of get through moments?

Sometimes.

Not always now.

But that's why I write everything down, on my laptop and, I, you know, I notes and, I send myself emails, okay.

And text.

So at the end of the day, I look at my inbox and emails, I'm like, oh, geez, I got 30 emails.

And then I look at a 25 year from me and I let it.

No, no memory of sending, no memory of sending them.

But the point was, if I didn't send it, it would be lost.

And that's what's happening to me now.

And I think the doctor understands that I'm losing things and seconds and seconds I have no I, I'm working off notes today.

I have very little short term memory now.

And that's what's scaring me.

And that's coming on stronger and stronger and, loss of self loss, a place not I had to ask my wife the other day, the names of her brothers and sisters and the names of my brothers and sisters, I couldn't remember, I didn't know, and I was embarrassed to ask, but I had to.

This was just days ago.

Well, I love the idea of emailing yourself.

I actually email myself as a journalist all the time of things I want to read or not forget to to follow up on.

But how vital for someone like Greg 30s doctor, can you train yourself to have that kind of cognitive reserve or that that improvizational skill or some other technique to try to to keep touch?

Yes.

There's two, two points there.

One is the more we do, the more active we are, the more cognitive reserve we have.

But the other is we can learn new organizational tips and tricks like the emailing yourself.

Those can be incredibly, helpful, no doubt about it.

Well, I want to thank our guests here.

And, Tom Harner at Saint John's have great events next week.

Thank you for sharing the time for us.

And thank you for facilitating this conversation with Greg.

The events are Wednesday and Thursday caregivers event on Thursday.

All the information is going to be at our website or wherever you find this podcast.

We'll put it in the show notes for you.

Thank you very, very much for making the time.

Pleasure.

I want to thank Doctor David Gill, chief of the Division of Cognitive Behavioral Neurology at the University of Rochester.

Medicine, thank you for your expertise.

I thank you for having me.

Greg O'Brien, to you.

Thank you, doctor.

Thank you so much.

Thank you Greg, thanks for sharing the hour with us.

You've earned a nap or a walk or whatever you want, but I just want to say thank you for all the help that you're providing to people.

Thank you Greg.

All right.

Love you guys.

Take care.

Awesome.

What an amazing, amazing guy.

This is one that I hope we'll all be thinking about for a long time.

From all of us, the Connections.

It's been an outstanding week here.

Thank you for being with us.

Thanks for listening.

Thanks for watching.

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