March 28, 2025 • 30 mins
February is Heart Month, so to get some valuable heart health insights, we talked to
Dr. Ameya Kulkarni – President, American Heart Association and member of the Greater Washington Region Board of Directors, who's also the Associate Medical Director for Kaiser Permanente...and Krysta Pearce, an AHA ambassador and cardiac Survivor.
More more info and to donate, go to: goredforwomen.org and heart.org/dc
Dr. Ameya Kulkarni – President, American Heart Association and member of the Greater Washington Region Board of Directors, who's also the Associate Medical Director for Kaiser Permanente...and Krysta Pearce, an AHA ambassador and cardiac Survivor.
More more info and to donate, go to: goredforwomen.org and heart.org/dc
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:08):
Hey, good morning, Happy Sunday. Thank you for listening to
this iHeartRadio station in the nation's capital. Time Now for
community d C Jenny Chase, catching up with my friends
from the Alzheimer's Association, the National Capital Area chapter. We've
got Laura Byer with us once again, program manager for
the Alzheimer's Association, and Sarah Harris and Alzheimer's Association support
group leader, also volunteer at Alzheimer's Ambassador to Senator Mark Warner.
(00:32):
She has a very, very very personal story to share
on this subject.
Speaker 2 (00:36):
Ladies, Hello and welcome.
Speaker 3 (00:37):
Jenny, thank you for having.
Speaker 1 (00:39):
Me and Sarah. It is such a pleasure and an
honor to meet you. Thank you to you as well.
Speaker 3 (00:43):
Ma'am.
Speaker 4 (00:43):
Oh, you're very welcome and I am happy to be here.
Speaker 1 (00:47):
Laura, you and I have spoken before, but for those
maybe who haven't heard our chats, let's if we can
give an overview of both Alzheimer's and dimension.
Speaker 5 (00:58):
Alzheimer's is is a subset of dementia, meaning that Alzheimer's
is a type of dementia, and it is the most
common type of dementia. Seven in ten who have dementia
have Alzheimer's. However, there are also one hundred different types
(01:21):
of dementia, including frontal, temporal, and lewy bodies. Alzheimer's and
all other forms of dementia are not normal parts of aging.
They are a disease that affects the brain, the synapses
(01:41):
that are being transmitted, and affect short term memory. Generally,
we look for Alzheimer's in people sixty five and older.
As you age, the likelihood of getting Alzheimer's increases significantly
every five years. Today we're talking about younger onset Alzheimer's, right,
(02:06):
and that is what we mean when somebody under the
age of sixty five has Alzheimer's, and in fact, people
in their forties and fifties can develop Alzheimer's, and that
is very confusing because it is not the first thing
that the doctor's going to look at. These are people
(02:28):
that are in the prime of their life, often working,
taking care of children, taking care of older parents, so
getting a diagnosis becomes even more complicated.
Speaker 2 (02:40):
Now, let me ask you this.
Speaker 1 (02:41):
If we could go back to when my father passed
last year, Alzheimer's wasn't the primary cause, but he had
been diagnosed, and it was extremely scary for me as
his daughter. I do want to touch quickly on the
hereditary aspect, Laura, but he had what was called vascular dimension.
Speaker 5 (03:00):
A lot of people that have dementia have what we
call co morbidities, so they have issues with for example,
they might have dementia, but also diabetes. They might have
dementia and also issues that relate to the heart.
Speaker 1 (03:18):
That's what my dad had. Yet he had congestive heart failure.
And I mentioned the hereditary aspect. Can you speak to
that a little bit?
Speaker 5 (03:24):
Well, what I can tell you is that people that
have early onset, there is a very small.
Speaker 3 (03:33):
Subset of those that are due to genetics.
Speaker 2 (03:37):
Okay.
Speaker 3 (03:38):
For example, we know that there's.
Speaker 5 (03:40):
A community in the country, Columbia where almost everybody in
that area develops Alzheimer's and that is due to a
genetic component. Aside from that, there is no greater risk
of getting early onset due to a genetic factor.
Speaker 1 (04:00):
Okay, so let's say, let's use me as an example.
I don't mind putting this out there. I am fifty six.
What what I want to look for in thinking that
maybe younger onset is what I'm experiencing. Are there specific
things you know that you can pinpoint or just are
we talking in general?
Speaker 2 (04:18):
My memory is just starting to falter.
Speaker 5 (04:21):
What we would look at is and it would be
useful for you when you go for your yearly doctor's appointment. Yes,
to ask your doctor to start doing baseline testing so
that they have a point of comparison. What to look
for is different with every person, and what you look
(04:42):
for is behavior that is different from what.
Speaker 3 (04:47):
It has always been.
Speaker 5 (04:48):
Okay, So for example, somebody that's fastidious and keeps the
calendar and knows when their appointments are and then suddenly
that is not happening. That would be a somebody that
is a clean break and is suddenly a pack rat,
somebody who is going to a local grocery store and
(05:13):
that suddenly cannot remember how to get there or go
someplace and can't remember how they got there or why
they're going there.
Speaker 2 (05:25):
Thank you for that, Laura.
Speaker 1 (05:26):
I think this would make sense to transition into you, Sarah,
and again, thank you for being here. I hope that
this is well, This isn't too upsetting or triggering for
you to have this discussion with us. I really appreciate
you being willing to talk about what you went through
with your husband. Are there some specific symptoms that you
noticed that you thought, this is off, this is not
(05:48):
like him.
Speaker 4 (05:49):
Yes, there are several things that happened, and I will
share them with you. Ernie and I had only been
married for two and a half years when I began
noticing some unusual behaviors, and he was only fifty three.
Speaker 2 (06:01):
At the time.
Speaker 4 (06:03):
He was becoming more confused, and because we had just
been married, I probably wasn't picking up on things that
I might have had we've been together longer. So I
blamed a lot on him getting used to my children.
My daughter was actually in college, she was twenty when
(06:23):
he was diagnosed, and my boys were eight and twelve,
so I kept making excuses in my mind. And he
also had lived on a boat before we'd gotten married,
and on the check bag space, so that was different
as well. So there were some life waltering changes. But
then I started noticing other things that at first were annoying.
(06:48):
That's like, why doesn't he understand what's happening. For instance,
we'd be playing board games and he had no idea
which way to go on the board. He forgot how
to play I mean nay, thing as simple as parties Monopoly.
He couldn't add numbers up when we were playing yachtsty
He was no longer able to play cribbage. Just little
things like that. He was having difficulty turning the TV
(07:11):
on and off, which was becoming really frustrating for him
changing the channel, and there were things that they say
that are annoying. And then one day I was out.
He was supposed to be making spaghetti sauce. He loved
to cook, and I asked him if he would put
things together and start simmering, which is what I thought
I would smell spaghetti saucem simmering when I opened the door,
(07:34):
and all I could smell was raw onions. He had
chopped everything and put them on eat stacks all over
the counter. This was shocking because he often cooked and
knew how to make spaghetti sauce. And driving became a problem.
He had a little fender bender and he couldn't react
quickly enough to avoid hitting somebody. He was driving the
(07:57):
boys one time and turn left on the wrong side
of the divider in the middle of the road. Fortunately
no cards were coming, but this caught the attention of
the boys and they wasted no time telling me what
had happened. As soon as they got home. So my
anxiety was starting to heighten because it was more than
(08:18):
annoying behaviors, that was now safety. And also he'd leave
for work often and then a half an hour later
he'd show back up because he'd forgotten to take some
of his essentials to work, so he'd have to come
home and get them, for instance, his cards so he
could actually get into the building. He was also seeming
more tired, which I think goes along with a disease
(08:41):
at the beginning, because they focused so much on trying
to be okay, to pay attention to everything, and it's
something that I don't even think people are.
Speaker 2 (08:51):
Aware of that wears it out.
Speaker 4 (08:54):
It really does. So denial was a wonderful thing for
a long time, but becoming increasingly worried, and I considered
talking to his co workers, but decided not to do that,
hoping maybe nobody was noticing that he was having difficulties,
(09:14):
but of course they were, and eventually I received a
phone call and a supervisor called saying he was unable
to do his work, and it was not a surprise
to me, but it was still a shock to hear
somebody actually voice what I was seeing. So we were
sent to a therapist through his work, and she was
(09:37):
The premise was to rule out depression or health issues,
which might would have been a whole lot easier to
deal with than Alzheimer's. But at the end of this
one appointment we had with the therapist, she yeah, sometimes
it is hard to talk about it, but she turned
it brings it. No, it's quite all right, because this
(09:58):
is why people will maybe be able to get diagnosis sooner.
But she said to me, well, I think it's either
a brain tumor or Alzheimer's. You know. At that point
I started to panic because I was open for a
brain tumor because that might be able to be fixed,
and I knew patients with Alzheimer's there's no cure.
Speaker 3 (10:17):
So three weeks later.
Speaker 4 (10:19):
He was actually diagnosed with Alzheimer's, and I had started
reading about Alzheimer's. His day of diagnosis was his last
day of work. I knew that many of the behaviors
that were being described in what I was reading, or
behaviors I was seeing with him. As I said, he
(10:39):
was only fifty three, so he was way too young,
and it seemed how could this possibly be true? The
two of us. Our life and our world was changing,
and I had no idea what it was going to
be like. But we moved on and took each day
as it came. So yes, timers did cross my mind,
(11:01):
and that was something that I think I had been
trying to avoid.
Speaker 2 (11:05):
You have my most heartfelt condolences. You know.
Speaker 1 (11:08):
I was able to spend time with my dad as
he was progressing, and my stepmom lived with him every day.
I saw him a couple times a year, So as
hard as it was for me and my brother, I
can't you know, you try to put yourself in the
shoes of someone who was dealing with it on a
regular basis. It's really really heartbreaking that you had to
(11:31):
do that. So again, I'm so sorry. How did your
role as a wife and a mom change? If you can,
you know, put that into words.
Speaker 4 (11:40):
Our family dynamics changed. The moment Ernie was diagnosed, I
was grieving. I grieve for what wasn't going to be
happening in our lives. I grieve for our future together,
you know, for us, say, for our family. Our future
had vanished at that point, and it was really hard
(12:03):
knowing I had no idea what the future was going
to bring You know, you think of Alzheimer's is losing
the keys. It's far more than that.
Speaker 1 (12:11):
My step mom she basically again, my dad was dealing
with the memory loss, but he had so many other
issues facing him. She became a full time caregiver, which
was something she had no experience in prior. So was
that where you had to move towards was being the
caregiver twenty four to seven?
Speaker 2 (12:32):
Well, yes and no.
Speaker 4 (12:33):
I also, since he'd lost his job in his day
of diagnosis, I also had to work and make sure
that I was home for the children. And so I
was able to do part time jobs so that I
would be here when the children got home, would be
home when the children got home from school. So I
was doing childcare after school, I was teaching during the day,
(12:54):
and I was even cooking for an organization a couple
of days a week. I made sure I could do
things that would not take me away from the family.
Ernie was also going to.
Speaker 3 (13:08):
Daycare.
Speaker 4 (13:09):
You know, I find like you know, after having talked
with the Alzheimer's Association, got a lot of information from them.
So as far as our marriage, our marriage changed. I
had to pick up more responsibility as far as making
all the decisions, both financial and caring for him. The
financial was really difficult because I was very worried about money,
(13:32):
what was going to happen. And although Ernie wasn't a child,
he was rapidly regressing and he needed help getting dressed, bathing, changing,
eventually even feeding him and helping him to drink a
glass of water. I was finding that Alzheimer's is a
(13:52):
very lonely disease because people are around, but they don't
know what to say or do either. Years ago, I
was one of those people. I would kind of avoid
situations that I was uncomfortable with because I didn't understand.
So I think this is one of the reasons that
I'm happy to share things that have happened in my
(14:14):
life because maybe it will help other people.
Speaker 1 (14:16):
Let me if I can ask Laura for some statistics.
Do you have any idea how many people currently are
in our country are facing younger on set.
Speaker 5 (14:27):
I can tell you that there are upwards of seven
million people that currently have Alzheimer's. It is more complicated
to get a diagnosis when you're younger, because it's not something.
Speaker 3 (14:41):
That's top of mind for doctors.
Speaker 5 (14:43):
Sure, so when you come in, they're going to be
looking for a lot of other things.
Speaker 2 (14:47):
Yeah, like we had.
Speaker 5 (14:49):
Mentioned earlier, and so as a loved one with somebody
who is facing changes, it's really important to work write
those down as you see them, and accompany somebody to
the doctor and ask for a baseline cognitive test so
(15:11):
that you can get a point of reference and in
fact that will help make a diagnosis easier.
Speaker 2 (15:18):
Thank you, Laura Sarah.
Speaker 1 (15:20):
I wanted to talk about your work with the AA
support group, how you got started, what you currently do,
just what that entails overall.
Speaker 4 (15:29):
Yes, that's something that I think. Support groups are very
very important. I called the Alzheimer's Association the day after
Ernie's diagnose and they gave me information to read. They
told me about Alzheimer's related offense and support groups and
spouse the support groups. We tried to spousal groups, but
that was really confusing to Ernie. He had no idea
(15:52):
why we were there. He had no idea. Really, he
knew he had Alzheimer's, but he had no idea what
it involved or how it was really affecting him. But
the support groups for me were very important. But I
was forty three and I was in a support group
with people who were in the sixties, seventies, and eighties.
So they were worried about me because I had the
(16:14):
young children and I was working, and how was I
taking care of the day to day things. And so
I was also concerned about them because they were older
and how could they deal with all the things that
they were required to do with a spouse with Alzheimer's.
So with the younger people and the older people, it's
(16:35):
the same disease, but it manifests a little bit differently,
and the it goes much quicker. But the support group
was so important to me, and I had been asked
by the association if I would be willing to run
a support group. I just couldn't say yes until after
he had passed. It was too raw for me to emotion,
(17:00):
and also I couldn't leave the children, and at that
point he was still at home when they had first
asked me, and he passed in less than five years.
But once he did two months later, I was ready
to take on the responsibility of a support group for caregivers.
And I realized that it was a specialty to do
the younger onset group because they were very few and
(17:23):
far between, and especially nearly thirty years ago, Alzheimer's wasn't
There was not as much known about Alzheimer's as there
is today. And so the people I'm talking to in
the support group, the people with Alzheimer's, have lost their jobs,
a lot of people at children at home, So it
is a totally different disease. But the best part is
(17:47):
we can listen to each other as others are navigating
through the disease. I understood what they were talking about.
Everybody gets a chance to share what's happening in their lives,
you know, the good and the and the challenging, and
we all would understand each other and have helpful hints.
(18:07):
Have you done this? Have you done that? Have you
talked with an Alpha Kira attorney? Have you reached out
to this? You know? Is your loved ones still driving?
Just all the things that are concerning as time goes on.
Mostly we understood each other and we could laugh and
we could cry, and both happened. It was cathartic.
Speaker 1 (18:27):
Yes, that is a word that I used a lot
this past weekend with my stepmom as we talked about
her husband and my dad. Is there anything else you
would want to share Sarah before we talk about some
upcoming events with the Alzheimer's Association.
Speaker 4 (18:42):
Yes, even though telling the children was not easy because
they were worried about what Arnie was going to do,
They were worried about money, They were would we have
to move? Can the friends still come and play? They
were children and that was just so important to me
that everything continued as normally as possible. But of course
(19:03):
we know normal was no longer part of my life,
the life of my family, and it was also Alzheimer's
is a lonely disease, and I'm sure your stepmother can
talk about that too, because people, as I said earlier,
don't know what to sing or do. But in spite
of all the hard things that happened, there were some
very special moments. Ernie loved to play the piano, and
(19:28):
for a long time he was still able to do that.
And the heartbreaking moment came when we sat down on
the piano bench one day and he looked at me,
he looked at his hands, he looked at the keys,
and then he said, I don't know how to do
this anymore. But he was able to sing, even though
he'd lost the ability to communicate in other ways. He
(19:50):
was still able to sing. He knew I was a
special person in his life. You know, he'd light up
when he would see me often. But the other thing
that he loved to dance. He was a dancer, not me.
If he would hear music and we were together sometimes
some of the facilities would have special events and he
(20:11):
would pull me in his arms and dance. And we
were at a my daughter's wedding actually, and afterwards the
DJ came over and said, I've really been watching the
two of you dance. And I said, well, I'll tell
you something. He has Alzheimer's disease, but this is the
one thing he can do from the past that people
(20:34):
can't tell that he still has the disease. And that
was a very special moment for me, and it was
a little thing that kept me going. I guess I
can say it was a very long goodbye, because each
every once in a while you realize things weren't like
(20:55):
they were yesterday, last week, or last months. The one
thing I can say is my family survived. We survived
this ordeal of living with somebody with Alzheimer's disease. We
took care of him to the best of our abilities,
and you know, we're here to talk about it, so
hopefully people can understand some of what it is like
(21:17):
living with the disease on a day in, a day
out basis.
Speaker 1 (21:21):
I am sorry. I was just visiting with my stepmom
last weekend. It was my dad's first birthday since we
lost him.
Speaker 2 (21:30):
And I'm so sorry, thank you.
Speaker 1 (21:33):
But we made sure to do all of the things
that they used to do together. We went to the movies,
and he loved to eat Mexican food, so we went
out and had Mexican food and we ate ice cream.
And I'm sitting here and I'm imagining YouTube dancing and
I'm so touched. Thank you for being willing to share
that with us. Let me grab a tissue and try
to compose myself.
Speaker 4 (21:52):
I totally understand.
Speaker 1 (21:54):
Yeah, Laura, let me regroup here. You guys have a
big community forum coming up. Can we talk about that
little bit? Also, we want to talk about the riding
al Let's jump into those totally.
Speaker 5 (22:05):
Before I do that, I want everybody to know that
we have a lot of different support groups and support
in this area. Many are online, some are in person.
To get that information, please go to www. Dot ALC
Forward slash NCA dot org on our website. There are
(22:28):
all of our support groups. We have some that are
specifically for people in the Sandwich generation, which would be
those who are caring for a loved one and their
own children. Then we have one that is in Spanish.
We have all kinds of support groups, so please look
(22:49):
for that. They're all free and all wonderful ways to
connect with groups that are caring for loved ones with Alzheimer's.
We have a program coming up that's free everybody on Wednesday,
April twenty third at noon about navigating Life with an
early onset diagnosis, and so to register for that, you
(23:11):
would call our helpline one eight hundred two seven to
two thirty nine hundred and say that you're interested in
the Navigating Life with Early onset Alzheimer's diagnosis on Wednesday,
April twenty third at noon and they will register you
and send you a link. And our speakers are going
(23:32):
to be a Nova Health System neurologist, doctor Jennifer pol Day,
and then Karen Fagan, who was our health systems director,
who's going to talk about how healthcare systems are changing
to provide more wrap around care for those with a
diagnosis of Alzheimer's.
Speaker 3 (23:53):
So this will be online.
Speaker 5 (23:55):
It's going to be on zoom and when you register
you will be sent the links. Also wanted to mention
that we also have a bike ride you raise money.
It's called the Ride to End All and it is
a bicycling event that will be held Saturday, May third
(24:17):
in Leesburg, Virginia, and one hundred percent of all proceeds
will support Alzheimer's and dementior research.
Speaker 3 (24:26):
To learn more about.
Speaker 5 (24:27):
That, you would go to alz dot org, Forward slash
r id DC Ride d C. And we are so
excited to have Iheart's Hot ninety nine point five as
a media sponsor.
Speaker 1 (24:46):
Yes, everybody here at iHeart is super pumped up about
the Ride to End alz The area Walks to End
Alzheimer's will be coming up later this year. We'll talk
about plenty about that in the future. Ladies, any final
thoughts before we wrap up, and just please let me
reiterate what a pleasure it has been to speak with
you both this morning.
Speaker 4 (25:05):
Just again, thank you for having me.
Speaker 5 (25:06):
Thank you, Jenny, and you have just done so much
to help raise awareness and let people know about our
resources and We're so grateful.
Speaker 1 (25:14):
No no thanks necessary, but as you know, this is
a cause that has become very near and dear to
my heart. Alzheimer's Association, the National Capital Area Chapter, many
many resources available at alz dot org, Forward slash in CA.
Speaker 6 (25:30):
There's danger out there. It lurks on highways and quiet
neighborhood streets. It's more likely to kill you than a
shark and more terrifying than the biggest snake. Distracted driving
claims lives every day. Every notification, swipe, social post, video
or selfie while driving risks your life. So while you
might think public speaking or the zombie apocalypse is scary,
(25:51):
what's really terrifying and even deadly is distracted driving. Eyes Forward,
Don't Drive Distracted brought to you by NITZA and the
AD Council.
Speaker 7 (26:01):
For some children, a single surgery can turn an untreated
cleft into a smile for life. But at Smile Train,
we understand that most children.
Speaker 8 (26:14):
Need a little extra care. They need nourishment to ensure
they grow healthy and strong. They need a confident voice
so they can express themselves clearly. They need emotional support
and counseling to help them navigate the challenges of school
(26:34):
and home life, and they need orthodonic and dental care
to make sure their smiles light up the room as
brightly as possible. Visit SmileTrain dot org to learn how
smile Train is supporting the cleft community with lifelong smiles.
Smile Train changing the world one smile at a time.
Speaker 9 (27:01):
This is a chef of love Chef Genard, TV hosts
and restaurant tour. My grandparents harvested they're land to sell
food and share this overflowing bounty with our community. Grandma said,
for every yam we pick, we get one away in
the world they cultivated. I love preparing and eating dinner
with my family on Sundays. When our resources changed, food
(27:23):
assistance programs sustained us. They gave me fuel to start
my first culinary business at sixteen years old and inspiration
to donate the extra food in my community. Through my life,
I've developed an appetite to work with others to ensure
everyone has access to the nutritious food we need to thrive. Together,
(27:45):
we can help in hunger. Come on join the movement
with Feeding America by volunteering, donating, and advocating. Learn more
at Feeding America dot og Slash Act now brought.
Speaker 10 (27:57):
To you by Feeding America and the Eye Council.
Speaker 11 (28:00):
Life is filled with many paths, but for Native American children,
the most important path is the one that leads them
out of poverty.
Speaker 12 (28:09):
It's a path that led me here to Saint Joseph's
Indian School. It's where I came to grow and learn,
find care, love and support, stay healthy and safe, and
make friends that last a lifetime.
Speaker 11 (28:26):
For almost one hundred years, Saint Joseph's Indian School has
been giving Native American children a path out of poverty
through education, love and support, and ninety six percent of
Saint Joe's students graduate high school. That's ten percent higher
than the national average.
Speaker 12 (28:45):
Saint Joseph's Indian School is our path to a bright
our future.
Speaker 11 (28:54):
Learn more at stjo dot org.
Speaker 13 (28:57):
Today at heros so telepsta machica non as Traffico de
colon vito and actor paras as formiliar USASKI.
Speaker 2 (29:15):
Completo in traffic project to lose Maria elect Council.
Speaker 10 (29:30):
Every tried balancing a dozen eggs in one hand, or
hopping on one foot, or maybe juggling cats while riding
the unicycle. Sounds ridiculous, right, But guess what. That's exactly
what texting about.
Speaker 3 (29:41):
Driving is like.
Speaker 10 (29:42):
Your human brain only has the capacity to focus on
one thing at a time, So when you're behind the wheel,
give driving your undivided attention. Don't drive distracted. A message
brought to you by the National Highway Traffic Safety Administration,
Project yellow Light, and the AD Council
Hey, good morning, Happy Sunday. Thank you for listening to
this iHeartRadio station in the nation's capital. Time Now for
community d C Jenny Chase, catching up with my friends
from the Alzheimer's Association, the National Capital Area chapter. We've
got Laura Byer with us once again, program manager for
the Alzheimer's Association, and Sarah Harris and Alzheimer's Association support
group leader, also volunteer at Alzheimer's Ambassador to Senator Mark Warner.
(00:32):
She has a very, very very personal story to share
on this subject.
Speaker 2 (00:36):
Ladies, Hello and welcome.
Speaker 3 (00:37):
Jenny, thank you for having.
Speaker 1 (00:39):
Me and Sarah. It is such a pleasure and an
honor to meet you. Thank you to you as well.
Speaker 3 (00:43):
Ma'am.
Speaker 4 (00:43):
Oh, you're very welcome and I am happy to be here.
Speaker 1 (00:47):
Laura, you and I have spoken before, but for those
maybe who haven't heard our chats, let's if we can
give an overview of both Alzheimer's and dimension.
Speaker 5 (00:58):
Alzheimer's is is a subset of dementia, meaning that Alzheimer's
is a type of dementia, and it is the most
common type of dementia. Seven in ten who have dementia
have Alzheimer's. However, there are also one hundred different types
(01:21):
of dementia, including frontal, temporal, and lewy bodies. Alzheimer's and
all other forms of dementia are not normal parts of aging.
They are a disease that affects the brain, the synapses
(01:41):
that are being transmitted, and affect short term memory. Generally,
we look for Alzheimer's in people sixty five and older.
As you age, the likelihood of getting Alzheimer's increases significantly
every five years. Today we're talking about younger onset Alzheimer's, right,
(02:06):
and that is what we mean when somebody under the
age of sixty five has Alzheimer's, and in fact, people
in their forties and fifties can develop Alzheimer's, and that
is very confusing because it is not the first thing
that the doctor's going to look at. These are people
(02:28):
that are in the prime of their life, often working,
taking care of children, taking care of older parents, so
getting a diagnosis becomes even more complicated.
Speaker 2 (02:40):
Now, let me ask you this.
Speaker 1 (02:41):
If we could go back to when my father passed
last year, Alzheimer's wasn't the primary cause, but he had
been diagnosed, and it was extremely scary for me as
his daughter. I do want to touch quickly on the
hereditary aspect, Laura, but he had what was called vascular dimension.
Speaker 5 (03:00):
A lot of people that have dementia have what we
call co morbidities, so they have issues with for example,
they might have dementia, but also diabetes. They might have
dementia and also issues that relate to the heart.
Speaker 1 (03:18):
That's what my dad had. Yet he had congestive heart failure.
And I mentioned the hereditary aspect. Can you speak to
that a little bit?
Speaker 5 (03:24):
Well, what I can tell you is that people that
have early onset, there is a very small.
Speaker 3 (03:33):
Subset of those that are due to genetics.
Speaker 2 (03:37):
Okay.
Speaker 3 (03:38):
For example, we know that there's.
Speaker 5 (03:40):
A community in the country, Columbia where almost everybody in
that area develops Alzheimer's and that is due to a
genetic component. Aside from that, there is no greater risk
of getting early onset due to a genetic factor.
Speaker 1 (04:00):
Okay, so let's say, let's use me as an example.
I don't mind putting this out there. I am fifty six.
What what I want to look for in thinking that
maybe younger onset is what I'm experiencing. Are there specific
things you know that you can pinpoint or just are
we talking in general?
Speaker 2 (04:18):
My memory is just starting to falter.
Speaker 5 (04:21):
What we would look at is and it would be
useful for you when you go for your yearly doctor's appointment. Yes,
to ask your doctor to start doing baseline testing so
that they have a point of comparison. What to look
for is different with every person, and what you look
(04:42):
for is behavior that is different from what.
Speaker 3 (04:47):
It has always been.
Speaker 5 (04:48):
Okay, So for example, somebody that's fastidious and keeps the
calendar and knows when their appointments are and then suddenly
that is not happening. That would be a somebody that
is a clean break and is suddenly a pack rat,
somebody who is going to a local grocery store and
(05:13):
that suddenly cannot remember how to get there or go
someplace and can't remember how they got there or why
they're going there.
Speaker 2 (05:25):
Thank you for that, Laura.
Speaker 1 (05:26):
I think this would make sense to transition into you, Sarah,
and again, thank you for being here. I hope that
this is well, This isn't too upsetting or triggering for
you to have this discussion with us. I really appreciate
you being willing to talk about what you went through
with your husband. Are there some specific symptoms that you
noticed that you thought, this is off, this is not
(05:48):
like him.
Speaker 4 (05:49):
Yes, there are several things that happened, and I will
share them with you. Ernie and I had only been
married for two and a half years when I began
noticing some unusual behaviors, and he was only fifty three.
Speaker 2 (06:01):
At the time.
Speaker 4 (06:03):
He was becoming more confused, and because we had just
been married, I probably wasn't picking up on things that
I might have had we've been together longer. So I
blamed a lot on him getting used to my children.
My daughter was actually in college, she was twenty when
(06:23):
he was diagnosed, and my boys were eight and twelve,
so I kept making excuses in my mind. And he
also had lived on a boat before we'd gotten married,
and on the check bag space, so that was different
as well. So there were some life waltering changes. But
then I started noticing other things that at first were annoying.
(06:48):
That's like, why doesn't he understand what's happening. For instance,
we'd be playing board games and he had no idea
which way to go on the board. He forgot how
to play I mean nay, thing as simple as parties Monopoly.
He couldn't add numbers up when we were playing yachtsty
He was no longer able to play cribbage. Just little
things like that. He was having difficulty turning the TV
(07:11):
on and off, which was becoming really frustrating for him
changing the channel, and there were things that they say
that are annoying. And then one day I was out.
He was supposed to be making spaghetti sauce. He loved
to cook, and I asked him if he would put
things together and start simmering, which is what I thought
I would smell spaghetti saucem simmering when I opened the door,
(07:34):
and all I could smell was raw onions. He had
chopped everything and put them on eat stacks all over
the counter. This was shocking because he often cooked and
knew how to make spaghetti sauce. And driving became a problem.
He had a little fender bender and he couldn't react
quickly enough to avoid hitting somebody. He was driving the
(07:57):
boys one time and turn left on the wrong side
of the divider in the middle of the road. Fortunately
no cards were coming, but this caught the attention of
the boys and they wasted no time telling me what
had happened. As soon as they got home. So my
anxiety was starting to heighten because it was more than
(08:18):
annoying behaviors, that was now safety. And also he'd leave
for work often and then a half an hour later
he'd show back up because he'd forgotten to take some
of his essentials to work, so he'd have to come
home and get them, for instance, his cards so he
could actually get into the building. He was also seeming
more tired, which I think goes along with a disease
(08:41):
at the beginning, because they focused so much on trying
to be okay, to pay attention to everything, and it's
something that I don't even think people are.
Speaker 2 (08:51):
Aware of that wears it out.
Speaker 4 (08:54):
It really does. So denial was a wonderful thing for
a long time, but becoming increasingly worried, and I considered
talking to his co workers, but decided not to do that,
hoping maybe nobody was noticing that he was having difficulties,
(09:14):
but of course they were, and eventually I received a
phone call and a supervisor called saying he was unable
to do his work, and it was not a surprise
to me, but it was still a shock to hear
somebody actually voice what I was seeing. So we were
sent to a therapist through his work, and she was
(09:37):
The premise was to rule out depression or health issues,
which might would have been a whole lot easier to
deal with than Alzheimer's. But at the end of this
one appointment we had with the therapist, she yeah, sometimes
it is hard to talk about it, but she turned
it brings it. No, it's quite all right, because this
(09:58):
is why people will maybe be able to get diagnosis sooner.
But she said to me, well, I think it's either
a brain tumor or Alzheimer's. You know. At that point
I started to panic because I was open for a
brain tumor because that might be able to be fixed,
and I knew patients with Alzheimer's there's no cure.
Speaker 3 (10:17):
So three weeks later.
Speaker 4 (10:19):
He was actually diagnosed with Alzheimer's, and I had started
reading about Alzheimer's. His day of diagnosis was his last
day of work. I knew that many of the behaviors
that were being described in what I was reading, or
behaviors I was seeing with him. As I said, he
(10:39):
was only fifty three, so he was way too young,
and it seemed how could this possibly be true? The
two of us. Our life and our world was changing,
and I had no idea what it was going to
be like. But we moved on and took each day
as it came. So yes, timers did cross my mind,
(11:01):
and that was something that I think I had been
trying to avoid.
Speaker 2 (11:05):
You have my most heartfelt condolences. You know.
Speaker 1 (11:08):
I was able to spend time with my dad as
he was progressing, and my stepmom lived with him every day.
I saw him a couple times a year, So as
hard as it was for me and my brother, I
can't you know, you try to put yourself in the
shoes of someone who was dealing with it on a
regular basis. It's really really heartbreaking that you had to
(11:31):
do that. So again, I'm so sorry. How did your
role as a wife and a mom change? If you can,
you know, put that into words.
Speaker 4 (11:40):
Our family dynamics changed. The moment Ernie was diagnosed, I
was grieving. I grieve for what wasn't going to be
happening in our lives. I grieve for our future together,
you know, for us, say, for our family. Our future
had vanished at that point, and it was really hard
(12:03):
knowing I had no idea what the future was going
to bring You know, you think of Alzheimer's is losing
the keys. It's far more than that.
Speaker 1 (12:11):
My step mom she basically again, my dad was dealing
with the memory loss, but he had so many other
issues facing him. She became a full time caregiver, which
was something she had no experience in prior. So was
that where you had to move towards was being the
caregiver twenty four to seven?
Speaker 2 (12:32):
Well, yes and no.
Speaker 4 (12:33):
I also, since he'd lost his job in his day
of diagnosis, I also had to work and make sure
that I was home for the children. And so I
was able to do part time jobs so that I
would be here when the children got home, would be
home when the children got home from school. So I
was doing childcare after school, I was teaching during the day,
(12:54):
and I was even cooking for an organization a couple
of days a week. I made sure I could do
things that would not take me away from the family.
Ernie was also going to.
Speaker 3 (13:08):
Daycare.
Speaker 4 (13:09):
You know, I find like you know, after having talked
with the Alzheimer's Association, got a lot of information from them.
So as far as our marriage, our marriage changed. I
had to pick up more responsibility as far as making
all the decisions, both financial and caring for him. The
financial was really difficult because I was very worried about money,
(13:32):
what was going to happen. And although Ernie wasn't a child,
he was rapidly regressing and he needed help getting dressed, bathing, changing,
eventually even feeding him and helping him to drink a
glass of water. I was finding that Alzheimer's is a
(13:52):
very lonely disease because people are around, but they don't
know what to say or do either. Years ago, I
was one of those people. I would kind of avoid
situations that I was uncomfortable with because I didn't understand.
So I think this is one of the reasons that
I'm happy to share things that have happened in my
(14:14):
life because maybe it will help other people.
Speaker 1 (14:16):
Let me if I can ask Laura for some statistics.
Do you have any idea how many people currently are
in our country are facing younger on set.
Speaker 5 (14:27):
I can tell you that there are upwards of seven
million people that currently have Alzheimer's. It is more complicated
to get a diagnosis when you're younger, because it's not something.
Speaker 3 (14:41):
That's top of mind for doctors.
Speaker 5 (14:43):
Sure, so when you come in, they're going to be
looking for a lot of other things.
Speaker 2 (14:47):
Yeah, like we had.
Speaker 5 (14:49):
Mentioned earlier, and so as a loved one with somebody
who is facing changes, it's really important to work write
those down as you see them, and accompany somebody to
the doctor and ask for a baseline cognitive test so
(15:11):
that you can get a point of reference and in
fact that will help make a diagnosis easier.
Speaker 2 (15:18):
Thank you, Laura Sarah.
Speaker 1 (15:20):
I wanted to talk about your work with the AA
support group, how you got started, what you currently do,
just what that entails overall.
Speaker 4 (15:29):
Yes, that's something that I think. Support groups are very
very important. I called the Alzheimer's Association the day after
Ernie's diagnose and they gave me information to read. They
told me about Alzheimer's related offense and support groups and
spouse the support groups. We tried to spousal groups, but
that was really confusing to Ernie. He had no idea
(15:52):
why we were there. He had no idea. Really, he
knew he had Alzheimer's, but he had no idea what
it involved or how it was really affecting him. But
the support groups for me were very important. But I
was forty three and I was in a support group
with people who were in the sixties, seventies, and eighties.
So they were worried about me because I had the
(16:14):
young children and I was working, and how was I
taking care of the day to day things. And so
I was also concerned about them because they were older
and how could they deal with all the things that
they were required to do with a spouse with Alzheimer's.
So with the younger people and the older people, it's
(16:35):
the same disease, but it manifests a little bit differently,
and the it goes much quicker. But the support group
was so important to me, and I had been asked
by the association if I would be willing to run
a support group. I just couldn't say yes until after
he had passed. It was too raw for me to emotion,
(17:00):
and also I couldn't leave the children, and at that
point he was still at home when they had first
asked me, and he passed in less than five years.
But once he did two months later, I was ready
to take on the responsibility of a support group for caregivers.
And I realized that it was a specialty to do
the younger onset group because they were very few and
(17:23):
far between, and especially nearly thirty years ago, Alzheimer's wasn't
There was not as much known about Alzheimer's as there
is today. And so the people I'm talking to in
the support group, the people with Alzheimer's, have lost their jobs,
a lot of people at children at home, So it
is a totally different disease. But the best part is
(17:47):
we can listen to each other as others are navigating
through the disease. I understood what they were talking about.
Everybody gets a chance to share what's happening in their lives,
you know, the good and the and the challenging, and
we all would understand each other and have helpful hints.
(18:07):
Have you done this? Have you done that? Have you
talked with an Alpha Kira attorney? Have you reached out
to this? You know? Is your loved ones still driving?
Just all the things that are concerning as time goes on.
Mostly we understood each other and we could laugh and
we could cry, and both happened. It was cathartic.
Speaker 1 (18:27):
Yes, that is a word that I used a lot
this past weekend with my stepmom as we talked about
her husband and my dad. Is there anything else you
would want to share Sarah before we talk about some
upcoming events with the Alzheimer's Association.
Speaker 4 (18:42):
Yes, even though telling the children was not easy because
they were worried about what Arnie was going to do,
They were worried about money, They were would we have
to move? Can the friends still come and play? They
were children and that was just so important to me
that everything continued as normally as possible. But of course
(19:03):
we know normal was no longer part of my life,
the life of my family, and it was also Alzheimer's
is a lonely disease, and I'm sure your stepmother can
talk about that too, because people, as I said earlier,
don't know what to sing or do. But in spite
of all the hard things that happened, there were some
very special moments. Ernie loved to play the piano, and
(19:28):
for a long time he was still able to do that.
And the heartbreaking moment came when we sat down on
the piano bench one day and he looked at me,
he looked at his hands, he looked at the keys,
and then he said, I don't know how to do
this anymore. But he was able to sing, even though
he'd lost the ability to communicate in other ways. He
(19:50):
was still able to sing. He knew I was a
special person in his life. You know, he'd light up
when he would see me often. But the other thing
that he loved to dance. He was a dancer, not me.
If he would hear music and we were together sometimes
some of the facilities would have special events and he
(20:11):
would pull me in his arms and dance. And we
were at a my daughter's wedding actually, and afterwards the
DJ came over and said, I've really been watching the
two of you dance. And I said, well, I'll tell
you something. He has Alzheimer's disease, but this is the
one thing he can do from the past that people
(20:34):
can't tell that he still has the disease. And that
was a very special moment for me, and it was
a little thing that kept me going. I guess I
can say it was a very long goodbye, because each
every once in a while you realize things weren't like
(20:55):
they were yesterday, last week, or last months. The one
thing I can say is my family survived. We survived
this ordeal of living with somebody with Alzheimer's disease. We
took care of him to the best of our abilities,
and you know, we're here to talk about it, so
hopefully people can understand some of what it is like
(21:17):
living with the disease on a day in, a day
out basis.
Speaker 1 (21:21):
I am sorry. I was just visiting with my stepmom
last weekend. It was my dad's first birthday since we
lost him.
Speaker 2 (21:30):
And I'm so sorry, thank you.
Speaker 1 (21:33):
But we made sure to do all of the things
that they used to do together. We went to the movies,
and he loved to eat Mexican food, so we went
out and had Mexican food and we ate ice cream.
And I'm sitting here and I'm imagining YouTube dancing and
I'm so touched. Thank you for being willing to share
that with us. Let me grab a tissue and try
to compose myself.
Speaker 4 (21:52):
I totally understand.
Speaker 1 (21:54):
Yeah, Laura, let me regroup here. You guys have a
big community forum coming up. Can we talk about that
little bit? Also, we want to talk about the riding
al Let's jump into those totally.
Speaker 5 (22:05):
Before I do that, I want everybody to know that
we have a lot of different support groups and support
in this area. Many are online, some are in person.
To get that information, please go to www. Dot ALC
Forward slash NCA dot org on our website. There are
(22:28):
all of our support groups. We have some that are
specifically for people in the Sandwich generation, which would be
those who are caring for a loved one and their
own children. Then we have one that is in Spanish.
We have all kinds of support groups, so please look
(22:49):
for that. They're all free and all wonderful ways to
connect with groups that are caring for loved ones with Alzheimer's.
We have a program coming up that's free everybody on Wednesday,
April twenty third at noon about navigating Life with an
early onset diagnosis, and so to register for that, you
(23:11):
would call our helpline one eight hundred two seven to
two thirty nine hundred and say that you're interested in
the Navigating Life with Early onset Alzheimer's diagnosis on Wednesday,
April twenty third at noon and they will register you
and send you a link. And our speakers are going
(23:32):
to be a Nova Health System neurologist, doctor Jennifer pol Day,
and then Karen Fagan, who was our health systems director,
who's going to talk about how healthcare systems are changing
to provide more wrap around care for those with a
diagnosis of Alzheimer's.
Speaker 3 (23:53):
So this will be online.
Speaker 5 (23:55):
It's going to be on zoom and when you register
you will be sent the links. Also wanted to mention
that we also have a bike ride you raise money.
It's called the Ride to End All and it is
a bicycling event that will be held Saturday, May third
(24:17):
in Leesburg, Virginia, and one hundred percent of all proceeds
will support Alzheimer's and dementior research.
Speaker 3 (24:26):
To learn more about.
Speaker 5 (24:27):
That, you would go to alz dot org, Forward slash
r id DC Ride d C. And we are so
excited to have Iheart's Hot ninety nine point five as
a media sponsor.
Speaker 1 (24:46):
Yes, everybody here at iHeart is super pumped up about
the Ride to End alz The area Walks to End
Alzheimer's will be coming up later this year. We'll talk
about plenty about that in the future. Ladies, any final
thoughts before we wrap up, and just please let me
reiterate what a pleasure it has been to speak with
you both this morning.
Speaker 4 (25:05):
Just again, thank you for having me.
Speaker 5 (25:06):
Thank you, Jenny, and you have just done so much
to help raise awareness and let people know about our
resources and We're so grateful.
Speaker 1 (25:14):
No no thanks necessary, but as you know, this is
a cause that has become very near and dear to
my heart. Alzheimer's Association, the National Capital Area Chapter, many
many resources available at alz dot org, Forward slash in CA.
Speaker 6 (25:30):
There's danger out there. It lurks on highways and quiet
neighborhood streets. It's more likely to kill you than a
shark and more terrifying than the biggest snake. Distracted driving
claims lives every day. Every notification, swipe, social post, video
or selfie while driving risks your life. So while you
might think public speaking or the zombie apocalypse is scary,
(25:51):
what's really terrifying and even deadly is distracted driving. Eyes Forward,
Don't Drive Distracted brought to you by NITZA and the
AD Council.
Speaker 7 (26:01):
For some children, a single surgery can turn an untreated
cleft into a smile for life. But at Smile Train,
we understand that most children.
Speaker 8 (26:14):
Need a little extra care. They need nourishment to ensure
they grow healthy and strong. They need a confident voice
so they can express themselves clearly. They need emotional support
and counseling to help them navigate the challenges of school
(26:34):
and home life, and they need orthodonic and dental care
to make sure their smiles light up the room as
brightly as possible. Visit SmileTrain dot org to learn how
smile Train is supporting the cleft community with lifelong smiles.
Smile Train changing the world one smile at a time.
Speaker 9 (27:01):
This is a chef of love Chef Genard, TV hosts
and restaurant tour. My grandparents harvested they're land to sell
food and share this overflowing bounty with our community. Grandma said,
for every yam we pick, we get one away in
the world they cultivated. I love preparing and eating dinner
with my family on Sundays. When our resources changed, food
(27:23):
assistance programs sustained us. They gave me fuel to start
my first culinary business at sixteen years old and inspiration
to donate the extra food in my community. Through my life,
I've developed an appetite to work with others to ensure
everyone has access to the nutritious food we need to thrive. Together,
(27:45):
we can help in hunger. Come on join the movement
with Feeding America by volunteering, donating, and advocating. Learn more
at Feeding America dot og Slash Act now brought.
Speaker 10 (27:57):
To you by Feeding America and the Eye Council.
Speaker 11 (28:00):
Life is filled with many paths, but for Native American children,
the most important path is the one that leads them
out of poverty.
Speaker 12 (28:09):
It's a path that led me here to Saint Joseph's
Indian School. It's where I came to grow and learn,
find care, love and support, stay healthy and safe, and
make friends that last a lifetime.
Speaker 11 (28:26):
For almost one hundred years, Saint Joseph's Indian School has
been giving Native American children a path out of poverty
through education, love and support, and ninety six percent of
Saint Joe's students graduate high school. That's ten percent higher
than the national average.
Speaker 12 (28:45):
Saint Joseph's Indian School is our path to a bright
our future.
Speaker 11 (28:54):
Learn more at stjo dot org.
Speaker 13 (28:57):
Today at heros so telepsta machica non as Traffico de
colon vito and actor paras as formiliar USASKI.
Speaker 2 (29:15):
Completo in traffic project to lose Maria elect Council.
Speaker 10 (29:30):
Every tried balancing a dozen eggs in one hand, or
hopping on one foot, or maybe juggling cats while riding
the unicycle. Sounds ridiculous, right, But guess what. That's exactly
what texting about.
Speaker 3 (29:41):
Driving is like.
Speaker 10 (29:42):
Your human brain only has the capacity to focus on
one thing at a time, So when you're behind the wheel,
give driving your undivided attention. Don't drive distracted. A message
brought to you by the National Highway Traffic Safety Administration,
Project yellow Light, and the AD Council
Popular Podcasts
40s and Free Agents: NFL Draft Season
Daniel Jeremiah of Move the Sticks and Gregg Rosenthal of NFL Daily join forces to break down every team's needs this offseason.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
The Bobby Bones Show
Listen to 'The Bobby Bones Show' by downloading the daily full replay.