Episode Transcript
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Speaker 1 (00:07):
Welcome to forty five Forward with host, journalist and speaker
Ron row Out. Ron's mission is to make your second
half of life even better than your first. Most of
us are just approaching our half life when we reach
the mid forties, with many productive years ahead. Ron is
here to help prepare us for this kind of longevity
(00:30):
by providing vital strategies to shift the traditional waiting for
retirement model to a continuous, evolving journey of compelling life chapters.
So now please welcome the host of forty five Forward,
Ron row Out.
Speaker 2 (01:03):
Hello, everyone, Welcome to forty five Forward on Bold Brave TV.
I'm your host, Ron Rowell. As we kick off Alzheimer's
in Brain Awareness Month, we're talking today with two passionate advocates,
Jim Taylor, who's the CEO of Voices of Alzheimer's, and
Carol Steinberg, who's a writer, a nonprofit executive, and the
author of a terrific intergenerational children's book for families with
(01:25):
loved ones living with Alzheimer's. There's a lot to talk
about on the topic of Alzheimer's, not just this month,
but every month. There's an estimated seven million Americans age
sixty five and older living with Alzheimer's today, and that's
an increase of about three hundred thousand cases from just
a year ago. And there are about twelve million family
caregivers who provide unpaid care, valued at more than four
(01:47):
hundred billion every year. On today's show, Jim and Karrol
will talk about a range of issues like the state
of Alzheimer's research, the importance of early diagnosis, and the
impact of Alzheimer's and young caregivers, but also share their
personal stories and talk about the need for connection, education
and support all across America. So now let's meet our guests,
(02:09):
Jim Taylor and Carol Eisenberg. Jim and Carol, welcome to
the show.
Speaker 3 (02:14):
Thank you Ron.
Speaker 4 (02:15):
Thanks Ron.
Speaker 2 (02:16):
A pleasure to having you guys. So there is a
lot to talk about, but I wanted to start a
few minutes with you, with the two of you, about
how you got involved with what you're doing today, because
you both have interesting stories. My guess always have interesting stories,
So I do want to spend a few minutes talking
about how you got to where you are today and
your advts and your passion for this. So Jim, I'll
(02:38):
start with you, and then Carol we'll seguey to you.
Speaker 3 (02:43):
Thank you, Ron, it's a pleasure to be here tonight,
and thank you for inviting me to participate. I was
a business person IBM Finance and had a successful career.
My wife, Jerry, was initially a nurse and did some
research and then got into hospital of the State Administration
(03:05):
and finished her career as the CEO of the largest
long term care facility in New York City. She began
to notice some cognitive issues late in her career and
it was a familial disease in her family, so she
retired and in twenty twelve, at the age of sixty nine,
(03:29):
was diagnosed with mild cognitive impairment later clarified as Alzheimer's disease.
We were both capable individuals and really wanted We resolved
early after her diagnosis that we wanted to make this chapter,
(03:50):
the final chapter of Jerry's life, as meaningful as possible.
So that we resolved that we would be very dedicated
to activists and do all we could to help not
only ourselves, but other people learn as much about the
disease and help equip them to have as positive a
journey post diagnosis as possible.
Speaker 2 (04:10):
Okay, good. Yeah, And I will just say before I
asked Carol, I did for our audience's sake, that I
heard Jim and get Jerry several years ago. They gave
a presentation on Long Island here and it was very
heartfelt and emotional, and I really remember coming up to
Jim afterwards and just shaking his hand and meeting Jerry too.
(04:32):
So thank you for being here, Jim. Now, thank you Ron,
and then Carol, your story part of it anyway, Thanks Ron.
Speaker 4 (04:42):
For having me.
Speaker 1 (04:44):
So.
Speaker 4 (04:45):
I was a longtime journalist much like Ron. In fact,
I also covered Long Island for the New York Times
for a long time, and I thought that career was
going to continue. But then, by chance, I was offered
a job as director of communications at a Long Island
Alzheimer's Foundation, and it really piqued my interest because my
(05:07):
dad had passed away as a result of Alzheimer's disease
a few years earlier than that, and I just thought,
this is the time for a midlife career change. It
was sort of I guess I'm meant to be. And
from the Long Island Alzheimer's Foundation, we created a national
organization and I was an executive at the national organization
(05:31):
for more than a dozen years as EVP and then
acting CEO, worked for some other nonprofits and was lucky
enough to come full circle and to meet Jim. And
now I write the newsletter for Voices of Alzheimer's. I
also recently published a children's book, as you mentioned upfront,
(05:52):
Thank you Come up on me, Let's Fly. And that
book originated more than twenty five years ago week my
father died. I wrote the first draft, tweaked it over
the years as I gained Alzheimer's expertise, and published it
this year.
Speaker 2 (06:10):
Terrific. Yeah, and I have a copy and we'll show
it on screen in a little while. We'll talk a
little bit more about that. So let's start a little bit.
You know, thinks they're big steps in Alzheimer's. They're happening
all the time. People don't always learn about them because
they don't know breaking news, but they're important. So why
don't we start with some of that, and I'll go
(06:32):
back to you. Jim too offers our audience a little
bit of an update on what's been happening in terms
of research and development and advances and treatments and so forth.
Speaker 3 (06:43):
One of our challenges ron actually is to help people
be aware of why it's such an exciting time in
Alzheimer's research, and it's really in multiple areas. It's ironic
to me that a number of not just evolutionary but
revolutionary are happening at the same time, and it's really
kind of a golden age, I believe in Alzheimer's research,
(07:06):
because for a century since Alzheimer's was first identified, we
have really had no effective treatment that would slow, prevent
or cure the disease. Most recently, over the last three years,
disease modifying therapies for the first time have been approved
for Alzheimer's. There are now two being marketed, one called
(07:29):
Lakimbi and the other is Cassunla, and these treatments are
given by infusion are intended for the early stage of
the disease, which makes early detection very very important because
these drugs are most effective when they're started in the
early stage, and there are The benefit is that it
(07:53):
slows the progression in the early stage and can possibly
add an additional year or two in the early stage
of the disease, which is really when the patient is
fully able to enjoy life. And be a participating member
of society the fullest extent. I know about these drugs
(08:15):
personally because Jerry was on one of the first one,
the first one to be approved, and we believe very
significantly from being on the drug. There are side effects.
People may know that aria aaria is the most well
known side effect, and it's asymptomatic, which means you don't
(08:36):
aren't aware of the facts, and it's a swelling or
some blood or liquid on the brain and it's identified
by an MRI I And as you begin to have
the take the drug, you have mries periodically to find
to determine if you might have the side effect. The
(09:00):
side effects really are pretty much isolated to two small communities.
It's gotten a lot of publicity, but you're in one
of these subgroups, you're probably at a low risk. Those
two subgroups are genetic. One is genetic if you have
a particular gene and two copies of that gene. Only
(09:21):
two percent of the general population are in that category.
And then the other is that the patient is on anticoagulants.
If you're not in those groups, it's rare that you
will have any side effects from the treatments. So that's
very exciting for us. Of course, it's just a beginning.
(09:43):
You know, we haven't stopped, we haven't reversed, we haven't
prevented the disease. But now there are additional drugs that
are looking at other causes of the disease, and we
hope that we're for a combination therapy the AIDS folks
called cocktails when you mix drugs or take rum, and
(10:05):
we hope for great benefits and hopefully those breakthroughs will
be coming soon. At the same time, remarkably, you may
have seen just last week run the FDA approved the
first blood biomarker so that simple blood tests can be
(10:27):
a strong indicator that a person has can validate that
you have Alzheimer's symptoms. And these tests are just rolling out.
It's very people important that people know about them, and
they're not for everybody. They've only been approved right now
for people who have shown some signs of cognitive impairment.
(10:51):
The other really remarkable thing that's happened is when we
have our annual physical MEDICARE annual physical for these old
enough to be on MEDICARE, like myself, we're entitled to
a cognitive screening and that's become very very important with
these new treatments, and that the fact that the treatment
(11:12):
works best when it's begun as early as possible. So
we want to educate folks to make them aware the
title this cognitive screening in their annual physical and that
they should ask for it. And it's really remarkably leading
edge because before it was a five or ten minute
test and would be administered one on one when a
(11:35):
person would ask you to draw a clock or remember
three words or repeat his story. Now you're just handled
a tablet. Can you imagine just given a little tablet
like your iPad and one hundred points of artificial intelligence
are assessed in that eight minute test, and that it
(11:56):
is more effective it's than the prior one on one test.
So this is a huge step forward and AI is
going to have many positive benefits for medicine. But it's
already improving our ability to diagnose dementia. So we're very
very fortunate to have that already.
Speaker 2 (12:18):
Yeah, yeah, it's exciting. I mean, people are, you know,
concerned about AI, and of course there are lots of issues,
but in the medical field, that's one of the its
ability to to basically assimilate data. It's really dramatic and
in some ways, can you You're basically putting together one
hundred clinicians together and amassing what they know and doing
(12:40):
an assessment. And I think, yeah, I think it's it's
it's it's it's fascinating work.
Speaker 1 (12:46):
Uh.
Speaker 2 (12:46):
You know, certainly, you know when I remember the old tests, right,
you know, they ask you questions like, well, you know
what day of the week it is? You know, I'm like,
I don't know what day of the week is. You know,
why is that a test of you know, of dementia?
But yeah, and so we got a couple minus before
the break. But I wanted to shift to Carol and
(13:07):
we can, you know, continue on the other side of
the break. But just about you mentioned jim early onset issues,
and I think early detection is a really important issue.
And so I think when we come back from the break, Carol,
I'd like you to talk about it a little bit
about your experience and your family and what happened when
you initially well I guess in the book this was
(13:29):
this was your your your father, your grandfather, my father, Right,
So you talk about your first experience and how you
know because there's the clinical side and then there's emotional
and personal side of it. So I'm gonna just take
a quick break now and not cut you off in
the middle here of your story. But folks, we are
(13:49):
going to take a short break. But when we come back,
we're talking much more with Carol Steinberg and Jim Taylor.
So don't go anywhere.
Speaker 5 (13:58):
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(14:19):
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(14:42):
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Speaker 6 (15:00):
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Are you worried about taking time off work to care
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(15:20):
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(15:43):
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Speaker 2 (16:01):
Welcome back, folks. We're talking today with Carol Steinberg, a
veteran writer and nonprofit executive and author of a terrific
children's book for families with loved ones living with Alzheimer's,
and also Jim Taylor, the CEO of Voices of Alzheimer's.
Before the break, we were talking about some of the
developments in the field, some exciting developments in diagnosis and treatment.
I just wanted to have Carol pick up on some
(16:22):
comments Jim made.
Speaker 4 (16:26):
The fact that a blood test was approved I think
has a lot of psychological meaning. I think people are
aware of what blood tests are versus they might be
scared when they hear initially that they need an MROI
or a PET scan. So I think that might really
help with the importance of early diagnosis, as Jim mentioned,
(16:49):
also in terms of education, which is so important. When
I had my first Medicare annual wellness visit, I obviously
knew that a cognitive assessment part of it, and afterwards
I was talking to some friends about it and they
had absolutely no idea about it. These were people my contemporaries,
(17:09):
no idea. Unfortunately, doctors are pressed for time. A lot
of PCPs would rather the specialists take care of people
with Alzheimer's disease or cognitive impairment. So it's really important
to self advocate to ask these cognitive exams, especially if
you have some concerns about your cognition.
Speaker 2 (17:33):
Right, right, and so in your family, you know you,
you know Jim, and you mentioned the importance of early diagnosis.
I think that's for lots of reasons. One of them
is that if you want to try some mistreatments, they
generally are more effective with early diagnosis, not late stage Alzheimer's.
(17:54):
So you're going to talk about a little bit and
give us a little bit more about your story about
your dad and how that evolved into your book.
Speaker 4 (18:04):
So I think times were very different then we're talking.
My dad was diagnosed in the nineteen nineties. We've certainly
come a long way since then. There really was no
effective treatment at the time. He really wasn't even put
on medicine. It was more trying to manage behaviors, try
to deal with other issues that arose. My mother was
(18:28):
the primary caregiver. Myself and my siblings were long distance,
so it really fell all on my mother's shoulders. I
refer to her as a heroic caregiver because I cannot
believe how selfless she was over so many years, doing
most of it on her own, until my father's condition
deteriorated so badly, especially he couldn't walk anymore he needed
(18:51):
a wheelchair, so then she did hire and aid. But
she still, I think, was representative of the caregivers we
hear about today who don't recognize the self care they need.
They don't recognize that they need respite, They don't recognize
it's okay to ask for help. My mom was one
of those people. Whenever I mentioned, why don't you join
(19:13):
a support group? No, no, no, I could do it
all on my own. Finally we convinced her. I recall
like it was yesterday when she left my dad in
the good hands of a caregiver and came up back
to New York and visited with myself and my siblings
and her five granddaughters at the time, and when I
(19:34):
look back at the pictures of my mom surrounded by
these Halloween pumpkins, it was the fall. She looked like
a totally different person. She needed that refresh, and I
think that's something that caregivers really they need to allow
themselves to have respite, to reach out for help. Getting
back to my dad, it was a long distance, so
(19:59):
I don't think we saw the progression obviously as much
as my mom did. There were things that stood out.
I remember once I went down there and he had shingles.
He had shingles all over his body, and he couldn't
express any kind of pain, and to me, that was heartbreaking.
(20:20):
The book was written, as I said, the week my
father passed away. As a journalist. I think it was
my way of expressing grief. But it really was such
a rough draft that over the years, as I gained
experience with Alzheimer's organizations, I would continually go back to
the book and tweak it here, tweak it there. The
(20:42):
latest version added the intergenerational activities because I realized how
important it is for families, and this is what my
family didn't realize. You're told someone has Alzheimer's disease, You're
told what some of the simms are. But as a family,
(21:02):
especially a family with young children, which I had at
the time, we need to answer the question now, what
what how do we interact with our loved one with
the disease in a meaningful way, meaningful for the person
with the disease to help with cognitive stimulation, to help
them with quality of life, but also for the younger
(21:24):
generation to teach them empathy, to show them that the
connection is still there. This is still their grandpa or
their dad or their uncle. So the book really grew
out of a lot of regrets that we didn't know
as a family at the time. And my hope is
that it just provides understanding to intergenerational families, that it
(21:49):
takes some of the fear and confusion out of the
disease and helps people foster the bonds despite the disease.
Speaker 2 (21:57):
Right right. Thank you for that, And it's a terrific
book and we'll talk more about that later about how
people get it. Now back back to you, Jim, Now,
so you know there there are, you know there there is.
Frequently it's a family dealing with an older loved one,
but in your case too is your spouse, and it's
(22:19):
also you know, really it's a very different kind of
relations And my mom had Alzheimer's, but my dad was
gone and I don't know how he could have managed it.
That was also in the nineteen nineties, Carol, So that
was a while ago. But Jim, I I do going
back to the time I met you earlier, several years ago.
(22:40):
You were with Jerry and you were on stage and
you talked about it, and you know, we talk about
connection and you know, the authenticity of your relationship and
the sense of dignity and destigmatizing this whole thing. And
it's not that it was, you know, normalizing, but for
(23:00):
people to see you and see your wife together, it
was really powerful.
Speaker 3 (23:08):
I miss having her on the show tonight. Thank you
for that very much. We had a partnership. We had
a wonderful marriage. It was a wonderful marriage even before
Jerry developed Alzheimer's was diagnosed. In our bond. Given the
work that we did and the cooperative partnership that we had,
(23:30):
it was even more bonding experience and our relationship was
even deeper. It was very important when we spoke, and
we've spoken to I think twenty thousand, over twenty thousand people,
and it was very much a fifty to fifty presentation
(23:50):
for the first eight years, and she would speak for
five or ten minutes and then I would respond and
we'd move forward and tell our stories. At that time,
we didn't know nearly as much about the disease, or
about advocacy, or about the political situation or research, so
we talked mostly about ourselves, and exactly as you said,
it was with the intent of destigmatizing. We're trying to
(24:13):
address the stigma of living with the disease that people
could see. It's a very very slowly progressing disease ron
as you know. And for ten years Jerry was you know,
certainly the first five years Jerry was very good, just forgetful.
She was on one of these drugs. We believe that
lengthened the time that she was so very good. She
(24:34):
could travel, keep her calendar, you know, packers for herself,
and she began then to decline. And I believe at
the time you saw us, she was no longer She
could answer the questions, but she didn't want to speak.
So I after COVID, I did most of the presentation,
(24:54):
but then she was always on stage. We felt it
was extremely important that the audience see Jerry and see
the face and see the reactions and know that she
was still very much a person. She was a living person.
She would often say to me, you know, people see
me and think I'm not okay. They know Alzheimer's. What
(25:20):
they don't realize is I've chosen to be perfectly okay.
I'm different. I'm not the same as you and Carol
and Ron, and that's why you all conclude I'm not okay.
But I've decided I'm perfectly okay the way I am,
and that way I keep my self dignity, my self worth,
(25:42):
and being proud of who I Jerry Taylor can be.
So that was even as she progressed, much of my
day is zoom meetings now with this new organization, and
while she was still alive, we would have. She was
always besides me for my meetings, even though she didn't
participate and she didn't always understand. I thought it was
(26:05):
so important that people continue to see why are we
doing this. It's not for the association, it's not for
the organization. It's for the patient and for the care partners.
Speaker 2 (26:16):
Right, Yeah, I think that it was you. Jim Will
mentioned that, you know, there's several, you know, interesting books
these days that are personal stories about Alzheimer's, and I
think one of them is mentioned by Rebecca Chop called
still Me, you know, and I think that's an important statement,
and I thank you for mentioning.
Speaker 3 (26:36):
Rebecca is a board member of Voices of Alzheimer's, a
very close friend and a remarkable individual, and I highly
recommend that book as well as Carol's.
Speaker 2 (26:45):
Right, Okay, so let's talk a little bit about you
know how this. You know, so it's important even when
they can't speak to to know the Voices of Alzheimer's.
And so that's literally how this organization and started, the
Voices of Alzheimer's. And you were a founder and co
founder with Terry, and I think Carol you got involved
(27:06):
with it as well. He might when have comes but
to talk about what the organization does, and Carol chime
in about your involvement in that and other organizations too.
Speaker 3 (27:17):
Timing is everything, ron Like in real estate, it's location location.
We just happened to organize and launch our new organization,
Voices of Alzheimer's, which can be found on the web
at the voices of a d dot com. As these
(27:40):
new drugs got announced Ron, there was difficulty in getting
them approved by Medicare CMS and there of course, any
breakthrough drug is going to be expensive and very important
that we get these covered and Medicare has a long
history of I believe, discriminating against people with Alzheimer's, and
(28:03):
we can talk more about that, but I don't think
it's so there was a great need to hear the
voice of the patient to get because it's very effective
when senators, when regulators, when decision makers actually can talk
to Jerry, or talk to Jim, or talk to the
members of our organization and know what the day to
(28:25):
day lives are like and what the possibilities are that
they can make by making a decision, a decision to
cover the drugs in this case. So I was asked
to start this organization. A very generous benefactor gave us
fund salize it. We've now grown significantly and are well funded.
(28:47):
But our voice, our voice is important, and our goal
is to raise the voice of the patient and make
it easily accessible in to the decisions that are being
made about us to pharmaceutical companies are doing research. We're
really available to them, but very much we want to
be sure that Medicare hears from us, that the FDA,
(29:10):
which approves drugs, hears from us, and more than that,
we really try to do what benefits our clients as well.
We don't have support services generally, but we have been
a factor in getting approval of a new airline program.
There's a program called Sunflower Run and it's prevalent and
(29:34):
if you wear the bearer of a lanyard, I forgot
mine tonight, but it indicates that that person has a
hidden disability. So in Europe, all the airports and all
the airline personnel have been trained to recognize that and
to give that person, as if they were in a wheelchair,
some extra time, some extra tender loving care you to
(29:59):
offer to help them to move them ahead in the line.
So in the US, one of our board members traveled
to Europe and realize what a wonderful program it is,
and we've been trying to penetrate the US. All the
major airports had adopted the program, but not the airlines.
So we started a campaign to encourage the airlines to
(30:21):
adopt the son for our program. And I'm very happy
to say on May first United Airlines it's the first
I've trained all their personnel, their counter personnel, and their
airline individuals to recognize the lanyard and to give that
person support and help. And it's a wonderful program. So
(30:41):
we're encouraging people to fly United whenever possible, at the
same time encouraging all the other airlines to adopt the program.
We're sure they will over time. One of the other
things that we've been concerned about. These drugs are expensive.
Now we understand that we'd like them to be more
(31:02):
accessible costwise, but we also know that the developers must
earn a good return after many, many failures in this research.
But people who are early on set, what we call
them young onset more correct, are younger than sixty five.
(31:23):
And in this country, if you're younger than sixty five,
you do not have Medicare, and many of these people
do not have insurance, and therefore the SSDI Social Security
Disability Insurance requires a two and a half year wait
(31:44):
before you qualify for Medicare venit. If you're hoping to
get an early stage treatment, it's very important that you
not wait. As we talked about how important early detection
and those screenings were, so one or two diseases have
been legislatively exempted from this two and a half year
(32:07):
weight als being one of them. So we are about
to introduce legislation in Washington that would also exempt young
onset Alzheimer's from that two and a half year weight
to qualify for Medicare benefits, which would say that they
would immediately be eligible or could pay for the treatments
(32:27):
that they qualify for these new Uh, it's a it's
a life changing, life altering treatment. It gives the patients
so much more hope. It's another I know I'm dragging
this out a little bit, but I and Carol knows
this very well. Carol's such a wonderful reporter in talking
(32:48):
to our members and patients that you know, when Jerry
was diagnosed, there were no there was no treatment, there
was no really immediate hope of treatment, and so many
people chose to be despondent, sit at home on the couch,
and hope is so important and attitude is so important.
But now with all these breakthroughs, there's much more justifiably
(33:12):
a hopeful attitude that can be both by the care
partner and the person with the disease. And we hope
that this legislation, which we're very excited about. We've gotten
a very positive response so far and we're very hopeful
this will pass this year.
Speaker 2 (33:29):
Okay, Okay, So that's that's Congress right now, so yes, yes,
you're ready to be So it's still in committee though,
is that right?
Speaker 3 (33:37):
Or was it No, it has not gotten to a committee.
We have to have the bill what they call scored,
a cost calculated, and it's being costed right now and
we hope it will be introduced next month.
Speaker 2 (33:48):
Great, okay, So we're going to take another break, and
when we come back, I want to come back to you, Carol,
because I know you've worked with Jim with Voice of Alzheimer's.
You like me a writer, you have lots of observations
and insights, so I want to talk to you about
them and how you contribute to voices of Alzheimer's in
your writing observation. So, folks, once again we're going to
(34:09):
take another quick break, but we will be back with
much more. We have a lot of talk about still
with Jim Taylor and krol Steinberg. So don't go anywhere.
We'll be right back.
Speaker 5 (34:21):
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(34:45):
taught invaluable lessons through her personal experiences. She will also
provide real life facts, examples, and personal stories that will
confirm that why serving as a child advocate is extremely
beneficial when addressing the needs of the whole child. Listen
Live to Dare to Soar Saturdays ten am Eastern on
the BBM Global Network and tune in radio as Doctor
(35:07):
RC will provide thought provoking information that will empower, encourage
and strengthen students, families, and communities across our nation. You
can also visit her at soarwith Katie dot Com. Author,
radio show host and coach John M. Hawkins reveals strategies
(35:28):
to help gain perspective, build confidence, find clarity, achieve goals.
John M. Hawkins' new book Coached to Greatness Unlock Your
Full Potential with Limitless Growth, published by I Universe, Hawkins
reveals strategies to help readers accomplish more. He believes the
book can coach them to greatness. Hawkins says that the
(35:51):
best athletes get to the top of their sport with
the help of coaches, mentors, and others. He shares guidance
that helps readers reflect on what motivates them. We discover
and assess their core values, philosophies, and competencies, fine settings
that allow them to be the most productive and track
their progress towards accomplishing goals. Listen to John Hawkins My
(36:14):
Strategy Saturdays one pm Eastern on the BBM Global Network
and tune in radio.
Speaker 2 (36:24):
Welcome back, folks. Were with forty five Forward on Bowl
Brave TV again talking with Jim Taylor and Carol Steinberg
about a whole host of issues with respect to Alzheimer's.
Before the break, we were talking about some of the
issues involving getting early diagnosis and tests through Medicare, and
I wanted to switch back to Carrol because she's been
(36:44):
involved voices of Boszheimer's as well. She's a writer like me,
and she's got lots of observations. I believe you handled
the newsletters. I right, Carolyn, Yes, right, yes, So talk
about the opportunity.
Speaker 4 (36:57):
Sorry, Ron, but it gives me the opportunity to talk
to so many people with the disease, many in the
early stages, even people in the middle stages, and it
gives me the opportunity to talk to a lot of
care partners. But I do need to give kudos to
Voices of Alzheimer's because I think what this organization does
that makes them really sets them apart and really shows
(37:20):
there was a need for it. Is they really do
show the face of Alzheimer's disease by showing people's stories,
by talking to people from all walks of life. We're
not just putting celebrities out there. These are people in
all parts of the country who had to give up
so much when they got a diagnosis, give up their jobs,
(37:43):
spouses who gave up their jobs, children who have given
up so much as a result of this. And Voices
of Alzheimer's recognition of this, including with its Bill of
Rights for People with the disease, which is a very
very powerful statement, and I do encourage people to look
at it on the website because that really recognizes that
(38:06):
we have to de stigmatize the disease, that people need
to be spoken to, they need to be recognized that
they're still a person. And I remember in my early
calls with Jim, Jerry was there right beside him, didn't
really talk, but it was always that presence showing such
(38:28):
a bond and such strong love. And I think that
is such a good thing to show the world that
there are selfless care partners out there. There's no denying
it's a horrific disease. It's a challenging disease. It impacts
every part of your life, financial, psychological, etc. But there
(38:49):
are ways to push through it. And I think that's
what Voices of Alzheimer's has shown to the world, that
there is hope.
Speaker 2 (39:00):
Yeah, and I think there's hope, and it's I think,
and it's part of life, you know, it's not it's
not some siloed sector of our society. It really is
part of every every community, almost every family, you know.
I think you know years ago there there was a
little bit of a a hesitancy, sort of a self
(39:23):
stigma about people not wanting to bring it up and
people thinking, well, what what what am I going to
How am I going to respond to that? And and
now you go to a gathering and if this is
your situation with a spouse or a loved one, it's
like everyone has a story and then you realize it's
it's this is part of life, and it's it's an
(39:44):
unfortunate but but it's you know, yeah, Jim, go ahead,
you want to jump in there.
Speaker 3 (39:50):
No, no, I was giving your thumbs up.
Speaker 2 (39:52):
Oh yeah, well it's yeah. I think that we've talked
about this in our other conversation and I might as
well jump into it, which is that, you know the
issue of caregiver burden. You know, yes, it is hard.
It is hard.
Speaker 4 (40:11):
You know.
Speaker 2 (40:13):
Part of it. The reason it's hard is that we're
not trained for it, right, I mean, we don't, you know.
So that's one of the things we need. Besides the
destigmatization is the education so people can understand the disease.
You know, I've been fortunate. I've After my mom passed away,
I wanted to knowing how difficult it was. I wanted
(40:35):
to get involved in some way, and I was offered
an opportunity to work with the Alzheimer's Association, my local chapter,
to provide webinars for people information and webinars. So one
was sort of on the preventative side, producing the risk.
So one was called healthy Living for your brain and body,
(40:58):
and it also for the you know, an opportunity for
me to give back to making the journey a little
less arduous for other families who are going through it.
But also you meet people in this community who are
really extraordinary. I mean, you guys know there's a certain
selflessness that you mentioned that word before, Carol, and I
(41:20):
think that's true that people and people come into it
out of a sense of purpose, and many people are
like Eu, Jim, you know, and Carol. You know, you
come in because you're through accident, you know, through personal
connection from totally different fields, and you feel a sense
(41:43):
of purpose of you know, Okay, let's do this.
Speaker 3 (41:47):
You know, Ron, I think you've hit on a very
important point. I think the last twelve years of my
life have been among the most personal growth, a period
of such significant personal growth for me. When Jerry was diagnosed,
(42:07):
we made a decision and we made we became passionate
about advocacy in helping others. And I decided that I
had been a success in my career, but I'd always
kind of stayed in my comfort zone. I hadn't taken
great risks. But I decided that I was going to
(42:28):
live more on the edge, if you will, because I
had a lot of opportunities that kind of came our
way that normally I would have been more comfortable just
to say, well, we're not ready to do better, you know,
that's outside of pertise. But I resolved we would not
say no. And I believe that we all have a
(42:50):
great tendency everyone to underestimate what we can achieve if
we find something about which we are passionate and decide
to be careerrageous at the same time. It's just remarkable
what we can do. Jerry and I never dreamed that
we would become such visible and being able to make
(43:10):
such an impact when we began, and there was no
course in Alzheimer's advocacy. We just had to learn, you know,
one step at a time. But because we were willing
and passionate and we met wonderful people. I mean, Carol's
just an example of it's such a rich community because
you bond so quickly because these people and people are
(43:34):
passionate and there's there's no uh, there's no hiding. People
are very open about where they are in life. So
it's been an extremely rewarding journey.
Speaker 4 (43:45):
Yeah, a lot of the people that I talked to
are also willing to jump in to advocate and for
their own personal lives to really do more. They recognize,
you know, that there is an end. Unfortunate, this is
a terminal disease, and so many of the people is
so embracing life. And that's I hang up from these
(44:07):
conversations and I'm like, wow, And Jim knows because I
always talk about it with enthusiasm because it boggles my
mind that someone could get a diagnosis like this and
embrace life to such an extent and want to give
back to this community in such an amazing way.
Speaker 2 (44:28):
Yeah. And you know, one of the things that you
know that comes out from your book, Carol, I think
is just thinking about caregivers in a broad sense, which
is so we usually think about older caregivers, you know,
in their forties, fifties, sixties, and sometimes you know older,
but you bring up the fact that young you know, younger,
(44:51):
you know, people, younger children are being getting more involved,
maybe not as primary caregivers, but they're caregivers. And I
think it's important that well, I think that you know,
in general, I think that not necessarily just for people
with Alzheimer's, but caregivers of older people are younger. These days,
people are getting married later and so they arem in
(45:13):
kids later, and so children and grandchildren getting much more
involved in the in the caregiving, as you showed in
your case, and so it's something that becomes a sort
of a multi generational enterprise between parents, their kids, and
their grandparents. So I want to know flesh that out
(45:35):
a little bit more. Unfortunately, I need to stick in
one more break so folks don't go away. We have
a lot more in our final segment with Carol Steinberg
and Jim Taylor, So come right back.
Speaker 5 (45:50):
Mike Zurich three time California state champion in Greco Roman
wrestling at one hundred and fourteen pounds. Mike blind ST's
birth was born in Hartford, Connecticut. He was a six
time national placer, including two seconds, two thirds, and two fourths.
He also won the Veteran's Folk Style Wrestling twice at
(46:12):
one hundred and fifty two pounds. In all these tournaments,
he was the only blind competitor. Nancy Zurich a creative
spirit whose talents have taken her to the stage and
into galleries and exhibitions in several states. Her father, a
commercial artist who shared his instruments with his daughter and
helped her fine tune her natural abilities influenced her decision
(46:34):
to follow in his footsteps. Miss Zurich has enjoyed a
fruitful career doing what she loves. Listen Saturday mornings at
twelve Eastern for the Nancy and Mike Show for heartwarming
stories and interesting talk on the BBM Global Network.
Speaker 6 (46:51):
Are you struggling to care for elderly parents or a spouse?
Do you wonder if being a caregiver is making you sick?
Are you worried about taking time off work to care
for our elderly parents and balance work life and caregiving?
Has caregiving become exhausting and emotionally draining? Are you an
aging adult who wants to remain independent but you're not
sure how? I'm Pamela d Wilson. Join me for the
(47:13):
Carrying Generation radio show for caregivers and aging adults Wednesday evenings,
six Pacific, seven Mountain, eighth Central and nine Eastern, where
I answer these questions and share tips for managing stress,
family relationships, health, wellbeing and more. Podcasts and transcripts of
the Carrying Generation are on my website, Pamela Dwilson dot com,
(47:34):
plus my Caregiving library, online caregiver support programs and programs
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Pamela d Wilson dot com.
Speaker 2 (47:52):
Welcome back, folks. We have one more final segment with
Jim Taylor, the CEO Voices of Alzheimer's, and krol Steinberg,
veteran writer and author of a celebrated children's book, and
I want to talk about that book last second. We
had to sneak in a lot in our last piece here,
but it's an important piece about the impact on young caregivers.
(48:13):
So talk about that because you were involved, but also
your children.
Speaker 4 (48:20):
That's one of the reasons why it's so important the
legislation that Voices of Alzheimer's is working on with early
onset because if you think about it, we're talking about
parents most likely under fifty five years of age, people
in their forties, even in fifties, who potentially have young children,
(48:40):
who absolutely have no idea what this disease is about.
There's such a lack of education about it, and they're
most likely embarrassed because it's not like the older generation
who know peers who are going through the same thing.
They're isolated. The person in their classroom has no idea
(49:03):
what they're going through. They haven't seen this in their family,
or if they've seen it, they've seen it with an
older person. So it's a very different situation. And they
are called on quite often to help out with family responsibilities,
so they miss out on some social opportunities, etc. But
there is the plus side of being a young caregiver.
(49:25):
There are studies that show that people who help care
for someone with the disease like Alzheimer's or another disease,
do gain greater empathy, they do gain better social skills,
they have increased self confidence, and just think of the
impact on the person with the disease, whether it's a
(49:47):
parent or a grandparent, having a young person to interact with,
to do some of the intergenerational activities like I have
in my book. For the person with the disease, it
stimulates them. It gives them the socialization they need, which
is so important in terms of managing behaviors, in terms
of increasing their quality of life, in terms of even
(50:13):
normalizing the experience. So it's really a bonding experience for
people to not only care for a person with the disease,
but interact with them in social ways. It will as well.
My book, the intent is to really help children, as
I said, learn about the disease in a very age
(50:36):
appropriate way, take away some of the fear, take away
some of the confusion, but moreover, to really open up
a conversation with a parent or a grandparent so that
when the disease progresses, at least they have some background,
they have some footing to build on and to talk
more about the disease.
Speaker 2 (50:55):
Right, you know, and I'm thinking about what he was
saying before about you know, the sense of personal growth.
So you know that to me is important that you
realize that your relationship can continue to go forward with them,
with the person and just in a different way, in
a different way. But it's not just it is it
is honoring what happened in the past. But it's not
(51:18):
just about honoring what that person was. It's about who
the person is now, and you grow with that person
as you care for them.
Speaker 4 (51:27):
It's also a matter of great respect, right that just
because a person has the disease doesn't mean you can't
respect them, doesn't mean you can't look them in the
face when you're talking. There are so many things you
could do to destigmatize, to give back respect to the person,
(51:47):
and to help them live with the challenges that are
going to keep going.
Speaker 7 (51:53):
Right, Jim, pick up on that, Hi, some of the
things you said a little earlier, I think I have
told you before.
Speaker 3 (52:04):
I hate the term caregiver burden. Too often that becomes
a self fulfilling prophecy. And it is a difficult disease.
But you know, I think it's a tragic disease young
onset that no Carol was speaking of. But for older individuals,
you know, it's a very slowly progressing disease. The first
(52:27):
ten years of Jerry's illness were very manageable. It's only
the late stage that I found really difficult. And in
the twelve years total, I had great opportunity to become
a kinder person, a more thoughtful person. I learned patience.
(52:51):
I wish I had developed more of these skills when
I was a parent or earlier in life. My kids
and I have benefitted. So I really try to tell
both caregivers and patients that you have a choice. Attitude
is so important in determining how you will live this
(53:12):
chapter of your life, and I think the attitude of
the caregiver is extremely important because it very much affects
the person they're taking care of, so choose to approach
this as a positive potentially positive experience. Of course, their
difficulty and the patent as well. My wife always when
(53:32):
she spoke, like to talk about what the advantages or
what she'd learned being an Alzheimer's patient is the sense
that relationships were so much more important. It was very
easy for her to be present because she didn't have
a lot of other thoughts in her head, and people
interactions meant so much more to her. So she would
(53:54):
point out several of the things that she considered blessings
in her life. Even at the same time her cognitive
capacities were declining.
Speaker 2 (54:03):
Right, wow, well that's where we're going to have to
leave it today, and that note very positive and I
thank you for that. So, folks, once again, if you
want to listen to the show, you can go to
play go to a Bull Brave TV and look for
(54:24):
forty five forward. You can also listen to it as
a podcast on Spotify, Apple Podcast, iHeartRadio, other platforms wherever
you listen to your podcast. I want to thank Jim
and Carol for a terrific show. Thank you so much.
I've learned a lot I hope our audience has as well.
I want to thank my engineer Alex for as part
(54:44):
of his terrific team, helped me through every show and
that I just want to give a short plug for
next week. Join me next Wednesday at seven pm Eastern,
I'll be talking to Rob Esposito. He's the founder of
Relocators and the author of a new book, Nobody Move
Without Reading This, which addresses the stresses and challenges and
(55:05):
strategies of moving through life's many transitions. So until then, folks,
keep moving forward. Forty five Forward.
Speaker 1 (55:18):
This has been forty five Forward with host Ron Rowell.
Tune in each week as Ron tackles the many aspects
of health, finance, family and friends, housing, work, and personal pursuits,
all as part of an integrated plan and to take
charge of your unretiring life during these uncertain times. Wednesdays,
(55:41):
seven pm Eastern on the Bold Brave TV Network powered
by B two Studios.
Welcome to forty five Forward with host, journalist and speaker
Ron row Out. Ron's mission is to make your second
half of life even better than your first. Most of
us are just approaching our half life when we reach
the mid forties, with many productive years ahead. Ron is
here to help prepare us for this kind of longevity
(00:30):
by providing vital strategies to shift the traditional waiting for
retirement model to a continuous, evolving journey of compelling life chapters.
So now please welcome the host of forty five Forward,
Ron row Out.
Speaker 2 (01:03):
Hello, everyone, Welcome to forty five Forward on Bold Brave TV.
I'm your host, Ron Rowell. As we kick off Alzheimer's
in Brain Awareness Month, we're talking today with two passionate advocates,
Jim Taylor, who's the CEO of Voices of Alzheimer's, and
Carol Steinberg, who's a writer, a nonprofit executive, and the
author of a terrific intergenerational children's book for families with
(01:25):
loved ones living with Alzheimer's. There's a lot to talk
about on the topic of Alzheimer's, not just this month,
but every month. There's an estimated seven million Americans age
sixty five and older living with Alzheimer's today, and that's
an increase of about three hundred thousand cases from just
a year ago. And there are about twelve million family
caregivers who provide unpaid care, valued at more than four
(01:47):
hundred billion every year. On today's show, Jim and Karrol
will talk about a range of issues like the state
of Alzheimer's research, the importance of early diagnosis, and the
impact of Alzheimer's and young caregivers, but also share their
personal stories and talk about the need for connection, education
and support all across America. So now let's meet our guests,
(02:09):
Jim Taylor and Carol Eisenberg. Jim and Carol, welcome to
the show.
Speaker 3 (02:14):
Thank you Ron.
Speaker 4 (02:15):
Thanks Ron.
Speaker 2 (02:16):
A pleasure to having you guys. So there is a
lot to talk about, but I wanted to start a
few minutes with you, with the two of you, about
how you got involved with what you're doing today, because
you both have interesting stories. My guess always have interesting stories,
So I do want to spend a few minutes talking
about how you got to where you are today and
your advts and your passion for this. So Jim, I'll
(02:38):
start with you, and then Carol we'll seguey to you.
Speaker 3 (02:43):
Thank you, Ron, it's a pleasure to be here tonight,
and thank you for inviting me to participate. I was
a business person IBM Finance and had a successful career.
My wife, Jerry, was initially a nurse and did some
research and then got into hospital of the State Administration
(03:05):
and finished her career as the CEO of the largest
long term care facility in New York City. She began
to notice some cognitive issues late in her career and
it was a familial disease in her family, so she
retired and in twenty twelve, at the age of sixty nine,
(03:29):
was diagnosed with mild cognitive impairment later clarified as Alzheimer's disease.
We were both capable individuals and really wanted We resolved
early after her diagnosis that we wanted to make this chapter,
(03:50):
the final chapter of Jerry's life, as meaningful as possible.
So that we resolved that we would be very dedicated
to activists and do all we could to help not
only ourselves, but other people learn as much about the
disease and help equip them to have as positive a
journey post diagnosis as possible.
Speaker 2 (04:10):
Okay, good. Yeah, And I will just say before I
asked Carol, I did for our audience's sake, that I
heard Jim and get Jerry several years ago. They gave
a presentation on Long Island here and it was very
heartfelt and emotional, and I really remember coming up to
Jim afterwards and just shaking his hand and meeting Jerry too.
(04:32):
So thank you for being here, Jim. Now, thank you Ron,
and then Carol, your story part of it anyway, Thanks Ron.
Speaker 4 (04:42):
For having me.
Speaker 1 (04:44):
So.
Speaker 4 (04:45):
I was a longtime journalist much like Ron. In fact,
I also covered Long Island for the New York Times
for a long time, and I thought that career was
going to continue. But then, by chance, I was offered
a job as director of communications at a Long Island
Alzheimer's Foundation, and it really piqued my interest because my
(05:07):
dad had passed away as a result of Alzheimer's disease
a few years earlier than that, and I just thought,
this is the time for a midlife career change. It
was sort of I guess I'm meant to be. And
from the Long Island Alzheimer's Foundation, we created a national
organization and I was an executive at the national organization
(05:31):
for more than a dozen years as EVP and then
acting CEO, worked for some other nonprofits and was lucky
enough to come full circle and to meet Jim. And
now I write the newsletter for Voices of Alzheimer's. I
also recently published a children's book, as you mentioned upfront,
(05:52):
Thank you Come up on me, Let's Fly. And that
book originated more than twenty five years ago week my
father died. I wrote the first draft, tweaked it over
the years as I gained Alzheimer's expertise, and published it
this year.
Speaker 2 (06:10):
Terrific. Yeah, and I have a copy and we'll show
it on screen in a little while. We'll talk a
little bit more about that. So let's start a little bit.
You know, thinks they're big steps in Alzheimer's. They're happening
all the time. People don't always learn about them because
they don't know breaking news, but they're important. So why
don't we start with some of that, and I'll go
(06:32):
back to you. Jim too offers our audience a little
bit of an update on what's been happening in terms
of research and development and advances and treatments and so forth.
Speaker 3 (06:43):
One of our challenges ron actually is to help people
be aware of why it's such an exciting time in
Alzheimer's research, and it's really in multiple areas. It's ironic
to me that a number of not just evolutionary but
revolutionary are happening at the same time, and it's really
kind of a golden age, I believe in Alzheimer's research,
(07:06):
because for a century since Alzheimer's was first identified, we
have really had no effective treatment that would slow, prevent
or cure the disease. Most recently, over the last three years,
disease modifying therapies for the first time have been approved
for Alzheimer's. There are now two being marketed, one called
(07:29):
Lakimbi and the other is Cassunla, and these treatments are
given by infusion are intended for the early stage of
the disease, which makes early detection very very important because
these drugs are most effective when they're started in the
early stage, and there are The benefit is that it
(07:53):
slows the progression in the early stage and can possibly
add an additional year or two in the early stage
of the disease, which is really when the patient is
fully able to enjoy life. And be a participating member
of society the fullest extent. I know about these drugs
(08:15):
personally because Jerry was on one of the first one,
the first one to be approved, and we believe very
significantly from being on the drug. There are side effects.
People may know that aria aaria is the most well
known side effect, and it's asymptomatic, which means you don't
(08:36):
aren't aware of the facts, and it's a swelling or
some blood or liquid on the brain and it's identified
by an MRI I And as you begin to have
the take the drug, you have mries periodically to find
to determine if you might have the side effect. The
(09:00):
side effects really are pretty much isolated to two small communities.
It's gotten a lot of publicity, but you're in one
of these subgroups, you're probably at a low risk. Those
two subgroups are genetic. One is genetic if you have
a particular gene and two copies of that gene. Only
(09:21):
two percent of the general population are in that category.
And then the other is that the patient is on anticoagulants.
If you're not in those groups, it's rare that you
will have any side effects from the treatments. So that's
very exciting for us. Of course, it's just a beginning.
(09:43):
You know, we haven't stopped, we haven't reversed, we haven't
prevented the disease. But now there are additional drugs that
are looking at other causes of the disease, and we
hope that we're for a combination therapy the AIDS folks
called cocktails when you mix drugs or take rum, and
(10:05):
we hope for great benefits and hopefully those breakthroughs will
be coming soon. At the same time, remarkably, you may
have seen just last week run the FDA approved the
first blood biomarker so that simple blood tests can be
(10:27):
a strong indicator that a person has can validate that
you have Alzheimer's symptoms. And these tests are just rolling out.
It's very people important that people know about them, and
they're not for everybody. They've only been approved right now
for people who have shown some signs of cognitive impairment.
(10:51):
The other really remarkable thing that's happened is when we
have our annual physical MEDICARE annual physical for these old
enough to be on MEDICARE, like myself, we're entitled to
a cognitive screening and that's become very very important with
these new treatments, and that the fact that the treatment
(11:12):
works best when it's begun as early as possible. So
we want to educate folks to make them aware the
title this cognitive screening in their annual physical and that
they should ask for it. And it's really remarkably leading
edge because before it was a five or ten minute
test and would be administered one on one when a
(11:35):
person would ask you to draw a clock or remember
three words or repeat his story. Now you're just handled
a tablet. Can you imagine just given a little tablet
like your iPad and one hundred points of artificial intelligence
are assessed in that eight minute test, and that it
(11:56):
is more effective it's than the prior one on one test.
So this is a huge step forward and AI is
going to have many positive benefits for medicine. But it's
already improving our ability to diagnose dementia. So we're very
very fortunate to have that already.
Speaker 2 (12:18):
Yeah, yeah, it's exciting. I mean, people are, you know,
concerned about AI, and of course there are lots of issues,
but in the medical field, that's one of the its
ability to to basically assimilate data. It's really dramatic and
in some ways, can you You're basically putting together one
hundred clinicians together and amassing what they know and doing
(12:40):
an assessment. And I think, yeah, I think it's it's
it's it's it's fascinating work.
Speaker 1 (12:46):
Uh.
Speaker 2 (12:46):
You know, certainly, you know when I remember the old tests, right,
you know, they ask you questions like, well, you know
what day of the week it is? You know, I'm like,
I don't know what day of the week is. You know,
why is that a test of you know, of dementia?
But yeah, and so we got a couple minus before
the break. But I wanted to shift to Carol and
(13:07):
we can, you know, continue on the other side of
the break. But just about you mentioned jim early onset issues,
and I think early detection is a really important issue.
And so I think when we come back from the break, Carol,
I'd like you to talk about it a little bit
about your experience and your family and what happened when
you initially well I guess in the book this was
(13:29):
this was your your your father, your grandfather, my father, Right,
So you talk about your first experience and how you
know because there's the clinical side and then there's emotional
and personal side of it. So I'm gonna just take
a quick break now and not cut you off in
the middle here of your story. But folks, we are
(13:49):
going to take a short break. But when we come back,
we're talking much more with Carol Steinberg and Jim Taylor.
So don't go anywhere.
Speaker 5 (13:58):
Mike Zorich, I'm California State champion in Greco Roman wrestling
at one hundred and fourteen pounds. Mike blind SI's birth
was born in Hartford, Connecticut. He was a six time
national placer, including two seconds, two thirds, and two fourths.
He also won the Veterans Folk Style Wrestling twice at
(14:19):
one hundred and fifty two pounds. In all these tournaments,
he was the only blind competitor. Nancy Zurich a creative
spirit whose talents have taken her to the stage and
into galleries and exhibitions in several states. Her father, a
commercial artist who shared his instruments with his daughter and
helped her fine tune her natural abilities, influenced her decision
(14:42):
to follow in his footsteps. Miss Zurich has enjoyed a
fruitful career doing what she loves. Listen Saturday mornings at
twelve Eastern for the Nancy and Mike Show for heartwarming
stories and interesting talk on the BBM Global Network.
Speaker 6 (15:00):
Are you struggling to care for elderly parents or a spouse?
Do you wonder if being a caregiver is making you sick?
Are you worried about taking time off work to care
for elderly parents and balance work life and caregiving? Has
caregiving become exhausting and emotionally draining? Are you an aging
adult who wants to remain independent but you're not sure how.
(15:20):
I'm Pamela d Wilson. Join me for the Carrying Generation
radio show for caregivers and aging adults Wednesday evenings, six Pacific,
seven Mountain, eighth Central and nine Eastern, where I answer
these questions and share tips for managing stress, family relationships, health,
wellbeing and more. Podcasts and transcripts of The Carrying Generation
are on my website Pamela Dwilson dot com, plus my
(15:43):
Caregiving library. Online caregiver support programs and programs for corporations
interested in supporting working caregivers. Help, hope and support for
caregivers is here on The Carrying Generation and Pamela d
Wilson dot com.
Speaker 2 (16:01):
Welcome back, folks. We're talking today with Carol Steinberg, a
veteran writer and nonprofit executive and author of a terrific
children's book for families with loved ones living with Alzheimer's,
and also Jim Taylor, the CEO of Voices of Alzheimer's.
Before the break, we were talking about some of the
developments in the field, some exciting developments in diagnosis and treatment.
I just wanted to have Carol pick up on some
(16:22):
comments Jim made.
Speaker 4 (16:26):
The fact that a blood test was approved I think
has a lot of psychological meaning. I think people are
aware of what blood tests are versus they might be
scared when they hear initially that they need an MROI
or a PET scan. So I think that might really
help with the importance of early diagnosis, as Jim mentioned,
(16:49):
also in terms of education, which is so important. When
I had my first Medicare annual wellness visit, I obviously
knew that a cognitive assessment part of it, and afterwards
I was talking to some friends about it and they
had absolutely no idea about it. These were people my contemporaries,
(17:09):
no idea. Unfortunately, doctors are pressed for time. A lot
of PCPs would rather the specialists take care of people
with Alzheimer's disease or cognitive impairment. So it's really important
to self advocate to ask these cognitive exams, especially if
you have some concerns about your cognition.
Speaker 2 (17:33):
Right, right, and so in your family, you know you,
you know Jim, and you mentioned the importance of early diagnosis.
I think that's for lots of reasons. One of them
is that if you want to try some mistreatments, they
generally are more effective with early diagnosis, not late stage Alzheimer's.
(17:54):
So you're going to talk about a little bit and
give us a little bit more about your story about
your dad and how that evolved into your book.
Speaker 4 (18:04):
So I think times were very different then we're talking.
My dad was diagnosed in the nineteen nineties. We've certainly
come a long way since then. There really was no
effective treatment at the time. He really wasn't even put
on medicine. It was more trying to manage behaviors, try
to deal with other issues that arose. My mother was
(18:28):
the primary caregiver. Myself and my siblings were long distance,
so it really fell all on my mother's shoulders. I
refer to her as a heroic caregiver because I cannot
believe how selfless she was over so many years, doing
most of it on her own, until my father's condition
deteriorated so badly, especially he couldn't walk anymore he needed
(18:51):
a wheelchair, so then she did hire and aid. But
she still, I think, was representative of the caregivers we
hear about today who don't recognize the self care they need.
They don't recognize that they need respite, They don't recognize
it's okay to ask for help. My mom was one
of those people. Whenever I mentioned, why don't you join
(19:13):
a support group? No, no, no, I could do it
all on my own. Finally we convinced her. I recall
like it was yesterday when she left my dad in
the good hands of a caregiver and came up back
to New York and visited with myself and my siblings
and her five granddaughters at the time, and when I
(19:34):
look back at the pictures of my mom surrounded by
these Halloween pumpkins, it was the fall. She looked like
a totally different person. She needed that refresh, and I
think that's something that caregivers really they need to allow
themselves to have respite, to reach out for help. Getting
back to my dad, it was a long distance, so
(19:59):
I don't think we saw the progression obviously as much
as my mom did. There were things that stood out.
I remember once I went down there and he had shingles.
He had shingles all over his body, and he couldn't
express any kind of pain, and to me, that was heartbreaking.
(20:20):
The book was written, as I said, the week my
father passed away. As a journalist. I think it was
my way of expressing grief. But it really was such
a rough draft that over the years, as I gained
experience with Alzheimer's organizations, I would continually go back to
the book and tweak it here, tweak it there. The
(20:42):
latest version added the intergenerational activities because I realized how
important it is for families, and this is what my
family didn't realize. You're told someone has Alzheimer's disease, You're
told what some of the simms are. But as a family,
(21:02):
especially a family with young children, which I had at
the time, we need to answer the question now, what
what how do we interact with our loved one with
the disease in a meaningful way, meaningful for the person
with the disease to help with cognitive stimulation, to help
them with quality of life, but also for the younger
(21:24):
generation to teach them empathy, to show them that the
connection is still there. This is still their grandpa or
their dad or their uncle. So the book really grew
out of a lot of regrets that we didn't know
as a family at the time. And my hope is
that it just provides understanding to intergenerational families, that it
(21:49):
takes some of the fear and confusion out of the
disease and helps people foster the bonds despite the disease.
Speaker 2 (21:57):
Right right. Thank you for that, And it's a terrific
book and we'll talk more about that later about how
people get it. Now back back to you, Jim, Now,
so you know there there are, you know there there is.
Frequently it's a family dealing with an older loved one,
but in your case too is your spouse, and it's
(22:19):
also you know, really it's a very different kind of
relations And my mom had Alzheimer's, but my dad was
gone and I don't know how he could have managed it.
That was also in the nineteen nineties, Carol, So that
was a while ago. But Jim, I I do going
back to the time I met you earlier, several years ago.
(22:40):
You were with Jerry and you were on stage and
you talked about it, and you know, we talk about
connection and you know, the authenticity of your relationship and
the sense of dignity and destigmatizing this whole thing. And
it's not that it was, you know, normalizing, but for
(23:00):
people to see you and see your wife together, it
was really powerful.
Speaker 3 (23:08):
I miss having her on the show tonight. Thank you
for that very much. We had a partnership. We had
a wonderful marriage. It was a wonderful marriage even before
Jerry developed Alzheimer's was diagnosed. In our bond. Given the
work that we did and the cooperative partnership that we had,
(23:30):
it was even more bonding experience and our relationship was
even deeper. It was very important when we spoke, and
we've spoken to I think twenty thousand, over twenty thousand people,
and it was very much a fifty to fifty presentation
(23:50):
for the first eight years, and she would speak for
five or ten minutes and then I would respond and
we'd move forward and tell our stories. At that time,
we didn't know nearly as much about the disease, or
about advocacy, or about the political situation or research, so
we talked mostly about ourselves, and exactly as you said,
it was with the intent of destigmatizing. We're trying to
(24:13):
address the stigma of living with the disease that people
could see. It's a very very slowly progressing disease ron
as you know. And for ten years Jerry was you know,
certainly the first five years Jerry was very good, just forgetful.
She was on one of these drugs. We believe that
lengthened the time that she was so very good. She
(24:34):
could travel, keep her calendar, you know, packers for herself,
and she began then to decline. And I believe at
the time you saw us, she was no longer She
could answer the questions, but she didn't want to speak.
So I after COVID, I did most of the presentation,
(24:54):
but then she was always on stage. We felt it
was extremely important that the audience see Jerry and see
the face and see the reactions and know that she
was still very much a person. She was a living person.
She would often say to me, you know, people see
me and think I'm not okay. They know Alzheimer's. What
(25:20):
they don't realize is I've chosen to be perfectly okay.
I'm different. I'm not the same as you and Carol
and Ron, and that's why you all conclude I'm not okay.
But I've decided I'm perfectly okay the way I am,
and that way I keep my self dignity, my self worth,
(25:42):
and being proud of who I Jerry Taylor can be.
So that was even as she progressed, much of my
day is zoom meetings now with this new organization, and
while she was still alive, we would have. She was
always besides me for my meetings, even though she didn't
participate and she didn't always understand. I thought it was
(26:05):
so important that people continue to see why are we
doing this. It's not for the association, it's not for
the organization. It's for the patient and for the care partners.
Speaker 2 (26:16):
Right, Yeah, I think that it was you. Jim Will
mentioned that, you know, there's several, you know, interesting books
these days that are personal stories about Alzheimer's, and I
think one of them is mentioned by Rebecca Chop called
still Me, you know, and I think that's an important statement,
and I thank you for mentioning.
Speaker 3 (26:36):
Rebecca is a board member of Voices of Alzheimer's, a
very close friend and a remarkable individual, and I highly
recommend that book as well as Carol's.
Speaker 2 (26:45):
Right, Okay, so let's talk a little bit about you
know how this. You know, so it's important even when
they can't speak to to know the Voices of Alzheimer's.
And so that's literally how this organization and started, the
Voices of Alzheimer's. And you were a founder and co
founder with Terry, and I think Carol you got involved
(27:06):
with it as well. He might when have comes but
to talk about what the organization does, and Carol chime
in about your involvement in that and other organizations too.
Speaker 3 (27:17):
Timing is everything, ron Like in real estate, it's location location.
We just happened to organize and launch our new organization,
Voices of Alzheimer's, which can be found on the web
at the voices of a d dot com. As these
(27:40):
new drugs got announced Ron, there was difficulty in getting
them approved by Medicare CMS and there of course, any
breakthrough drug is going to be expensive and very important
that we get these covered and Medicare has a long
history of I believe, discriminating against people with Alzheimer's, and
(28:03):
we can talk more about that, but I don't think
it's so there was a great need to hear the
voice of the patient to get because it's very effective
when senators, when regulators, when decision makers actually can talk
to Jerry, or talk to Jim, or talk to the
members of our organization and know what the day to
(28:25):
day lives are like and what the possibilities are that
they can make by making a decision, a decision to
cover the drugs in this case. So I was asked
to start this organization. A very generous benefactor gave us
fund salize it. We've now grown significantly and are well funded.
(28:47):
But our voice, our voice is important, and our goal
is to raise the voice of the patient and make
it easily accessible in to the decisions that are being
made about us to pharmaceutical companies are doing research. We're
really available to them, but very much we want to
be sure that Medicare hears from us, that the FDA,
(29:10):
which approves drugs, hears from us, and more than that,
we really try to do what benefits our clients as well.
We don't have support services generally, but we have been
a factor in getting approval of a new airline program.
There's a program called Sunflower Run and it's prevalent and
(29:34):
if you wear the bearer of a lanyard, I forgot
mine tonight, but it indicates that that person has a
hidden disability. So in Europe, all the airports and all
the airline personnel have been trained to recognize that and
to give that person, as if they were in a wheelchair,
some extra time, some extra tender loving care you to
(29:59):
offer to help them to move them ahead in the line.
So in the US, one of our board members traveled
to Europe and realize what a wonderful program it is,
and we've been trying to penetrate the US. All the
major airports had adopted the program, but not the airlines.
So we started a campaign to encourage the airlines to
(30:21):
adopt the son for our program. And I'm very happy
to say on May first United Airlines it's the first
I've trained all their personnel, their counter personnel, and their
airline individuals to recognize the lanyard and to give that
person support and help. And it's a wonderful program. So
(30:41):
we're encouraging people to fly United whenever possible, at the
same time encouraging all the other airlines to adopt the program.
We're sure they will over time. One of the other
things that we've been concerned about. These drugs are expensive.
Now we understand that we'd like them to be more
(31:02):
accessible costwise, but we also know that the developers must
earn a good return after many, many failures in this research.
But people who are early on set, what we call
them young onset more correct, are younger than sixty five.
(31:23):
And in this country, if you're younger than sixty five,
you do not have Medicare, and many of these people
do not have insurance, and therefore the SSDI Social Security
Disability Insurance requires a two and a half year wait
(31:44):
before you qualify for Medicare venit. If you're hoping to
get an early stage treatment, it's very important that you
not wait. As we talked about how important early detection
and those screenings were, so one or two diseases have
been legislatively exempted from this two and a half year
(32:07):
weight als being one of them. So we are about
to introduce legislation in Washington that would also exempt young
onset Alzheimer's from that two and a half year weight
to qualify for Medicare benefits, which would say that they
would immediately be eligible or could pay for the treatments
(32:27):
that they qualify for these new Uh, it's a it's
a life changing, life altering treatment. It gives the patients
so much more hope. It's another I know I'm dragging
this out a little bit, but I and Carol knows
this very well. Carol's such a wonderful reporter in talking
(32:48):
to our members and patients that you know, when Jerry
was diagnosed, there were no there was no treatment, there
was no really immediate hope of treatment, and so many
people chose to be despondent, sit at home on the couch,
and hope is so important and attitude is so important.
But now with all these breakthroughs, there's much more justifiably
(33:12):
a hopeful attitude that can be both by the care
partner and the person with the disease. And we hope
that this legislation, which we're very excited about. We've gotten
a very positive response so far and we're very hopeful
this will pass this year.
Speaker 2 (33:29):
Okay, Okay, So that's that's Congress right now, so yes, yes,
you're ready to be So it's still in committee though,
is that right?
Speaker 3 (33:37):
Or was it No, it has not gotten to a committee.
We have to have the bill what they call scored,
a cost calculated, and it's being costed right now and
we hope it will be introduced next month.
Speaker 2 (33:48):
Great, okay, So we're going to take another break, and
when we come back, I want to come back to you, Carol,
because I know you've worked with Jim with Voice of Alzheimer's.
You like me a writer, you have lots of observations
and insights, so I want to talk to you about
them and how you contribute to voices of Alzheimer's in
your writing observation. So, folks, once again we're going to
(34:09):
take another quick break, but we will be back with
much more. We have a lot of talk about still
with Jim Taylor and krol Steinberg. So don't go anywhere.
We'll be right back.
Speaker 5 (34:21):
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(34:45):
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(35:28):
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(36:14):
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Speaker 2 (36:24):
Welcome back, folks. Were with forty five Forward on Bowl
Brave TV again talking with Jim Taylor and Carol Steinberg
about a whole host of issues with respect to Alzheimer's.
Before the break, we were talking about some of the
issues involving getting early diagnosis and tests through Medicare, and
I wanted to switch back to Carrol because she's been
(36:44):
involved voices of Boszheimer's as well. She's a writer like me,
and she's got lots of observations. I believe you handled
the newsletters. I right, Carolyn, Yes, right, yes, So talk
about the opportunity.
Speaker 4 (36:57):
Sorry, Ron, but it gives me the opportunity to talk
to so many people with the disease, many in the
early stages, even people in the middle stages, and it
gives me the opportunity to talk to a lot of
care partners. But I do need to give kudos to
Voices of Alzheimer's because I think what this organization does
that makes them really sets them apart and really shows
(37:20):
there was a need for it. Is they really do
show the face of Alzheimer's disease by showing people's stories,
by talking to people from all walks of life. We're
not just putting celebrities out there. These are people in
all parts of the country who had to give up
so much when they got a diagnosis, give up their jobs,
(37:43):
spouses who gave up their jobs, children who have given
up so much as a result of this. And Voices
of Alzheimer's recognition of this, including with its Bill of
Rights for People with the disease, which is a very
very powerful statement, and I do encourage people to look
at it on the website because that really recognizes that
(38:06):
we have to de stigmatize the disease, that people need
to be spoken to, they need to be recognized that
they're still a person. And I remember in my early
calls with Jim, Jerry was there right beside him, didn't
really talk, but it was always that presence showing such
(38:28):
a bond and such strong love. And I think that
is such a good thing to show the world that
there are selfless care partners out there. There's no denying
it's a horrific disease. It's a challenging disease. It impacts
every part of your life, financial, psychological, etc. But there
(38:49):
are ways to push through it. And I think that's
what Voices of Alzheimer's has shown to the world, that
there is hope.
Speaker 2 (39:00):
Yeah, and I think there's hope, and it's I think,
and it's part of life, you know, it's not it's
not some siloed sector of our society. It really is
part of every every community, almost every family, you know.
I think you know years ago there there was a
little bit of a a hesitancy, sort of a self
(39:23):
stigma about people not wanting to bring it up and
people thinking, well, what what what am I going to
How am I going to respond to that? And and
now you go to a gathering and if this is
your situation with a spouse or a loved one, it's
like everyone has a story and then you realize it's
it's this is part of life, and it's it's an
(39:44):
unfortunate but but it's you know, yeah, Jim, go ahead,
you want to jump in there.
Speaker 3 (39:50):
No, no, I was giving your thumbs up.
Speaker 2 (39:52):
Oh yeah, well it's yeah. I think that we've talked
about this in our other conversation and I might as
well jump into it, which is that, you know the
issue of caregiver burden. You know, yes, it is hard.
It is hard.
Speaker 4 (40:11):
You know.
Speaker 2 (40:13):
Part of it. The reason it's hard is that we're
not trained for it, right, I mean, we don't, you know.
So that's one of the things we need. Besides the
destigmatization is the education so people can understand the disease.
You know, I've been fortunate. I've After my mom passed away,
I wanted to knowing how difficult it was. I wanted
(40:35):
to get involved in some way, and I was offered
an opportunity to work with the Alzheimer's Association, my local chapter,
to provide webinars for people information and webinars. So one
was sort of on the preventative side, producing the risk.
So one was called healthy Living for your brain and body,
(40:58):
and it also for the you know, an opportunity for
me to give back to making the journey a little
less arduous for other families who are going through it.
But also you meet people in this community who are
really extraordinary. I mean, you guys know there's a certain
selflessness that you mentioned that word before, Carol, and I
(41:20):
think that's true that people and people come into it
out of a sense of purpose, and many people are
like Eu, Jim, you know, and Carol. You know, you
come in because you're through accident, you know, through personal
connection from totally different fields, and you feel a sense
(41:43):
of purpose of you know, Okay, let's do this.
Speaker 3 (41:47):
You know, Ron, I think you've hit on a very
important point. I think the last twelve years of my
life have been among the most personal growth, a period
of such significant personal growth for me. When Jerry was diagnosed,
(42:07):
we made a decision and we made we became passionate
about advocacy in helping others. And I decided that I
had been a success in my career, but I'd always
kind of stayed in my comfort zone. I hadn't taken
great risks. But I decided that I was going to
(42:28):
live more on the edge, if you will, because I
had a lot of opportunities that kind of came our
way that normally I would have been more comfortable just
to say, well, we're not ready to do better, you know,
that's outside of pertise. But I resolved we would not
say no. And I believe that we all have a
(42:50):
great tendency everyone to underestimate what we can achieve if
we find something about which we are passionate and decide
to be careerrageous at the same time. It's just remarkable
what we can do. Jerry and I never dreamed that
we would become such visible and being able to make
(43:10):
such an impact when we began, and there was no
course in Alzheimer's advocacy. We just had to learn, you know,
one step at a time. But because we were willing
and passionate and we met wonderful people. I mean, Carol's
just an example of it's such a rich community because
you bond so quickly because these people and people are
(43:34):
passionate and there's there's no uh, there's no hiding. People
are very open about where they are in life. So
it's been an extremely rewarding journey.
Speaker 4 (43:45):
Yeah, a lot of the people that I talked to
are also willing to jump in to advocate and for
their own personal lives to really do more. They recognize,
you know, that there is an end. Unfortunate, this is
a terminal disease, and so many of the people is
so embracing life. And that's I hang up from these
(44:07):
conversations and I'm like, wow, And Jim knows because I
always talk about it with enthusiasm because it boggles my
mind that someone could get a diagnosis like this and
embrace life to such an extent and want to give
back to this community in such an amazing way.
Speaker 2 (44:28):
Yeah. And you know, one of the things that you
know that comes out from your book, Carol, I think
is just thinking about caregivers in a broad sense, which
is so we usually think about older caregivers, you know,
in their forties, fifties, sixties, and sometimes you know older,
but you bring up the fact that young you know, younger,
(44:51):
you know, people, younger children are being getting more involved,
maybe not as primary caregivers, but they're caregivers. And I
think it's important that well, I think that you know,
in general, I think that not necessarily just for people
with Alzheimer's, but caregivers of older people are younger. These days,
people are getting married later and so they arem in
(45:13):
kids later, and so children and grandchildren getting much more
involved in the in the caregiving, as you showed in
your case, and so it's something that becomes a sort
of a multi generational enterprise between parents, their kids, and
their grandparents. So I want to know flesh that out
(45:35):
a little bit more. Unfortunately, I need to stick in
one more break so folks don't go away. We have
a lot more in our final segment with Carol Steinberg
and Jim Taylor, So come right back.
Speaker 5 (45:50):
Mike Zurich three time California state champion in Greco Roman
wrestling at one hundred and fourteen pounds. Mike blind ST's
birth was born in Hartford, Connecticut. He was a six
time national placer, including two seconds, two thirds, and two fourths.
He also won the Veteran's Folk Style Wrestling twice at
(46:12):
one hundred and fifty two pounds. In all these tournaments,
he was the only blind competitor. Nancy Zurich a creative
spirit whose talents have taken her to the stage and
into galleries and exhibitions in several states. Her father, a
commercial artist who shared his instruments with his daughter and
helped her fine tune her natural abilities influenced her decision
(46:34):
to follow in his footsteps. Miss Zurich has enjoyed a
fruitful career doing what she loves. Listen Saturday mornings at
twelve Eastern for the Nancy and Mike Show for heartwarming
stories and interesting talk on the BBM Global Network.
Speaker 6 (46:51):
Are you struggling to care for elderly parents or a spouse?
Do you wonder if being a caregiver is making you sick?
Are you worried about taking time off work to care
for our elderly parents and balance work life and caregiving?
Has caregiving become exhausting and emotionally draining? Are you an
aging adult who wants to remain independent but you're not
sure how? I'm Pamela d Wilson. Join me for the
(47:13):
Carrying Generation radio show for caregivers and aging adults Wednesday evenings,
six Pacific, seven Mountain, eighth Central and nine Eastern, where
I answer these questions and share tips for managing stress,
family relationships, health, wellbeing and more. Podcasts and transcripts of
the Carrying Generation are on my website, Pamela Dwilson dot com,
(47:34):
plus my Caregiving library, online caregiver support programs and programs
for corporations interested in supporting working caregivers. Help, Hope and
support for caregivers is here on the Carrying Generation and
Pamela d Wilson dot com.
Speaker 2 (47:52):
Welcome back, folks. We have one more final segment with
Jim Taylor, the CEO Voices of Alzheimer's, and krol Steinberg,
veteran writer and author of a celebrated children's book, and
I want to talk about that book last second. We
had to sneak in a lot in our last piece here,
but it's an important piece about the impact on young caregivers.
(48:13):
So talk about that because you were involved, but also
your children.
Speaker 4 (48:20):
That's one of the reasons why it's so important the
legislation that Voices of Alzheimer's is working on with early
onset because if you think about it, we're talking about
parents most likely under fifty five years of age, people
in their forties, even in fifties, who potentially have young children,
(48:40):
who absolutely have no idea what this disease is about.
There's such a lack of education about it, and they're
most likely embarrassed because it's not like the older generation
who know peers who are going through the same thing.
They're isolated. The person in their classroom has no idea
(49:03):
what they're going through. They haven't seen this in their family,
or if they've seen it, they've seen it with an
older person. So it's a very different situation. And they
are called on quite often to help out with family responsibilities,
so they miss out on some social opportunities, etc. But
there is the plus side of being a young caregiver.
(49:25):
There are studies that show that people who help care
for someone with the disease like Alzheimer's or another disease,
do gain greater empathy, they do gain better social skills,
they have increased self confidence, and just think of the
impact on the person with the disease, whether it's a
(49:47):
parent or a grandparent, having a young person to interact with,
to do some of the intergenerational activities like I have
in my book. For the person with the disease, it
stimulates them. It gives them the socialization they need, which
is so important in terms of managing behaviors, in terms
of increasing their quality of life, in terms of even
(50:13):
normalizing the experience. So it's really a bonding experience for
people to not only care for a person with the disease,
but interact with them in social ways. It will as well.
My book, the intent is to really help children, as
I said, learn about the disease in a very age
(50:36):
appropriate way, take away some of the fear, take away
some of the confusion, but moreover, to really open up
a conversation with a parent or a grandparent so that
when the disease progresses, at least they have some background,
they have some footing to build on and to talk
more about the disease.
Speaker 2 (50:55):
Right, you know, and I'm thinking about what he was
saying before about you know, the sense of personal growth.
So you know that to me is important that you
realize that your relationship can continue to go forward with them,
with the person and just in a different way, in
a different way. But it's not just it is it
is honoring what happened in the past. But it's not
(51:18):
just about honoring what that person was. It's about who
the person is now, and you grow with that person
as you care for them.
Speaker 4 (51:27):
It's also a matter of great respect, right that just
because a person has the disease doesn't mean you can't
respect them, doesn't mean you can't look them in the
face when you're talking. There are so many things you
could do to destigmatize, to give back respect to the person,
(51:47):
and to help them live with the challenges that are
going to keep going.
Speaker 7 (51:53):
Right, Jim, pick up on that, Hi, some of the
things you said a little earlier, I think I have
told you before.
Speaker 3 (52:04):
I hate the term caregiver burden. Too often that becomes
a self fulfilling prophecy. And it is a difficult disease.
But you know, I think it's a tragic disease young
onset that no Carol was speaking of. But for older individuals,
you know, it's a very slowly progressing disease. The first
(52:27):
ten years of Jerry's illness were very manageable. It's only
the late stage that I found really difficult. And in
the twelve years total, I had great opportunity to become
a kinder person, a more thoughtful person. I learned patience.
(52:51):
I wish I had developed more of these skills when
I was a parent or earlier in life. My kids
and I have benefitted. So I really try to tell
both caregivers and patients that you have a choice. Attitude
is so important in determining how you will live this
(53:12):
chapter of your life, and I think the attitude of
the caregiver is extremely important because it very much affects
the person they're taking care of, so choose to approach
this as a positive potentially positive experience. Of course, their
difficulty and the patent as well. My wife always when
(53:32):
she spoke, like to talk about what the advantages or
what she'd learned being an Alzheimer's patient is the sense
that relationships were so much more important. It was very
easy for her to be present because she didn't have
a lot of other thoughts in her head, and people
interactions meant so much more to her. So she would
(53:54):
point out several of the things that she considered blessings
in her life. Even at the same time her cognitive
capacities were declining.
Speaker 2 (54:03):
Right, wow, well that's where we're going to have to
leave it today, and that note very positive and I
thank you for that. So, folks, once again, if you
want to listen to the show, you can go to
play go to a Bull Brave TV and look for
(54:24):
forty five forward. You can also listen to it as
a podcast on Spotify, Apple Podcast, iHeartRadio, other platforms wherever
you listen to your podcast. I want to thank Jim
and Carol for a terrific show. Thank you so much.
I've learned a lot I hope our audience has as well.
I want to thank my engineer Alex for as part
(54:44):
of his terrific team, helped me through every show and
that I just want to give a short plug for
next week. Join me next Wednesday at seven pm Eastern,
I'll be talking to Rob Esposito. He's the founder of
Relocators and the author of a new book, Nobody Move
Without Reading This, which addresses the stresses and challenges and
(55:05):
strategies of moving through life's many transitions. So until then, folks,
keep moving forward. Forty five Forward.
Speaker 1 (55:18):
This has been forty five Forward with host Ron Rowell.
Tune in each week as Ron tackles the many aspects
of health, finance, family and friends, housing, work, and personal pursuits,
all as part of an integrated plan and to take
charge of your unretiring life during these uncertain times. Wednesdays,
(55:41):
seven pm Eastern on the Bold Brave TV Network powered
by B two Studios.
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