FAMILY COMES FIRST – THE HENLEY FAMILY
INTRODUCTION IN ORDER OF APPEARANCE:
VINCENT J. RUSSO
VICTORIA ROBERTS DROGIN
DR. IRVING GOMOLIN
MARY ANN RAGONA
MONSIGNOR JAMES McNAMARA
MR. RUSSO: Welcome everyone to Family Comes
First. I’m Vincent J. Russo.
MS. DROGIN: And I’m Victoria Roberts
Thank you for joining us today.
According to recent estimate as many as
5.3 million Americans have Alzheimer’s disease.
It is the seventh leading cause of death
Here’s a brief video on how Alzheimer’s
affects the brain.
Let’s take a look.
SPEAKER: What is Alzheimer’s disease?
Alzheimer’s is a slow, fatal disease of the
brain affecting one in ten people over the age
of 65. No one is immune.
The disease comes on gradually as two
abnormal protein fragments, called plaques and
tangles, accumulate in the brain and kill
brain cells. They start here in the hippocampus,
the part of the brain where memories are
first formed. Over many years time the
plaques and tangles slowly destroy the
hippocampus, and it becomes harder and harder
to form new memories. Simple recollections from
\ • I
1 a few hours or days ago that the rest of us might
2 take for granted are just not there.
3 After that, more plaques and tangles
4 spread into different regions of the brain
5 killing cells and compromising function
6 wherever they go. This spreading around is
7 what causes the different stages of Alzheimer’s.
8 From the hippocampus the disease spreads
9 here to the region of the brain where language
10 is processed. When that happens it gets tougher
11 and tougher to find the right word.
12 Next the disease creeps towards the front
13 of the brain where logical thought takes place.
14 Very gradually a person begins to lose the
15 ability to solve problems, grasp concepts and
16 make plans.
17 Next the plaques and tangles invade the part
18 of the brain where emotions are regulated.
19 When this happens, the patient gradually loses
20 control of the moods and feelings.
21 After that, the disease moves to where the
22 brain makes sense of things it sees, hears and
23 smells. In this stage, Alzheimer’s wreaks havoc
l / 24
on a person’s senses and can spark hallucinations.
25 Eventually the plaques and tangles erase
~ 1 a person’s oldest and most precious memories
2 which are stored here in the back of the brain.
3 Near the end, the disease compromises a
4 person’s balance and coordination and in the
5 very last stage it destroys the part of the
6 brain that regulates breathing and the heart.
7 The progression from mild forgetting to
8 death is slow and steady and takes place
9 over an average of eight to ten years. It is
10 relentless and for now incurable.
11 Helping your family, friends and neighbors
12 to better understand Alzheimer’s will reduce
13 stigma, improve care and even help the fight
14 for a cure.
15 Thanks for helping to do your part.
16 MR. RUSSO: As you can see in that video you
17 know that Alzheimer’s disease affects seniors,
18 but what is most shocking is that it also
19 affects people under the age of 65. This is
20 very alarming. There are over 250,000 Americans
21 with Alzheimer’s disease under the age of 65.
22 MS. DROGIN: Vincent, I understand that this
23 is referred to as early-onset Alzheimer’s
~ 24 disease. It seems impossible, but a recent
25 report by the Alzheimer’s Association has
estimated that ten million baby boomers are
2 projected to have Alzheimer’s disease and that
3 the number of people under age 65 with Alzheimer’s
4 continues to increase.
5 MR. RUSSO: Victoria, I cannot fathom how
6 these families are coping.
7 Today we will meet a most remarkable family,
8 the Henley family. Mike was diagnosed with
9 early-onset familial Alzheimer’s disease at
10 age 36. His wife, Karen, and two children,
11 courtney and Brandon, have become his caregivers
12 for the past nine years. And what’s more
13 frightening is that both Courtney and Brandon
14 have a fifty fifty chance of inheriting
15 that gene that causes familial Alzheimer’s
17 MS. DROGIN: It’s a challenge that I
18 cannot imagine, Vincent. And the family we
19 will meet today is truly inspiring.
20 But first we are going to provide you
21 with information and resources that can help if
22 you have a family member with Alzheimer’s
23 or even suspect that they may have Alzheimer’s.
\~/ ; 24 MR. RUSSO: We are privileged to have
25 Mary Ann Ragona, the Executive Director of the
Alzheimer’s Association Long Island Chapter,
and Dr. Irving Gomolin, the Chief of Geriatric
Medicine and Clinical Pharmacology Wintrop
Thank you so much for being here.
MS. DROGIN: Thank you.
DR. GOMOLIN: Thank you.
MR. RUSSO: And Mary Ann, welcome back.
MR. RAGONA: Thank you.
MR. RUSSO: This is the second time on Family
MS. RAGONA: Repeat performance.
MR. RUSSO: Doctor, thank you so much for
taking time out of your very busy schedule,
We are going to start with Mary Ann with a
very simple question. I’m 56 years old. I
see these statistics. It’s frightening.
What is going on? So many people are
being diagnosed with Alzheimer’s under the age
MS. RAGONA: Sadly, Vincent, we don’t
really have an answer. I wish we did. This is
a new dynamic in the world of Alzheimer’s
disease. It’s been steadily increasing possibly
/~ 1 ( for the last two to three years. As you said
2 earlier, the national association indicates
3 that there’s close to 250,000 cases in this
4 country of individuals with Alzheimer’s
5 disease under the age of 65.
6 On Long Island in my chapter right now I
7 have just about 40 cases, which is double what
8 we had last year, but still no real scientific
9 evidence as to why all of this is happening.
10 Do we suspect things, yes, but real scientific
11 evidence, no.
12 MR. RUSSO: Just from my own personal
13 well-being, what are the chances that I will
14 have Alzheimer’s one day?
15 MS. RAGONA: Again another difficult
16 question because there is no real scientific data
17 that can tell you at this point who is going to
18 get this and who is not going to get this.
19 We do suspect that there’s genetics
21 We do know that if there is a family
22 history, such as the Henley family, we had a mom,
23 a brother and another brother impacted by
L’ ” .. “// 24 Alzheimer’s disease. Those are strong
25 predictors that we may see it in the family.
(~ 1 But then we have other cases in the office
2 where there is absolutely none in the family
3 and we are looking at an early-onset case. It’s
4 a very difficult situation right now.
5 MR. RUSSO: We just don’t know. I want to ask
6 you about something you’ve told me before which
7 is Alzheimer’s is not just about memory loss.
8 Talk to us about that.
9 MS. RAGONA: That was everyone’s
10 preconceived notion. Alzheimer’s was just a
11 problem with memory. Mom is getting older.
12 Dad is getting older. They have a little
13 problem with memory.
14 What people don’t realize that it is
15 actually a disease process. It is fatal. It is
16 the seventh leading killer in this country. It
17 spans over a period of time. Many changes
18 occur over those time frames and families need
19 an enormous amount of support to help them
20 get through this.
21 MS. DROGIN: Doctor, we are listening to
22 these statistics. A couple of questions
23 come to mind.
~ -. -/ 24
First of all, with the older population we
25 did say, well, grandma is getting older. And is
(~ 1 there a difference between dementia and
3 DR. GOMOLIN: Well, that’s a good question. I
4 think people traditionally felt that Alzheimer’s
5 was a very severe form of dementia and just
6 having dementia was perhaps a milder form of
7 the disease.
8 Today we know that Alzheimer’s disease
9 is the most common form of dementia. As a matter
10 of fact, when it was first described, it
11 was described at the turn of the century in
12 the early 1900s in a young person.
13 Subsequently we’ve learned that it is the
14 most common form of dementia in older people.
15 While it’s shocking to see this syndrome in
16 younger people, it’s not particularly surprising.
17 We don’t know if the incidents of this is
18 increasing or in fact the population is getting
19 larger as a whole, the elderly population
20 particularly, and we are slowly getting better at
21 recognizing the disease and making a diagnosis.
22 MS. DROGIN: Yes, and still no understanding
23 as to the cause or the cause of early-onset.
DR. GOMOLIN: Well, early-onset does have
25 a strong genetic predisposition as Mary
1 Ann mentioned but what the exact genetic
2 deficit is or why it exists, I don’t have an
3 answer for that.
4 MS. DROGIN: Is it understood that
5 early-onset Alzheimer’s is typically genetic
6 primarily or are there” cases where there is no
7 history in the family that one is aware of?
8 DR. GOMOLIN: It would depend on just how
9 early you define early-onset. It’s an
10 arbitrary distinction. At the age of 65 you are
11 considered old and at the age of 64 you are
12 considered not old so how early is early.
13 But the earliest ones, the cases being
14 described today, clearly have a much higher
15 genetic predisposition and prevalence
16 in history to go along with it as opposed
17 to the people who are developing it at the
18 age of 65, 75, 85.
19 MS. DROGIN: Can we do anything to prevent
21 DR. GOMOLIN: Prevention requires us to
22 understand what causes the disease process.
23 There are lots of associations and some ways and
perhaps one can maintain cognitive function
25 through successful aging, but the word
prevention in terms of having a vaccine or
knowing, you know, something in particular
to identify someone who might be at risk and
prevent the disease from emerging, we don’t
have that currently. What we do have are
therapies, both pharmacologic and non-pharmacologic
which help to manage some of the manifestations
of the disease process.
MR. RUSSO: It sounds like then we need a
lot of research that has to be done because we
are at the early stages and we’ve got all
these boomers who are also going to be aging.
Mary Ann, research, talk to us about that.
MS. RAGONA: Research is ongoing, but
research is definitely an issue right now.
It’s in danger of being slowed down because
we can’t get the necessary funding to do
the research that’s needed to try to get to
the bottom of some of these issues.
We had a great amount of movement in the
research world over the past several years and
then I’d say about two years ago we began to
cut functioning at the Federal level and when
we started to cut funding, obviously we started
to cut the types of projects that we were doing
at the ALIA.
We continue as an organization to fund
private research projects. We actually heard
from a researcher over the weekend who is doing
some interesting work with the protein that
they believe has some connection to
Alzheimer’s disease, but it’s going to take
years unfortunately. These things don’t
MR. RUSSO: As a society we all need to
focus in because we have a crisis on our hands
and we really need to make sure we are putting
those dollars into the research for our
well-being as you know. We are all going to be
affected one way or another whether we come down
with the disease or whether we are a caregiver
for someone with the disease.
I want to thank both of you so much for
joining us today on Family Comes First.
So much appreciation I have for all the
good work that you are doing.
For more information on the Alzheimer’s
Association Long Island Chapter you can go to
their website at www.alz.org/longisland.
When we come back we will meet with the
pI Henley family.
2 Stay with us.
3 KAREN HENLEY: When we first noticed Mike
4 was having problems I guess it was in the summer
5 of 2000. We were away on vacation, and he forgot
6 where my daughter was. Usually people, you know,
7 they forget where the keys are or what they walked
8 into a room for, but we made extensive plans
9 with another family to break up and go to
10 different places and in the middle of our part
11 of the trip with my son, he looked at me and
12 said, where is Courtney anyway. So at that point
( ; 13 I knew that there was going to be a problem.
14 I made an appointment right away with his
15 family doctor. My biggest concern actually
16 was because of my husband’s age, which was 36,
17 that the doctor wasn’t going to take my
18 concerns seriously, but she did take them very
19 seriously, and she sent us for extensive testing
20 and after two or three days of the neuropsyche,
21 the doctor pulled me aside and she said this
22 is definitely Alzheimer’s disease so he was
23 officially diagnosed with early-onset Alzheimer’s
at the age of 36 in April of 2001.
25 It was a really difficult time in our lives
0 1 because I knew he had a problem but he was very —
2 part of the disease is that people become very
3 they just don’t care about anything. They are
4 very laid back. There was no concern about
5 the house, the kids, and I was dealing with
6 a husband who was just diagnosed, two young
7 children. My children were seven and nine when
8 he was diagnosed. He just didn’t seem to care.
9 I knew he was sick but at that same time I had
10 a house to run, I had children to take care of
11 and it was a very, very frustrating time for me.
12 The Alzheimer’s that my husband has is called
\ 13 familial dementia, familial Alzheimer’s dementia.
14 It runs in families. His mom was diagnosed at
15 the age of 45. She passed away when she was 52.
16 His brother was diagnosed when he was 41, and
17 he passed away at the age of 43.
18 So part of the reasons that I do what I do
19 in speaking out is that each of my children
20 have a fifty fifty chance of inheriting the
21 gene that causes this disease.
22 My husband has been home from the day
23 of diagnosis until present. It’s one of the
things we are striving to do to keep him at home.
25 It’s been extremely difficult keeping him at
0 1 home, emotionally, physically, financially, but
2 it’s where I think he belongs. When he was
3 first diagnosed the doctors had given us a five
4 to seven year window of the time that he would
5 have. He’s on nine years now and everything
6 is because of the care that he gets at home,
7 where he is with the family around him. I
8 wouldn’t trade it for the world. Right now
9 my husband is on hospice. He’s been on hospice
10 for about a year and a half, two years now.
11 He requires 24/7 care. He can no longer talk.
12 He can’t walk. He can’t feed himself. It’s
( , 13 like taking care of an infant to be honest with
14 you. He requires total care at this point in
16 Some of the biggest challenges that I face
17 everyday is the unpredictability. The disease
18 / is unpredictable. My husband could be fine
19 one minute, the next he could have a fever. One
20 day he woke up he was fine. The next day he woke
21 up with a punctured lung. We had to rush him to
22 the hospital.
23 My strength one hundred percent is my
L) 24 faith. People ask me all the time. If I did
25 not have my faith, I don’t know where I would
1 be to this day.
2 My motto is the footprints poem. I have it
3 everywhere in my house. It’s on my ring. It’s
4 on my necklace. I have blankets and posters
5 because that is honestly and truthfully what
6 gets me through every single day. I wake up
7 and pray to God for the strength to get
8 through another day.
9 MS. DROGIN: Welcome back to Family
10 Comes First.
11 Today we are talking about Alzheimer’s
12 disease and how it affects the family.
13 MR. RUSSO: We are now joined by the Henley
14 family; Karen, Courtney and Brandon.
15 Thank you all for being here today. I
16 cannot say enough about my belief that you are
17 such a loving and caring family and going
18 through such challenges so I really appreciate
19 that you are willing to be on the show today.
20 Thank you so much.
21 I’m going to start, Karen, with the
22 challenges you face today, taking care of Mike,
23 your husband, working and being there for your
· 24 ~~ children; how do you do it, what are your concerns?
25 KAREN HENLEY: It’s really difficult. I’m
(~.~ 1 not going to lie. It’s very hard working
3 One of the concerns I have at this point
4 in time is I always worry that I’m taking too
5 much time away from the children to take care of
6 my husband. I’m always on the fence like maybe I
7 should be spending more time with them, doing
8 more things with them. That’s a big concern
9 for me, and now that we are nine years into
10 this disease and, you know, we’ve run the gamut
11 with the different stages, not being able to
12 talk, walk, the anger, the agitation.
\. 13 ” Honestly right now our biggest concern is
14 financial. It’s a very, very difficult thing.
15 MR. RUSSO: Are you receiving any financial
16 support, government benefits, for example? Are
17 they helping you, like Medicaid, is that
19 KAREN HENLEY: Well, yeah, Medicaid. My
20 husband has been on Medicaid since he was
21 diagnosed. Thankfully in an odd sense his mom
22 had been diagnosed with it so we knew basically
23 what we had to do when he was diagnosed so we
~) 24 got everything in place for that.
25 But it’s difficult. He gets aides at home,
1 but, you know, they don’t come. It’s very hard.
2 It’s hard keeping him at home. We’ve had
3 to fight tooth and nail for everything we have.
4 MS. DROGIN: You guys have been so there for
5 your mom. What’s it like? What’s it like to
6 have experienced this from being real little.
7 BRANDON HENLEY: It is difficult because
8 we don’t really know what could have been or what
9 we could have done or how it would be different.
10 This is what we know what our lives have been so
11 it’s really difficult.
12 MS. DROGIN: It is the reality.
13 BRANDON HENLEY: Yes.
14 MS. DROGIN: But yet you have friends
15 and you see your friends’ lives are different.
16 COURTNEY HENLEY: We go out with our
17 friends just like anybody. It’s just a little
18 but what they don’t understand sometimes is the
19 amount of planning that has to go into going
20 to things because I know my friends just like,
21 oh, let’s go somewhere tonight and I’m like, well,
22 I wish I would have known about this a couple of
23 days ago because then we could coordinate a ride
~, 24 and if the aide is not there or had to leave,
25 we can’t get to somewhere and we have to help out
r” 1 at home so it’s kind of like the spontaneity
2 isn’t there like all my friends have but
3 otherwise we get to see them.
4 MS. DROGIN: Courtney, you have become sort
5 of a resource for your friends you were telling us.
6 COURTNEY HENLEY: Yeah. One of my friends
7 has a family member that was just diagnosed with
8 it, and there are a lot of questions that come
9 up when the diagnosis is first there, and she
10 was asking me about things that happened with my
11 dad and just to kind of get comfort that the
12 same things were happening with her grandma, just
J 13 to know that this is how the progression goes,
14 and if she has questions or anything, she knows
15 she can come to me because I’ve been through
16 it so I can give her a better answer than somebody
17 who has no idea what’s going on so it’s nice to
18 know that she feels comfortable asking because a
19 lot of kids would be a little put off by that.
20 MR. RUSSO: I think a lot of those kids
21 are unfortunately going to have, if not
22 already, have grandparents especially
23 those grandparents who are over the age of 85.
There are over five million people in America
25 with Alzheimer’s.
1 MS. DROGIN: Even recently in the Times
2 there was an article about a family in Colombia.
3 KAREN HENLEY: Yes. That just solidified
4 for me how huge of an issue this is.
5 It was a woman, her husband had passed away
6 from Alzheimer’s, and she was caring for four of
7 her children who developed early-onset Alzheimer’s.
8 They all developed it in their 40s. So here is
9 this woman in Colombia caring for her four
10 children and what really struck me is this one
11 man had a son and daughter and they looked
12 like Courtney and Brandon’s age and the young
13 boy was feeding his dad. The daughter was
14 holding the father’s hand and I’m like that could
15 be Mike with Courtney and Brandon.
16 It transcends all cultures, ages, everything,
17 and it’s a huge — it’s just horrific. It’s just
18 a horrific disease, and it really needs to end.
19 MS. DROGIN: And you are doing so much.
20 KAREN HENLEY: Yes.
21 MS. DROGIN: All of you r~ally have been so
22 generous with your time and with your personal life
23 and sharing it to create awareness.
L/ 24 MR. RUSSO: You’ve become an advocate, I know
25 this. I’ve heard you speak to health care
(~ 1 professionals and other families similarly
2 situated and you’ve become a true advocate.
3 Why is that important to you?
4 KAREN HENLEY: Oh, it’s a huge thing for
5 me. First and foremost it’s for them. I’m a
6 mother who has two children who are — They are
7 in danger of getting this disease so I do it to
8 fight for their future to make sure that this
9 disease is cured.
10 Years ago AIDS was a huge disease. If you
11 got the disease, you died from it. People
12 started voicing their opinion in Washington.
13 Money starting coming in for research and now
14 people can survive with AIDS and that’s what I
15 would love for Alzheimer’s and the second part
16 of that is Alzheimer’s — there are no survivors
17 of Alzheimer’s. Alzheimer’s patients they
18 don’t have a voice. Very soon into this disease
,19 they lose their voice. Either you don’t
20 understand them, they don’t speak. You know,
21 someone needs to speak up for them. I do it in
22 honor of my husband. He doesn’t deserve this.
23 He’s lost out on their whole life growing up,
and, you know, someone needs to speak up for them,
25 and I feel that that’s what I could do. It’s one
of the few things that I can do.
2 My whole thing for years is that I don’t think
3 enough research goes into it because they feel
4 it’s an old person’s disease. They’ve lived their
5 life. It’s a sad situation, but what could we do,
6 but more and more younger families are dealing with
7 this disease and that’s one of the first things I
8 told them, research. We definitely need research,
9 and we need funding for keeping the patient at home.
10 Mean — like I said I’m fighting tooth and nail
11 for the services for my husband.
12 MR. RUSSO: Let’s talk a little about here on
13 Long Island the Alzheimer’s Association Long Island
14 Chapter, and there are chapters allover the
15 country, but your experience seeking help and
16 support from the local chapter.
17 KAREN HENLEY: I mean they have just been
18 a phenomenal source of information and help.
19 Recently when we tried to get to Washington
20 they were helping me look for respite care for him.
21 They have just been there. You could call them up
22 for anything, and they are there for you.
23 MS. DROGIN: Thank goodness.
KAREN HENLEY: Yeah. One of the things
25 they just recently did at the luncheon that I
I~ . 1 spoke at they developed the Mike Henley Advocate
2 of the Year Award in honor of my husband so
3 that each year they’ll give it to somebody.
4 They’ll present it to somebody who was a deserving
5 advocate for this disease and to me that means
6 the world.
7 MR. RUSSO: And we wish you all the best.
8 KAREN HENLEY: Thank you.
9 MS. DROGIN: Thank you for being here.
10 And now we turn to Monsignor McNamara for a
11 spiritual reflection.
12 MONSIGNOR McNAMARA: Karen has great
13 strength as she speaks about her husband, Mike,
14 and his struggle with Alzheimer’s disease, how she
15 is able to care for him each day is amazing
16 and I think edifying.
17 His terrible disease took his mother and
18 brother at an early age and now it is ravaging
19 his body. In addition, she’s concerned whether
20 or not her children could inherit this disease.
21 I think that’s quite a burden. How does she do
22 it? Well, she herself gives tremendous witness
23 as we see. Her witness is a homily worth hearing
24 and an example worth imitating. She takes each
25 day at a time, and she finds strength in her
faith. Instead of pushing God away by asking
why me, she allows God to be her rock of refuge.
In light of her struggles, what could I
possibly complain about today.
MS. DROGIN: For more information on resources
regarding Alzheimer’s disease and for the legal
planning to preserve one’s dignity and protect
assets please visit www.ald.org/longisland or your
MR. RUSSO: Thank you.
MS. DROGIN: www.vjrussolaw.com.
MR. RUSSO: I would just like to add that the
Alzheimer’s Association Long Island Chapter has a
legal advisory committee so please call the
association for help at (631) 580-5100.
MS. DROGIN: Today we have learned an
important lesson that we must do our best to combat
this horrible disease, and we can find hope and
strength from family and resources that are
available in our community.
MR. RUSSO: Well said, Victoria. Thanks to
all our viewers for joining us today and
remember family truly does come first.