~ FAMILY COMES FIRST – CARPENTER FAMILY

INTRODUCTION IN ORDER OF APPEARANCE:
VINCENT J. RUSSO
VICTORIA ROBERTS DROGIN
PAMELA MASTROTA
GEORGE OREFICI
GARY CARPENTER
PATRICIA CARPENTER
DANIELLE CARPENTER
( / KENNY CARPENTER
RYAN CARPENTER
MONSIGNOR JAMES McNAMARA
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I, /.~. 1 MR. RUSSO: Welcome everyone to Family Comes
2 First. I’m Vincent J. Russo.
3 MS. DROGIN: I’m victoria Roberts Drogin.
4 Thank you for joining us today.
5 MR. RUSSO: Today we are focusing on living
6 with multiple sclerosis which I know is a
7 topic very personal to you, victoria.
8 MS. DROGIN: That’s true, Vincent. A number
9 of years ago I woke up and experienced numbness
10 and tingling in my hands, and it had grown
11 increasingly worse. I went to a number of
12 doctors who told me they wanted to test for MS and
,: 13 that I was presenting symptoms that indicated
14 MS, and I was in the age bracket for women where
15 it shows up a lot.
16 I was very fortunate that ultimately it
17 wasn’t mUltiple sclerosis, but the period of
18 time when I was really thinking about what
19 that would mean in terms of how my life would
20 change, changed my life.
21 MR. RUSSO: That had to be terrifying.
22 MS. DROGIN: It was. It was terrifying, and
23 I’m very grateful that it wasn’t MS.
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MR. RUSSO: Thank goodness that MS is not a
25 fatal disease. However, it is unpredictable

and inevitably impacts one’s quality of life.
MS. DROGIN: Absolutely. A little later we
will speak to Gary Carpenter who through his
mindset and determination has conquered this
disease.
MR. RUSSO: Before we chat with Gary, we
have experts with us who can address the resources
available in the community as well as the
financial implications.
Please join me in welcoming Pam Mastrota,
the President of the National Multiple Sclerosis
Society, Long Island Chapter, and George Orefici,
a financial advisor with Metropolitan Life.
MS. DROGIN: Thank you both for joining us
today. Welcome.
MS. MASTROTA: Thank you.
MR. OREFICI: Thank you.
MR. RUSSO: Thank you. Pam, I’ve read that
there are over four hundred thousand Americans
with MS and over two million worldwide.
Tell us about this disease.
MS. MASTROTA: Multiple sclerosis is
unpredictable, and it is often a disabling disease
of the central nervous system that impacts the
flow of information within the brain but also
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(~ 1 between the brain and the body.
2 MR. RUSSO: It affects everybody differently,
3 you would think.
4 MS. MASTROTA: It sure does.
5 MS. DROGIN: Is it difficult to diagnose or
6 misdiagnose, MS?
7 MS. MASTROTA: It is. To your personal
8 story, Victoria, MS often has so many
9 different symptoms that occur, and in one person
10 they may not be the same or consistent so you
11 might have a lack of coordination with performance
12 issues around memory, concentration, slurred
( 13 speech, tingling, numbness, but they may not
14 present themselves consistently so it may not
15 look just like MS.
16 Fortunately with the technology of MRI, it’s
17 much more definitive to diagnose MS.
18 MS. DROGIN: So if people were presenting
19 symptoms, you would say to have the MRI.
20 MS. MASTROTA: Absolutely.
21 MR. RUSSO: How did you become an advocate with
22 regard to this?
23 MS. MASTROTA: I did my first MS walk
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when I was 12 years old because of a personal
25 connection to MS and then obviously many years
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~ 1 later I’ve been in a not-for-profit community
2 for such a long time, but I had an opportunity
3 this opportunity came up at the chapter eight and
4 a half years ago, and I was looking for an
5 opportunity to make a difference in the lives
6 of people with MS.
7 MR. RUSSO: So your parents instilled values
8 in you when you were a child.
9 MS. MASTROTA: Absolutely.
10 MR. RUSSO: Volunteering.
11 MS. MASTROTA: Absolutely.
12 MR. RUSSO: That’s wonderful.
..
— ” 13 MS. MASTROTA: It’s a pleasure.
14 MS. DROGIN: George, Gary is fortunate enough
15 to be able to continue to work and to live his
16 life. He mentioned to us that he has disability
17 income insurance.
18 What is this and how might this help people
19 in that situation?
20 MR. OREFICI: Sure. Disability insurance
21 is a type of coverage that pays your income in
22 the event you did become disabled, and it will
23 pay you an income for a period of time depending on
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what your disability is and usually it’s a benefit
25 that’s offered at work or you can have your own
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individual policy.
It’s important to have obviously if you are
no longer able to work to be able to provide an
income for your family.
MS. DROGIN: If Gary were to present symptoms
different than what — he’s very functional today.
If that were to change, this would be the insurance
that would kick in to protect him?
MR. OREFICI: Right. I think that he would be
able to then focus mostly on his illness as opposed
to worrying about expenses in the household because
he’ll have an income coming in.
MR. RUSSO: It would be important, if you are
an employee, to check whether you have this
disability income insurance?
MR. OREFICI: Sure. Absolutely. The benefits
that you have at work especially disability
income and what the definition of a disability
~s going to be, how much they would pay you,
how long they will pay you, under what
circumstances you qualify, et cetera.
That would really be important to know now
rather than when you are on the verge of a
disability.
MR. RUSSO: Sure. There are a number of
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~ 1 people who aren’t as fortunate as Gary and able
2 to continue to work with this disease and so
3 often when one can no longer work, they apply for
4 Social Security disability insurance, and I think
5 at that point my question for you is what
6 financial planning should be done at that point
7 in light of the fact that there will be this ongoing
8 need for care into the future?
9 MR. OREFICI: When somebody gets —
10 Three months before their birthday they get
11 a statement from Social Security. Most people
12 just take a quick glance at it. You really should
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\ 13 take a strong look at it and see what your benefit
14 ultimately will be in the event you did become
15 disabled.
16 Social Security disability’s definition is a
17 little more stringent, but if indeed you had MS,
18 you would qualify. But certainly it’s not going
19 to be enough money relative to what you were
20 earning to help support the family so you are
21 going to want to take a look at fixed expenses
22 versus some of what you spend as discretionary
23 cash flow are.
L. 24 MR. RUSSO: I would think as a financial
25 advisor you would say that’s not the time you
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start to plan.
2 MR. OREFICI: No.
3 MR. RUSSO: You really need to be planning your
4 entire life once you are working and in the work-
5 force and putting money aside and building a
6 nest egg for the future.
7 MR. OREFICI: Absolutely. One of the
8 questions I ask clients is if something happened to
9 you yesterday, if you died or became disabled,
10 what is the plan and what would your family
11 be living on in the event that would happen. So
12 you need to do that beforehand because once you are
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14 that kind of coverage.
15 MS. DROGIN: George, how does long-term care
16 insurance fit into this picture?
17 MR. OREFICI: Well, long-term care insurance
18 is different than disability income. Disability
19 income is going to pay you an income. Long-term
20 care insurance is going to pay for services that
21 your health insurance or Medicare would not
22 normally pay for.
23 MS. DROGIN: You need both.
~~- 24 MR. OREFICI: It would be advisable to have
25 both, certainly, so that in the event your family
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n 1 could no longer take care of you or you require
2 skilled nursing care, this type of insurance
3 could help you either at home or in a facility.
4 MR. RUSSO: So there’s going to be some serious
5 financial challenges when one finds out one day
6 something happened and now they have MS, and so
7 the planning in advance is important and then
8 the planning going forward.
9 Any suggestions or tips that you would like to
10 share with our viewers from the financial planning
11 angle?
12 MR. OREFICI: Well, certainly I will sit with
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\ 13 a plan and go through everything that you have,
14 kind of like an aerial view of your entire
15 situation and verify that you have this coverage
16 at work. Sometimes you do and sometimes you
17 don’t. If you work for a bigger corporation,
18 more than likely you do or there might be a
19 limit on the benefits that you have.
20 Certainly these are documents and things
21 that you want to look at. You don’t want to be
22 scurrying around for things when you are in the
23 crisis situation. You would like to have
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everything in one place and be able to say, oh,
25 this is the plan at this point and focus what
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it is you need to do to get better.
2 MR. RUSSO: I have a follow-up question on the
3 long-term care insurance.
4 Are you finding that most people in there
5 fifties have long-term care insurance or they
6 don’t have long-term care insurance and what are the
7 consequences of not having the insurance?
8 MR. OREFICI: Well, I would say a share of
9 people have this particular type of coverage. A
10 lot of people don’t feel they are going to
11 need it.
12 MR. RUSSO: They are in denial.
13 MR. OREFICI: They are in denial. They are not
14 really sure what it does. Some people feel that
15 it’s expensive. Although relative to the cost of
16 getting care in a facility or getting care at
17 home, it’s kind of a drop in the bucket to use that
18 expression.
19 If you don’t have any kind of coverage, then
20 it’s going to be a private pay type of a situation,
21 and money that you think you are going to leave to
22 your spouse or your family, might have to be used
23 to pay for your care.
24 MR. RUSSO: So that could be devastating
25 financially.
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MR. OREFICI: Absolutely.
2 MR. RUSSO: We all need to plan in advance and
3 think about whether long-term care insurance fits.
4 MR. OREFICI: Absolutely.
5 MR. RUSSO: Pam, coming back to you and your
6 work with the MS Society of the Long Island Chapter.
7 Can you share with us the services that you are
8 providing?
9 MS. MASTROTA: Sure. The Long Island Chapter
10 is located in Melville, and we serve both Nassau
11 and Suffolk County, and we have over 60 programs
12 and services for people with MS. And some of
13 them include support services, counseling series,
14 special recreation home-bound program, respite,
15 financial assistance. And we often get the kind
16 of questions that George just referred to in terms
17 of financial planning and also legal type services
18 as well.
19 MS. DROGIN: Looking to the future, Pam,
20 is there a cure for MS?
21 MS. MASTROTA: There is not a cure currently
22 for multiple sclerosis, but there are so many
23 treatments available especially in the last 15
years. The MS Society is one of the largest
25 funders in the world for MS research so there are
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medications to slow the disease and also quite
a few medications on the market with
symptom management to deal with the types of
symptoms that people deal with on a day-to-day
basis.
MR. RUSSO: We are going to be speaking with
Gary a little later, and he’s going to be very
modest about his involvement with your
organization.
Can you share a little bit of what Gary
has meant for the Long Island Chapter?
MS. MASTROTA: Gary has been a tremendous
leader in the organization. He was my first
board chair when I came into the Chapter eight
and a half years ago and really has championed
the efforts around creating an early diagnosis
program, an ambassador at that program. He speaks
and has provided such a positive role model to
people with MS. In addition, as a board member
Gary was probably one of our biggest fund-raisers
and raised a quarter of a million dollars in the
years that he’s been involved. He now sits on the
advisory board but is incredibly involved with the
Chapter. He takes phone calls daily, nightly.
He is on call, and we are really very appreciative
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1 of his support to the Chapter.
2 MR. RUSSO: That’s amazing. Well, thank you
3 both for being with us today on Family Comes First.
4 When we come back we will sit down with
5 Gary Carpenter and learn how he and his family
6 adjusted to living life with MS.
7 Stay with us.
8 GARY CARPENTER: Probably when was the first
9 time that I saw something was different, I
10 would say about 18 years ago. 18 years ago
11 because I was a baseball player, and during games,
12 prior to that and during it, I saw that there was a
(
13 problem. I wasn’t able to see the ball clearly,
14 and I could get hurt from that. I knew something
15 was wrong and then I was told by my coach at
16 that time that I really think I should have
17 this looked at.
18 PATRICIA CARPENTER: We went from doctor
19 to doctor to doctor. He thinks it was all in
20 one day. It was a step at a time and searching
21 for answers because nobody really knew what
22 was wrong with him. They thought it was a
23 brain tumor. They thought it was Lyme disease,
(,~– 24 encephalitis, and it took a good two years before
25 he got diagnosed.
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GARY CARPENTER: What is happening to me and
then I went through the explanation as to what
MS is. It’s a neurological disease, and it’s
touched you. It’s touched you. Nobody in my
family ever had it, none of my friends I knew
at that time had it. I didn’t even know what it
was at that time.
PATRICIAN CARPENTER: As a nurse, I started
investigating to find out what is really going
on with Gary and doing some research, and I came to
the conclusion that he had MS before we were
even told by the doctor.
GARY CARPENTER: Yes, I was depressed. I
was very, very depressed. Probably during that
time, and there’S not one day in particular, it
was just looking at my family, looking at my
lovely wife, looking at my children who were a
lot younger, and I said to that, there’s no way
in the world I am going to let my family down
so immediately from that point, and it happened
probably very quickly, I realized that I needed
to get my act together and get out of this
quote depression, okay, and find out how to
deal with it which I was able to do.
PATRICIAN CARPENTER: And what I did was I
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drew two pictures for him. I drew a picture
I cut out pictures from a magazine of a man
with his children and then I took a picture of a
man in a wheelchair, and I said you’ve got
two choices. There’s two roads in life. You
could sit here and feel sorry for yourself
and continue to grieve and you are going to be
that man in the wheelchair and you are not going
to have kids running to you or you could choose the
other path in life and you could be that man
standing over there with his children all around
him. He decided I’m going to grab the bull by the
horns, and I am going to overcome this.
GARY CARPENTER: I really think that my
family, my children, understand what has happened
to me. They heard enough of it. They have seen
it. They have seen me in action, and they
know their father is still very, very active.
Basically my first kid, my oldest
daughter, Danielle, I was very nervous when
she found out about it because she’s my first kid,
and I didn’t know what thought practice they would
go, but she was very supportive as she grew up.
DANIELLE CARPENTER: I think I first
realized that my dad was diagnosed with multiple
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1 sclerosis when I was in sixth grade.
2 I remember my mother got a call actually
3 from him at the airport, and he lost his ability
4 to walk. I remember my mom crying, but I do
5 remember my mom going through a lot with my dad.
6 There were a lot of doctors’ appointments. I·
7 think at that point I was too young to realize
8 something — what was wrong, but I knew
9 something was going on.
10 When we were little, my sisters and I, we
11 used to go to my father’s softball games all the
12 time and then we realized when we became a
13 little older 6, 7 and I was in eighth grade,
14 there were no longer softball games for us to
15 go to, sporting activities so I think it kind of
16 hit home kind of hard really quickly.
17 KENNY CARPENTER: Growing up with my dad
18 being already diagnosed with MS, I quickly
19 adapted to it. He did everything he can to
20 be a normal type of dad that any other dad
21 would be. He was there for me. We played
22 baseball which he really got me into so we’d be
23 in the backyard having catches. We do
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everything the same. It was almost like I had
25 there was nothing wrong with him so growing up
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I- ‘ 1 I had the perfect childhood growing up. I can’t
2 complain one bit.
3 RYAN CARPENTER: Growing up at points I’d say
4 it had to be different than when I would go to my
5 friend’s house and see their dad running around.
6 He made up for it a lot. He would still go out
7 in front and play basketball with us whenever we
8 wanted to. He made sure he was there to show us
9 he still cared. Nothing is going to be different.
10 He’s going to try his best.
11 GARY CARPENTER: I truly do believe that I was
12 put on this earth to deal with multiple sclerosis
13 and because I know I can deal with it and maybe I
14 was given the strength from above to deal with it,
15 I know I was definitely, but I can help a lot
16 of people. That’s what I do a lot is talking
17 to people who are newly diagnosed who went
18 through or are going through what I went through
19 so I’m the breath of fresh air to say how do we
20 deal with this. It is not life ending, and
21 that’s the key. That is key.
22 DANIELLE CARPENTER: My dad, we still
23 actually call him a man on a mission so I think
~-~ 24 if anything has kind of pushed him a little
25 harder to work towards that mission, a little
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r” 1 stronger, have higher goals for himself.
2 PATRICIAN CARPENTER: As a family we all
3 pull together and have been able to overcome
4 all obstacles and adversities that we’ve had to
5 face.
6 My faith has helped me because God has’
7 given me the strength to deal with this, to help
8 my children deal with this and to help Gary
9 deal with this, and I believe by praying and
10 asking God to give me that inner ability and
11 security in knowing that He’s always going to
12 be behind me to help me through.
(
\ 13 GARY CARPENTER: I draw my strength from
14 my family, from my environment, from my people
15 around me in life and from the Lord, those
16 three people. Those three organizations are
17 very fundamental to me that keep my strength
18 going.
19 MS. DROGIN: We are now joined by Gary
20 Carpenter.
21 Gary, thank you so much for being with us.
22 GARY CARPENTER: You are more than welcome.
23 MR. RUSSO: It is great to have you here, Gary.
L/ 24 It was wonderful to see your family on the video
25 clip that we have shown our viewers.
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~~ 1 So I want to take you back 18 years ago, and
2 you’ve got a beautiful family, wife, beautiful
3 home, your career is doing well and then
4 something happens so what was that like for you?
5 Did you understand what was going on right
6 away, or did it take some time for the diagnosis
7 to happen for you and to sink in?
8 GARY CARPENTER: Actually you wouldn’t know
9 at that time because the disease was unknown at
10 that time. Really it took a couple of years
11 before I was able to get the final determination
12 that I do have multiple sclerosis.
/
\ 13 MR. RUSSO: So that had to be helpful to find
14 out, right?
15 GARY CARPENTER: It was very helpful because
16 I had all the research on what this disease was
17 all about and how to deal with it.
18 MR. RUSSO: Great.
19 MS. DROGIN: You had that at the time of
20 your diagnosis.
21 GARY CARPENTER: Right.
22 MS. DROGIN: So you could process it.
23 GARY CARPENTER: Yes.
~-~ 24 MS. DROGIN: At that point you must have
25 needed to make quite a few adjustments, at home, at
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Ir _\ 1 work.
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2 What was that like?
3 GARY CARPENTER: Again the adjustments that
4 needed to be made were not many, were not many.
5 Things that I couldn’t do anymore. I
6 couldn’t run, but I could walk so I was able
7 to walk. I had to kind of like not go up and
8 down stairs because coordination wasn’t as good.
9 I had to do what’s called fatigue control because
10 I found myself getting tired a lot.
11 I had to go through physical therapy which
12 really wasn’t something different for me
(
\ 13 because being an athlete I always did
14 physical therapy.
15 MR. RUSSO: Maybe tell us about you advocacy
16 and your involvement with the National Multiple
17 Sclerosis Society of Long Island Chapter.
18 MS. DROGIN: Newly diagnosed.
19 MR. RUSSO: In particular.
20 GARY CARPENTER: It was quite interesting
21 because when I was diagnosed, the Chairman of
22 the Board of National Multiple Sclerosis
23 Long Island Chapter at the time was a gentleman
L/ 24 by the name of Gene DeMark, who was my boss at
25 Peat Marwick. They said, Gary, I’m going to
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open up to you a wave of information through
a support mechanism called the MS Society. But
he said I have a deal with you. I’m going to help
you, you help me. You become the next Chairman
of the Board.
MR. RUSSO: There’s nothing like hearing it
from someone who knows. You are living with it
and your being able to communicate that is so
helpful to those newly diagnosed individuals.
MS. DROGIN: It gives hope. I mean looking
at you and how functional you As you say your
life has changed but not very much.
GARY CARPENTER: Not much.
MS. DROGIN: That’s a tremendous thing to
hear.
GARY CARPENTER: But I’m also one of the
lucky ones maybe and the fact that when I was
diagnosed, I took right things at that point
in time were very important that I change,
fatigue control, continue with physical therapy
and make sure my mind is as strong as it always is.
MR. RUSSO: For a time you weren’t able to
walk and you made sure that you could walk.
GARY CARPENTER: For two years, Vincent, I
would have problems walking and I worked out in
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a pool with an ankle foot orthotic, and AFO
device, and it got my strength back.
MR. RUSSO: Let me ask you about your faith
because I’m sure that had a major role in your
ability to respond and deal with the diagnosis
and how you are living your life today.
GARY CARPENTER: You know, being a devout
Catholic, having a Catholic family, I reached out
to God, and my family reached out to God on my
behalf and basically, I asked, give me an
opportunity. Give me an opportunity to still take
care of my rather large family, five children and a
wife, and I wanted to be the father to my children.
I wanted to be the husband to my wife and not to
have this disease change that. And not in return,
but I said that I wanted to spend a lot of time
helping other people. And I truly believe, truly
believe, that I got MS and however I got it, I
got it, but the Lord knew that I could help a lot of
other people with everything I’m going through, and
I have been successful in doing that.
MS. DROGIN: You have.
MR. RUSSO: A last question for you which
time goes so quickly. We have so many questions
for you today. A parting message, because I know
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1 you are on a mission, so what message would
2 you like to send to those who have MS or have
3 been newly diagnosed?
4 GARY CARPENTER: You know, when I was
5 Chairman of the Board of the Multiple Sclerosis
6 Long Island Chapter I founded my tag line, so to
7 say, and I lived by that.
8 Multiple sclerosis is not life-threatening.
9 It is life changing and sometimes change is
10 positive.
11 MR. RUSSO: So with your powerful mindset and
12 determination and help from God, I call you
[ ” 13 a poster child. I know you love that, right,
14 poster child.
15 MS. DROGIN: You give people a lot of
16 hope. It’s a very scary thing.
17 GARY CARPENTER: It is.
18 MS. DROGIN: There’s a lot of hope in
19 your message.
20 MR. RUSSO: Thank you so much for being on our
21 show today, Family Comes First.
22 MS. DROGIN: Thank you, Gary. And now we
23 turn to Monsignor McNamara for a spiritual
l __ 24 reflection.
25 MONSIGNOR McNAMARA: Take my yoke upon you
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and learn from me for I am meek and humble of
heart. This invitation of Jesus to look to him
is met fully by the Carpenter family. Gary has
been diagnosed with MS after a period of testing.
He faces a decision. He can be a man in a
wheelchair or a man with his children. He chooses
life and family, but in order to do so, he relies
upon God so does his wife which expresses her faith
forthrightly when she says that God has given her
the strength to deal with this. In effect she
learns from Jesus who is meek and humble of
heart.
The entire family works together and that
is instructive for all of us.
Finally Gary grows to the point where
he believes he has a mission or a purpose from
God to help others who face challenges like
his.
God bless him.
MS. DROGIN: Vincent, there’s so much
planning to consider. How does someone begin
to plan for the future when they are in their
fifties living with the uncertainty of MS?
MR. RUSSO: Well, I think the first step is
that everyone should have a plan and that plan
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I~ 1 ! . should include having a will and more importantly
2 a durable power of attorney, a health care proxy
3 and a living will. Those documents will impact
4 one’s life if decisions have to be made regarding
5 health care and finances so I think that’s the
6 starting point and then thinking about government
7 benefits if long-term care is needed in the future.
8 MS. DROGIN:. What if insurance is not available
9 to cover long-term care? What options are available
10 to them?
11 MR. RUSSO: Sure. Well, first we heard from
12 George about having a financial plan in place.
13 That’s very, very important and the way you
14 invest your assets as you are getting older
15 will be critical to making sure you have assets and
16 income in the future.
17 MS. DROGIN: So someone could lose all their
18 assets if they didn’t plan appropriately.
19 MR. RUSSO: That’s right. And then also
20 government benefits. If the need is more
21 immediate, then Medicaid is a government
22 program that we have to look at trying to
23 access.
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MS. DROGIN: It is one of the hardest things
25 in life to be told that you may not be able to do
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~ 1 the things that you love to do. For me even
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2 thinking about it was terrifying.
3 Knowing that there are solutions to the
4 problems though that you are facing can help you
5 to overcome them.
6 MR. RUSSO: It takes courage to face these
7 challenges and to continue to live your life to
8 the fullest. It’s not easy to adjust to the
9 changes a chronic illness forces you to make,
10 but as Gary Carpenter and his family have shown
11 the right attitude can make all the difference.
12 MS. DROGIN: For a list of resources, please,
(
13 visit vjrussolaw.com, Vincent’s website.
14 Vincent, speaking with Gary and hearing
15 about his life and how he faced this illness
16 has been truly inspiring.
17 MR. RUSSO: Yes, it has.
18 Thanks to all of our viewers for joining
19 us and remember family truly does come first.