The Path to Resilience After a Diagnosis

Transcript

• 00:00Alright. Hi. My name is
• 00:02Joan Monnen, and our team
• 00:03at Yale recently had a
• 00:05chance to talk to Linda
• 00:07about her experience with mixed
• 00:09dementia
• 00:10and interacting
• 00:12with health care professionals.
• 00:14Linda is currently volunteering with
• 00:17the
• 00:17Connecticut chapter of Alzheimer's Association
• 00:21and the LiveWell Institute in
• 00:23Plantsville, Connecticut.
• 00:25And her goal is to
• 00:26share her experiences
• 00:28with the community
• 00:30and health care professionals
• 00:32to improve the lives of
• 00:33people living with dementia,
• 00:35their loved ones, and their
• 00:37caregivers.
• 00:38And last time we spoke
• 00:40with Linda, she shared her
• 00:42experience
• 00:42being diagnosed with dementia,
• 00:45which was a negative experience.
• 00:47Importantly, she gave us some
• 00:49advice about how health care
• 00:51professionals could do better.
• 00:53We wanted to invite Linda
• 00:54back because we realized the
• 00:56importance of not only understanding
• 00:59the challenges
• 01:00that people living with dementia,
• 01:02their loved ones, and their
• 01:04caregivers are facing,
• 01:05but we also need to
• 01:07better understand
• 01:08the paths that lead to
• 01:10resilience
• 01:11after diagnosis.
• 01:13It's great to have you
• 01:15back, Linda.
• 01:17Thank you. Nice to see
• 01:18you again.
• 01:19Yeah.
• 01:20So I am gonna start
• 01:22by asking you some questions
• 01:24again.
• 01:25So the first one is
• 01:27after you received your diagnosis,
• 01:30can you share how you
• 01:31got to a place
• 01:32where you're living well with
• 01:34dementia?
• 01:37Sure, I can.
• 01:40It's not just one thing
• 01:41in particular.
• 01:43It it includes,
• 01:45for me, and I think
• 01:46it would for others,
• 01:48several different components.
• 01:51So,
• 01:53I might have said last
• 01:54time that after I received
• 01:56my diagnosis,
• 01:58not going in as a,
• 02:01with a brain that focuses
• 02:04and processes
• 02:05properly,
• 02:06I really left in a
• 02:08stupor
• 02:09not knowing what to do.
• 02:11And when I came out,
• 02:14you know, there came a
• 02:15point when I realized that
• 02:18instead of being so negative
• 02:20about
• 02:21what would happen at some
• 02:22point out in the future,
• 02:24that I had to learn
• 02:26how to focus on pushing
• 02:28the negative thoughts out
• 02:30and
• 02:31living my life as well
• 02:33as possible
• 02:34for as long as I
• 02:35can.
• 02:37So, as I said, that
• 02:38involved several different things. And
• 02:41this is a no special
• 02:42order of importance as I'm
• 02:44giving them to you.
• 02:47The first thing was,
• 02:50which was very
• 02:52challenging for me, was to
• 02:53explain
• 02:55to everybody
• 02:56in my
• 02:58closest
• 02:59circle,
• 03:01what my diagnosis
• 03:02was.
• 03:03And,
• 03:06needless to say, because of
• 03:08my,
• 03:09age and what I had
• 03:10been doing in my life
• 03:13previously,
• 03:17everybody that really cared about
• 03:19me was sort of shaking
• 03:20their heads saying, you know,
• 03:22How could this be? How
• 03:23could this be?
• 03:27And,
• 03:28you know, it took, it
• 03:29took quite a bit of
• 03:30time to process because
• 03:35their unyielding
• 03:36support
• 03:37has, has been part of
• 03:39what gives me
• 03:41the
• 03:43inner strength to move
• 03:45forward in a positive direction.
• 03:48And it includes,
• 03:50you know, many different people
• 03:53from
• 03:54family
• 03:55whom I could not do
• 03:56this without,
• 03:58to friends,
• 04:00to,
• 04:02caretakers,
• 04:03all performing different roles, but
• 04:06each role being invaluable.
• 04:09So that's sort of my
• 04:11they're my
• 04:12they're my cheerleaders.
• 04:14And,
• 04:16what that did
• 04:17was
• 04:18at least give me the
• 04:20strength to think I don't
• 04:22need to be thinking about
• 04:24impending doom,
• 04:26but let me learn the
• 04:28process of how
• 04:30to think positive thoughts
• 04:32with such a negative diagnosis.
• 04:35So,
• 04:37what I did was I,
• 04:42I I might have mentioned
• 04:43that I I've been seeing
• 04:45a psychiatrist.
• 04:48I don't know that that
• 04:48was right away from the
• 04:50beginning because
• 04:51that was not I was
• 04:52not given that advice
• 04:55by anybody.
• 04:56But at some point,
• 04:58I I knew I needed
• 04:59to speak to somebody who
• 05:01understood
• 05:02what I was going through
• 05:03and helped me
• 05:04with
• 05:05what's part of my mission
• 05:08personally
• 05:09to,
• 05:10to live
• 05:11as well a quality of
• 05:12life as possible
• 05:14and how to not let
• 05:15the downers
• 05:16drag me down.
• 05:18And
• 05:19so,
• 05:21I
• 05:22see a psychiatrist
• 05:25who
• 05:26doesn't just prescribe medication, but
• 05:28also does therapy,
• 05:30which is unusual
• 05:32in today's world.
• 05:34But the added bonus to
• 05:35that is that as a
• 05:37psychiatrist,
• 05:38he's a doctor who has
• 05:40studied the brain.
• 05:42So he he's very well
• 05:43aware of,
• 05:46what's going on with my
• 05:47brain.
• 05:48And so in speaking to
• 05:50me, he includes that
• 05:52element.
• 05:54And it's just been
• 05:57actually, it's been wonderful.
• 05:59It's like a blessing that
• 06:00I've been able
• 06:02to,
• 06:04to gather support from
• 06:08him and everybody else. But
• 06:10in particular with the therapy,
• 06:12it's like a learned strategy.
• 06:16So,
• 06:19you get some bad news.
• 06:22And
• 06:23that's what we tend to
• 06:24think about, the bad news.
• 06:27And it's a conscious
• 06:29effort.
• 06:30So whenever,
• 06:31and it happens,
• 06:33if not daily, close to
• 06:34daily,
• 06:35you know, something happens. It
• 06:38could be an inner thought.
• 06:39It could be
• 06:40something on TV. It could
• 06:42be something somebody says
• 06:44that sets me off on
• 06:46the negative thought process.
• 06:49And at this point, my
• 06:50mind is trained.
• 06:51So it's trained to think
• 06:53something like negative thought,
• 06:56you know, get rid of
• 06:57it. So what works for
• 06:59me in that,
• 07:00and I don't mean to
• 07:02make this sound trite or
• 07:03easy. It took a period
• 07:05of time for me to
• 07:06get here.
• 07:07Is that
• 07:09I need to not think
• 07:11about the negative
• 07:12and focus on one thing
• 07:15that is
• 07:17sort of a neutral.
• 07:18Because at that point,
• 07:21just being emotional
• 07:23is
• 07:25bothersome and confusing to my
• 07:27brain. So whether it's
• 07:29like elation
• 07:30or the low lows,
• 07:32it doesn't help my brain
• 07:34with the functioning. So I
• 07:35need to find something sort
• 07:36of neutral,
• 07:39and light
• 07:40to distract me from negative
• 07:42thoughts. And in order for
• 07:43me to focus strongly on
• 07:45something,
• 07:46it has to be something
• 07:48rather light anyway.
• 07:49Otherwise,
• 07:50I'll lose my focus.
• 07:53So I found the things
• 07:54for me that have helped.
• 07:58It can be,
• 08:01it can be something simple
• 08:02on TV,
• 08:04not the news,
• 08:06not gory movies,
• 08:08not
• 08:09hysterical
• 08:10comedies,
• 08:11but just something enough
• 08:14for me to be able
• 08:15to focus on and think
• 08:16about.
• 08:17And it will block out
• 08:20the original negative thought.
• 08:23And, it really works. And,
• 08:25I think I also changed
• 08:27my breathing
• 08:28during that time from,
• 08:31I don't I don't know
• 08:33how quick I was breathing
• 08:35or short I was breathing
• 08:36before,
• 08:37but very conscious of taking,
• 08:41long, slow, deep breaths.
• 08:44And it's best for me
• 08:45if I have no disturbances.
• 08:48Like, if I can just
• 08:49focus on this one thing
• 08:51and not get a telephone
• 08:53call, not get into a
• 08:54conversation,
• 08:56not anything.
• 08:57Just focus on one
• 09:00simple thing that is enough
• 09:02to keep my focus, but
• 09:03not too much to overwhelm
• 09:05me. And,
• 09:09I, I don't know how
• 09:10many times I tried that
• 09:11before it worked, but it
• 09:12really started to work. And
• 09:14so now I am programmed
• 09:17to recognize
• 09:19that negative
• 09:20thought process as soon as
• 09:22it starts.
• 09:24And depending on where I
• 09:26am, sometimes that may happen
• 09:28where I'm in public
• 09:30and not alone.
• 09:32And so
• 09:34that's tougher because
• 09:37that silent space is not
• 09:40readily available.
• 09:41But I have,
• 09:44I've, I've gone to the
• 09:45extent of, like, excusing myself
• 09:47from, let's say, lunch table
• 09:49and going to the ladies'
• 09:51room and just trying in
• 09:53there. But I have to
• 09:54make up my own
• 09:56neutral thoughts. So
• 09:58sometimes it works and sometimes
• 10:00it doesn't. It's much easy.
• 10:02It works
• 10:03when I'm in my own
• 10:04private surroundings.
• 10:08So
• 10:10I will
• 10:11say, in addition to that,
• 10:13that there are other things
• 10:14that are generally uplifting
• 10:17to me,
• 10:18and,
• 10:19I'm sure to do those.
• 10:22And it takes it- It
• 10:23takes time to realize what
• 10:25really uplifts you
• 10:27and the things that make
• 10:28you upset,
• 10:29because I think your state
• 10:31of mind
• 10:32is real important when those
• 10:33negative moments come to surface.
• 10:37So
• 10:38not only do I try
• 10:39in the moment
• 10:41to change my thought pattern,
• 10:43but generally,
• 10:45if I'm in a more
• 10:47stable
• 10:48mood or a more happy
• 10:50mood, that's gonna help me
• 10:53if
• 10:55when negative thoughts come in.
• 10:56And I don't they could
• 10:57come in from a lot
• 10:58of different ways, but I
• 10:59feel a little bit more
• 11:00prepared
• 11:02to deal with them
• 11:05overall
• 11:06because of what my psychiatrist
• 11:08has been able to explain
• 11:10to me
• 11:11about what's going on in
• 11:13my brain and explain
• 11:15how to implement
• 11:17these techniques.
• 11:19Yeah. It sounds like you
• 11:20have some kind of self
• 11:22efficacy
• 11:23of what to do when
• 11:25faced with the negative emotions
• 11:28that probably
• 11:29also helps, you know, so
• 11:31you don't feel
• 11:32lost or out of control,
• 11:34you know, when that happens.
• 11:36Exactly. So
• 11:38I never was a thumb
• 11:39sucker as a baby, but
• 11:41I would imagine,
• 11:43you know, that's self soothing
• 11:45and
• 11:47that probably doesn't feel all
• 11:49that dissimilar
• 11:50to how I self soothe
• 11:52myself. No thumbs included.
• 11:55Well, I was a thumb
• 11:57sucker, but
• 11:58I didn't last that long.
• 12:01Oh, come on, you can
• 12:02tell us the truth.
• 12:04I also had a blankie
• 12:05too. So the blankie lasted
• 12:07a while.
• 12:09But I guess have you
• 12:11also thought about what living
• 12:13well
• 12:15might look like for you
• 12:16in the future?
• 12:21Yes.
• 12:22And right now, I have
• 12:23to say,
• 12:24remind me of that question
• 12:26if I need if you
• 12:27need I need it. But,
• 12:30part of the challenge now
• 12:33is to me a blessing,
• 12:34but
• 12:35it's very difficult
• 12:37for people to understand
• 12:39that when you look well
• 12:40on the inside,
• 12:41it has nothing to do
• 12:43on the outside rather.
• 12:45It has nothing to do
• 12:46with what's going on on
• 12:48the inside.
• 12:49And,
• 12:51that's,
• 12:52you know, I understand that,
• 12:56but it's not, it's just
• 12:58not the case. So for
• 12:59example, if somebody had
• 13:02cancer
• 13:04and they didn't look sick
• 13:06at that time,
• 13:08I don't think many people
• 13:09would question them.
• 13:11I mean, I think most
• 13:12people would think,
• 13:14Wow,
• 13:15this person looks good, but
• 13:18they're not thinking, Oh, they
• 13:19don't have cancer. And, in
• 13:21fact, if they're gonna if
• 13:22they're
• 13:23decent
• 13:24in any way at all,
• 13:26they're gonna show some level
• 13:28of,
• 13:30compassion.
• 13:32And,
• 13:33for some reason, when it's
• 13:35issues dealing with the brain,
• 13:38I think people confuse
• 13:40brain disease with psychological,
• 13:45psychological
• 13:47problems.
• 13:49And both are, both are
• 13:50valid
• 13:51illnesses.
• 13:52I know that,
• 13:53But I think that often
• 13:55people
• 13:58get the impression that there
• 14:00must be
• 14:01not a disease of the
• 14:03brain,
• 14:04but like, you know, whether
• 14:05it be a disorder,
• 14:07an emotional disorder.
• 14:09So,
• 14:10you know, I have that
• 14:12was upsetting to me, not
• 14:14because
• 14:15I wanted to look awful,
• 14:16but I I do I
• 14:18do wish that people could
• 14:19more readily understand, which is
• 14:21why,
• 14:22large part of why I
• 14:24I do these talks
• 14:26so that,
• 14:29the stigma is perhaps reduced.
• 14:32And for people to understand
• 14:34when they look at me,
• 14:37they get a different picture,
• 14:39as do I.
• 14:41When I first heard it,
• 14:42my image of what I
• 14:44was gonna look like, and
• 14:45for some day I thought
• 14:46of for some reason I
• 14:47thought it would be like
• 14:48within a week, like immediately,
• 14:50I would start looking very
• 14:51differently.
• 14:52Mhmm. But clearly that's not
• 14:54the case.
• 14:55And so
• 14:57people need to understand
• 15:00that when
• 15:02they are looking at somebody
• 15:04diagnosed with dementia,
• 15:06that
• 15:08that it's a case by
• 15:09case basis in terms of
• 15:10the process,
• 15:12and somebody can look like
• 15:13me, or somebody
• 15:15else can look very differently,
• 15:18but it's still the same
• 15:20diagnosis.
• 15:21And your question was?
• 15:25You know, have you thought
• 15:26about what it might look
• 15:28like to live well
• 15:30in the future?
• 15:32Well, right now,
• 15:35apparently, I have the wherewithal
• 15:38to
• 15:39kick into the process I
• 15:40was taught,
• 15:42and I know I won't
• 15:43always have that.
• 15:46So,
• 15:47in the future,
• 15:49if I could map out
• 15:51what it would be like
• 15:52for me,
• 15:53I just want to know
• 15:55that I'm
• 15:56surrounded
• 15:57by people that,
• 15:59care about me
• 16:01and give me a sense
• 16:02of comfort
• 16:04and safety
• 16:06and
• 16:07happiness.
• 16:08Because sometimes even now,
• 16:11if some Let's say
• 16:13I watch something on TV
• 16:15and, you know, there's a
• 16:17plot
• 16:18and I enjoyed it.
• 16:20The next day,
• 16:22I most likely may not
• 16:23remember the plot, but I
• 16:24have the feeling,
• 16:26the feeling of enjoyment stays
• 16:28with me. So I think
• 16:30that,
• 16:31you know, that will be
• 16:33most everything
• 16:35later on where
• 16:37I may not remember the
• 16:38words.
• 16:39I may not remember
• 16:41who's who, but the emotional
• 16:43feelings
• 16:45will stay with me. So
• 16:47I wouldn't want people to
• 16:49stop speaking to me if
• 16:51I don't respond.
• 16:55I wouldn't want
• 16:56anybody to engage with me
• 16:59differently
• 17:01because the feeling and from
• 17:03what I understand, the emotions
• 17:05stay intact.
• 17:06The feelings will be there,
• 17:08and at least
• 17:09I can be as happy
• 17:11as possible.
• 17:14So that's one part of
• 17:15it.
• 17:16The other part of it
• 17:17is if there's something wrong
• 17:19going wrong where right now
• 17:21I could say to somebody,
• 17:24oh, I need I need
• 17:26help with this, or this
• 17:27hurts, or I need I
• 17:29need you to help me
• 17:30this way. I'm not going
• 17:32to always be able to
• 17:33do that.
• 17:34So my vision is
• 17:37that,
• 17:38everybody involved
• 17:40as my support team
• 17:44gets to learn now
• 17:46the things
• 17:48that are most comforting for
• 17:50me and what makes me
• 17:51feel
• 17:53most secure so that
• 17:56when I can't
• 17:57express it, they'll know.
• 18:01And I hope to
• 18:05as long as possible or
• 18:07forever,
• 18:08my personal choice would be
• 18:10to live
• 18:14in a private setting.
• 18:17That's just I mean, some
• 18:18people don't like that. I
• 18:20I have I have a
• 18:21social life.
• 18:23If that changes drastically
• 18:25down the road,
• 18:27maybe I would feel differently.
• 18:28Because
• 18:30I think socializing
• 18:31is
• 18:32one of the core,
• 18:36behaviors in my lifestyle
• 18:38that keeps me upbeat.
• 18:41So,
• 18:42right now, it's okay.
• 18:44And,
• 18:45if that altered drastically,
• 18:48maybe I would consider another
• 18:50lifestyle choice. I don't know.
• 18:52But, most important to me
• 18:54is to be surrounded by
• 18:55people
• 18:56that are not necessarily acquaintances,
• 18:59but that I know
• 19:00and trust that I'm in
• 19:02really good hands, that I'm
• 19:04understood,
• 19:06and that I am
• 19:08protected.
• 19:10Yeah. This really speaks to
• 19:12the continuity of, like,
• 19:15having people around you
• 19:17that you can talk to
• 19:19throughout
• 19:20the progression
• 19:22of dementia so that one
• 19:24day
• 19:25they'll be able to know
• 19:26what makes you feel comfortable
• 19:28and
• 19:29what your priorities
• 19:30are.
• 19:32I imagine it could be
• 19:33difficult if someone,
• 19:34you know, all of a
• 19:36sudden gets put somewhere,
• 19:38you know, where no one
• 19:39knows
• 19:40anything about them and how
• 19:41that could be harder. So
• 19:43it seems smart to
• 19:45try to keep people
• 19:47in your life
• 19:49who could
• 19:50know about you and the
• 19:52care that you want.
• 19:55So from what, yeah, from
• 19:56what I've learned,
• 19:58about eighty percent of people
• 20:00diagnosed with dementia remain at
• 20:02home
• 20:03for their lives,
• 20:05but,
• 20:06of course,
• 20:07there's another twenty percent.
• 20:10And I do hope that
• 20:11if the situation changes for
• 20:13me where it really, for
• 20:14whatever reason,
• 20:15doesn't make logical sense at
• 20:17all,
• 20:18that I'm aware enough
• 20:21to maybe
• 20:22participate in the choice.
• 20:25You know, so
• 20:28hopefully not, but we'll see
• 20:29how that goes. That's not
• 20:31really part of what I
• 20:32wish for in the future,
• 20:33but who knows what will
• 20:34happen.
• 20:35Yeah.
• 20:36So what, types of supports
• 20:39from your environment
• 20:40have been
• 20:41especially helpful to you?
• 20:44Talking talking to the people
• 20:46that I'm closest with. It
• 20:48could be on the phone.
• 20:49It doesn't always have to
• 20:50be,
• 20:52seeing them, but staying connected
• 20:55with the people closest to
• 20:57me. And, when I practiced
• 20:59law,
• 21:01I was
• 21:02extremely
• 21:03social, and sometimes
• 21:05that could have been contact
• 21:06with clients who may not
• 21:08have been necessarily
• 21:10always personal friends.
• 21:12But I was
• 21:13I was connected with other
• 21:15people
• 21:16from the time I opened
• 21:18my eyes, basically,
• 21:19until the time I went
• 21:20to sleep. And it would
• 21:21go from
• 21:22personal
• 21:23relationships
• 21:24to business relationships
• 21:26back to personal relationships. But
• 21:28in terms of connection,
• 21:30I was covered a hundred
• 21:31percent of the time.
• 21:33Now,
• 21:34that's that would be overwhelming
• 21:35for me, a hundred percent
• 21:37of the time.
• 21:38But just to know that
• 21:40I'm speaking to people
• 21:42and also
• 21:44socializing
• 21:44with them face to face,
• 21:48is just
• 21:49a
• 21:50tremendous help
• 21:52to keeping
• 21:53my lifestyle
• 21:55as happy and healthy as
• 21:57possible.
• 21:59I was a very social
• 22:00person
• 22:01beforehand.
• 22:03And even for the years
• 22:05that I had this, that
• 22:06I wasn't diagnosed,
• 22:08it was I remained that
• 22:10way. That's my nature.
• 22:12And I know that's not
• 22:13everybody's
• 22:14nature,
• 22:15but I do believe
• 22:17that once something like this
• 22:18happens to you,
• 22:20that,
• 22:21hopefully,
• 22:22if it's not somebody's
• 22:24nature,
• 22:25that there will be somebody
• 22:26that can guide them in
• 22:27a direction. And maybe they
• 22:29don't need as much social
• 22:30contact as I
• 22:32do,
• 22:33but
• 22:34I don't think there's a
• 22:35case where social contact does
• 22:36not help.
• 22:38And I I mean,
• 22:40I know a lot of
• 22:40different people with the diagnosis,
• 22:42and one pops into my
• 22:44mind. And
• 22:45this is a patient,
• 22:48who
• 22:50is
• 22:51feels embarrassed
• 22:53and judges themselves very harshly
• 22:57by comparing what they used
• 22:58to do to what they
• 22:59do now,
• 23:01and
• 23:02finds it hard
• 23:05to be in front of
• 23:06other people
• 23:07out of because of embarrassment
• 23:09and frustration.
• 23:12And there's help for that.
• 23:14There's help to learn how
• 23:15not to feel embarrassed and
• 23:17frustrated.
• 23:19And, I mean, I felt
• 23:21that way initially,
• 23:22but
• 23:23I came to understand what
• 23:25kind of a life is
• 23:25that. There's a better alternative,
• 23:28and
• 23:30that's the way I'm living
• 23:31now. I think a much
• 23:32better alternative. I'm not,
• 23:34I'm not unhappy
• 23:36with my diagnosis.
• 23:38I mean, of course nobody
• 23:39wants it,
• 23:41but I don't dwell on
• 23:43how serious and
• 23:45unhappy a thing it is.
• 23:47Not at all. I'm accepting,
• 23:50and
• 23:51I can I'm comfortable with
• 23:53speaking openly
• 23:55in an effort
• 23:56to help others and also
• 23:58to help myself.
• 24:01So this maybe is related
• 24:03to my next question,
• 24:05which is,
• 24:06what gives you meaning and
• 24:08purpose
• 24:09these days?
• 24:11Well, it's changed
• 24:13tremendously.
• 24:15And I had just mentioned
• 24:17to you a patient that
• 24:18I know who is embarrassed
• 24:20and frustrated,
• 24:23was a professional before the
• 24:25diagnosis,
• 24:27as was I. And in
• 24:28practicing law, certain behaviors were
• 24:31assumed.
• 24:33Certain competency
• 24:34levels were assumed.
• 24:37So
• 24:40I didn't know. I I
• 24:41all I did know for
• 24:43years, I felt that something
• 24:44was wrong with me,
• 24:46but I never even considered
• 24:49this. Nobody ever brought it
• 24:51up. And,
• 24:52I was so young.
• 24:54I just never considered this.
• 24:56I just knew it was
• 24:57something.
• 24:58And,
• 25:02what what was the initial
• 25:03question?
• 25:04What gives you meaning and
• 25:06purpose
• 25:07these days?
• 25:08So the ability
• 25:11to let go of
• 25:13what my days used to
• 25:15be like
• 25:16and
• 25:18dismiss what I cannot do
• 25:21and concentrate on what I
• 25:22can do. So my day
• 25:24to day life is drastically
• 25:26different
• 25:28from what it was,
• 25:30not just beforehand,
• 25:32but
• 25:33because I I was explaining
• 25:35beforehand that things were off.
• 25:37And
• 25:38once I was diagnosed,
• 25:41you know, it came it
• 25:42came to light just how
• 25:44bad off I was,
• 25:46and the different types of
• 25:47mistakes
• 25:48that I made were
• 25:50tremendous
• 25:51mistakes, but I didn't know
• 25:54at the time
• 25:55that I was making tremendous
• 25:57mistakes in my life.
• 25:59But, so, the ability to
• 26:01dismiss all of that
• 26:04and look forward and find
• 26:06those things. Like, my life
• 26:08is much simpler now,
• 26:10but not in a negative
• 26:11way.
• 26:13So I have time
• 26:14to do
• 26:16little what I call little
• 26:17things.
• 26:18You know, I'm not writing
• 26:20briefs anymore. I'm not arguing
• 26:22in court anymore. So what
• 26:23I guess I mean by
• 26:24little is not insignificant,
• 26:26but things that take up
• 26:27less time
• 26:29and don't use that much
• 26:30brain energy,
• 26:31maybe more repetitive
• 26:33things, like, I love to
• 26:35take pictures.
• 26:38I love gardening.
• 26:39I never did any gardening
• 26:41at all
• 26:42up until
• 26:44after my diagnosis.
• 26:48So I can enjoy
• 26:51I can enjoy,
• 26:52you know, the just
• 26:55looking at sa outside and
• 26:56seeing the leaves change or
• 26:58taking you know, being outdoors
• 27:00and just appreciating
• 27:02that.
• 27:03Whereas I always thought it
• 27:04was beautiful before, but I
• 27:05didn't spend so much time
• 27:07thinking about it.
• 27:08And that produces just happy
• 27:10feelings for me. And that's
• 27:12my goal
• 27:13to be as happy as
• 27:15possible. And there are many
• 27:16ways to fill my awake
• 27:18hours
• 27:19with happy thoughts.
• 27:23So is there anything else
• 27:25you
• 27:26would have liked to have
• 27:27shared that you didn't get
• 27:28a chance to say?
• 27:30Once a diagnosis
• 27:32is received,
• 27:33how
• 27:38how that,
• 27:39whether it's, whether it's the
• 27:41patient
• 27:42or
• 27:44somebody that
• 27:46they've immediately
• 27:47identified
• 27:48as a primary caretaker,
• 27:50if somebody has a primary
• 27:52caretaker.
• 27:53It's real important
• 27:55to get the proper message,
• 27:59to
• 28:00people that they're gonna be
• 28:01telling about it immediately.
• 28:04And
• 28:05I can tell you,
• 28:07I did part of that
• 28:08personally.
• 28:10And in retrospect,
• 28:11I did not do it
• 28:12well.
• 28:13I had
• 28:15because I presented
• 28:16as
• 28:17I was still in my
• 28:18hysterical stage,
• 28:21and I don't know how
• 28:23factual
• 28:24I was. I think I
• 28:26was The overriding emotion was,
• 28:29I was hysterical.
• 28:31I was scared,
• 28:33and
• 28:34I didn't explain it very
• 28:35well. So,
• 28:36I think that from the
• 28:38beginning,
• 28:39whether you go to a
• 28:40doctor alone or with somebody
• 28:43else,
• 28:44that it's critical
• 28:45to have
• 28:47somebody else or more than
• 28:48one.
• 28:49Clearly understand
• 28:51from the doctor
• 28:53who
• 28:54is of much, hopefully, of
• 28:56much sounder mind,
• 28:59to explain
• 29:01what's going on and what
• 29:03to anticipate
• 29:05to those in your life
• 29:06who really need,
• 29:10an explanation
• 29:11to help
• 29:12somebody like me
• 29:14and to understand
• 29:16what's going on.
• 29:19And I think that gets
• 29:20you off to
• 29:23a much better, you know,
• 29:24a good solid start,
• 29:27and that
• 29:29you you have to learn
• 29:30ways
• 29:32to let go of
• 29:35all the different
• 29:36skill sets you were
• 29:39practicing
• 29:41beforehand
• 29:42that just don't work anymore
• 29:45and realize that you're not,
• 29:47you're the same person.
• 29:49I'm the same person.
• 29:51I, I have not lost
• 29:53who I am.
• 29:54I have not lost,
• 29:58what makes me tick.
• 30:01I have not lost like,
• 30:03I was talking about socializing.
• 30:06I have not lost
• 30:08my desire to do the
• 30:09things
• 30:10I've always enjoyed doing.
• 30:12It's,
• 30:13the list is tapered,
• 30:16but I've accepted that. And
• 30:18so not getting upset at
• 30:20each thing that goes awry,
• 30:23I avoid those things
• 30:26as much as possible. You
• 30:27know, we don't nobody has
• 30:28complete control over their lives.
• 30:31So, when possible,
• 30:32I try to avoid those
• 30:33things. And if not possible,
• 30:36I learn how to quickly
• 30:38divert.
• 30:40And, at this point, I
• 30:42would say that
• 30:45and, for example, speaking about
• 30:47this is really important to
• 30:49me also.
• 30:51And
• 30:52I was, I was a
• 30:54type of public speaker beforehand,
• 30:56so that's another innate
• 30:59part of me, and the
• 31:00desire to do that hasn't
• 31:01changed. And
• 31:03I couldn't do what I
• 31:05did before,
• 31:06but this goes
• 31:08to, like, I I was
• 31:09explaining how my emotions,
• 31:11I think, are
• 31:14in you know, are are
• 31:17basically
• 31:18similar.
• 31:20The feelings I get, you
• 31:21know, are similar.
• 31:23But,
• 31:24so
• 31:25a good example from before
• 31:27to after is that the
• 31:29basic idea of speaking,
• 31:33I mean, I've been doing
• 31:34that since I'm a child
• 31:37and then
• 31:38as a career,
• 31:41and now I do it
• 31:42in a different forum.
• 31:45And
• 31:46other than
• 31:48raising my daughter, like, in
• 31:50terms of communication,
• 31:52this communication
• 31:54right now about what I'm
• 31:55going through
• 31:57and what may help other
• 31:58people
• 31:59and what may help,
• 32:01you know, family
• 32:04and or
• 32:05caretakers
• 32:06that are may not be
• 32:07family,
• 32:09to understand.
• 32:10This is my, I'd say,
• 32:12second most important
• 32:15communicating that I've done in
• 32:17my life, because I don't
• 32:19think that people would ever
• 32:21understand. I haven't explained everything
• 32:23obviously, but I don't think
• 32:24that they would ever understand
• 32:27what was going on
• 32:30in my life without me
• 32:31talking about it a little.
• 32:34Yeah. Yeah. Thank you so
• 32:36much, Linda. It's truly a
• 32:38gift to be able to
• 32:39hear you talk about
• 32:41your experience. And I think
• 32:43it's so important for changing
• 32:45people's
• 32:46ideas of of what it
• 32:48looks like,
• 32:49to have dementia
• 32:51and
• 32:52what it could be like,
• 32:54you know, if we didn't
• 32:55keep on thinking those
• 32:57stereotypes we've had for a
• 32:59long time. And so we're
• 33:01truly
• 33:02honored
• 33:03to have you talk to
• 33:04us about this. And,
• 33:07I know I'll be seeing
• 33:08you again in some of
• 33:09our work that we'll be
• 33:11doing together,
• 33:13to
• 33:14further improve, you know, the
• 33:15lives of of everybody.
• 33:18If I may Yeah.
• 33:20I I don't feel morbid.
• 33:22I don't feel it's morbid
• 33:23for me to discuss, like,
• 33:25the future at all.
• 33:27And so And, I don't
• 33:28want anybody to feel like,
• 33:31how could she be talking
• 33:32about this when I say
• 33:33the following.
• 33:34There's an end
• 33:38to this progressive
• 33:39disease,
• 33:41and there's no nothing
• 33:43there's no way to cure
• 33:45it at this point.
• 33:47So,
• 33:48someday, this this video,
• 33:51for example, will always be
• 33:52there in days way up
• 33:54when I may not be
• 33:56there.
• 33:57So, I just want to
• 33:59be sure to shout out
• 34:00to all of the people,
• 34:04who I love and who
• 34:06love me
• 34:07and who are part of
• 34:08this journey with me to
• 34:10remember
• 34:11I couldn't do it without
• 34:12them. I love my family.
• 34:14I love my friends.
• 34:16I love,
• 34:17I love people that are
• 34:19pitching in to help make
• 34:21this
• 34:22as positive a journey as
• 34:24possible,
• 34:25and it can be positive,
• 34:26believe it or not.
• 34:29Thank you so much, Linda.
• 34:32This was so nice to
• 34:34talk with you,
• 34:35again.
• 34:37And so
• 34:38have a great day, and
• 34:39I'll see you again soon.
• 34:42Thanks so much, Joan. Take
• 34:43care. Bye bye. Talk to
• 34:45you soon. Bye bye.