December 9, 2024 • 35 mins
Ever wondered about the connection between sleep disorders and neurodegenerative diseases? Roe shares her experience with obstructive sleep apnea and REM Sleep Behavior Disorder, discovered during an overnight sleep study at the University of Cincinnati. Despite initial reluctance to use a CPAP machine, she faced the alarming reality that a significant percentage of RBD patients may develop neurodegenerative diseases within a decade. Through personal anecdotes and extensive testing, Roe's journey to a Lewy Body Dementia diagnosis unfolds, emphasizing the critical nature of early diagnosis and treatment.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:12):
Welcome back podcast family.
Speaker 2 (00:14):
Yes, welcome back all y'all.
Speaker 1 (00:16):
I want to thank yous.
I had y'all on there, curry, Ihad y'all, but my brother
reminded me I'm back inPhiladelphia and we say yous, so
I guess we'll let you get awaywith it.
I just want'all, but my brotherreminded me I'm back in
Philadelphia and we say yous, Iguess we'll let you get away
with it.
I just want to thank yous as ateacher, that drives me crazy
too.
Why are you a USC?
But anyway for being so patientand supportive.
Before we introduce today'sguest, we want to remind all of
(00:39):
our listeners that we are notgiving medical advice.
We are just sharing our openand honest feelings and thoughts
as we live with Lewy bodydementia.
Speaker 2 (00:49):
Yeah Now, folks, I want to give a big thanks to
each and every one of oursupporters out there.
Y'all have just been great withus this whole time.
We've gone through a periodhere where we didn't do some
podcast because life happened,but we're getting back into it
now.
We're starting off good today,so we just want to thank you all
(01:10):
for still supporting us.
Speaker 1 (01:12):
Yeah, yeah, it's really been humbling to us
because we stress out when we'renot able to get an episode off
for sometimes a couple weeks ormore.
But you know life, you alllistening know the Louis life,
so that's what everybodyunderstands.
(01:33):
Another quick reminder aboutthe Zoom support meetings.
All the links are the same linkand all the information is
above the announcements.
I think it's called events nowon both of our Facebook pages
(01:55):
and someone always posts the dayof the meeting what meeting it
is.
So please feel free to join us.
And I want to do a shout out toJulie, who posts those
inspirational, positive postsevery single day.
And if you all could send herhugs and love and prayers and
strength, because Ron's notdoing her husband Ron, who has
(02:19):
Lewy bodies and doing so well,but still, on the face of all
that, she's still posting thosepositive messages every day.
So thank you, judy, from me andeverybody in the groups exactly
well, folks.
Speaker 2 (02:33):
Uh, I'd like to give another reminder that we're not
giving out medical advice.
We're only sharing ourexperiences.
We're only sharing ourexperiences and personal
journeys as we travel throughthis thing called Lewy Body
Dementia.
So let's get this thing startedthis week.
Please welcome our friend Ro.
Her name is Rose, but she goesby Ro, so if you catch me, I may
(02:56):
call her Ro or I may call herRose.
But Ro, could you introduceyourself and tell us where
you're from and how long ago youwere diagnosed and how old are
you, and then we can ask yousome more questions.
Speaker 3 (03:09):
I'm happy to Thank you, linda, and thank you, curry
, for having me today.
I'm Roe Pagoli.
I go by Roe or Rosie or Rosanna, it doesn't matter, but Roe is
the most comfortable for me.
I'm from Cincinnati, ohio, andI'm 65 years old.
Speaker 1 (03:28):
Say it again, linda, I was going to say or you go by,
hey you, hey you, hey you.
Speaker 3 (03:34):
Yeah, I was diagnosed with Lewy body disease and mild
cognitive impairment in Aprilof this year.
Speaker 2 (03:43):
Wow.
Speaker 1 (03:45):
That's new.
She's a newbie.
Speaker 2 (03:47):
You bet you Can you share with us how it all started
for you.
What were some of the firstsymptoms you had that made you
seek medical attention?
Speaker 3 (04:01):
Yeah, curry, you know I've had symptoms for about
eight or nine years and I firststarted noticing some changes
with my memory and that kind ofcoincided with some changes in
my sleep pattern.
But that's going back to like2016.
I started losing things.
I lost my wedding band set andhe replaced it.
(04:23):
I lost the second set.
I lost credit cards.
You know some serious stuffthere.
But the first time I noticedthere was something going on
with my memory, I had attendedmy niece's graduation at Penn
State and stayed overnight and Igot in the car the next day,
got on the highway and I'mthinking to myself wait, what
(04:45):
was the name of that town?
I stayed in last night and Icould not recall it, and what I
found was the more I tried tothink about the name of the town
, the more anxious I became, andso it never did come back to me
.
A couple weeks after that, Iwas leaving the grocery store
(05:07):
and I come out and I'm in theparking lot and I'm like whoa,
where am I?
And I knew like holy crap, man,something is not right, and it
took me a minute or two toreally get my bearings and
figure out.
Okay, you went grocery shopping,you're going to look for your
car, you're going to drive home,and that's eight years ago.
(05:27):
One of the things that reallygot my attention was I was
engrossed in doing something andthe question popped in my head
like wait, wait a second, wherewere we?
When my husband proposed to meand, honest to God, I knew we
(05:49):
were someplace fun, we were onvacation, but I couldn't think
of the place we were.
For the life of me, that's animportant event in your life,
right.
Speaker 2 (05:59):
Oh yeah.
Speaker 3 (05:59):
So, again, I stressed about it and then I kind of
caved in.
I went over to my husband likethis is going to sound crazy,
but where were we when youproposed to me?
He's like, bro, we were in KeyWest, what do you mean?
I'm like oh yeah, you're right.
Yep, we had a blast.
I turned around and literallyfive minutes later I could not
remember Key West.
(06:21):
That's when I knew like, okay,something is going on here.
Now, when was that?
How long ago?
Was that 2016,?
So about eight years ago, okay.
Speaker 1 (06:35):
Did you go see a doctor then, or you?
Speaker 3 (06:38):
just I went to see my GP, linda, and she immediately
wanted to do a brain CAT scanand run tests.
And, quite frankly, my dad wasa doctor and we grew up like
everything was you know aprescription for this or go get
that test done.
And I've lived my whole lifetrying to not stress over.
(07:02):
You know it's got to be reallyserious, right?
Whole life trying to not stressover.
You know it's got to be reallyserious, right?
So on top of that, I didn'twant to jump into all the
testing and stuff.
Eight years ago I thought, well,it's stress, it's stress.
And at the same time I had hada very traumatic event that took
place in my life and Iattribute it to my son, had
(07:28):
severed the ties with me, himand his girlfriend, and these
symptoms seemed to surface rightaround all this other drama
with my son and I just thought,hey, that's my body reacting,
right.
So I just figured um, let's letit play out, let's see what
happens.
And and that's actually whenthe nightmares started, the
(07:52):
night terrors started rightaround the same time.
Um, I've come to understandthat night terrors and, uh, rem,
sleep disorder, that's like ahallmark of Louie.
Didn't know it back then, butwhen those dreams started, they,
it was one after the other,night after night, and it was
(08:14):
always about someone trying tomurder my son.
Now remember that's happeningin the background, that he's
like never want to see you again, you're not going to see your
grandchildren, and so I justthought, god, it's got to be
related, right.
So so I really took my time.
So I really took my time.
And then I also had an elderlymom that I was trying to care
(08:37):
for, 700 miles away.
I found myself flying back andforth to the East Coast to help
take care of my mom, and so myhealth issues.
Am I not getting a good night'ssleep?
Am I losing things?
It's secondary to everythingelse going on.
Am I the only one that thathappens to?
To that we push it off the backburner.
Speaker 1 (08:59):
I think that's a defense mechanism.
Speaker 2 (09:02):
Yeah.
Speaker 1 (09:02):
Really yeah, because, curry, how long was it before
you really spoke up, like how,like even years?
Speaker 2 (09:21):
years I'd had hallucinations starting about
2007, and I really didn't speakup until about 2010.
And then, when it really gotbad was 2016.
That's when I told her sheneeds to go ahead and let me go
to the doctor, because she hadbeen trying to get me to go and
I just wouldn't go.
Speaker 1 (09:35):
Really, you wouldn't go to the doctor, shocker.
Speaker 2 (09:37):
Well, I thought it was all me driving.
Speaker 1 (09:42):
You know you're a bugger when it comes to going
and getting.
I was just pointing my fingerat him.
Everyone that's listening.
But I totally understand, likeI can only imagine it's a
defense mechanism and just likefor caregivers, it's the defense
(10:02):
mechanism to push it away ordown or pretend like it's not
happened.
I think is how we survivesometimes.
Speaker 3 (10:10):
It's how we get through day to day, right, right
.
Speaker 1 (10:14):
And caring for everybody else in the family,
especially the moms no offense,dads out there and you're taking
care of your mom from far away.
Stress clearly has a lot to dowith it.
That doesn't help either, I cantell you.
I'm not sure how long Jim was.
(10:36):
Things were going wrong untilit was the beginning in, I guess
, the beginning of 2017.
Maybe it was springtime.
And he came home from hismidnight shift 12 at night, six
at night to six in the morning,midnight shift 12 at night, 6 at
(10:57):
night to 6 in the morning andhe said I think I may need to go
to the doctor's because I wassitting at my desk and I
couldn't remember the kids thesecond floor of our house, like
where the kids' rooms were.
And I'm like that's weird and Ialways just brush it off too,
because he worked 12-hour shifts, 6 in the morning till 6 at
night, or 6 hour shifts, six inthe morning till six at night,
or six at night till six in themorning, and they rotate it.
(11:20):
And um which we've been findingmore and more people on the
Facebook pages saying that, likeCarla's husband who was in the
documentary with us, her husbandwas a nurse on swing shift.
So stress?
They told Jim he had stress.
They said you got a lot ofstress and, curry, you've met
Jim.
That man never stressed and hehad the same stressful job in
(11:44):
the control center at theelectric company for 30-some
years.
So they made him take two weeksoff and then the whole testing
happened.
So I'm going to ask her this,since I'm on this Curry, I just
did a segue.
So can you share with us whattests did they do to actually
(12:07):
diagnose you with LBD?
And I don't remember whetheryou said you went to your GP or
neurologist.
Speaker 3 (12:14):
Back then, I went to the GP, but I did not have any
testing done.
Okay, uh, it wasn't until 2020I think it was 2020, because it
was around COVID that I, uh,finally conceded to having the
sleep study done, because, youknow, a a couple of years had
(12:34):
gone by, I was dealing withinsomnia and nightmares and
thrashing, and we had alreadybegun to look at sleeping in
separate rooms, which, by theway, absolutely sucks, but it's
the only way I can survive is tosleep in the spare bedroom.
Yep.
So what was your question?
Speaker 1 (12:56):
linda.
No, it's okay, I just what Ifind when I'm getting ready to
break.
It doesn't always work, ascurry will tell you.
Um, I try to think of somethingtotally different what testing.
I had yeah, I was just sayingbecause when I had it, when I
decided to switch rooms for myown safety, that was probably
one of the hardest things I'veever had to do.
(13:17):
But what tests?
So you went to your GP and then, later on, what tests?
Speaker 3 (13:22):
The sleep study, the overnight sleep study at
University of Cincinnati.
So that was around 2020 and ithad to be 2020 because the
follow-up was through virtual.
He wasn't even seeing patientsin person, right?
So it's during the virtualfollow-up meeting that my sleep
doctor says to me you haveobstructive sleep apnea and you
(13:45):
have something called RBD, whichis a REM sleep disorder, and he
gave me I want you to get aCPAP machine.
And he finished theconversation by saying scared
the hell out of me.
He said 97% of patientsdiagnosed with RBD will go on to
(14:07):
develop a neurodegenerativedisease in 10 to 15 years.
And I was flabbergasted.
I was like what are you sayingto me?
It's sleep.
How does that have to do withmy brain?
So you talk about denial.
I put off using a CPAP machinefor a couple of years.
(14:30):
I truly I thought it's going toconstrict, it's going to I'll
lose weight, I'll do whatever Ican.
Maybe that'll help Nothing.
So when I was finally given thediagnosis of Lewy body, they
said you need to be using a CPAPmachine.
This is definitely, itdefinitely correlates with Lewy
(14:52):
body what you're going throughat night, and I began to
understand the connectionbetween my sleep and this
neurodegenerative disease.
Speaker 1 (15:04):
And I know I asked you this in Zoom the other day
because I've only ever heard REMas R-E-M.
So what does?
Speaker 3 (15:12):
R-B.
Speaker 1 (15:12):
RBD stand for yeah.
Speaker 3 (15:18):
So it's called REM.
Let's see, I wrote it down foryou sleep apnea and REM sleep
behavior disorder.
So think of it this way Linda Rfor REM behavior disorder.
Speaker 1 (15:30):
Does that?
Speaker 3 (15:31):
make sense.
Speaker 1 (15:32):
No, yeah, I just have never heard it.
I don't care.
Have you ever heard it calledRBD?
Speaker 2 (15:37):
Yeah, some people call it RBD Okay.
Speaker 1 (15:39):
I guess I never.
Speaker 2 (15:42):
It depends on what the doctor calls it.
Speaker 3 (15:44):
Yeah, so once I had that follow-up meeting after the
sleep study, immediately mysleep doctor's like I would like
you to go get neuropsychtesting and then we'll run,
we'll see what's going on withyour brain.
And he knew there was somememory issues and again, because
of my focus was on my mom.
(16:06):
I'm like that's 2020.
I'm not doing all that I can't.
There's no, there was nothingleft of me to give.
So my mom died a year ago, lastNovember, and that's when I
really and truly started lookingat.
Okay, I got to deal with this.
Now he wants me to get theneuropsych testing.
(16:26):
I'll go do the testing.
So, to answer your question,they did the hours and hours of
neuropsych testing in February.
The results of those led to abrain MRI.
They ordered the lumbarpuncture where they found the
alpha-synuclein protein in thecerebral spinal fluid.
(16:48):
And then I did end up goingdown to University of Miami and
they did that acinuclein biopsywhich showed that I have that
protein.
Does that help answer thatquestion?
Speaker 1 (17:05):
Linda, no, yeah, yeah , because we always try to ask
each person we have come onwho's been diagnosed.
Just so, the people listening,I think everybody goes through
that four-hour testing.
Corey, you did that right, yeah, yeah, which is to me torture.
I can't imagine doing it assomeone who's being tested for a
(17:30):
potential brain issue.
I guess it's meant to be thatway.
See how you perform after fourhours of Stressful testing.
Yeah, right, stressful testing.
So again, I want to thank youfor coming on because your
(17:52):
diagnosis is new, like you saidin April, even though you've
been having these symptoms.
So you shared that you werehaving the RBD and the memory
issues.
Can you share with us Sorry, Ijust lost my place that you were
on early diagnosis, which isgreat?
(18:14):
That sounds terrible, butthat's great because the average
is what?
18 to 24 months now, I thinkit's up to to get diagnosed.
Speaker 2 (18:26):
And the good part about being early diagnosed is
you're going to start yourtreatment earlier.
They say you're going to have abetter journey than if you were
diagnosed late.
Speaker 1 (18:39):
Yeah, yeah, that's true.
So, from the initial symptomsyou had until after you were
diagnosed in April, are theredifferent symptoms you're having
now?
Yes, can you share those?
So?
Speaker 3 (18:57):
I'd say the last six, seven months since that
diagnosis and, by the way, thediagnosis was, you know, not
handled properly and we couldget into that in a minute but
they immediately put me ondenepazil.
They immediately put me ondenepazil.
What I noticed was some prettyserious changes with the
(19:19):
cognition.
So again, my memory wasimpacted.
I started having bouts withincontinence Right now I'm
getting by using a little pantyliner, but I may have to advance
to something else going forwardand that kept me from working.
Quite frankly, I was down totwo and a half days a week and I
(19:40):
felt like, oh my God, I can'tdepend on my bladder.
So I couldn't remember myclients' names.
I'm sorry, curry.
Speaker 2 (19:49):
Let me tell you something.
Don't be ashamed at all abouthaving to use the incontinence
underwear.
I've been in it since 2017.
It's just part of it.
It's just part of it, man.
Speaker 3 (20:00):
Yeah, it's just part of it.
Yep, so the memory changes theincontinence.
I blacked out twice.
That scared the hell out of me.
One time I was driving andeverything went black,
everything.
And thank God it was just acouple seconds but, like god
(20:20):
forbid, I was on the highway orI had swerved.
You know, you never know.
So, um, that was enough.
That's when I said I'm notworking anymore, I can't take a
chance on this.
And and then I've noticed, likeI'll be eating dinner and the
fork flies out of my hand.
It's like I can't hold it.
Um, goofy things that you, youthink what?
(20:44):
How did that happen?
You know, um, there's been aterrible, terrible, like cotton
mouth where I can't.
I did start using that.
What is that called?
Speaker 2 (20:58):
Biotin.
Speaker 3 (20:58):
Yes, I found that in my husband's bathroom closet.
I'm like you have this.
Speaker 2 (21:03):
Yeah, it worked good.
Speaker 3 (21:05):
So I've just started using it last couple of days.
But it was intolerable that I'dbe popping mints or Lifesaver
something drinking water and Ijust could not get rid of that
feeling of dry mouth, which isweird because at the same time I
notice an excess of saliva.
You'd think an excess of salivais going to keep your mouth
(21:33):
from being dry, but it's, youknow.
So I don't understand.
But so these kinds of symptomsare what I'm dealing with
Currently, and some muscle I'venever had, like the like the
Charlie horse, or the musclespasm where you wake up, you
jump out of bed and you can'tstand.
I started having those middleof the night, and so you deal
with it, right.
Speaker 1 (21:54):
Yeah, and it's Curry's chomping on something
right now, as she usually does.
Do you think it's the medicine,Curry, or do you think it's
just one of the symptoms of Lewyfor you?
Speaker 2 (22:06):
I think it's part of Lewy.
It could be part of both, but Ireally do think it's more Lewy
than anything.
Speaker 1 (22:13):
Yeah, and again, we're not giving medical advice,
we're just sharing ourexperiences.
What helped my husband wasmagnesium.
They make these.
He called them horse pillsbecause they were so big we had
to cut them in half, so he wouldtake a half of one and that
helped his cramping in thatcharlie horse thing.
(22:37):
Yeah, did you take anything foryours?
Speaker 3 (22:40):
that magnesium 350 milligram yeah, and I do take
magnesium every day.
I have for years.
Did you take anything for yours?
Magnesium 350 milligrams, and Ido take magnesium every day.
I have for years.
Speaker 1 (22:50):
But this is just something new that I've not
experienced, and it could goaway tomorrow and something else
could happen.
That's just kind of what thiscrazy disease does.
So this next question I thinkwe ask people to share all the
time.
So you got the officialdiagnosis in April of 2024.
(23:10):
And then when did the doctorwant to see you again?
Speaker 3 (23:16):
So after the testing was done, I went into the
neuropsych department and theyoung woman that gave me my
diagnosis I had never met herbefore.
She was a neuropsychiatrist, Ithink is what she was called.
So she said to me um, you havesomething called Lewy body
(23:37):
disease.
You have mild cognitiveimpairment.
This is a progressive disease.
There is no cure for it.
They say that the lifespan isabout five to eight years.
She said but I can't give you atimeframe.
What I want you to do is gohome and get your things in
(23:58):
order and then come back in ayear things in order, and then
come back in a year April of2025, you're going to be seeing
my colleague, dr Schatz, becauseI just took a position at
Cleveland Clinic and I was like,wait, I'm trying to digest what
she's telling me.
I said wait, tell me about thattimeframe.
(24:20):
She goes well, there is notimeframe.
She goes.
Everybody's different, but whatthey say is five to eight years
, depending on when it'sdiagnosed.
And she goes Ro, you couldleave here today and get hit by
a bus.
She says that's how life is.
She said I can't tell you howlong you have.
I just know that the onlydefinitive way to determine if
(24:46):
you have Lewy body is after youdie and they do an autopsy on
the brain.
She said but for now,everything the MRI, the lumbar
puncture, that's all pointing toLewy body disease.
So there's a saying in.
I've started, started readingsome.
What do they call it?
Not alternative medicine, it'sanother, it's another type of MD
(25:10):
, but the joke is what they sayabout traditional neurologists.
They diagnose and say, adios,that's the joke and it's so true
and that was my experience.
And it's very sad that ourmedical industry is set up for
the benefit of the physician,for the benefit of the hospital.
(25:33):
We need to change that so thatthe patient is the focus.
The patient becomes the onethat helps to make those
decisions and, you know, forgestheir path right.
Speaker 1 (25:45):
Yep, and we usually most people when they come on
and they share their story.
You know, here's your diagnosis, get your fears and all you see
in six months.
But when she said a year, I'mlike ugh.
And we're on this soapbox, Kariand I.
We've been on it for years nowis you need to treat the whole
person just like they treatsomebody with cancer and that is
(26:07):
happening more, but just notenough.
Speaker 2 (26:13):
See my doctor, my GP.
I'd been to a neurologist Longstory, I never go back to one.
So my GP diagnosed me and hewanted to see me every 30 days
for the first year and as he wasworking on getting my
medications right, and thenafter that it was every 90 days.
(26:36):
Uh, but I don't.
I never have been able tounderstand how neurologists can
see you once a year for 15 or 20minutes and then be able to do
anything for you.
Speaker 3 (26:48):
It just doesn't make no sense well, when the when the
symptoms kind of got worsearound august or so, I called
this uh, this colleague of hersto make an appointment and they
said, well, we could see you insix months.
Like no, the blackouts arehappening now, the incontinence
is happening, now my memory isout the window.
(27:08):
And they said, well, we can getyou in to see another
neurologist in four weeks, butyou have to go through another
series of neuropsych testing.
Like, wait, this is August andI just did it in February.
You want me to do all of thatagain?
She said, in order to seeanother doctor, and I jumped
(27:30):
through the hoops what else areyou going to do?
Speaker 1 (27:34):
Was it in the same practice, the doctor?
Speaker 3 (27:36):
It was and the thing that surprised me I work at
University of Cincinnati.
That's what I was thinkingLinda, the insurance, somebody's
making a buck somewhere.
But I worked at University ofCincinnati and that's where I
was being seen and, I'm sorry, Ilost my train of thought.
(27:57):
It was the same practice andthis time I went in and I saw
this young guy.
I call him younger, he'sprobably in his 40s.
To me that's younger butbrilliant, brilliant young man.
And I went in there with a listof 20 questions and I wanted to
know why don't you have anyinformation on Lewy body in your
(28:20):
waiting room?
You have plenty on ALS.
You have plenty on Alzheimer's.
Where information on Lewy bodyin your waiting room?
You have plenty on ALS.
You have plenty on Alzheimer's.
Where's the Lewy body stuff?
I asked him how many patientsof Lewy body do you see in your
practice?
He said about a third of hispatients are Lewy body, which
gave me some hope.
I said I've been doing researchand I've heard about Louis body
(28:41):
centers of excellence all overthe country.
Why isn't university ofCincinnati in that list of 30 in
the consortium?
He goes oh, we submitted ourapplication, we're in the
process.
It takes about two years.
So everything I asked I wassatisfied with.
And, linda, if I told you, hespent an hour and 20 minutes
(29:01):
with me.
That's unheard of.
He said do you want to comeback in four months or do you
want to come back in six months?
Speaker 1 (29:08):
Yeah, I said yeah, let's make it four months yeah
because he's younger.
When we moved to New Orleansarea, I was in with that doctor
for over an hour and a half forthe first time and his nurses
kept coming and I know they werecoming to the door to tell him
you're back, you're back andyou're getting backed up.
But I didn't.
I was like same thing I have.
I need you to know.
(29:28):
I had this whole list of things.
I wanted this new guy you knowto know, cause on his website he
said he was.
You know he specializes inLouie, but he also specialized
in like 12 other things too.
Now you know we're not throwingall neurologists under the bus
Of course not.
Now I just think there's, fromwhat I've been hearing is
(29:51):
there's a shortage ofneurologists in our country, so
they're doing like double time,so they don't.
You know it's, I get it, butit's still not acceptable.
You know to, but we've, I don'tknow, curry, I think it might
be 50, 50.
How many people are seeingtheir gps now, instead of
(30:11):
neurologist versus neurologistum?
Speaker 3 (30:16):
so I've got a remarkable gp plus because I was
with the integrative departmentat uc.
I also see an integrativephysician there and we talk
about meditation, we talk aboutmassage, we talk about diet, all
of those extra things, you know.
People think they're extra.
Guess what?
It's part of the picture.
Speaker 1 (30:36):
Yep, it needs to be part of the picture for a real
holistic a true, holistic, yeah,and I think that's what the
center of excellences are tryingto do is treat holistically.
And I know I've told this storywhen Jim went to his urologist,
you know, and they doubled hismed and made his dementia get
worse, and I'm like you need toknow the whole person, not just
(30:57):
his privates.
Okay, so I'm with this one is.
I just wanted to ask this, bothof you guys, first you row how
does it make you feel,especially being someone early,
newly diagnosed early and newly,which we rarely have that with
people usually it's a longdiagnosis diagnosis.
(31:18):
So how does it make you feelwhen someone learns of your
diagnosis and they say you lookfine so, yeah, to be honest,
linda, it makes me feelinvisible.
Speaker 3 (31:34):
It really does.
It makes me feel likeeverything that's happening to
me, my emotional, the mentalchanges that are taking place
makes me feel like it's all inmy head.
A few months ago, I mentionedto my sister that I was driving
in the car and listening toBruce Springsteen Born to Run.
(31:54):
And I said to my sister man,the thought popped in my head Is
there going to come a time whenI'm not able to sing those
words, that that I love so much?
Right, she's like don't gothere, don't even think that.
Now I can't stop those thoughtsfrom popping in my head.
I'm not going to dwell on them,but I'm not able to, like you
(32:17):
know, arrest it and stop itright there.
Those thoughts are going tooccur to us.
Right, I'm going to rememberthe words to my favorite song.
Speaker 2 (32:26):
Music is normally the last thing we go, that's good
it really is, that's good.
Speaker 3 (32:33):
I love my music.
But seriously, when someonecuts you off like that, like
don't go there, don't think thatI'm going to think that I'm not
going to dwell on it, I'm notgonna live there, but but allow
me to have those thoughts.
Speaker 1 (32:47):
I think it's part of my acceptance process, linda,
you know yeah, I mean, we allknow, with this crazy disease,
that we've heard over and overagain like j Jim's drummer
friend would come and visit andhe texts me like when he left he
texts me Jimmy Jimmy looked,sounded great.
I'm like, okay, come back now,cause he's not, he doesn't sound
(33:10):
great, he just he could showhis show times for you and yeah
but it's so.
Speaker 3 (33:17):
I hear things from my husband like um, you're going
to be fine, you look great, youdon't really have serious
symptoms, you'll probablyoutlive me, and those things are
fine.
Those things are encouraged.
I think he wants to besupportive in his own way.
I think he wants to encourageme, and yet that's not my
(33:39):
reality.
I don't necessarily believethose things with my whole heart
.
Speaker 1 (33:45):
He's in denial too, which is, you know.
Again, it's a defense mechanism, for sure, perry.
What about you?
Speaker 2 (33:54):
When they come up and tell me you don't look like you
have dementia, I just say we'regoing to ask them what am I
supposed to look like?
And it pretty easily shuts themup dementia.
I just say ask them what am Isupposed to look like?
That usually shuts them up.
Speaker 1 (34:05):
That's why we have that poster.
We put up Faces of Dementiabecause there's no it doesn't
discriminate.
Did anybody think you weren'ttelling the truth or you were
making stuff up in the beginning, Curry?
Speaker 2 (34:20):
Oh yeah, yeah, several people did.
Family members thought sothat's, I don't know.
Speaker 1 (34:29):
I think that's why I recorded things so much.
Um, I recorded jim a lot sothat when we went to the doctors
and he showed time for thedoctor you know, you know how it
goes the doctor would do youhave any more night terrors?
Did you do this or that?
And he's saying no, I'm fine.
And I'm behind him in likeshaking my head and yeah, it's,
(34:52):
it's.
That can be a very frustratingthing too, because even as a
caregiver I'm like people willprobably think I'm making this
up because he can show time infront of people.
You know, until his friend thedrummer, his friend Ray the
drummer mom had Alzheimer's andhe gave me a.
I wish I remember the title ofthe book that literally talked
(35:14):
about show timing, because hesaid he felt like people thought
he was making it up about hismom too.
So yeah, it's not easy for sure.
We knew this was going to be alonger episode, so we're going
to stop it here for this weekand we'll pick back up next week
with part two of ourconversation with Ro.
(35:36):
So we'll be back with you nextweek.
Welcome back podcast family.
Speaker 2 (00:14):
Yes, welcome back all y'all.
Speaker 1 (00:16):
I want to thank yous.
I had y'all on there, curry, Ihad y'all, but my brother
reminded me I'm back inPhiladelphia and we say yous, so
I guess we'll let you get awaywith it.
I just want'all, but my brotherreminded me I'm back in
Philadelphia and we say yous, Iguess we'll let you get away
with it.
I just want to thank yous as ateacher, that drives me crazy
too.
Why are you a USC?
But anyway for being so patientand supportive.
Before we introduce today'sguest, we want to remind all of
(00:39):
our listeners that we are notgiving medical advice.
We are just sharing our openand honest feelings and thoughts
as we live with Lewy bodydementia.
Speaker 2 (00:49):
Yeah Now, folks, I want to give a big thanks to
each and every one of oursupporters out there.
Y'all have just been great withus this whole time.
We've gone through a periodhere where we didn't do some
podcast because life happened,but we're getting back into it
now.
We're starting off good today,so we just want to thank you all
(01:10):
for still supporting us.
Speaker 1 (01:12):
Yeah, yeah, it's really been humbling to us
because we stress out when we'renot able to get an episode off
for sometimes a couple weeks ormore.
But you know life, you alllistening know the Louis life,
so that's what everybodyunderstands.
(01:33):
Another quick reminder aboutthe Zoom support meetings.
All the links are the same linkand all the information is
above the announcements.
I think it's called events nowon both of our Facebook pages
(01:55):
and someone always posts the dayof the meeting what meeting it
is.
So please feel free to join us.
And I want to do a shout out toJulie, who posts those
inspirational, positive postsevery single day.
And if you all could send herhugs and love and prayers and
strength, because Ron's notdoing her husband Ron, who has
(02:19):
Lewy bodies and doing so well,but still, on the face of all
that, she's still posting thosepositive messages every day.
So thank you, judy, from me andeverybody in the groups exactly
well, folks.
Speaker 2 (02:33):
Uh, I'd like to give another reminder that we're not
giving out medical advice.
We're only sharing ourexperiences.
We're only sharing ourexperiences and personal
journeys as we travel throughthis thing called Lewy Body
Dementia.
So let's get this thing startedthis week.
Please welcome our friend Ro.
Her name is Rose, but she goesby Ro, so if you catch me, I may
(02:56):
call her Ro or I may call herRose.
But Ro, could you introduceyourself and tell us where
you're from and how long ago youwere diagnosed and how old are
you, and then we can ask yousome more questions.
Speaker 3 (03:09):
I'm happy to Thank you, linda, and thank you, curry
, for having me today.
I'm Roe Pagoli.
I go by Roe or Rosie or Rosanna, it doesn't matter, but Roe is
the most comfortable for me.
I'm from Cincinnati, ohio, andI'm 65 years old.
Speaker 1 (03:28):
Say it again, linda, I was going to say or you go by,
hey you, hey you, hey you.
Speaker 3 (03:34):
Yeah, I was diagnosed with Lewy body disease and mild
cognitive impairment in Aprilof this year.
Speaker 2 (03:43):
Wow.
Speaker 1 (03:45):
That's new.
She's a newbie.
Speaker 2 (03:47):
You bet you Can you share with us how it all started
for you.
What were some of the firstsymptoms you had that made you
seek medical attention?
Speaker 3 (04:01):
Yeah, curry, you know I've had symptoms for about
eight or nine years and I firststarted noticing some changes
with my memory and that kind ofcoincided with some changes in
my sleep pattern.
But that's going back to like2016.
I started losing things.
I lost my wedding band set andhe replaced it.
(04:23):
I lost the second set.
I lost credit cards.
You know some serious stuffthere.
But the first time I noticedthere was something going on
with my memory, I had attendedmy niece's graduation at Penn
State and stayed overnight and Igot in the car the next day,
got on the highway and I'mthinking to myself wait, what
(04:45):
was the name of that town?
I stayed in last night and Icould not recall it, and what I
found was the more I tried tothink about the name of the town
, the more anxious I became, andso it never did come back to me
.
A couple weeks after that, Iwas leaving the grocery store
(05:07):
and I come out and I'm in theparking lot and I'm like whoa,
where am I?
And I knew like holy crap, man,something is not right, and it
took me a minute or two toreally get my bearings and
figure out.
Okay, you went grocery shopping,you're going to look for your
car, you're going to drive home,and that's eight years ago.
(05:27):
One of the things that reallygot my attention was I was
engrossed in doing something andthe question popped in my head
like wait, wait a second, wherewere we?
When my husband proposed to meand, honest to God, I knew we
(05:49):
were someplace fun, we were onvacation, but I couldn't think
of the place we were.
For the life of me, that's animportant event in your life,
right.
Speaker 2 (05:59):
Oh yeah.
Speaker 3 (05:59):
So, again, I stressed about it and then I kind of
caved in.
I went over to my husband likethis is going to sound crazy,
but where were we when youproposed to me?
He's like, bro, we were in KeyWest, what do you mean?
I'm like oh yeah, you're right.
Yep, we had a blast.
I turned around and literallyfive minutes later I could not
remember Key West.
(06:21):
That's when I knew like, okay,something is going on here.
Now, when was that?
How long ago?
Was that 2016,?
So about eight years ago, okay.
Speaker 1 (06:35):
Did you go see a doctor then, or you?
Speaker 3 (06:38):
just I went to see my GP, linda, and she immediately
wanted to do a brain CAT scanand run tests.
And, quite frankly, my dad wasa doctor and we grew up like
everything was you know aprescription for this or go get
that test done.
And I've lived my whole lifetrying to not stress over.
(07:02):
You know it's got to be reallyserious, right?
Whole life trying to not stressover.
You know it's got to be reallyserious, right?
So on top of that, I didn'twant to jump into all the
testing and stuff.
Eight years ago I thought, well,it's stress, it's stress.
And at the same time I had hada very traumatic event that took
place in my life and Iattribute it to my son, had
(07:28):
severed the ties with me, himand his girlfriend, and these
symptoms seemed to surface rightaround all this other drama
with my son and I just thought,hey, that's my body reacting,
right.
So I just figured um, let's letit play out, let's see what
happens.
And and that's actually whenthe nightmares started, the
(07:52):
night terrors started rightaround the same time.
Um, I've come to understandthat night terrors and, uh, rem,
sleep disorder, that's like ahallmark of Louie.
Didn't know it back then, butwhen those dreams started, they,
it was one after the other,night after night, and it was
(08:14):
always about someone trying tomurder my son.
Now remember that's happeningin the background, that he's
like never want to see you again, you're not going to see your
grandchildren, and so I justthought, god, it's got to be
related, right.
So so I really took my time.
So I really took my time.
And then I also had an elderlymom that I was trying to care
(08:37):
for, 700 miles away.
I found myself flying back andforth to the East Coast to help
take care of my mom, and so myhealth issues.
Am I not getting a good night'ssleep?
Am I losing things?
It's secondary to everythingelse going on.
Am I the only one that thathappens to?
To that we push it off the backburner.
Speaker 1 (08:59):
I think that's a defense mechanism.
Speaker 2 (09:02):
Yeah.
Speaker 1 (09:02):
Really yeah, because, curry, how long was it before
you really spoke up, like how,like even years?
Speaker 2 (09:21):
years I'd had hallucinations starting about
2007, and I really didn't speakup until about 2010.
And then, when it really gotbad was 2016.
That's when I told her sheneeds to go ahead and let me go
to the doctor, because she hadbeen trying to get me to go and
I just wouldn't go.
Speaker 1 (09:35):
Really, you wouldn't go to the doctor, shocker.
Speaker 2 (09:37):
Well, I thought it was all me driving.
Speaker 1 (09:42):
You know you're a bugger when it comes to going
and getting.
I was just pointing my fingerat him.
Everyone that's listening.
But I totally understand, likeI can only imagine it's a
defense mechanism and just likefor caregivers, it's the defense
(10:02):
mechanism to push it away ordown or pretend like it's not
happened.
I think is how we survivesometimes.
Speaker 3 (10:10):
It's how we get through day to day, right, right
.
Speaker 1 (10:14):
And caring for everybody else in the family,
especially the moms no offense,dads out there and you're taking
care of your mom from far away.
Stress clearly has a lot to dowith it.
That doesn't help either, I cantell you.
I'm not sure how long Jim was.
(10:36):
Things were going wrong untilit was the beginning in, I guess
, the beginning of 2017.
Maybe it was springtime.
And he came home from hismidnight shift 12 at night, six
at night to six in the morning,midnight shift 12 at night, 6 at
(10:57):
night to 6 in the morning andhe said I think I may need to go
to the doctor's because I wassitting at my desk and I
couldn't remember the kids thesecond floor of our house, like
where the kids' rooms were.
And I'm like that's weird and Ialways just brush it off too,
because he worked 12-hour shifts, 6 in the morning till 6 at
night, or 6 hour shifts, six inthe morning till six at night,
or six at night till six in themorning, and they rotate it.
(11:20):
And um which we've been findingmore and more people on the
Facebook pages saying that, likeCarla's husband who was in the
documentary with us, her husbandwas a nurse on swing shift.
So stress?
They told Jim he had stress.
They said you got a lot ofstress and, curry, you've met
Jim.
That man never stressed and hehad the same stressful job in
(11:44):
the control center at theelectric company for 30-some
years.
So they made him take two weeksoff and then the whole testing
happened.
So I'm going to ask her this,since I'm on this Curry, I just
did a segue.
So can you share with us whattests did they do to actually
(12:07):
diagnose you with LBD?
And I don't remember whetheryou said you went to your GP or
neurologist.
Speaker 3 (12:14):
Back then, I went to the GP, but I did not have any
testing done.
Okay, uh, it wasn't until 2020I think it was 2020, because it
was around COVID that I, uh,finally conceded to having the
sleep study done, because, youknow, a a couple of years had
(12:34):
gone by, I was dealing withinsomnia and nightmares and
thrashing, and we had alreadybegun to look at sleeping in
separate rooms, which, by theway, absolutely sucks, but it's
the only way I can survive is tosleep in the spare bedroom.
Yep.
So what was your question?
Speaker 1 (12:56):
linda.
No, it's okay, I just what Ifind when I'm getting ready to
break.
It doesn't always work, ascurry will tell you.
Um, I try to think of somethingtotally different what testing.
I had yeah, I was just sayingbecause when I had it, when I
decided to switch rooms for myown safety, that was probably
one of the hardest things I'veever had to do.
(13:17):
But what tests?
So you went to your GP and then, later on, what tests?
Speaker 3 (13:22):
The sleep study, the overnight sleep study at
University of Cincinnati.
So that was around 2020 and ithad to be 2020 because the
follow-up was through virtual.
He wasn't even seeing patientsin person, right?
So it's during the virtualfollow-up meeting that my sleep
doctor says to me you haveobstructive sleep apnea and you
(13:45):
have something called RBD, whichis a REM sleep disorder, and he
gave me I want you to get aCPAP machine.
And he finished theconversation by saying scared
the hell out of me.
He said 97% of patientsdiagnosed with RBD will go on to
(14:07):
develop a neurodegenerativedisease in 10 to 15 years.
And I was flabbergasted.
I was like what are you sayingto me?
It's sleep.
How does that have to do withmy brain?
So you talk about denial.
I put off using a CPAP machinefor a couple of years.
(14:30):
I truly I thought it's going toconstrict, it's going to I'll
lose weight, I'll do whatever Ican.
Maybe that'll help Nothing.
So when I was finally given thediagnosis of Lewy body, they
said you need to be using a CPAPmachine.
This is definitely, itdefinitely correlates with Lewy
(14:52):
body what you're going throughat night, and I began to
understand the connectionbetween my sleep and this
neurodegenerative disease.
Speaker 1 (15:04):
And I know I asked you this in Zoom the other day
because I've only ever heard REMas R-E-M.
So what does?
Speaker 3 (15:12):
R-B.
Speaker 1 (15:12):
RBD stand for yeah.
Speaker 3 (15:18):
So it's called REM.
Let's see, I wrote it down foryou sleep apnea and REM sleep
behavior disorder.
So think of it this way Linda Rfor REM behavior disorder.
Speaker 1 (15:30):
Does that?
Speaker 3 (15:31):
make sense.
Speaker 1 (15:32):
No, yeah, I just have never heard it.
I don't care.
Have you ever heard it calledRBD?
Speaker 2 (15:37):
Yeah, some people call it RBD Okay.
Speaker 1 (15:39):
I guess I never.
Speaker 2 (15:42):
It depends on what the doctor calls it.
Speaker 3 (15:44):
Yeah, so once I had that follow-up meeting after the
sleep study, immediately mysleep doctor's like I would like
you to go get neuropsychtesting and then we'll run,
we'll see what's going on withyour brain.
And he knew there was somememory issues and again, because
of my focus was on my mom.
(16:06):
I'm like that's 2020.
I'm not doing all that I can't.
There's no, there was nothingleft of me to give.
So my mom died a year ago, lastNovember, and that's when I
really and truly started lookingat.
Okay, I got to deal with this.
Now he wants me to get theneuropsych testing.
(16:26):
I'll go do the testing.
So, to answer your question,they did the hours and hours of
neuropsych testing in February.
The results of those led to abrain MRI.
They ordered the lumbarpuncture where they found the
alpha-synuclein protein in thecerebral spinal fluid.
(16:48):
And then I did end up goingdown to University of Miami and
they did that acinuclein biopsywhich showed that I have that
protein.
Does that help answer thatquestion?
Speaker 1 (17:05):
Linda, no, yeah, yeah , because we always try to ask
each person we have come onwho's been diagnosed.
Just so, the people listening,I think everybody goes through
that four-hour testing.
Corey, you did that right, yeah, yeah, which is to me torture.
I can't imagine doing it assomeone who's being tested for a
(17:30):
potential brain issue.
I guess it's meant to be thatway.
See how you perform after fourhours of Stressful testing.
Yeah, right, stressful testing.
So again, I want to thank youfor coming on because your
(17:52):
diagnosis is new, like you saidin April, even though you've
been having these symptoms.
So you shared that you werehaving the RBD and the memory
issues.
Can you share with us Sorry, Ijust lost my place that you were
on early diagnosis, which isgreat?
(18:14):
That sounds terrible, butthat's great because the average
is what?
18 to 24 months now, I thinkit's up to to get diagnosed.
Speaker 2 (18:26):
And the good part about being early diagnosed is
you're going to start yourtreatment earlier.
They say you're going to have abetter journey than if you were
diagnosed late.
Speaker 1 (18:39):
Yeah, yeah, that's true.
So, from the initial symptomsyou had until after you were
diagnosed in April, are theredifferent symptoms you're having
now?
Yes, can you share those?
So?
Speaker 3 (18:57):
I'd say the last six, seven months since that
diagnosis and, by the way, thediagnosis was, you know, not
handled properly and we couldget into that in a minute but
they immediately put me ondenepazil.
They immediately put me ondenepazil.
What I noticed was some prettyserious changes with the
(19:19):
cognition.
So again, my memory wasimpacted.
I started having bouts withincontinence Right now I'm
getting by using a little pantyliner, but I may have to advance
to something else going forwardand that kept me from working.
Quite frankly, I was down totwo and a half days a week and I
(19:40):
felt like, oh my God, I can'tdepend on my bladder.
So I couldn't remember myclients' names.
I'm sorry, curry.
Speaker 2 (19:49):
Let me tell you something.
Don't be ashamed at all abouthaving to use the incontinence
underwear.
I've been in it since 2017.
It's just part of it.
It's just part of it, man.
Speaker 3 (20:00):
Yeah, it's just part of it.
Yep, so the memory changes theincontinence.
I blacked out twice.
That scared the hell out of me.
One time I was driving andeverything went black,
everything.
And thank God it was just acouple seconds but, like god
(20:20):
forbid, I was on the highway orI had swerved.
You know, you never know.
So, um, that was enough.
That's when I said I'm notworking anymore, I can't take a
chance on this.
And and then I've noticed, likeI'll be eating dinner and the
fork flies out of my hand.
It's like I can't hold it.
Um, goofy things that you, youthink what?
(20:44):
How did that happen?
You know, um, there's been aterrible, terrible, like cotton
mouth where I can't.
I did start using that.
What is that called?
Speaker 2 (20:58):
Biotin.
Speaker 3 (20:58):
Yes, I found that in my husband's bathroom closet.
I'm like you have this.
Speaker 2 (21:03):
Yeah, it worked good.
Speaker 3 (21:05):
So I've just started using it last couple of days.
But it was intolerable that I'dbe popping mints or Lifesaver
something drinking water and Ijust could not get rid of that
feeling of dry mouth, which isweird because at the same time I
notice an excess of saliva.
You'd think an excess of salivais going to keep your mouth
(21:33):
from being dry, but it's, youknow.
So I don't understand.
But so these kinds of symptomsare what I'm dealing with
Currently, and some muscle I'venever had, like the like the
Charlie horse, or the musclespasm where you wake up, you
jump out of bed and you can'tstand.
I started having those middleof the night, and so you deal
with it, right.
Speaker 1 (21:54):
Yeah, and it's Curry's chomping on something
right now, as she usually does.
Do you think it's the medicine,Curry, or do you think it's
just one of the symptoms of Lewyfor you?
Speaker 2 (22:06):
I think it's part of Lewy.
It could be part of both, but Ireally do think it's more Lewy
than anything.
Speaker 1 (22:13):
Yeah, and again, we're not giving medical advice,
we're just sharing ourexperiences.
What helped my husband wasmagnesium.
They make these.
He called them horse pillsbecause they were so big we had
to cut them in half, so he wouldtake a half of one and that
helped his cramping in thatcharlie horse thing.
(22:37):
Yeah, did you take anything foryours?
Speaker 3 (22:40):
that magnesium 350 milligram yeah, and I do take
magnesium every day.
I have for years.
Did you take anything for yours?
Magnesium 350 milligrams, and Ido take magnesium every day.
I have for years.
Speaker 1 (22:50):
But this is just something new that I've not
experienced, and it could goaway tomorrow and something else
could happen.
That's just kind of what thiscrazy disease does.
So this next question I thinkwe ask people to share all the
time.
So you got the officialdiagnosis in April of 2024.
(23:10):
And then when did the doctorwant to see you again?
Speaker 3 (23:16):
So after the testing was done, I went into the
neuropsych department and theyoung woman that gave me my
diagnosis I had never met herbefore.
She was a neuropsychiatrist, Ithink is what she was called.
So she said to me um, you havesomething called Lewy body
(23:37):
disease.
You have mild cognitiveimpairment.
This is a progressive disease.
There is no cure for it.
They say that the lifespan isabout five to eight years.
She said but I can't give you atimeframe.
What I want you to do is gohome and get your things in
(23:58):
order and then come back in ayear things in order, and then
come back in a year April of2025, you're going to be seeing
my colleague, dr Schatz, becauseI just took a position at
Cleveland Clinic and I was like,wait, I'm trying to digest what
she's telling me.
I said wait, tell me about thattimeframe.
(24:20):
She goes well, there is notimeframe.
She goes.
Everybody's different, but whatthey say is five to eight years
, depending on when it'sdiagnosed.
And she goes Ro, you couldleave here today and get hit by
a bus.
She says that's how life is.
She said I can't tell you howlong you have.
I just know that the onlydefinitive way to determine if
(24:46):
you have Lewy body is after youdie and they do an autopsy on
the brain.
She said but for now,everything the MRI, the lumbar
puncture, that's all pointing toLewy body disease.
So there's a saying in.
I've started, started readingsome.
What do they call it?
Not alternative medicine, it'sanother, it's another type of MD
(25:10):
, but the joke is what they sayabout traditional neurologists.
They diagnose and say, adios,that's the joke and it's so true
and that was my experience.
And it's very sad that ourmedical industry is set up for
the benefit of the physician,for the benefit of the hospital.
(25:33):
We need to change that so thatthe patient is the focus.
The patient becomes the onethat helps to make those
decisions and, you know, forgestheir path right.
Speaker 1 (25:45):
Yep, and we usually most people when they come on
and they share their story.
You know, here's your diagnosis, get your fears and all you see
in six months.
But when she said a year, I'mlike ugh.
And we're on this soapbox, Kariand I.
We've been on it for years nowis you need to treat the whole
person just like they treatsomebody with cancer and that is
(26:07):
happening more, but just notenough.
Speaker 2 (26:13):
See my doctor, my GP.
I'd been to a neurologist Longstory, I never go back to one.
So my GP diagnosed me and hewanted to see me every 30 days
for the first year and as he wasworking on getting my
medications right, and thenafter that it was every 90 days.
(26:36):
Uh, but I don't.
I never have been able tounderstand how neurologists can
see you once a year for 15 or 20minutes and then be able to do
anything for you.
Speaker 3 (26:48):
It just doesn't make no sense well, when the when the
symptoms kind of got worsearound august or so, I called
this uh, this colleague of hersto make an appointment and they
said, well, we could see you insix months.
Like no, the blackouts arehappening now, the incontinence
is happening, now my memory isout the window.
(27:08):
And they said, well, we can getyou in to see another
neurologist in four weeks, butyou have to go through another
series of neuropsych testing.
Like, wait, this is August andI just did it in February.
You want me to do all of thatagain?
She said, in order to seeanother doctor, and I jumped
(27:30):
through the hoops what else areyou going to do?
Speaker 1 (27:34):
Was it in the same practice, the doctor?
Speaker 3 (27:36):
It was and the thing that surprised me I work at
University of Cincinnati.
That's what I was thinkingLinda, the insurance, somebody's
making a buck somewhere.
But I worked at University ofCincinnati and that's where I
was being seen and, I'm sorry, Ilost my train of thought.
(27:57):
It was the same practice andthis time I went in and I saw
this young guy.
I call him younger, he'sprobably in his 40s.
To me that's younger butbrilliant, brilliant young man.
And I went in there with a listof 20 questions and I wanted to
know why don't you have anyinformation on Lewy body in your
(28:20):
waiting room?
You have plenty on ALS.
You have plenty on Alzheimer's.
Where information on Lewy bodyin your waiting room?
You have plenty on ALS.
You have plenty on Alzheimer's.
Where's the Lewy body stuff?
I asked him how many patientsof Lewy body do you see in your
practice?
He said about a third of hispatients are Lewy body, which
gave me some hope.
I said I've been doing researchand I've heard about Louis body
(28:41):
centers of excellence all overthe country.
Why isn't university ofCincinnati in that list of 30 in
the consortium?
He goes oh, we submitted ourapplication, we're in the
process.
It takes about two years.
So everything I asked I wassatisfied with.
And, linda, if I told you, hespent an hour and 20 minutes
(29:01):
with me.
That's unheard of.
He said do you want to comeback in four months or do you
want to come back in six months?
Speaker 1 (29:08):
Yeah, I said yeah, let's make it four months yeah
because he's younger.
When we moved to New Orleansarea, I was in with that doctor
for over an hour and a half forthe first time and his nurses
kept coming and I know they werecoming to the door to tell him
you're back, you're back andyou're getting backed up.
But I didn't.
I was like same thing I have.
I need you to know.
(29:28):
I had this whole list of things.
I wanted this new guy you knowto know, cause on his website he
said he was.
You know he specializes inLouie, but he also specialized
in like 12 other things too.
Now you know we're not throwingall neurologists under the bus
Of course not.
Now I just think there's, fromwhat I've been hearing is
(29:51):
there's a shortage ofneurologists in our country, so
they're doing like double time,so they don't.
You know it's, I get it, butit's still not acceptable.
You know to, but we've, I don'tknow, curry, I think it might
be 50, 50.
How many people are seeingtheir gps now, instead of
(30:11):
neurologist versus neurologistum?
Speaker 3 (30:16):
so I've got a remarkable gp plus because I was
with the integrative departmentat uc.
I also see an integrativephysician there and we talk
about meditation, we talk aboutmassage, we talk about diet, all
of those extra things, you know.
People think they're extra.
Guess what?
It's part of the picture.
Speaker 1 (30:36):
Yep, it needs to be part of the picture for a real
holistic a true, holistic, yeah,and I think that's what the
center of excellences are tryingto do is treat holistically.
And I know I've told this storywhen Jim went to his urologist,
you know, and they doubled hismed and made his dementia get
worse, and I'm like you need toknow the whole person, not just
(30:57):
his privates.
Okay, so I'm with this one is.
I just wanted to ask this, bothof you guys, first you row how
does it make you feel,especially being someone early,
newly diagnosed early and newly,which we rarely have that with
people usually it's a longdiagnosis diagnosis.
(31:18):
So how does it make you feelwhen someone learns of your
diagnosis and they say you lookfine so, yeah, to be honest,
linda, it makes me feelinvisible.
Speaker 3 (31:34):
It really does.
It makes me feel likeeverything that's happening to
me, my emotional, the mentalchanges that are taking place
makes me feel like it's all inmy head.
A few months ago, I mentionedto my sister that I was driving
in the car and listening toBruce Springsteen Born to Run.
(31:54):
And I said to my sister man,the thought popped in my head Is
there going to come a time whenI'm not able to sing those
words, that that I love so much?
Right, she's like don't gothere, don't even think that.
Now I can't stop those thoughtsfrom popping in my head.
I'm not going to dwell on them,but I'm not able to, like you
(32:17):
know, arrest it and stop itright there.
Those thoughts are going tooccur to us.
Right, I'm going to rememberthe words to my favorite song.
Speaker 2 (32:26):
Music is normally the last thing we go, that's good
it really is, that's good.
Speaker 3 (32:33):
I love my music.
But seriously, when someonecuts you off like that, like
don't go there, don't think thatI'm going to think that I'm not
going to dwell on it, I'm notgonna live there, but but allow
me to have those thoughts.
Speaker 1 (32:47):
I think it's part of my acceptance process, linda,
you know yeah, I mean, we allknow, with this crazy disease,
that we've heard over and overagain like j Jim's drummer
friend would come and visit andhe texts me like when he left he
texts me Jimmy Jimmy looked,sounded great.
I'm like, okay, come back now,cause he's not, he doesn't sound
(33:10):
great, he just he could showhis show times for you and yeah
but it's so.
Speaker 3 (33:17):
I hear things from my husband like um, you're going
to be fine, you look great, youdon't really have serious
symptoms, you'll probablyoutlive me, and those things are
fine.
Those things are encouraged.
I think he wants to besupportive in his own way.
I think he wants to encourageme, and yet that's not my
(33:39):
reality.
I don't necessarily believethose things with my whole heart
.
Speaker 1 (33:45):
He's in denial too, which is, you know.
Again, it's a defense mechanism, for sure, perry.
What about you?
Speaker 2 (33:54):
When they come up and tell me you don't look like you
have dementia, I just say we'regoing to ask them what am I
supposed to look like?
And it pretty easily shuts themup dementia.
I just say ask them what am Isupposed to look like?
That usually shuts them up.
Speaker 1 (34:05):
That's why we have that poster.
We put up Faces of Dementiabecause there's no it doesn't
discriminate.
Did anybody think you weren'ttelling the truth or you were
making stuff up in the beginning, Curry?
Speaker 2 (34:20):
Oh yeah, yeah, several people did.
Family members thought sothat's, I don't know.
Speaker 1 (34:29):
I think that's why I recorded things so much.
Um, I recorded jim a lot sothat when we went to the doctors
and he showed time for thedoctor you know, you know how it
goes the doctor would do youhave any more night terrors?
Did you do this or that?
And he's saying no, I'm fine.
And I'm behind him in likeshaking my head and yeah, it's,
(34:52):
it's.
That can be a very frustratingthing too, because even as a
caregiver I'm like people willprobably think I'm making this
up because he can show time infront of people.
You know, until his friend thedrummer, his friend Ray the
drummer mom had Alzheimer's andhe gave me a.
I wish I remember the title ofthe book that literally talked
(35:14):
about show timing, because hesaid he felt like people thought
he was making it up about hismom too.
So yeah, it's not easy for sure.
We knew this was going to be alonger episode, so we're going
to stop it here for this weekand we'll pick back up next week
with part two of ourconversation with Ro.
(35:36):
So we'll be back with you nextweek.
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