December 17, 2024 • 36 mins
How do you navigate the often confusing path to an accurate Lewy Body Dementia (LBD) diagnosis? This week we talk about what it’s like when Lewy gets ahold of you and many stories of how Lewy is misdiagnosed. We hope sharing these stories helps those seeking a diagnosis to better arm themselves with notes to take to the doctor as we unravel the complexities faced by those living with LBD and their caregivers.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Hello and welcome to our podcast about living on the
Lewy Body Roller Coaster apodcast for Lewy Body Dementia
patients and their families.
Presented by Lewy Body patientsand their families.
Speaker 2 (00:13):
You will hear firsthand the ups and downs and
twists and turns of Lewy BodyDementia From families directly
affected.
We'll share our support andexperiences on all things Lewy
Body.
Speaker 1 (00:25):
We're your hosts, Linda and Curry.
I have a loved one with LewyBody Dementia.
Speaker 2 (00:30):
And I am living with Lewy Body Dementia.
Speaker 1 (00:33):
Let's get started.
Welcome back podcast family.
Speaker 2 (00:43):
Yes, welcome back y'all.
Speaker 1 (00:45):
As always, we want to thank you all for supporting us
.
We always provide the links inthe episode notes below the
episode notes, if you want tolearn more about becoming a
supporter.
Speaker 2 (00:57):
And, as always, we want to send out a special shout
out to a few of our longestsupporters.
We want to send out a specialshout out to a few of our
longest supporters.
I want to start with Matthewand Miriam, Jay McLean, Tom
Conley, Cindy Marcia Treffman,Phyllis Banks, Nancy Guerrero,
Darling Passmore, Armstrong,Ginger Gilmore, Sheila Fury,
(01:22):
Chris Oaks, Elisa Mahoney, RitaMcCord and, our newest supporter
, Cherry Lawrence.
It is because all of y'all andall the others, we will continue
to give shout outs every weekso that we can keep sharing
experiences and information thatcan help each other.
So thank you again and rememberthat if you have Lewy body
dementia and you would like tobe a guest on our show and talk
(01:46):
about your journey, or if you'rea caregiver or an advocate for
someone living with Lewy, pleasecontact myself or Linda Zipula
through messenger or email atlewybodyrollercoaster at
gmailcom.
Speaker 1 (01:58):
I really like how you say my last name.
I like how you put them.
You say it all the letterstogether, and I like that you
put them.
You say it all the letterstogether, and I like that.
Speaker 2 (02:06):
Not a lot of people do that.
Speaker 1 (02:07):
You are Like I said, that's the American version.
Apparently, it's Sipuła inPolish, so anybody from Poland?
We found that out when we wentthere.
They were like oh, sipuła.
I'm like no, it's Sipuła, andthey're like like no.
So we learned um, but anyway,um, and I just realized again
(02:28):
where we decided to record,right when everybody starts
coming home on your end that'swhy you always.
The internet's always wonky foryou guys, yeah our internet is
really bad yeah, around threeish your time, but anyway, um,
as we've shared many times,please consider joining us in
one of our support meetupsthrough Zoom.
(02:49):
We do one on Mondays andFridays, 11.30 Eastern For
anybody with Louie or caregivers.
One on Saturday at 3 pm Easternis for spouses only, and then
Kari does one for just thosewith Louie body on Thursdays at
4 30 eastern.
The links are the same for allof them, posted on their
(03:13):
announcement curry.
Has facebook changed theannouncements, because I always
go to the announcements to clickon zoom because I don't have it
memorized and it looked likethe announcements were.
We have to check that.
Speaker 2 (03:25):
Yeah, I'll check it, I don't know.
Speaker 1 (03:26):
Maybe zoom did a.
You know how they do that.
Uh, yeah, updating stuff, butanyway.
So the links are the same forall the groups.
Uh, we hope everyone listeningwill consider joining us each
week.
And before we bring on, well,we don't have a guest today.
Today it's just me and Curry.
Sorry about that.
Those of you that have beenattending support group know
(03:48):
that I'm in the middle of a biglife change right now.
Hopefully I'm not in an echochamber I feel like I am where I
am now because I don't havecarpet, but we want to share.
I'm trying to put this in ournotes each week to remind people
that I am podcast Linda, andCurry's wife is also named Linda
(04:11):
, so for those of you listening,I'm his little sister.
Speaker 2 (04:18):
Exactly.
Speaker 1 (04:21):
Yeah, just so you know, Because there's people
that are still posting about youknow.
I guess they don't because wedon't say it all the time.
I guess they just realize thatI'm your better half, which is
fine, you know.
But I don't want to takeanything away from the real.
Speaker 2 (04:37):
Curry's.
Linda, yeah, so yeah, everyonegets confused.
Uh, when I post something withthe name Linda in it, I may be
talking about my wife, but theythink I'm talking about you.
Speaker 1 (04:51):
Yeah.
Speaker 2 (04:51):
And then many times they'll say oh, you and Linda,
you and your wife Linda do sucha good job on the podcast.
They don't realize you're notmy wife.
Speaker 1 (05:00):
No, but she does do a nice job behind the scenes.
Look how nice your hair looks,even though nobody else can see
it.
Because I know when we tapedlast week with Naomi from
Ireland, curry took off his hatand we were like, whoa, you need
a haircut, buddy.
(05:22):
We weren't used to seeing youwithout a hat.
But anyway, let's get going.
I just wanted there's only acouple things I wanted to talk
about this week.
Um, and one I'm gonna put youon the spot a little bit.
Curry is because I know you youtold me you've been having like
four out of five weeks.
It's been rough for you.
So can you, can you share withus how you are when this happens
(05:47):
?
And because you said ithappened before and yeah, yeah,
talk about that for others yeah,part of it.
Speaker 2 (05:57):
Uh, the biggest thing is I've always, from day one, I
go through periods of uh I calltensing up, where I can be in
my recliner, trying to get somerest or something, and my whole
body I mean every joint I gotand every muscle I have just
tenses up and it hurts and Ihave to get up and walk around,
(06:20):
go out back, go out front, smokea cigarette, come back and try
to do it again, and still can't.
And a lot of times, most timeswhen that happens, it lasts for
about six hours.
So I've had that going on.
And then also I startedsomething new four weeks ago and
(06:46):
that's interior tremors.
I've never had those, as I canremember, and it's not, it's not
anxiety and it's not like it'snot like a coffee I've been
(07:07):
making coffee or anything likeit.
It's a lot worse than eitherone of those.
It just feels like my fingers,my wrist, my arms, everything's
wanting to jump out of my skin.
Real bad.
And then it went nonstop thefirst two weeks.
I mean just stayed with me 24hours a day for those first two
(07:33):
weeks and I mean it goes all theway down to my feet.
Every part of my body feelslike it's just shaking inside
real bad and it went solid for24 for two weeks and that's why
(07:53):
you were so tired, right?
yeah, oh, yeah it just wears meout and it wears me out and the
fatigue, it just exasperates thefatigue and also my shortness
of breath gets real bad duringthose, and so it slacked off the
(08:14):
third week and then it cameback on last week.
Speaker 1 (08:21):
How is it now?
How is it today?
Speaker 2 (08:24):
They came back this morning.
They had left Saturday orSunday and came back today.
Speaker 1 (08:33):
And so you nothing changed, like you didn't have
extra stress or anything, or no,nothing, nothing changed.
Speaker 2 (08:43):
No same medication.
Everything you know, samechanged.
No same medication.
Speaker 1 (08:45):
Everything you know, same, same old, same old yeah,
so it's just yeah, when you'regoing through this, what advice
would you give others?
When they hit that louis low,because you know you, you said
you, you've been through thisbefore and then you, you came
out of it, so what advice wouldyou give others?
Speaker 2 (09:05):
Well, you know, I don't know, I just kind of ride
it out.
Linda rides it out.
She talks about it quite a bitwhen it's going on with me.
But you know, the first time ithappened to me, or one of the
(09:26):
first times no, it's not thefirst time my doctor put me on a
muscle relaxer when it firststarted five years ago, and that
worked good for about three,three and a half years and then
apparently that muscle relaxerquit working so he put me on
(09:46):
another one and it's worked good, I mean.
But still during all this time Istill do the tensing up every
so often.
I mean it's, it can happenduring the day, it can happen at
night, it can happen in themorning.
Uh, it seems to happen more inthe afternoon or evening times,
(10:08):
uh, but I I have had times whenit starts like at three o'clock
in the afternoon and it lastsall night long.
Well, matter of fact, many ofthose times when that starts is
are the times when I'm up like32 to 36 hours straight.
You know, because you, youcan't get no rest when, when
your body's tense enough, yeah,but as far as advice to others,
(10:32):
I don't know, mention it to yourdoctor if it's something new.
There's so many things that goon with me now that we don't
even bother going to the doctorabout because there's nothing
that they can do about it.
We've learned over time, but Iwould tell people to you know if
(10:53):
it's something new, get hold ofyour doctor and let them be the
judge yeah, so what?
Speaker 1 (11:00):
what do you do to keep yourself self-motivated and
seen when you're on a downwardswing?
Are you listening to music justto try to get through those
tense times?
Speaker 2 (11:12):
Well, I listen to music.
I used to listen to music allthe time to get me through it,
but now I watch videos andlisten to them.
Linda got me a new set ofheadphones that is Bluetooth, so
I can watch my videos whileshe's watching TV and it doesn't
(11:37):
interfere with her.
Speaker 1 (11:40):
Yeah, that's a good idea.
Well, you are an amazing humanbeing, Curry, and of course
we're recording later in the day, so we won't be long today,
Because I know Jim is kind of ona downward slide right now too.
I know it has to do with a lotof stress going on in our lives
(12:00):
right now, but I just feelhelpless for you guys who have
it.
But doing this podcast allowsme to feel like I'm at least
trying to educate others andhelp others whether caregivers
or those living or seeking adiagnosis know what to ask or do
while dealing with this disease.
(12:22):
So that brings me to the maintopic for this week.
You want to jump in before.
Speaker 2 (12:27):
I say that, yeah, before we go're going, for I
didn't know these interiortrimmers were a thing until I
think it was.
Last week I mentioned it to ourgroup's neurologist and she
told me that yeah, they're.
They're a real thing, and butthey're more on the parkinson's
(12:48):
side of the specter than thelevy body side.
Speaker 1 (12:52):
Yeah so, but I was at least glad to find that they
were real and I wasn't justsomething I was imagining, that
I was feeling yeah, well, I knowjim's uncle who lives I talked
about before, who's in his 80snow, has parkinson's really bad,
and the last time we were ableto go out to eat with him before
COVID, we were sitting eatingdinner and he'll just pop up and
(13:20):
have to move.
He has to walk.
I'm the same way with my backLately.
It's been really bad and it'sthree back fusions.
But moving and walking isbetter than laying on the couch.
If I get it's like three, fourin the morning, I'm getting up
(13:40):
and I have to move because, yeah, so I, I totally I mean I don't
have louis body, but I knowthat frustration where you just
feel like you have to get up andmove yeah, yeah, I have to just
get up and walk, yeah, and thenI'll I go back and try to sit
down and relax again and I can't, and I get up and start walking
(14:01):
again.
Speaker 2 (14:01):
You know, all night long or all day long, whatever
text me in the middle of thenight because chances are I'm
not walking too.
Speaker 1 (14:07):
I actually walked outside.
Um, I just decided in the newplace we are.
I'm not walking too.
I actually walked outside.
I just decided in the new placewe are.
I'm like, oh, I'm going to takeRoxy out back, and it was, I
don't know.
It was like 1.30 in the morning.
We're kind of close to otherpeople and somebody was coming
home and they scared the bejesusout of me.
I was like, and they werereally nice, like hey, how are
you I really nice?
(14:31):
Like hey, how are you?
Speaker 2 (14:32):
I'm like oh, my god, you scared me.
Speaker 1 (14:33):
I'm like, hey, good morning, night morning, right,
anyway.
So what we wanted to talk abouttoday?
Um, we, we pretty much askeverybody that comes on as a
guest to share about their thediagnosis step.
The diagnosis and it's it'salways a big topic of discussion
, especially when somebody newfinds one of the Facebook, the
Lewy Body Facebook pages.
(14:53):
So we just wanted to share withyou all some of the
conversations and the thingsthat people were talking about,
or mainly about the misdiagnosisexperiences, because I think we
can learn.
Those of you looking for adiagnosis can learn from those.
(15:14):
So we're hoping that you cantake notes and we just felt we'd
share some of the things peoplehave encountered while trying
to seek a diagnosis.
And we're hoping you can takenotes when you go to the doctor
because, sadly oh okay, sorry,my screen blinked Sadly, as we
(15:35):
have shared many, many, manytimes that there are a lot of
doctors not aware of thisdisease and, especially since it
affects each person differently, it's even harder to diagnose.
So we wanted to share with yousome of our listeners and those
in our support groups' stories,their stories, so you can arm
yourself when you head to thedoctor.
Speaker 2 (15:58):
Yeah, and if you're given a diagnosis of something
and after you do your researchon it, it just doesn't sit well
with you or doesn't seem to fityour symptoms or is clearly an
insult, like saying you're analcoholic, like I was told when
I didn't even drink.
Y'all need to be that squeakywheel and not worry about
(16:18):
hurting anyone's feelings andget a second or third or fourth
opinion if needed.
So let us share experiencesothers have had seeking a
diagnosis.
Speaker 1 (16:27):
Yeah, I think we were taught when we were younger to
respect our elders and I thinkwe have that about doctors, so
we don't want to second guessthem, but with this disease it
needs to be done.
So hopefully you can take notesor listen back and write down
(16:49):
the things that you can relateto that you see in yourself or
your loved one and be preparedwhen you go to the doctor.
And because we had a gal,marsha, who was in our group and
she listened and wrote down allthe symptoms and just by
attending the support groupseverybody helped her what to
share with the doctor andliterally I believe she got.
(17:12):
Her husband was diagnosed thatday with Louie because she came
with notes and you know she cameprepared to back it up.
So why don't you jump with thequestion?
Speaker 2 (17:25):
Yeah, this was the question that started a great
discussion and sharing.
I'm curious how many of yourloved ones were misdiagnosed
before getting the actualdiagnosis of Lewy body.
I know that we won't get thetrue diagnosis.
Speaker 1 (17:40):
Yeah, until after.
Speaker 2 (17:41):
Yeah, until later.
Speaker 1 (17:43):
Yeah, well, until they pass.
I think that's what that personwas saying, because we're still
waiting for that test.
That totally confirms it.
So, listen as we share someexperience of many seeking a
diagnosis and please take notesso you can arm yourself when you
go to the doctor.
I can't say that enough.
Speaker 2 (18:04):
Here are some of the experiences people have had and
or misdiagnosis they received.
One of them was misdiagnosedwith narcolepsy initially.
Testing proved otherwise.
Another was misdiagnosed asanxiety and depression and told
to see a psychiatristimmediately to 2001,.
(18:29):
Little known about Louie,that's right.
And until 2001, very little wasknown about Louie Boddy and
then first thought it wasrelated to atypical Parkinson's.
He did not have all thesymptoms.
14 years misdiagnosis, she saysthat's a lot.
Speaker 1 (18:48):
That's a long time?
Speaker 2 (18:49):
Yeah, it is.
Speaker 1 (18:50):
And you will read and hear that Louie Bod body
dementia is the mostmisdiagnosed dementia because it
looks like several otherdisease and doctors aren't as
educated on it.
I believe they are gettingthere.
I have to believe that thosegoing through the training right
now will get better at it.
Typically it takes 18 monthsand three doctors.
(19:12):
That's the average we've beenhearing just from talking to
everybody.
So I feel that if you or yourloved one is given a diagnosis
of mild cognitive impairment, donot just accept that.
I think everybody was giventhat in the beginning mostly
everybody, because Jim was giventhat.
Ask for a second or even thirdopinion from providers in a
(19:33):
different healthcare system ifyou have to.
We try to preach that there aremeds that can help the symptoms
.
You know can't cure it or Idon't know, maybe they slow them
down, but there are medicinesthat will help the symptoms.
So the sooner you get diagnosedthey slow them down, but there
are medicines that will help thesymptoms.
So the sooner you get diagnosed, the sooner you get the
(19:54):
medicines and the better lifeyou'll have.
So here are some moreexperiences.
Others had trying to get adiagnosis.
They were told it's justParkinson's or maybe Alzheimer's
.
But funny, they also havephysical symptoms.
I also say say do your researchand be assertive so that
someone just saying it's justparkinson's or maybe alzheimer's
(20:16):
that's run away from thatdoctor.
And then someone said back in2001 my husband was diagnosed
with bipolar depression as othersigns developed and many
neurologic, neurologicneurologists got involved.
They said it was atypicalParkinson's because it didn't
have all the symptoms ofParkinson's, only a change in
(20:37):
gait.
We went to the doctor afterspecialists declined them, I
guess for years and years, moreand more tests always blamed
depression, 14 years ofmisdiagnosis only to be told
near the end that it's probablyLBD.
She wrote difficult,frustrating journey to the end.
(21:05):
I can't even imagine.
That's why we said be thatsqueaky wheel and don't worry
about hurting anybody's feelings.
Once a dad was diagnosed asvascular and we didn't get a
correct one until a year and ahalf before he passed.
Every time he hadhallucinations the hospital
doctors kept saying must be amix of two or more meds reacting
(21:27):
.
Don't you want to just strangleanybody who says that to people
.
Speaker 2 (21:36):
Yeah, we hear all of you when you get told a
diagnosis that you know is wrong.
In my case, one hospital I wentto told me that they diagnosed
me with COPD strictly on thefact that I was a smoker.
They didn't address myhallucinations or anything that
(21:59):
I was having and that's what Iwent to the hospital for.
But they diagnosed me with COPD.
My wife and I came home andresearched COPD and I had none
(22:20):
of the symptoms the majorsymptoms and that eventually was
proven false when I went to apulmonologist and he tested me
for COPD and a bunch of otherthings.
Amazingly, I've smoked nowsince I was 14 and my lungs are
in great shape, as is my heart.
Another one after that, becauseof my hallucinations, said I
(22:46):
was an alcoholic and alcohol wasa problem and at that time I
hadn't drank in like 30 years.
You know, hadn't even had adrink.
So you know, they just assumedthat I was lying about not
drinking and assumed I was goingthrough DTs or withdrawal.
(23:07):
But here are a few moreexperiences those seeking a
diagnosis have had.
This one says two neurologistsmisdiagnosed my dad with
Alzheimer's and the secondargued with me when I suspected
Lewy body dementia.
She said he didn't walk like aLewy body patient, he had every
symptom.
Surprisingly, a thirdneurologist at the VA hospital
(23:30):
ordered him some testing,including a DAT scan, and was
able to clearly diagnose Lewybody dementia.
The second neurologist seemedsurprised but wouldn't admit she
was wrong when I confronted her.
We still had problems.
When he went into a nursingfacility their doctor was
convinced he had schizophreniadespite the diagnosis, so we had
(23:53):
to pull him out.
We hear all the time doctorswant to treat.
Yeah, go ahead.
Speaker 1 (23:59):
Sorry, before you do that, I thank goodness for that
person who had a caregiver thatdid that, because it sounds like
she was strong and she was notgoing to.
She did her research.
Yeah, that's why I just wantedto jump in.
Speaker 2 (24:12):
Yeah, and it's very rare for someone to develop
schizophrenia this late at anadvanced age.
Speaker 1 (24:21):
Now again, we are not giving medical advice, nor are
we.
Well, one of us is a doctor,but not a medical doctor.
We just play one on the podcast.
No, but it's yeah, and that's alot of people.
That's one of the things wehear a lot about.
If they think they have,they're having a psychotic
(24:42):
breakdown or something with thehallucinations.
So yeah, sorry, I didn't meanto interrupt you, but I just
wanted to say kudos, I thoughtit was my internet.
Speaker 2 (24:51):
No, you're good, I thought it was my internet.
Speaker 1 (24:53):
No, you're good.
Speaker 2 (24:54):
I thought it was my internet connection, but it's
yours.
You're freezing up.
Speaker 1 (24:59):
Oh, okay, yeah, All right, thanks for telling me.
Speaker 2 (25:03):
You've done it several times, all right.
Speaker 1 (25:05):
Hopefully I'm not making a face when, I freeze.
Speaker 2 (25:10):
You are kind of like that commercial on TV when she's
looking at her sister's baby.
Speaker 1 (25:14):
Yeah, all right.
I'll try to not make faces.
Speaker 2 (25:18):
We hear all the time doctors want to treat bluey body
people with the psychotic medsthat could make things much
worse.
So it's up to all of us toeducate the medical
professionals about this disease.
Share what you know about Louiewith every medical person you
encounter, even if it is yourown doctor or nurse and you care
for a loved one with Louie.
(25:39):
We need to become our ownadvocates and advocates for
others.
Speak up and share as much asyou can with as many people as
you encounter about this disease.
Speaker 1 (25:49):
Yeah, I agree, people as you encounter about this
disease, yeah, I agree.
And before I share the finalexperiences that we heard, um, I
know, when I took jim to his uh, art doctor because he was
having those palpitations orextra beats or something I I
took two booklets of for louisbody and on the way out he's, he
(26:11):
didn't look at him.
He sat him on his desk and thenon the way out he didn't look
at them.
He sat them on his desk andthen on the way out he said, oh,
do you want these?
And I'm like no, I just wantedto be like no, I tried to be
calm, I said no, that's for youto educate yourself more on
Jim's disease.
But the fact that he wanted togive them back to me spoke
volumes.
Yeah, yeah, it just made me mad.
(26:33):
But anyway, here are a fewfinal experiences to share.
Someone said not sure you wouldcall it misdiagnosed.
In her father's case, thedoctors thought he had dementia,
but we are trying to deal withall these other aspects as not
part of dementia.
It took years before the doctortied it all to Louie and
(26:55):
someone said yes, my husband wasdiagnosed and told it was mild
cognitive impairment, as therewas nothing mild about it.
I pushed for more tests andtook another three years I think
that's kind of the timeline.
Jim was diagnosed with mildcognitive impairment.
Three years later it changed.
So my loved one was diagnosedwith Parkinson's by his
(27:15):
cardiologist.
So there's a cardiologist thatI don't like.
The doctor I find the doctorsjust.
They have those blinders on,they're just I'm here to treat
your heart, I only want to talkabout your heart and then that's
yeah, that's got to change.
So our PCP was clueless as wespent several years trying to
(27:39):
figure out what was going on.
And then so I movement disorderspecialist in Gainesville
months later that was diagnosed.
I've heard that a lot they gaveher like for you, like your
primary care physician ormovement specialists seem to be
able to pick up Louie better andParkinson's.
Someone said Parkinson's firstLouie body, second Louie body,
dementia with Parkinson's last.
(28:01):
The second doctor was the best,but the office staff and
location was horrible.
Yeah, I don't know, I guessit's.
Yeah, you can deal with that ifyou have somebody that actually
understands the disease.
And then the final one I haveis someone said they've been
fighting for three or four years, telling them that in 10 years
(28:22):
his Parkinson's has notprogressed, but his cognition
was getting worse.
The nerves and in this case thePCPs would just blow it off.
And then he had multiple carmishaps and finally, when he
accidentally fired his gun intoour bed, they started listening,
so wow.
Speaker 2 (28:42):
Yeah, exactly.
Speaker 1 (28:44):
Yeah, wow.
So please share.
Even share the podcast withdoctors.
You know that they could listento this one and just hear these
stories.
Speaker 2 (28:56):
Yeah, and here's an experience that sums up why we
felt strong about sharing all ofthis today.
This person starts out.
Mine was diagnosed withdepression in 2016.
A few years later, and manymore symptoms, I asked for a
second opinion within the samegroup.
They denied it, so off we wentto another neurologist who sent
(29:18):
us for neuropsychologicaltesting.
Told us alcohol induceddementia.
Stopped drinking alcohol butsymptoms kept getting worse,
worse fast, so took him in againand gave a letter to the nurse
to give to the doctor to reviewbefore he saw us.
Doc came in and said, based oneverything I documented in the
(29:40):
letter, he was suspicious thatit was Lewy body dementia.
Results came back strongly infavor of Lewy body dementia.
Speaker 1 (29:47):
Yep, just like our friend Marsha, like do your
research, write it down, get itto the doctor.
That seems to help.
Yes, you may have to do eitheryou, the person trying to get
the diagnosis, or the loved one.
You may have to do more legworkthan the doctors, but getting
(30:07):
that quicker diagnosis andgetting the proper meds really
makes a difference.
And I guess I lied because Ihave one final more to read.
My loved one was diagnosedaccurately about.
Oh yeah, I said that I wassurprised to read this one, but
I was also hopeful.
That's why I wanted to sharethis last one.
(30:27):
So I was surprised and hopefulfor this one.
So my loved one was diagnosedaccurately about four years
before he died.
Up to that point he had threemisdiagnoses.
I don't know if that's a rightword.
I'm just reading what someonewrote.
In an effort to help advance theunderstanding of LBD, my loved
(30:48):
one agreed to have hisneurologist use the data she
collected on him, along withmany other patients, for a
comprehensive research study.
So kudos to that doctor Becausehe was diagnosed while he was
alive.
The cause of death on hiscertificate is LBD, which that's
the first time I've heard thatthat that happened.
(31:10):
It's rare to have this on adeath certificate.
It seems like a small thing topeople outside of the LBD
community but helps to bringhome the understanding that LBD
is not curable at this time.
So you know he did get adiagnosis and you know that
whole story.
I wanted to end with that withme is because it did give me
(31:33):
hope that you know.
Speaker 2 (31:35):
Sadly Robin Williams died, but I think more awareness
is being brought to everyone,many spouses, after a loved one
has passed, and it's veryimportant for them to get the
(31:59):
death certificate to read thatone of the causes of death was
Lewy body dementia.
Without that, lewy bodydementia does not get research
funds.
So it's very important to fightthat, and we're I know a lady
who's going through it right nowmatter of fact and uh, but it's
(32:19):
, it's.
It's really important to getthat put on as a contributing
factor to death.
Uh, because where else are theygoing to get numbers of how
many people are killed each yearwith Lewy body dementia?
Speaker 1 (32:35):
That's a good point.
Speaker 2 (32:37):
We hope sharing these experiences will help those
seeking a diagnosis know they'renot alone and that there is
help out there.
Like Linda podcast Linda said,you or your loved one just may
have to do most of the legworkbut, as I always say, there are
meds to treat the symptoms.
Yes, you will have ups anddowns, like I am experiencing
(32:58):
now, but there's still a lot ofgood life left after diagnosis.
And well, I had a thought.
Yeah, I always tell people youknow a lot of people are scared.
I don't want my loved onetaking meds because of the side
effects.
Well, you have to weigh therisk against the benefits.
(33:22):
You know, if they're havinghallucinations that are scaring
them, or delusions that arewhere they're accusing you of
cheating on them or stealingstuff, it's a lot better because
really, the risk of sideeffects is pretty slim most of
the time.
Speaker 1 (33:42):
Yeah.
Speaker 2 (33:43):
So it's, I feel me personally, I would rather risk
not getting the side effects andgetting the benefits out of the
meds.
Speaker 1 (33:55):
Yeah, yeah, and I'm just telling you, if you read
any of the little flyers insideof your medicine, you know that
come with your medicines.
You pick up any medicine.
It's I just you'd be scared tonever take medicine.
Speaker 2 (34:09):
Yeah, and so many people are because of that, and
it's, you know, come on,medicine's good.
Speaker 1 (34:16):
Yeah, and the thing is you may try like we've talked
about it before you may try onemedicine that doesn't help you
or your loved one, and thatdoesn't mean there's not another
one that you can try, becauseLord knows I've.
You know, jim has been onseveral different ones to you
know, because it's such a uniquedisease that no two people are
(34:39):
like with this disease.
Again, we're not giving medicaladvice, we're just giving our
experiences, and for Curry it'sclearly one, from what you just
said, that you'd rather take themedicines than have those
hallucinations, and yourmedicine really helped put your
hallucinations to bed prettymuch.
Speaker 2 (35:00):
It did.
Speaker 1 (35:03):
Alright.
Well, that's my two cents.
Just remember, just be your ownadvocate and come prepared with
notes with the doctor.
That's really going to help.
Speaker 2 (35:17):
Keep a journal.
That's the most important thing.
Yeah, okay, folks, that's allwe have time for this week,
remember?
You can email us withsuggestions on what you would
like us to discuss on a futureepisode, or you can ask any
questions you have, and we willsure do our best to help get you
the best answer possible.
Speaker 1 (35:35):
Yep, and always remember that we post the link
to the.
We try, I'm going to put, try,I'm going to change that right
now.
We try to post the link to thepodcast in both the Lewy Body
Roller Coaster Podcast Facebookpage and on Curry's Our Journey
with Lewy Body pages.
And if you're interested inhelping as a volunteer or an
advocate, please send us anemail at louiebodyrollercoaster
(36:00):
at gmailcom, because the morepeople who reach out, the more
people we can help.
Speaker 2 (36:03):
And if you want to learn how you can be a supporter
of the podcast, please see theepisode notes and post that
information on there.
Okay, folks, thanks again forjoining us.
Speaker 1 (36:14):
Until next week.
Speaker 2 (36:15):
this is Linda and Curry signing off.
Hello and welcome to our podcast about living on the
Lewy Body Roller Coaster apodcast for Lewy Body Dementia
patients and their families.
Presented by Lewy Body patientsand their families.
Speaker 2 (00:13):
You will hear firsthand the ups and downs and
twists and turns of Lewy BodyDementia From families directly
affected.
We'll share our support andexperiences on all things Lewy
Body.
Speaker 1 (00:25):
We're your hosts, Linda and Curry.
I have a loved one with LewyBody Dementia.
Speaker 2 (00:30):
And I am living with Lewy Body Dementia.
Speaker 1 (00:33):
Let's get started.
Welcome back podcast family.
Speaker 2 (00:43):
Yes, welcome back y'all.
Speaker 1 (00:45):
As always, we want to thank you all for supporting us
.
We always provide the links inthe episode notes below the
episode notes, if you want tolearn more about becoming a
supporter.
Speaker 2 (00:57):
And, as always, we want to send out a special shout
out to a few of our longestsupporters.
We want to send out a specialshout out to a few of our
longest supporters.
I want to start with Matthewand Miriam, Jay McLean, Tom
Conley, Cindy Marcia Treffman,Phyllis Banks, Nancy Guerrero,
Darling Passmore, Armstrong,Ginger Gilmore, Sheila Fury,
(01:22):
Chris Oaks, Elisa Mahoney, RitaMcCord and, our newest supporter
, Cherry Lawrence.
It is because all of y'all andall the others, we will continue
to give shout outs every weekso that we can keep sharing
experiences and information thatcan help each other.
So thank you again and rememberthat if you have Lewy body
dementia and you would like tobe a guest on our show and talk
(01:46):
about your journey, or if you'rea caregiver or an advocate for
someone living with Lewy, pleasecontact myself or Linda Zipula
through messenger or email atlewybodyrollercoaster at
gmailcom.
Speaker 1 (01:58):
I really like how you say my last name.
I like how you put them.
You say it all the letterstogether, and I like that you
put them.
You say it all the letterstogether, and I like that.
Speaker 2 (02:06):
Not a lot of people do that.
Speaker 1 (02:07):
You are Like I said, that's the American version.
Apparently, it's Sipuła inPolish, so anybody from Poland?
We found that out when we wentthere.
They were like oh, sipuła.
I'm like no, it's Sipuła, andthey're like like no.
So we learned um, but anyway,um, and I just realized again
(02:28):
where we decided to record,right when everybody starts
coming home on your end that'swhy you always.
The internet's always wonky foryou guys, yeah our internet is
really bad yeah, around threeish your time, but anyway, um,
as we've shared many times,please consider joining us in
one of our support meetupsthrough Zoom.
(02:49):
We do one on Mondays andFridays, 11.30 Eastern For
anybody with Louie or caregivers.
One on Saturday at 3 pm Easternis for spouses only, and then
Kari does one for just thosewith Louie body on Thursdays at
4 30 eastern.
The links are the same for allof them, posted on their
(03:13):
announcement curry.
Has facebook changed theannouncements, because I always
go to the announcements to clickon zoom because I don't have it
memorized and it looked likethe announcements were.
We have to check that.
Speaker 2 (03:25):
Yeah, I'll check it, I don't know.
Speaker 1 (03:26):
Maybe zoom did a.
You know how they do that.
Uh, yeah, updating stuff, butanyway.
So the links are the same forall the groups.
Uh, we hope everyone listeningwill consider joining us each
week.
And before we bring on, well,we don't have a guest today.
Today it's just me and Curry.
Sorry about that.
Those of you that have beenattending support group know
(03:48):
that I'm in the middle of a biglife change right now.
Hopefully I'm not in an echochamber I feel like I am where I
am now because I don't havecarpet, but we want to share.
I'm trying to put this in ournotes each week to remind people
that I am podcast Linda, andCurry's wife is also named Linda
(04:11):
, so for those of you listening,I'm his little sister.
Speaker 2 (04:18):
Exactly.
Speaker 1 (04:21):
Yeah, just so you know, Because there's people
that are still posting about youknow.
I guess they don't because wedon't say it all the time.
I guess they just realize thatI'm your better half, which is
fine, you know.
But I don't want to takeanything away from the real.
Speaker 2 (04:37):
Curry's.
Linda, yeah, so yeah, everyonegets confused.
Uh, when I post something withthe name Linda in it, I may be
talking about my wife, but theythink I'm talking about you.
Speaker 1 (04:51):
Yeah.
Speaker 2 (04:51):
And then many times they'll say oh, you and Linda,
you and your wife Linda do sucha good job on the podcast.
They don't realize you're notmy wife.
Speaker 1 (05:00):
No, but she does do a nice job behind the scenes.
Look how nice your hair looks,even though nobody else can see
it.
Because I know when we tapedlast week with Naomi from
Ireland, curry took off his hatand we were like, whoa, you need
a haircut, buddy.
(05:22):
We weren't used to seeing youwithout a hat.
But anyway, let's get going.
I just wanted there's only acouple things I wanted to talk
about this week.
Um, and one I'm gonna put youon the spot a little bit.
Curry is because I know you youtold me you've been having like
four out of five weeks.
It's been rough for you.
So can you, can you share withus how you are when this happens
(05:47):
?
And because you said ithappened before and yeah, yeah,
talk about that for others yeah,part of it.
Speaker 2 (05:57):
Uh, the biggest thing is I've always, from day one, I
go through periods of uh I calltensing up, where I can be in
my recliner, trying to get somerest or something, and my whole
body I mean every joint I gotand every muscle I have just
tenses up and it hurts and Ihave to get up and walk around,
(06:20):
go out back, go out front, smokea cigarette, come back and try
to do it again, and still can't.
And a lot of times, most timeswhen that happens, it lasts for
about six hours.
So I've had that going on.
And then also I startedsomething new four weeks ago and
(06:46):
that's interior tremors.
I've never had those, as I canremember, and it's not, it's not
anxiety and it's not like it'snot like a coffee I've been
(07:07):
making coffee or anything likeit.
It's a lot worse than eitherone of those.
It just feels like my fingers,my wrist, my arms, everything's
wanting to jump out of my skin.
Real bad.
And then it went nonstop thefirst two weeks.
I mean just stayed with me 24hours a day for those first two
(07:33):
weeks and I mean it goes all theway down to my feet.
Every part of my body feelslike it's just shaking inside
real bad and it went solid for24 for two weeks and that's why
(07:53):
you were so tired, right?
yeah, oh, yeah it just wears meout and it wears me out and the
fatigue, it just exasperates thefatigue and also my shortness
of breath gets real bad duringthose, and so it slacked off the
(08:14):
third week and then it cameback on last week.
Speaker 1 (08:21):
How is it now?
How is it today?
Speaker 2 (08:24):
They came back this morning.
They had left Saturday orSunday and came back today.
Speaker 1 (08:33):
And so you nothing changed, like you didn't have
extra stress or anything, or no,nothing, nothing changed.
Speaker 2 (08:43):
No same medication.
Everything you know, samechanged.
No same medication.
Speaker 1 (08:45):
Everything you know, same, same old, same old yeah,
so it's just yeah, when you'regoing through this, what advice
would you give others?
When they hit that louis low,because you know you, you said
you, you've been through thisbefore and then you, you came
out of it, so what advice wouldyou give others?
Speaker 2 (09:05):
Well, you know, I don't know, I just kind of ride
it out.
Linda rides it out.
She talks about it quite a bitwhen it's going on with me.
But you know, the first time ithappened to me, or one of the
(09:26):
first times no, it's not thefirst time my doctor put me on a
muscle relaxer when it firststarted five years ago, and that
worked good for about three,three and a half years and then
apparently that muscle relaxerquit working so he put me on
(09:46):
another one and it's worked good, I mean.
But still during all this time Istill do the tensing up every
so often.
I mean it's, it can happenduring the day, it can happen at
night, it can happen in themorning.
Uh, it seems to happen more inthe afternoon or evening times,
(10:08):
uh, but I I have had times whenit starts like at three o'clock
in the afternoon and it lastsall night long.
Well, matter of fact, many ofthose times when that starts is
are the times when I'm up like32 to 36 hours straight.
You know, because you, youcan't get no rest when, when
your body's tense enough, yeah,but as far as advice to others,
(10:32):
I don't know, mention it to yourdoctor if it's something new.
There's so many things that goon with me now that we don't
even bother going to the doctorabout because there's nothing
that they can do about it.
We've learned over time, but Iwould tell people to you know if
(10:53):
it's something new, get hold ofyour doctor and let them be the
judge yeah, so what?
Speaker 1 (11:00):
what do you do to keep yourself self-motivated and
seen when you're on a downwardswing?
Are you listening to music justto try to get through those
tense times?
Speaker 2 (11:12):
Well, I listen to music.
I used to listen to music allthe time to get me through it,
but now I watch videos andlisten to them.
Linda got me a new set ofheadphones that is Bluetooth, so
I can watch my videos whileshe's watching TV and it doesn't
(11:37):
interfere with her.
Speaker 1 (11:40):
Yeah, that's a good idea.
Well, you are an amazing humanbeing, Curry, and of course
we're recording later in the day, so we won't be long today,
Because I know Jim is kind of ona downward slide right now too.
I know it has to do with a lotof stress going on in our lives
(12:00):
right now, but I just feelhelpless for you guys who have
it.
But doing this podcast allowsme to feel like I'm at least
trying to educate others andhelp others whether caregivers
or those living or seeking adiagnosis know what to ask or do
while dealing with this disease.
(12:22):
So that brings me to the maintopic for this week.
You want to jump in before.
Speaker 2 (12:27):
I say that, yeah, before we go're going, for I
didn't know these interiortrimmers were a thing until I
think it was.
Last week I mentioned it to ourgroup's neurologist and she
told me that yeah, they're.
They're a real thing, and butthey're more on the parkinson's
(12:48):
side of the specter than thelevy body side.
Speaker 1 (12:52):
Yeah so, but I was at least glad to find that they
were real and I wasn't justsomething I was imagining, that
I was feeling yeah, well, I knowjim's uncle who lives I talked
about before, who's in his 80snow, has parkinson's really bad,
and the last time we were ableto go out to eat with him before
COVID, we were sitting eatingdinner and he'll just pop up and
(13:20):
have to move.
He has to walk.
I'm the same way with my backLately.
It's been really bad and it'sthree back fusions.
But moving and walking isbetter than laying on the couch.
If I get it's like three, fourin the morning, I'm getting up
(13:40):
and I have to move because, yeah, so I, I totally I mean I don't
have louis body, but I knowthat frustration where you just
feel like you have to get up andmove yeah, yeah, I have to just
get up and walk, yeah, and thenI'll I go back and try to sit
down and relax again and I can't, and I get up and start walking
(14:01):
again.
Speaker 2 (14:01):
You know, all night long or all day long, whatever
text me in the middle of thenight because chances are I'm
not walking too.
Speaker 1 (14:07):
I actually walked outside.
Um, I just decided in the newplace we are.
I'm not walking too.
I actually walked outside.
I just decided in the new placewe are.
I'm like, oh, I'm going to takeRoxy out back, and it was, I
don't know.
It was like 1.30 in the morning.
We're kind of close to otherpeople and somebody was coming
home and they scared the bejesusout of me.
I was like, and they werereally nice, like hey, how are
you I really nice?
(14:31):
Like hey, how are you?
Speaker 2 (14:32):
I'm like oh, my god, you scared me.
Speaker 1 (14:33):
I'm like, hey, good morning, night morning, right,
anyway.
So what we wanted to talk abouttoday?
Um, we, we pretty much askeverybody that comes on as a
guest to share about their thediagnosis step.
The diagnosis and it's it'salways a big topic of discussion
, especially when somebody newfinds one of the Facebook, the
Lewy Body Facebook pages.
(14:53):
So we just wanted to share withyou all some of the
conversations and the thingsthat people were talking about,
or mainly about the misdiagnosisexperiences, because I think we
can learn.
Those of you looking for adiagnosis can learn from those.
(15:14):
So we're hoping that you cantake notes and we just felt we'd
share some of the things peoplehave encountered while trying
to seek a diagnosis.
And we're hoping you can takenotes when you go to the doctor
because, sadly oh okay, sorry,my screen blinked Sadly, as we
(15:35):
have shared many, many, manytimes that there are a lot of
doctors not aware of thisdisease and, especially since it
affects each person differently, it's even harder to diagnose.
So we wanted to share with yousome of our listeners and those
in our support groups' stories,their stories, so you can arm
yourself when you head to thedoctor.
Speaker 2 (15:58):
Yeah, and if you're given a diagnosis of something
and after you do your researchon it, it just doesn't sit well
with you or doesn't seem to fityour symptoms or is clearly an
insult, like saying you're analcoholic, like I was told when
I didn't even drink.
Y'all need to be that squeakywheel and not worry about
(16:18):
hurting anyone's feelings andget a second or third or fourth
opinion if needed.
So let us share experiencesothers have had seeking a
diagnosis.
Speaker 1 (16:27):
Yeah, I think we were taught when we were younger to
respect our elders and I thinkwe have that about doctors, so
we don't want to second guessthem, but with this disease it
needs to be done.
So hopefully you can take notesor listen back and write down
(16:49):
the things that you can relateto that you see in yourself or
your loved one and be preparedwhen you go to the doctor.
And because we had a gal,marsha, who was in our group and
she listened and wrote down allthe symptoms and just by
attending the support groupseverybody helped her what to
share with the doctor andliterally I believe she got.
(17:12):
Her husband was diagnosed thatday with Louie because she came
with notes and you know she cameprepared to back it up.
So why don't you jump with thequestion?
Speaker 2 (17:25):
Yeah, this was the question that started a great
discussion and sharing.
I'm curious how many of yourloved ones were misdiagnosed
before getting the actualdiagnosis of Lewy body.
I know that we won't get thetrue diagnosis.
Speaker 1 (17:40):
Yeah, until after.
Speaker 2 (17:41):
Yeah, until later.
Speaker 1 (17:43):
Yeah, well, until they pass.
I think that's what that personwas saying, because we're still
waiting for that test.
That totally confirms it.
So, listen as we share someexperience of many seeking a
diagnosis and please take notesso you can arm yourself when you
go to the doctor.
I can't say that enough.
Speaker 2 (18:04):
Here are some of the experiences people have had and
or misdiagnosis they received.
One of them was misdiagnosedwith narcolepsy initially.
Testing proved otherwise.
Another was misdiagnosed asanxiety and depression and told
to see a psychiatristimmediately to 2001,.
(18:29):
Little known about Louie,that's right.
And until 2001, very little wasknown about Louie Boddy and
then first thought it wasrelated to atypical Parkinson's.
He did not have all thesymptoms.
14 years misdiagnosis, she saysthat's a lot.
Speaker 1 (18:48):
That's a long time?
Speaker 2 (18:49):
Yeah, it is.
Speaker 1 (18:50):
And you will read and hear that Louie Bod body
dementia is the mostmisdiagnosed dementia because it
looks like several otherdisease and doctors aren't as
educated on it.
I believe they are gettingthere.
I have to believe that thosegoing through the training right
now will get better at it.
Typically it takes 18 monthsand three doctors.
(19:12):
That's the average we've beenhearing just from talking to
everybody.
So I feel that if you or yourloved one is given a diagnosis
of mild cognitive impairment, donot just accept that.
I think everybody was giventhat in the beginning mostly
everybody, because Jim was giventhat.
Ask for a second or even thirdopinion from providers in a
(19:33):
different healthcare system ifyou have to.
We try to preach that there aremeds that can help the symptoms
.
You know can't cure it or Idon't know, maybe they slow them
down, but there are medicinesthat will help the symptoms.
So the sooner you get diagnosedthey slow them down, but there
are medicines that will help thesymptoms.
So the sooner you get diagnosed, the sooner you get the
(19:54):
medicines and the better lifeyou'll have.
So here are some moreexperiences.
Others had trying to get adiagnosis.
They were told it's justParkinson's or maybe Alzheimer's
.
But funny, they also havephysical symptoms.
I also say say do your researchand be assertive so that
someone just saying it's justparkinson's or maybe alzheimer's
(20:16):
that's run away from thatdoctor.
And then someone said back in2001 my husband was diagnosed
with bipolar depression as othersigns developed and many
neurologic, neurologicneurologists got involved.
They said it was atypicalParkinson's because it didn't
have all the symptoms ofParkinson's, only a change in
(20:37):
gait.
We went to the doctor afterspecialists declined them, I
guess for years and years, moreand more tests always blamed
depression, 14 years ofmisdiagnosis only to be told
near the end that it's probablyLBD.
She wrote difficult,frustrating journey to the end.
(21:05):
I can't even imagine.
That's why we said be thatsqueaky wheel and don't worry
about hurting anybody's feelings.
Once a dad was diagnosed asvascular and we didn't get a
correct one until a year and ahalf before he passed.
Every time he hadhallucinations the hospital
doctors kept saying must be amix of two or more meds reacting
(21:27):
.
Don't you want to just strangleanybody who says that to people
.
Speaker 2 (21:36):
Yeah, we hear all of you when you get told a
diagnosis that you know is wrong.
In my case, one hospital I wentto told me that they diagnosed
me with COPD strictly on thefact that I was a smoker.
They didn't address myhallucinations or anything that
(21:59):
I was having and that's what Iwent to the hospital for.
But they diagnosed me with COPD.
My wife and I came home andresearched COPD and I had none
(22:20):
of the symptoms the majorsymptoms and that eventually was
proven false when I went to apulmonologist and he tested me
for COPD and a bunch of otherthings.
Amazingly, I've smoked nowsince I was 14 and my lungs are
in great shape, as is my heart.
Another one after that, becauseof my hallucinations, said I
(22:46):
was an alcoholic and alcohol wasa problem and at that time I
hadn't drank in like 30 years.
You know, hadn't even had adrink.
So you know, they just assumedthat I was lying about not
drinking and assumed I was goingthrough DTs or withdrawal.
(23:07):
But here are a few moreexperiences those seeking a
diagnosis have had.
This one says two neurologistsmisdiagnosed my dad with
Alzheimer's and the secondargued with me when I suspected
Lewy body dementia.
She said he didn't walk like aLewy body patient, he had every
symptom.
Surprisingly, a thirdneurologist at the VA hospital
(23:30):
ordered him some testing,including a DAT scan, and was
able to clearly diagnose Lewybody dementia.
The second neurologist seemedsurprised but wouldn't admit she
was wrong when I confronted her.
We still had problems.
When he went into a nursingfacility their doctor was
convinced he had schizophreniadespite the diagnosis, so we had
(23:53):
to pull him out.
We hear all the time doctorswant to treat.
Yeah, go ahead.
Speaker 1 (23:59):
Sorry, before you do that, I thank goodness for that
person who had a caregiver thatdid that, because it sounds like
she was strong and she was notgoing to.
She did her research.
Yeah, that's why I just wantedto jump in.
Speaker 2 (24:12):
Yeah, and it's very rare for someone to develop
schizophrenia this late at anadvanced age.
Speaker 1 (24:21):
Now again, we are not giving medical advice, nor are
we.
Well, one of us is a doctor,but not a medical doctor.
We just play one on the podcast.
No, but it's yeah, and that's alot of people.
That's one of the things wehear a lot about.
If they think they have,they're having a psychotic
(24:42):
breakdown or something with thehallucinations.
So yeah, sorry, I didn't meanto interrupt you, but I just
wanted to say kudos, I thoughtit was my internet.
Speaker 2 (24:51):
No, you're good, I thought it was my internet.
Speaker 1 (24:53):
No, you're good.
Speaker 2 (24:54):
I thought it was my internet connection, but it's
yours.
You're freezing up.
Speaker 1 (24:59):
Oh, okay, yeah, All right, thanks for telling me.
Speaker 2 (25:03):
You've done it several times, all right.
Speaker 1 (25:05):
Hopefully I'm not making a face when, I freeze.
Speaker 2 (25:10):
You are kind of like that commercial on TV when she's
looking at her sister's baby.
Speaker 1 (25:14):
Yeah, all right.
I'll try to not make faces.
Speaker 2 (25:18):
We hear all the time doctors want to treat bluey body
people with the psychotic medsthat could make things much
worse.
So it's up to all of us toeducate the medical
professionals about this disease.
Share what you know about Louiewith every medical person you
encounter, even if it is yourown doctor or nurse and you care
for a loved one with Louie.
(25:39):
We need to become our ownadvocates and advocates for
others.
Speak up and share as much asyou can with as many people as
you encounter about this disease.
Speaker 1 (25:49):
Yeah, I agree, people as you encounter about this
disease, yeah, I agree.
And before I share the finalexperiences that we heard, um, I
know, when I took jim to his uh, art doctor because he was
having those palpitations orextra beats or something I I
took two booklets of for louisbody and on the way out he's, he
(26:11):
didn't look at him.
He sat him on his desk and thenon the way out he didn't look
at them.
He sat them on his desk andthen on the way out he said, oh,
do you want these?
And I'm like no, I just wantedto be like no, I tried to be
calm, I said no, that's for youto educate yourself more on
Jim's disease.
But the fact that he wanted togive them back to me spoke
volumes.
Yeah, yeah, it just made me mad.
(26:33):
But anyway, here are a fewfinal experiences to share.
Someone said not sure you wouldcall it misdiagnosed.
In her father's case, thedoctors thought he had dementia,
but we are trying to deal withall these other aspects as not
part of dementia.
It took years before the doctortied it all to Louie and
(26:55):
someone said yes, my husband wasdiagnosed and told it was mild
cognitive impairment, as therewas nothing mild about it.
I pushed for more tests andtook another three years I think
that's kind of the timeline.
Jim was diagnosed with mildcognitive impairment.
Three years later it changed.
So my loved one was diagnosedwith Parkinson's by his
(27:15):
cardiologist.
So there's a cardiologist thatI don't like.
The doctor I find the doctorsjust.
They have those blinders on,they're just I'm here to treat
your heart, I only want to talkabout your heart and then that's
yeah, that's got to change.
So our PCP was clueless as wespent several years trying to
(27:39):
figure out what was going on.
And then so I movement disorderspecialist in Gainesville
months later that was diagnosed.
I've heard that a lot they gaveher like for you, like your
primary care physician ormovement specialists seem to be
able to pick up Louie better andParkinson's.
Someone said Parkinson's firstLouie body, second Louie body,
dementia with Parkinson's last.
(28:01):
The second doctor was the best,but the office staff and
location was horrible.
Yeah, I don't know, I guessit's.
Yeah, you can deal with that ifyou have somebody that actually
understands the disease.
And then the final one I haveis someone said they've been
fighting for three or four years, telling them that in 10 years
(28:22):
his Parkinson's has notprogressed, but his cognition
was getting worse.
The nerves and in this case thePCPs would just blow it off.
And then he had multiple carmishaps and finally, when he
accidentally fired his gun intoour bed, they started listening,
so wow.
Speaker 2 (28:42):
Yeah, exactly.
Speaker 1 (28:44):
Yeah, wow.
So please share.
Even share the podcast withdoctors.
You know that they could listento this one and just hear these
stories.
Speaker 2 (28:56):
Yeah, and here's an experience that sums up why we
felt strong about sharing all ofthis today.
This person starts out.
Mine was diagnosed withdepression in 2016.
A few years later, and manymore symptoms, I asked for a
second opinion within the samegroup.
They denied it, so off we wentto another neurologist who sent
(29:18):
us for neuropsychologicaltesting.
Told us alcohol induceddementia.
Stopped drinking alcohol butsymptoms kept getting worse,
worse fast, so took him in againand gave a letter to the nurse
to give to the doctor to reviewbefore he saw us.
Doc came in and said, based oneverything I documented in the
(29:40):
letter, he was suspicious thatit was Lewy body dementia.
Results came back strongly infavor of Lewy body dementia.
Speaker 1 (29:47):
Yep, just like our friend Marsha, like do your
research, write it down, get itto the doctor.
That seems to help.
Yes, you may have to do eitheryou, the person trying to get
the diagnosis, or the loved one.
You may have to do more legworkthan the doctors, but getting
(30:07):
that quicker diagnosis andgetting the proper meds really
makes a difference.
And I guess I lied because Ihave one final more to read.
My loved one was diagnosedaccurately about.
Oh yeah, I said that I wassurprised to read this one, but
I was also hopeful.
That's why I wanted to sharethis last one.
(30:27):
So I was surprised and hopefulfor this one.
So my loved one was diagnosedaccurately about four years
before he died.
Up to that point he had threemisdiagnoses.
I don't know if that's a rightword.
I'm just reading what someonewrote.
In an effort to help advance theunderstanding of LBD, my loved
(30:48):
one agreed to have hisneurologist use the data she
collected on him, along withmany other patients, for a
comprehensive research study.
So kudos to that doctor Becausehe was diagnosed while he was
alive.
The cause of death on hiscertificate is LBD, which that's
the first time I've heard thatthat that happened.
(31:10):
It's rare to have this on adeath certificate.
It seems like a small thing topeople outside of the LBD
community but helps to bringhome the understanding that LBD
is not curable at this time.
So you know he did get adiagnosis and you know that
whole story.
I wanted to end with that withme is because it did give me
(31:33):
hope that you know.
Speaker 2 (31:35):
Sadly Robin Williams died, but I think more awareness
is being brought to everyone,many spouses, after a loved one
has passed, and it's veryimportant for them to get the
(31:59):
death certificate to read thatone of the causes of death was
Lewy body dementia.
Without that, lewy bodydementia does not get research
funds.
So it's very important to fightthat, and we're I know a lady
who's going through it right nowmatter of fact and uh, but it's
(32:19):
, it's.
It's really important to getthat put on as a contributing
factor to death.
Uh, because where else are theygoing to get numbers of how
many people are killed each yearwith Lewy body dementia?
Speaker 1 (32:35):
That's a good point.
Speaker 2 (32:37):
We hope sharing these experiences will help those
seeking a diagnosis know they'renot alone and that there is
help out there.
Like Linda podcast Linda said,you or your loved one just may
have to do most of the legworkbut, as I always say, there are
meds to treat the symptoms.
Yes, you will have ups anddowns, like I am experiencing
(32:58):
now, but there's still a lot ofgood life left after diagnosis.
And well, I had a thought.
Yeah, I always tell people youknow a lot of people are scared.
I don't want my loved onetaking meds because of the side
effects.
Well, you have to weigh therisk against the benefits.
(33:22):
You know, if they're havinghallucinations that are scaring
them, or delusions that arewhere they're accusing you of
cheating on them or stealingstuff, it's a lot better because
really, the risk of sideeffects is pretty slim most of
the time.
Speaker 1 (33:42):
Yeah.
Speaker 2 (33:43):
So it's, I feel me personally, I would rather risk
not getting the side effects andgetting the benefits out of the
meds.
Speaker 1 (33:55):
Yeah, yeah, and I'm just telling you, if you read
any of the little flyers insideof your medicine, you know that
come with your medicines.
You pick up any medicine.
It's I just you'd be scared tonever take medicine.
Speaker 2 (34:09):
Yeah, and so many people are because of that, and
it's, you know, come on,medicine's good.
Speaker 1 (34:16):
Yeah, and the thing is you may try like we've talked
about it before you may try onemedicine that doesn't help you
or your loved one, and thatdoesn't mean there's not another
one that you can try, becauseLord knows I've.
You know, jim has been onseveral different ones to you
know, because it's such a uniquedisease that no two people are
(34:39):
like with this disease.
Again, we're not giving medicaladvice, we're just giving our
experiences, and for Curry it'sclearly one, from what you just
said, that you'd rather take themedicines than have those
hallucinations, and yourmedicine really helped put your
hallucinations to bed prettymuch.
Speaker 2 (35:00):
It did.
Speaker 1 (35:03):
Alright.
Well, that's my two cents.
Just remember, just be your ownadvocate and come prepared with
notes with the doctor.
That's really going to help.
Speaker 2 (35:17):
Keep a journal.
That's the most important thing.
Yeah, okay, folks, that's allwe have time for this week,
remember?
You can email us withsuggestions on what you would
like us to discuss on a futureepisode, or you can ask any
questions you have, and we willsure do our best to help get you
the best answer possible.
Speaker 1 (35:35):
Yep, and always remember that we post the link
to the.
We try, I'm going to put, try,I'm going to change that right
now.
We try to post the link to thepodcast in both the Lewy Body
Roller Coaster Podcast Facebookpage and on Curry's Our Journey
with Lewy Body pages.
And if you're interested inhelping as a volunteer or an
advocate, please send us anemail at louiebodyrollercoaster
(36:00):
at gmailcom, because the morepeople who reach out, the more
people we can help.
Speaker 2 (36:03):
And if you want to learn how you can be a supporter
of the podcast, please see theepisode notes and post that
information on there.
Okay, folks, thanks again forjoining us.
Speaker 1 (36:14):
Until next week.
Speaker 2 (36:15):
this is Linda and Curry signing off.
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