January 28, 2025 • 42 mins
This episode sheds light on navigating life with Lewy Body dementia, focusing on the importance of community support and personal stories. We share experiences about hospice care, the unpredictability of hallucinations, and the joy found in good days.
• The critical role of support networks for Lewy Body individuals
• Insights from hospice care experiences and advocacy need
• Navigating the challenges of hallucinations with humor and resilience
• Celebrating the significance of good days amidst the struggles
• Importance of our supportive Zoom meetings and community connections
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Mark as Played
Transcript
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 y'all.
Speaker 1 (00:16):
Yeah, it's been a minute, huh Curry.
Speaker 2 (00:19):
It has, it sure has.
Speaker 1 (00:22):
It's been a minute to much longer for me to figure
out the buttons again.
Just another quick shout out toeveryone for your continued
support and patience and happy2025.
Speaker 2 (00:36):
Oh yeah, Is this the first one we've done in 2025?
Speaker 1 (00:41):
It is.
Speaker 2 (00:42):
It is, oh, my God.
Speaker 1 (00:43):
Yeah, because we've been posting the, we decided to
post the.
Speaker 2 (00:48):
CND.
Speaker 1 (00:49):
Yeah, the CND Life Science is one, because of
everybody in the group, that'sright, we got a lot of messages.
Yeah, so we just decided to dothat and then jump back in a
couple weeks later.
Speaker 2 (00:59):
Yeah, so thank you all for being so patient and
supportive of us.
Speaker 1 (01:03):
Before we start today's episode, we want to
remind all of our listeners thatit's important for us and for
you and for everybody to sharewith the medical community and
those who are affected by thisdisease, who are affected by
this disease.
So if you're listening for thefirst time and someone in your
(01:26):
family has been diagnosed or youhave been, share the podcast
with your family members andevery medical person you see,
because we've been finding out,there really should be a team of
people, just like when someoneis diagnosed with cancer, they
have that team.
So there really should be ateam of doctors working for LBD
(01:48):
patients.
So even your eye doctor or yourgynecologist, you know it's
good that they know the wholeperson and not just the one area
they're treating.
So please feel free to sharethe podcast name.
They can just Google it withall those people.
Speaker 2 (02:05):
Most definitely Also.
Speaker 1 (02:06):
Also, I want to remind y'all that if you'd like
to be a guest on our show andshare your story in hopes of
helping others, just contactlindsay zapula or myself through
facebook messenger or our email, which is
louisbodyrollercoaster atgmailcom, because we'd love to
have you on the podcast yep, andwe don't always say this
(02:26):
reminder, but remember, if youwant to be a supporter of the
podcast, there's two ways youcan do it patreon, if they're
all in that, under the featureson the facebook pages, you can
do patreon, which is a weekly orone time, or the gofundme link.
Remember, curry and I do notuse any of the funds for
ourselves.
We use it to defray the costsof the editing, the monthly
(02:49):
podcast hosting site, which wentup because we're using AI now,
which is good.
That really helps us as we'redoing this.
Thank you again everyone forsupporting us, those who have
supported us and those who arejust listening for the first
time.
Speaker 2 (03:08):
Yeah, and as a reminder, folks, I just wanted
to point out we're not givingmedical advice, we're just
sharing our open and honestfeelings and thoughts as we live
with Lewy Body Dementia.
Now, what I usually do, folks,is I give a shout out to all of
our supporters and I do thankeach and every one of y'all, but
I've got some here that I wantto give a personal thank you to,
(03:30):
and that's Kristen Moss, lauraJulecki, fred Pounds, lana
Babcock, lori Birdie, craig andAnn Marie and James Hoogie.
Okay, so let's get this andJames Hoogie.
Okay, so let's get this weekendstarted.
Linda.
Speaker 1 (03:49):
Okay, Just like Kari says, when it's just me and him,
we call them our fireside chats.
So since it's the beginning ofthe year and we took the
holidays off which we reallyappreciate everyone allowing us
to do each year I want to leteverybody know how you're
feeling, Curry, you can share alittle.
You're still on hospice, whichthat could be a whole topic.
(04:14):
After our meeting yesterdaythat someone was denied hospice
because they were notincontinent or falling, and you
saw me wanting to jump throughthe screen because Jim was
neither of those and he was onhospice.
Mm-hmm, and you're.
You haven't really fallen sinceyou've been on hospice, right?
Not?
Speaker 2 (04:33):
since I've been on hospice.
I feel I think I've failedtwice since I've been on hospice
.
Speaker 1 (04:38):
Mm-hmm.
Speaker 2 (04:39):
But it's been a long time.
Speaker 1 (04:40):
And don't mind me asking are you incontinent?
Speaker 2 (04:44):
Oh yes.
Speaker 1 (04:45):
Okay.
Speaker 2 (04:46):
Not all the time.
Not all the time, but Iconstantly battle it.
Speaker 1 (04:52):
Yeah, yeah, so it's been.
Yesterday's meeting was prettyfrustrating because we know the
person could really use the help, but oh definitely yeah, it's
those guidelines.
Just, you know, like stickingLewy body in a box, you know you
have to have these checked offto be considered Lewy body, or,
(05:13):
like hospice, you have to be,you know, fallen and cotton, I
don't know.
Speaker 2 (05:19):
I think they need to just keep calling around to
different hospices.
They're in a big enough area.
Speaker 1 (05:23):
Yeah, and it's just very frustrating because hospice
is handled by Medicare.
Medicare is a federal program.
Why is hospice requirementsdifferent in every state?
Speaker 2 (05:38):
Yeah, I don't know.
I know one of the best thingsthat ever happened to me was put
on hospice.
Speaker 1 (05:44):
Right, it's really helped me out.
Yeah, I mean, it's really.
You've come a long way.
So let's back up a little.
I think one of the last timeswe recorded we talked about you
self-medicating and did yourselfin a little bit and wound up in
the hospital.
(06:04):
And now Linda, your wife, iscontrolling all those meds
Definitely, yeah, which hashelped, but I think it was at
the end of December when youstarted having hallucinations
again.
You want to share about that?
Speaker 2 (06:21):
Yeah, my hallucinations started coming
back, not the very, not thescary ones and not the real,
vivid ones, but just the mild,mild hallucinations have started
coming back.
You know, I'd be outside andI'll well.
For one instance, one of ourneighbor's houses I looked at at
(06:43):
night when I had the dogs out.
I saw this great, big oldpicture window in it and they
had the curtains open and Icould see people walking back
and forth inside the house.
And the next day I was out thereand I looked over there and the
house doesn't even have a largepicture window in it, it's just
got a window with the airconditioner unit stuck in it,
(07:04):
you know, and I've seen a guyout back uh, as stupid as this
sounds raking leaves up andsticking, putting them in a golf
cart, you know.
And I walked around thebuilding behind our storage
building where I couldn't seehim, and I walked around the
storage building so I could seehim, and there he was raking
(07:26):
leaves and putting them in agolf cart of all things, you
know, and so I didn't want tospook him, so I walked back
around to where I was in thefirst place and then he was gone
.
Just ones like that, you know,and I still see the little black
blobs running to and back fromthe house.
But at least, like I said,they're mild hallucinations now.
(07:49):
So that's, that's, that's good.
Speaker 1 (07:51):
Are you still having them today?
Speaker 2 (07:53):
Yeah Well, I haven't had one yet today.
No.
Speaker 1 (07:56):
But yesterday I mean it's still yeah.
Speaker 2 (08:00):
I still have them on a regular basis.
Speaker 1 (08:02):
Okay, and when you're having them, do you realize
you're having them?
Speaker 2 (08:10):
For the most part I do Now, like the guy wrecking
the leaves.
He was just real, as ever to me, you know.
But yet once he disappeared Irealized it was a hallucination.
You know, and some of them Irealize they're hallucinations,
(08:33):
but I don't really get it untilI'm out of it, if that makes any
sense no, it does, because yousaid you went out later with the
picture window and you lookedacross and you were like there's
no picture window.
Speaker 1 (08:46):
Wouldn't it be great if they were something?
Something goofy just poppedinto my mind.
I'm trying to figure out how tosay it without it sounding bad.
I don't know if I could do it.
I might have to share itoffline.
Curry, go ahead.
If you were seeing someonebreaking the leaves, that maybe
(09:07):
wasn't a man, like somebodacious babe or something like
that, I don't know.
Say that to your hallucinationnext time, if you know you're
having one be like hey, where'syour wife?
Speaker 2 (09:25):
Probably Anthony.
Speaker 1 (09:27):
I know, yeah, I don't know why stuff like that pops
in my head.
Um, yeah, so you know, you'veyou've been going through all
that and still come into thezoom meetings and you have, oh,
did you hear that ding?
Okay, sorry, somebody just sentme a message on facebook.
Um, so you've been goingthrough all that and hospice has
(09:50):
been coming, which I rememberwhen jim had palliative care
coming, which everyone on louisbody is eligible for, and it
just became overwhelming for himbecause it was like PT, ot, you
know too many people coming.
How are you adjusting to?
(10:12):
I don't think you have thatmany people coming, but how are
you adjusting?
Like, tell us what your hospiceexperience is like in a week.
Speaker 2 (10:19):
Oh well, the uh, the aid that helps me get in and out
of the shower.
She comes on Monday, wednesdaysand Fridays.
The nurse comes on Tuesdays andFridays and then normally the
caseworker.
She comes either Wednesday orThursday, and then the preacher
(10:42):
either comes either Wednesday orThursday.
Wednesday or Thursday, and thenthe preacher either comes
either Wednesday or Thursday.
There's usually one day out ofthe week that we don't have
someone hear from Okay, otherthan that, they're here every
day.
Speaker 1 (10:55):
Well, we know, when Curry comes to his meeting, when
he doesn't have his dinky buttanymore yeah, you just know
you've had a good day with youraide.
Oh yeah, we don't really knoweveryone listening which just
you know.
He sometimes comes late and islike my aide was here and we're
like, oh, she washed his butt.
Yeah, that's just something wemess around with Curry doing so
(11:22):
do you think it's?
Speaker 2 (11:23):
It's been a big help to me and Linda.
Speaker 1 (11:26):
But you don't think it's too much.
Speaker 2 (11:29):
No, I don't.
I've gotten used to them now.
Speaker 1 (11:33):
That's great, that's great.
So how often does the nursecome?
Speaker 2 (11:39):
The nurse comes twice a week and the aide comes three
days a week.
Speaker 1 (11:43):
And you said the chaplain comes once a week and
the aide comes three days a weekand that you said the chaplain
comes once a week.
Speaker 2 (11:48):
The chaplain comes, and then so does the caseworker.
Speaker 1 (11:51):
Okay, how long do they stay and what do they—
About an hour hour and a half.
And what does the chaplain do?
Speaker 2 (11:58):
He just sits down and we just talk like we're
neighbors.
Speaker 1 (12:04):
Oh, that's nice, I'm just curious.
I'm just curious because Iheard that Turn your phone off.
I got you the first one of thenew year.
Speaker 2 (12:15):
I know right.
Speaker 1 (12:18):
You did really good last year.
I remember, of course.
Wait, I want to find my phoneand turn mine off before I get
in trouble.
I was just curious, because Jimnever had that experience.
By the time the chaplain wascoming, it was time to give him
his, you know.
Speaker 2 (12:37):
Yeah.
Speaker 1 (12:38):
Well, chaplains don't give last rites, but you know
to pray for him.
Chaplains don't give last rites, but you know to pray for him,
mm-hmm.
So they don't—we don't talkabout anybody's religion on the
podcast, but—.
Speaker 2 (12:52):
Right.
Speaker 1 (12:53):
So the chaplain doesn't make you feel like he's
there pushing any religion onyou.
He's just kind of there, likeyou said, as like a neighbor, to
sit down and see how you'redoing any religion on you.
Speaker 2 (13:05):
He's just kind of there, like you said, as like a
neighbor, to sit down and seehow you're doing.
Well, on the first time he cameout, he asked me.
He said now, do you want me toread scripture to you, quote
scripture to you, when I come?
And I said no, I really don't.
And he said okay, and he justcomes now and checks in with us
see how we're doing.
We talk about the weather orgrandkids or everything like
(13:26):
that, you know, and then at theend we say a little prayer and
that's it.
Speaker 1 (13:31):
And you can choose.
Now I'm just imagining there'ssome people that you know
wouldn't want to bring thereligion into it, but it sounds
like you can just kind of tellthem what you want to do and
what you don't want to do.
Speaker 2 (13:45):
Oh yeah, you can, you can.
You know, that's what thecaseworker, social worker is for
.
She makes sure thateverything's going okay and she
asks you how everyone's treatingyou and all that good stuff.
Yeah, she's really good.
Speaker 1 (13:58):
So if you are uncomfortable with the religion
and the praying part, you couldjust tell the caseworker listen
you can just come and be anothersupport.
But nope, okay, I mean it'sgreat that that is offered to
you.
Speaker 2 (14:12):
Yeah, it really is.
It's been real good for me.
Speaker 1 (14:15):
Yeah, I'm very happy you're having a positive hospice
experience while you're stillable to have the experience,
because sometimes when we hadthe podcast on which I was
thinking, we probably shouldplay that, the episode we had a
retired hospice nurse on.
Speaker 2 (14:35):
Oh right, Angie Vanjie.
Speaker 1 (14:36):
Yeah, vanjie, we should replay that, because I
think what we're finding is somepeople are just now finding the
podcast, so they kind of startwhere they find us kind of thing
Right.
I don't know.
Speaker 2 (14:51):
I think that would be a good thing to replay it.
Speaker 1 (14:53):
Yeah, and you know we have like 150 episodes, which
is mind-boggling.
Speaker 2 (14:59):
Right.
Speaker 1 (15:00):
You know, for somebody to go all the way back.
I don't even know when that wasfirst or second year.
We should really go, we should.
It should be funny.
We should figure out how we canplay our first episode and we
react to it as we're hearing it.
See how far we came.
Speaker 2 (15:20):
We didn't even have any and then our first three
episodes.
Speaker 1 (15:22):
Yeah, we didn't even have any of it.
And then our first threeepisodes yeah, we didn't even
have video.
Then, I don't know, I had someyoung college kid helping me.
It was yeah, we should do that.
That would be a funny episodeto do and be like what the
heck's going on there?
Speaker 2 (15:36):
I know right.
Speaker 1 (15:39):
Anyway, I'm happy that you're having that great
experience with them and for yousharing about your
hallucinations which you do.
All the time on your page yousay how you're feeling.
I want to say the majority ofthe time you could be struggling
, but in the last couple of daysyou posted something that was
(16:01):
so uplifting to everybody.
You want to share what youposted, oh.
Speaker 2 (16:06):
I watched today, saturday, thursday.
I woke up and wasn't reallywith it that morning, but by
noon, man, I was having a greattime.
I mean a wonderful day.
I felt good, still having mypain.
It's still about a five on ascale of 10, but that's the best
(16:28):
it's going to get.
But I ended up having Thursdaywas the best day I'd had in
probably two or three years.
And then yesterday I woke up,felt the same way, had another
good day, same thing.
Speaker 1 (16:43):
And then today, I wake up and I the same way had
another good day.
Speaker 2 (16:45):
Yeah, same thing, yeah.
And then today I wake up and Ican't stay awake.
Speaker 1 (16:49):
Yeah, because he's like I'm ready to record, I'm up
, I'm like all right.
Speaker 2 (16:53):
Yeah.
Speaker 1 (16:53):
You know we'll record in an hour and then an hour
comes, I'm like hey, yeah, andI'm still asleep and he's sound
asleep.
Speaker 2 (17:00):
I'm still asleep.
Speaker 1 (17:01):
And he's sound asleep .
I'm like yeah, I went soundasleep, Let me go do some chores
.
Speaker 2 (17:05):
Yeah.
Speaker 1 (17:06):
Yeah, but that's great.
That's what and we talked aboutthis in our Zoom yesterday is.
That's what's so crazy aboutthis disease.
You can go and just for thosethat are having these days where
Louie has just got a hold ofyou every now, and then you're
going to get these kind of youknow the days you've had the
(17:27):
last couple of days and we knewyesterday when you came into
Zoom like when you come intoZoom you can tell how you're
feeling.
Like now you're starting tolook a little tired.
I'm just going to let you know,but your body's probably
crashing from having those tworeally great days.
Speaker 2 (17:44):
I mean, they were good days, they really were.
I mean.
Speaker 1 (17:47):
Even your wife said right.
Speaker 2 (17:49):
Yeah, even Linda and the hospice.
See, yesterday the nurse didn'tcome on Friday because she took
the day off.
So the head of the hospice,instead of coming on Friday, she
wanted to come on Thursday, andshe couldn't believe how good I
(18:11):
was doing that day either.
Speaker 1 (18:14):
Yeah, but I don't.
Did you tell her this isn't meevery day.
Speaker 2 (18:19):
Yeah, oh yeah, she knew it Okay.
Speaker 1 (18:22):
Yeah, but hopefully it was a learning experience for
her too, if she's not dealtwith Lewy body patients.
Speaker 2 (18:29):
Well, her dad passed away from Lewy.
Speaker 1 (18:31):
Okay, so she knows, that's good, that's sad I didn't
mean to say that's good, butthat's sad, but it's good that
she is aware of it.
Speaker 2 (18:41):
She's familiar with it, yeah.
Speaker 1 (18:43):
Wow, you really lucked out with getting people
that.
Speaker 2 (18:47):
I really have.
Speaker 1 (18:48):
You know that, know it or that doctor you had.
I had a good doctor in.
Speaker 2 (18:56):
Texas.
When we first got here I gothooked up with a good doctor and
then she left and I had to gofind another good doctor and she
saw me after I fell and was inthe hospital and went to go have
an appointment with her and shesaid someone asked her there.
(19:19):
Linda may have asked her.
Something was said about whatwould we do, what should we do
with him falling all the time?
And she just said hospice.
And that just started the wholething.
Speaker 1 (19:34):
And there's been no word of you're having a fairly
good day, so you're doing toogood to keep hospice.
Speaker 2 (19:45):
Uh-uh.
Speaker 1 (19:47):
No, that's good, Because I'm assuming you're
going to be evaluated like everysix months.
Speaker 2 (19:51):
But yeah, she evaluates me every three months.
Speaker 1 (19:54):
Okay, okay, yeah, and somebody.
That was one of the discussionsI just want to share with
everyone.
If you're listening and youhaven't joined in one of our
Zooms, I really encourage you tojoin in because it really has.
You've quickly become one ofthe Louis family members and,
like we entered Zoom yesterday,like Kurt and I are usually on
(20:16):
first and I, you know, we talkfor a few seconds.
And the way we started.
Yesterday's was me I startletting people in, or you start
letting people in and I'm stillrattling off of why does my
husband have so many flashlightseverywhere?
look, there's like men, men he'slike, and I started asking all
the men like, why do you have somany flashlights?
And I mean I showed curry.
(20:37):
There's eight of them sittingnext to me now and I found three
after that meeting.
I'm like, why do men?
And so you know.
So we come in and we're usuallylaughing about stuff like that.
But then it just became such agreat discussion and that's
usually what you know the firstfew seconds.
If somebody's new, we let themintroduce themselves, or you can
(20:58):
just listen and have yourcamera off if you want to try it
, because I know a lot of peopleare nervous the first time they
get into Zoom.
We don't pressure you to putyour camera on or even to talk
if you don't want to, but soonyou get sucked into the family.
Speaker 2 (21:18):
I tell you one of the and this is so stupid, but it's
true One of the things thatmade me know I was having a good
day.
Normally when I shave, I buythe disposable razors, but
they're three blades, you know,and they last a long time.
(21:39):
But normally when I shave Inormally have five o'clock
shadow by the end of the day.
But I had ordered a new razorto come with 19 blades on it
from Timu.
And I've been afraid to try thembecause, man, they're from
China, they're going to cut melike crazy.
But I went ahead and openedthem up and started using them
(22:01):
Thursday and I still got theclosest shave I've had in a long
time.
I mean, just little things likethat make you feel good.
Speaker 1 (22:09):
Yeah, yeah, that's what the moral of the story is.
That was not a plug for Timu.
Speaker 2 (22:14):
No.
Speaker 1 (22:15):
I haven't.
I don't even know.
I've heard about it.
I don't even know.
Speaker 2 (22:19):
I've heard about it.
Speaker 1 (22:20):
I don't even yeah, Too much other things going on
to worry about what Timo is orisn't doing or what it is.
But I've heard you get cheapstuff.
But that's great though.
But do you normally shaveyourself or does the AIDS?
Speaker 2 (22:33):
I do.
Speaker 1 (22:34):
Do the AIDS?
You do.
Speaker 2 (22:35):
Yeah, I do yeah.
Speaker 1 (22:36):
Yeah, I do, yeah, so go back to our Zoom meeting
yesterday and this whole hospicetopic that we're talking about,
that whole evaluation.
Like somebody said, theyevaluate you I thought it was
six months every three months,as if what you're going to get
(23:00):
better.
You know, like there have beenpeople, we know people have been
on and off hospice, you know,and it's like what's the
criteria that's keeping themthere for you and if you
graduate?
Speaker 2 (23:18):
I don't emulate ambulatory.
I'm not very good at.
Speaker 1 (23:22):
Yeah, yeah for moving around.
Yeah, yeah, yeah.
So you have them, so there's,but you are every now and then
you were falling.
So that was like the big signfor you.
But I forget somebody in thegroup was saying how frustrating
it was that you were evaluatedand they felt like the medical,
(23:47):
you know, whoever the hospicewas at that time and whoever's
evaluating that, like at threemonths, you could be Louie
better, you know.
Speaker 2 (23:56):
Oh yeah.
Speaker 1 (23:56):
And if you are not, like if you stopped falling and
having incontinence issues,would they?
They'll?
Speaker 2 (24:07):
just keep me on.
Speaker 1 (24:08):
They'll keep you on.
But if they like, if a certainperson doesn't fit into the
hospice check boxes, I wouldhope that they would go down to
palliative care, so that you'restill getting some kind of care,
but that's not AIDS.
Palliative care, so that you'restill getting some kind of care
, but that's not AIDS.
Palliative care doesn't haveAIDS, it's more.
Speaker 2 (24:25):
Yeah, they said that I could have chose to go on
in-home health care and it wouldhave been through the same
group of people, the samecompany.
Speaker 1 (24:45):
But since my doctor said hospice instead of home
health care, yeah, wait, butthey do offer home health care
as well.
Where they come to your house.
Speaker 2 (24:52):
Uh-huh.
Speaker 1 (24:53):
Yeah, okay, so that's not part of hospice.
Speaker 2 (24:57):
No.
Speaker 1 (24:57):
Okay, all right.
And what I said right before westarted is or I may have said
it while we were just talkingwhy is hospice different than
every state when, when they'repaid by medicare, which is a
federal program, medicare ormedicaid, I I don't get it.
(25:18):
I mean that's right yeah, Imean, it's hard enough, when you
need something like that, tohave to now go research what you
know, what is covered and notcovered.
Speaker 2 (25:34):
Yeah, and let me back up.
They take care of my painmedication as well.
They're the ones who put me onmorphine and they're the ones
who put me on the fentanyl painpack.
Speaker 1 (25:47):
Yeah, yeah, and that's really helped.
Speaker 2 (25:51):
They had to take me off my.
What it was, what made me fall,was taking Valium?
We think yeah, and so theychanged that part of my meds up.
I still get all my regular meds, my maintenance meds and all
that, but they take care of allmy pain meds now and my anxiety
(26:14):
pills.
Speaker 1 (26:15):
Well, it was your fault for thinking that your
Valium was Skittles.
Speaker 2 (26:19):
I know right.
Speaker 1 (26:21):
Told your wife to put it in that box.
We got you and lock it.
Yeah, yeah, yeah.
Well, at least they found outwhat you know, what that was.
Speaker 2 (26:30):
Yeah.
Speaker 1 (26:34):
And I mean even Amy from Ireland who yesterday, like
everybody, was just so happy toread your post Thursday and how
great you were feeling.
I would have, if I was yourwife, Linda, I would have
whipped out my honey-do list andmade you do some of the things
on the honey-do list.
Did she make you do any?
Speaker 2 (26:55):
No, she didn't.
Speaker 1 (26:57):
I'm going to get all sorry.
I'm going to get all over.
When you guys are having a goodday, whip out that list.
Speaker 2 (27:03):
Yeah.
Speaker 1 (27:05):
Get to fixing something.
Speaker 2 (27:06):
Right, right Fixing.
No, she just let me enjoy them.
Speaker 1 (27:10):
Yeah, well, I was happy that she realized that you
were having a good day too,which I know made her very happy
.
Yeah, you know, because I knowover the holidays you know
people coming and going thatprobably wore you out and people
with everybody out.
Yeah, we've heard that from alot of people, but everybody
(27:33):
seems to be, and I'm talkingabout the people in our support
group now.
Everybody seems to know now andtheir loved ones know there has
to be a separate area that yourloved one with Louie can go
when it gets to be too muchconversation and you got two
little grandbabies now, right orgreat?
Speaker 2 (27:52):
Great grandbabies.
Speaker 1 (27:53):
Dang, you're.
How old are you?
You're old.
Speaker 2 (27:57):
No, no, I'm 65.
Speaker 1 (27:59):
Wow, Great great.
You have great grandbabies.
Speaker 2 (28:05):
Two great grandbabies .
Speaker 1 (28:06):
Wow, that's crazy.
I don't even have one.
Speaker 2 (28:10):
I tell you what this turning 65, it hurt me more than
any other birthday I've everhad.
Speaker 1 (28:17):
Why.
Speaker 2 (28:18):
I don't know, I just never.
I can't believe I made it to 65.
I always.
None of the men in our familyever lived past 65.
Most of them died in their 50s.
Speaker 1 (28:29):
Okay.
Speaker 2 (28:30):
So I was expecting to die, be dead, before I was 53.
You know, and here I am, all ofa sudden, I'm 65.
Speaker 1 (28:40):
So it was a positive birthday, it was a good birthday
, not a.
Speaker 2 (28:46):
Oh yeah, it was a wonderful birthday.
I had a good birthday.
Speaker 1 (28:50):
Yeah, yeah, yeah.
Speaker 2 (28:51):
Grandkids were here.
The grandkids was here.
My daughter and her husband andtheir son was here.
Yeah, it was a wonderful day.
Speaker 1 (29:02):
Yeah, that's good.
I keep seeing the commercialsabout when you're 60 and over
you need to get the shingle shotand all this and I'm like, oh
my God, I'm getting close there.
Speaker 2 (29:12):
I'm dreading it, the 60 number, I'm now going on 70.
Speaker 1 (29:17):
Yeah.
Speaker 2 (29:18):
Wow.
Speaker 1 (29:20):
Technically, if you round up, you are 70.
Yeah, you know, learn that inmath, we'll go with that You're
70.
Yeah, I'm dreading the 60.
I don't know why, and just Ithink when you're in your 50s
you can still lie and say I'mlike 53 and get away with it.
I'm like ugh.
(29:40):
In a few years, when I'm 60,I'm like ugh, but I don't know
why.
There's commercials.
I keep hearing them.
It's like subliminal messages.
It's coming, your 60th birthdayis coming.
Make sure you remember thesethings.
I'm glad that that 65 is a goodbirthday for you.
Speaker 2 (30:00):
Oh yeah, and I'll tell you another thing, knowing
I turned 65, I've beenpost-diagnosed.
I've been eight years since Iwas diagnosed.
I'm going on nine years now.
Speaker 1 (30:18):
Right.
Speaker 2 (30:18):
It'll be nine years this year.
Boy, that's another step yeah.
Yeah.
Speaker 1 (30:26):
Yeah, because you just broke that five to seven
year thing that everybody writesabout Five to seven, or two to
20.
Speaker 2 (30:36):
Yeah.
Speaker 1 (30:38):
Just don't listen to, don't take what you read as far
as the time that you.
Speaker 2 (30:45):
No, don't take that prognosis seriously.
Throw it out the window.
Speaker 1 (30:49):
Yeah, I mean take it seriously that you have
something, but not the timelinethat it's on.
I think it's a mindset, it'sall mindset I do too.
Well, part of it's mindset.
Yeah, you know, because I, Ithink I don't know I I want to
go back to just encouraging, ifyou're a new listener, um monday
(31:12):
and mondays and fridays at 1130 to 1 eastern time, we do, we
do a zoom, I know it.
You didn't hear that ding, butI'm sure.
Sorry, andrew, my son's goingto have to.
Somebody just texted me on thecomputer, not on my phone.
Curry, my phone is off.
Speaker 2 (31:30):
I was getting ready to get on you.
Speaker 1 (31:31):
I know it's just when you go to the Zoom.
You may come in there feelingreally crappy, but you're going
to leave laughing.
Yes, we do talk about someserious stuff and people share
like, hey, I'm having thissymptom.
And yesterday we talked abouthow there was a person in one of
(31:59):
our Facebook groups whosehusband, I think he fell and
they took him to the hospitaland they gave him Haldol right
away and he hasn't been able towake up.
Speaker 2 (32:09):
Yeah.
Speaker 1 (32:10):
And whoever told that story, if you could see the
faces, everybody was like oh myGod.
And then I said I started tobinge watch ER because it was 30
years ago that was on and therewas one part where someone with
dementia came in and I guess,living with someone who had
dementia and being around peoplewith dementia, like I knew
(32:32):
right away the storyline, whatwas going to happen.
This guy has dementia and hewas agitated.
First thing that doctor said isgive him Haldol.
Yeah, and I'm yelling at the tvlike it was 30 years ago.
I'm like, oh my god, the worstthing you can do right,
especially for lewy body people.
Yeah, and you know, I I thinkthat gentleman has other issues
(32:56):
going on that caused him to goto the hospital, but he, he's
still not awake, you know.
So one of the things we reallytalked about I keep going back
to the Zoom meeting, because Ijust thought it was such a
powerful one is have yourdoctors put on your chart that
you are allergic to Haldol.
Yeah, because then they willnot give it to you because you
(33:22):
can't say, yeah, I'm going tosay somebody said you can't just
.
There was somebody, a medicalperson, in the group yesterday
and they said you can't just sayI don't take it because I don't
like the way it feels or Ithink it might affect my memory.
They're going to give it to youif it's not on your chart it
has to say allergic to yeah,it's on all my charts.
Speaker 2 (33:42):
I'm allergic to give it to you.
If it's not on your chart, ithas to say allergic to.
Yeah, it's on all my chartsthat I'm allergic to it.
Speaker 1 (33:47):
It's on the hospital.
Speaker 2 (33:48):
It's a doctor's office.
Yeah, so this is if they alwaysgive me a little red bracelet.
Speaker 1 (33:51):
Yep, if you have Lewy body or you're a caregiver,
listening, call the doctor'soffices and just don't wait
until your next appointmentbecause you could have a
hospital incident between then.
Like, get that put on the chartbecause they don't care if you
say you don't want to take it.
If it's not written as anallergy, they're going to.
Speaker 2 (34:10):
They're going to give it to you.
Speaker 1 (34:11):
Yeah, and you're agitated.
We had somebody on the podcastlast year who was sent to the ER
and then her husband went to gofeed the animals or something,
and then she had a hallucinationand they gave her.
You know, yeah, so it was justa.
That's the kind of stuff thathappens in our meetings, like it
was just so powerful, I mean.
(34:33):
But we're always laughing, um,when we come in and when we
leave, cause it's just, it'sjust become a, it's a family
that you want to be around, ifthat makes sense.
Speaker 2 (34:46):
Yeah, and I want to go ahead.
I want to say something here ina minute as soon as I find it
real quick.
I got to look at it real quick.
Speaker 1 (34:53):
Okay.
Speaker 2 (34:54):
Yeah.
It's going to take me just asecond here.
Speaker 1 (34:59):
Okay, would you like me to sing?
I'm not very good at it, though.
Go for it.
You and everybody else does notwant me to sing.
That's my son.
Speaker 2 (35:09):
I just want to say one thing.
There's a lady in our groupwho's had a really hard time,
and Mary Jo, if you're listening, I'm so glad that you're having
a lot better time now andthings are going to turn around
for you.
You've had a rough few yearsand now everything has turned
around for you, so I'm tickledto death.
Speaker 1 (35:32):
Yeah, and she has Louie right.
Speaker 2 (35:35):
Yes.
Speaker 1 (35:35):
Yeah, it's like.
I think that's why, when wewere recording today, I said I
really want you to share aboutyour two good days, because,
yeah, you're going to have thosecrappy, crappy, crappy days,
but every now and then you havethis bright day.
Come your way.
Speaker 2 (35:54):
Yeah, when your bad days outnumber your good days,
it's one thing, and sometimes itseems like it can go forever.
It seems like mine has.
And then Thursday, like my wifeeven said, she hadn't seen me
feel that good in a long timeand I hadn't felt that good in
two or three years probably.
Speaker 1 (36:16):
Yeah, I mean you do do podcasts, curry.
Yeah, I mean, that's the wholeyou got to.
We said you have to patent ornot patent.
Is it patent?
Speaker 2 (36:31):
Patent, the phrase you know you still have a lot of
good life left.
Speaker 1 (36:37):
Copyrighted.
Copyrighted Still have a lot ofgood life left after diagnosis.
Speaker 2 (36:40):
Yes.
Speaker 1 (36:41):
And you could do a lot of good for the world and
the people behind us.
That's what I think you and Iare doing, so other people don't
have to struggle as much, allright, well, we just wanted to
jump on real quick and reallythank everybody for their
patience, and every now and then, we're going to be uploading an
(37:02):
old episode, since this is likeyear five for us, which is
crazy.
Speaker 2 (37:07):
I know right.
Speaker 1 (37:09):
Technically year four .
Speaker 2 (37:11):
Whoever would have thought that a phone call from
who I thought was a crazy ladywould end up like this?
Speaker 1 (37:18):
And now you're stuck with me forever.
Speaker 2 (37:20):
Yeah, you can't get rid of me of.
He can't get rid of me.
You're like I got a littlesister yep, yep, yeah and yeah
it's.
Speaker 1 (37:28):
You know I like we have I I meet with um several
women who are in our supportgroups before who lost their
husbands, and the other night wewere talking I've just got like
I have five new girlfriendsthat I know I can call and they
(37:50):
understand what I'm goingthrough with the grief.
You know what I mean.
And somebody said the othernight if it wasn't for Lewy Body
, none of us would have met.
So just if it wasn't for COVID,we probably wouldn't be doing
Zoom or a podcast.
Yeah, so you know.
When bad things are happening,you know you can turn them into
(38:16):
a positive.
Speaker 2 (38:17):
Yeah, I'm glad you came up with this idea.
Speaker 1 (38:22):
Some days I'm like what was I thinking?
Like today, when I had tofigure out the buttons again.
I'm like, oh, it's been a whileCurry, I've got to try to hit
the right buttons.
Anyway, we just want to jumpback in.
We do have some people lined upto start new interviews for the
new year, so happy 2025.
(38:42):
Yeah, definitely.
Speaker 2 (38:43):
Y'all check your Facebook Messenger.
Linda's sending out messages tothe people who said that they
wanted to be on the podcast, sowe're trying to get hold of you
now.
It's been a while, but y'allare hung with us, so just check
your Facebook Messenger request.
Yep, but, folks, that's all wehave time for this week hung
with us, so just check your.
Facebook message request.
Folks, that's all we have timefor this week, remember, you can
(39:05):
email us with suggestions onwhat you would like us to
discuss on a future episode, oryou can just ask any questions
you have, and we'll sure do ourbest to help you get the best
answer.
Speaker 1 (39:15):
And always remember that we post the link.
Curry, post the link of thepodcast on both the Louie Body
Roller Coaster podcast Facebookpage and our Journey with Lewy
Body Facebook page and if you'reinterested in helping as an
advocate or a volunteer, pleasesend us an email.
I want to give a shout-out tosome volunteers real quick.
(39:37):
We have Julie who every daypost a positive, inspirational
message.
Um, we had she goes under Eastgarden who volunteers on June.
If she really helped out withuh things for the meetup, julie
(40:00):
also, I think Julie and somebodyelse is helping her to send
people birthday messages whenit's your birthday.
Speaker 2 (40:06):
Right, yeah.
Speaker 1 (40:08):
And it's just me and Curry and we are very thankful
that people have stepped up.
Speaker 2 (40:17):
Sam and Megan.
Speaker 1 (40:19):
Sam and Megan, and Dory who's helping with the, and
Julie again who's helping withthe Saturday meeting.
So there's a lot of things thatwe can still help people, even
if you have Lewy body, if youwant to volunteer to be somebody
to call somebody that's newlydiagnosed and just like like our
(40:40):
friend Tom Larson, like he's,he came in like hot on that
first meeting Like he was suchdenial and now he's the, he's
the guy we have call people whenit's new because you know it's
stressful in the beginning andit's hard to accept and yeah, so
thank you to everybody for allthe volunteers.
We've missed naming anybody.
(41:01):
Just know, um, we Just knowwe're grateful for all your help
.
Speaker 2 (41:05):
We sure are.
I want to thank everyone,everyone who's helped support us
, everyone who listens to us.
As a matter of fact, I meant topoint out to you, Lyndon I
forgot this last time we'veposted the three episodes of the
CND Life Services.
This last time, we've postedthe three episodes of the CND
Life Services.
Mm-hmm, I always post thepodcast in a total of 42 groups
(41:29):
and I had people in those othergroups commenting on it this
time, several times this time.
So people are listening.
Speaker 1 (41:39):
Oh, and they were asking.
Yeah, they're asking questionsabout it.
Wow, wow, that's good.
I didn't realize you did thatyeah um, I was trying to pull up
the stats real quick of thepodcast, but okay I just know
it's I don't know um all time is62,885 downloads.
(42:02):
Wow, Like who would havethought.
Speaker 2 (42:08):
Yeah.
Speaker 1 (42:09):
Yankee and a Southerner.
Differences work people, yeah,but anyway, all right, that's
all we have time for, as Karisaid, and if you want to learn
about how to be a supporter ofthe podcast, please see the
episode notes or at the top ofthe page under featured.
(42:30):
I think it is on the Facebookpages.
Speaker 2 (42:32):
Yes, okay, folks, thanks again for joining us.
Speaker 1 (42:35):
Until next week.
This is Linda.
Speaker 2 (42:38):
And Kari signing off.
Welcome back podcast family.
Speaker 2 (00:14):
Yes, welcome back y'all.
Speaker 1 (00:16):
Yeah, it's been a minute, huh Curry.
Speaker 2 (00:19):
It has, it sure has.
Speaker 1 (00:22):
It's been a minute to much longer for me to figure
out the buttons again.
Just another quick shout out toeveryone for your continued
support and patience and happy2025.
Speaker 2 (00:36):
Oh yeah, Is this the first one we've done in 2025?
Speaker 1 (00:41):
It is.
Speaker 2 (00:42):
It is, oh, my God.
Speaker 1 (00:43):
Yeah, because we've been posting the, we decided to
post the.
Speaker 2 (00:48):
CND.
Speaker 1 (00:49):
Yeah, the CND Life Science is one, because of
everybody in the group, that'sright, we got a lot of messages.
Yeah, so we just decided to dothat and then jump back in a
couple weeks later.
Speaker 2 (00:59):
Yeah, so thank you all for being so patient and
supportive of us.
Speaker 1 (01:03):
Before we start today's episode, we want to
remind all of our listeners thatit's important for us and for
you and for everybody to sharewith the medical community and
those who are affected by thisdisease, who are affected by
this disease.
So if you're listening for thefirst time and someone in your
(01:26):
family has been diagnosed or youhave been, share the podcast
with your family members andevery medical person you see,
because we've been finding out,there really should be a team of
people, just like when someoneis diagnosed with cancer, they
have that team.
So there really should be ateam of doctors working for LBD
(01:48):
patients.
So even your eye doctor or yourgynecologist, you know it's
good that they know the wholeperson and not just the one area
they're treating.
So please feel free to sharethe podcast name.
They can just Google it withall those people.
Speaker 2 (02:05):
Most definitely Also.
Speaker 1 (02:06):
Also, I want to remind y'all that if you'd like
to be a guest on our show andshare your story in hopes of
helping others, just contactlindsay zapula or myself through
facebook messenger or our email, which is
louisbodyrollercoaster atgmailcom, because we'd love to
have you on the podcast yep, andwe don't always say this
(02:26):
reminder, but remember, if youwant to be a supporter of the
podcast, there's two ways youcan do it patreon, if they're
all in that, under the featureson the facebook pages, you can
do patreon, which is a weekly orone time, or the gofundme link.
Remember, curry and I do notuse any of the funds for
ourselves.
We use it to defray the costsof the editing, the monthly
(02:49):
podcast hosting site, which wentup because we're using AI now,
which is good.
That really helps us as we'redoing this.
Thank you again everyone forsupporting us, those who have
supported us and those who arejust listening for the first
time.
Speaker 2 (03:08):
Yeah, and as a reminder, folks, I just wanted
to point out we're not givingmedical advice, we're just
sharing our open and honestfeelings and thoughts as we live
with Lewy Body Dementia.
Now, what I usually do, folks,is I give a shout out to all of
our supporters and I do thankeach and every one of y'all, but
I've got some here that I wantto give a personal thank you to,
(03:30):
and that's Kristen Moss, lauraJulecki, fred Pounds, lana
Babcock, lori Birdie, craig andAnn Marie and James Hoogie.
Okay, so let's get this andJames Hoogie.
Okay, so let's get this weekendstarted.
Linda.
Speaker 1 (03:49):
Okay, Just like Kari says, when it's just me and him,
we call them our fireside chats.
So since it's the beginning ofthe year and we took the
holidays off which we reallyappreciate everyone allowing us
to do each year I want to leteverybody know how you're
feeling, Curry, you can share alittle.
You're still on hospice, whichthat could be a whole topic.
(04:14):
After our meeting yesterdaythat someone was denied hospice
because they were notincontinent or falling, and you
saw me wanting to jump throughthe screen because Jim was
neither of those and he was onhospice.
Mm-hmm, and you're.
You haven't really fallen sinceyou've been on hospice, right?
Not?
Speaker 2 (04:33):
since I've been on hospice.
I feel I think I've failedtwice since I've been on hospice
.
Speaker 1 (04:38):
Mm-hmm.
Speaker 2 (04:39):
But it's been a long time.
Speaker 1 (04:40):
And don't mind me asking are you incontinent?
Speaker 2 (04:44):
Oh yes.
Speaker 1 (04:45):
Okay.
Speaker 2 (04:46):
Not all the time.
Not all the time, but Iconstantly battle it.
Speaker 1 (04:52):
Yeah, yeah, so it's been.
Yesterday's meeting was prettyfrustrating because we know the
person could really use the help, but oh definitely yeah, it's
those guidelines.
Just, you know, like stickingLewy body in a box, you know you
have to have these checked offto be considered Lewy body, or,
(05:13):
like hospice, you have to be,you know, fallen and cotton, I
don't know.
Speaker 2 (05:19):
I think they need to just keep calling around to
different hospices.
They're in a big enough area.
Speaker 1 (05:23):
Yeah, and it's just very frustrating because hospice
is handled by Medicare.
Medicare is a federal program.
Why is hospice requirementsdifferent in every state?
Speaker 2 (05:38):
Yeah, I don't know.
I know one of the best thingsthat ever happened to me was put
on hospice.
Speaker 1 (05:44):
Right, it's really helped me out.
Yeah, I mean, it's really.
You've come a long way.
So let's back up a little.
I think one of the last timeswe recorded we talked about you
self-medicating and did yourselfin a little bit and wound up in
the hospital.
(06:04):
And now Linda, your wife, iscontrolling all those meds
Definitely, yeah, which hashelped, but I think it was at
the end of December when youstarted having hallucinations
again.
You want to share about that?
Speaker 2 (06:21):
Yeah, my hallucinations started coming
back, not the very, not thescary ones and not the real,
vivid ones, but just the mild,mild hallucinations have started
coming back.
You know, I'd be outside andI'll well.
For one instance, one of ourneighbor's houses I looked at at
(06:43):
night when I had the dogs out.
I saw this great, big oldpicture window in it and they
had the curtains open and Icould see people walking back
and forth inside the house.
And the next day I was out thereand I looked over there and the
house doesn't even have a largepicture window in it, it's just
got a window with the airconditioner unit stuck in it,
(07:04):
you know, and I've seen a guyout back uh, as stupid as this
sounds raking leaves up andsticking, putting them in a golf
cart, you know.
And I walked around thebuilding behind our storage
building where I couldn't seehim, and I walked around the
storage building so I could seehim, and there he was raking
(07:26):
leaves and putting them in agolf cart of all things, you
know, and so I didn't want tospook him, so I walked back
around to where I was in thefirst place and then he was gone
.
Just ones like that, you know,and I still see the little black
blobs running to and back fromthe house.
But at least, like I said,they're mild hallucinations now.
(07:49):
So that's, that's, that's good.
Speaker 1 (07:51):
Are you still having them today?
Speaker 2 (07:53):
Yeah Well, I haven't had one yet today.
No.
Speaker 1 (07:56):
But yesterday I mean it's still yeah.
Speaker 2 (08:00):
I still have them on a regular basis.
Speaker 1 (08:02):
Okay, and when you're having them, do you realize
you're having them?
Speaker 2 (08:10):
For the most part I do Now, like the guy wrecking
the leaves.
He was just real, as ever to me, you know.
But yet once he disappeared Irealized it was a hallucination.
You know, and some of them Irealize they're hallucinations,
(08:33):
but I don't really get it untilI'm out of it, if that makes any
sense no, it does, because yousaid you went out later with the
picture window and you lookedacross and you were like there's
no picture window.
Speaker 1 (08:46):
Wouldn't it be great if they were something?
Something goofy just poppedinto my mind.
I'm trying to figure out how tosay it without it sounding bad.
I don't know if I could do it.
I might have to share itoffline.
Curry, go ahead.
If you were seeing someonebreaking the leaves, that maybe
(09:07):
wasn't a man, like somebodacious babe or something like
that, I don't know.
Say that to your hallucinationnext time, if you know you're
having one be like hey, where'syour wife?
Speaker 2 (09:25):
Probably Anthony.
Speaker 1 (09:27):
I know, yeah, I don't know why stuff like that pops
in my head.
Um, yeah, so you know, you'veyou've been going through all
that and still come into thezoom meetings and you have, oh,
did you hear that ding?
Okay, sorry, somebody just sentme a message on facebook.
Um, so you've been goingthrough all that and hospice has
(09:50):
been coming, which I rememberwhen jim had palliative care
coming, which everyone on louisbody is eligible for, and it
just became overwhelming for himbecause it was like PT, ot, you
know too many people coming.
How are you adjusting to?
(10:12):
I don't think you have thatmany people coming, but how are
you adjusting?
Like, tell us what your hospiceexperience is like in a week.
Speaker 2 (10:19):
Oh well, the uh, the aid that helps me get in and out
of the shower.
She comes on Monday, wednesdaysand Fridays.
The nurse comes on Tuesdays andFridays and then normally the
caseworker.
She comes either Wednesday orThursday, and then the preacher
(10:42):
either comes either Wednesday orThursday.
Wednesday or Thursday, and thenthe preacher either comes
either Wednesday or Thursday.
There's usually one day out ofthe week that we don't have
someone hear from Okay, otherthan that, they're here every
day.
Speaker 1 (10:55):
Well, we know, when Curry comes to his meeting, when
he doesn't have his dinky buttanymore yeah, you just know
you've had a good day with youraide.
Oh yeah, we don't really knoweveryone listening which just
you know.
He sometimes comes late and islike my aide was here and we're
like, oh, she washed his butt.
Yeah, that's just something wemess around with Curry doing so
(11:22):
do you think it's?
Speaker 2 (11:23):
It's been a big help to me and Linda.
Speaker 1 (11:26):
But you don't think it's too much.
Speaker 2 (11:29):
No, I don't.
I've gotten used to them now.
Speaker 1 (11:33):
That's great, that's great.
So how often does the nursecome?
Speaker 2 (11:39):
The nurse comes twice a week and the aide comes three
days a week.
Speaker 1 (11:43):
And you said the chaplain comes once a week and
the aide comes three days a weekand that you said the chaplain
comes once a week.
Speaker 2 (11:48):
The chaplain comes, and then so does the caseworker.
Speaker 1 (11:51):
Okay, how long do they stay and what do they—
About an hour hour and a half.
And what does the chaplain do?
Speaker 2 (11:58):
He just sits down and we just talk like we're
neighbors.
Speaker 1 (12:04):
Oh, that's nice, I'm just curious.
I'm just curious because Iheard that Turn your phone off.
I got you the first one of thenew year.
Speaker 2 (12:15):
I know right.
Speaker 1 (12:18):
You did really good last year.
I remember, of course.
Wait, I want to find my phoneand turn mine off before I get
in trouble.
I was just curious, because Jimnever had that experience.
By the time the chaplain wascoming, it was time to give him
his, you know.
Speaker 2 (12:37):
Yeah.
Speaker 1 (12:38):
Well, chaplains don't give last rites, but you know
to pray for him.
Chaplains don't give last rites, but you know to pray for him,
mm-hmm.
So they don't—we don't talkabout anybody's religion on the
podcast, but—.
Speaker 2 (12:52):
Right.
Speaker 1 (12:53):
So the chaplain doesn't make you feel like he's
there pushing any religion onyou.
He's just kind of there, likeyou said, as like a neighbor, to
sit down and see how you'redoing any religion on you.
Speaker 2 (13:05):
He's just kind of there, like you said, as like a
neighbor, to sit down and seehow you're doing.
Well, on the first time he cameout, he asked me.
He said now, do you want me toread scripture to you, quote
scripture to you, when I come?
And I said no, I really don't.
And he said okay, and he justcomes now and checks in with us
see how we're doing.
We talk about the weather orgrandkids or everything like
(13:26):
that, you know, and then at theend we say a little prayer and
that's it.
Speaker 1 (13:31):
And you can choose.
Now I'm just imagining there'ssome people that you know
wouldn't want to bring thereligion into it, but it sounds
like you can just kind of tellthem what you want to do and
what you don't want to do.
Speaker 2 (13:45):
Oh yeah, you can, you can.
You know, that's what thecaseworker, social worker is for
.
She makes sure thateverything's going okay and she
asks you how everyone's treatingyou and all that good stuff.
Yeah, she's really good.
Speaker 1 (13:58):
So if you are uncomfortable with the religion
and the praying part, you couldjust tell the caseworker listen
you can just come and be anothersupport.
But nope, okay, I mean it'sgreat that that is offered to
you.
Speaker 2 (14:12):
Yeah, it really is.
It's been real good for me.
Speaker 1 (14:15):
Yeah, I'm very happy you're having a positive hospice
experience while you're stillable to have the experience,
because sometimes when we hadthe podcast on which I was
thinking, we probably shouldplay that, the episode we had a
retired hospice nurse on.
Speaker 2 (14:35):
Oh right, Angie Vanjie.
Speaker 1 (14:36):
Yeah, vanjie, we should replay that, because I
think what we're finding is somepeople are just now finding the
podcast, so they kind of startwhere they find us kind of thing
Right.
I don't know.
Speaker 2 (14:51):
I think that would be a good thing to replay it.
Speaker 1 (14:53):
Yeah, and you know we have like 150 episodes, which
is mind-boggling.
Speaker 2 (14:59):
Right.
Speaker 1 (15:00):
You know, for somebody to go all the way back.
I don't even know when that wasfirst or second year.
We should really go, we should.
It should be funny.
We should figure out how we canplay our first episode and we
react to it as we're hearing it.
See how far we came.
Speaker 2 (15:20):
We didn't even have any and then our first three
episodes.
Speaker 1 (15:22):
Yeah, we didn't even have any of it.
And then our first threeepisodes yeah, we didn't even
have video.
Then, I don't know, I had someyoung college kid helping me.
It was yeah, we should do that.
That would be a funny episodeto do and be like what the
heck's going on there?
Speaker 2 (15:36):
I know right.
Speaker 1 (15:39):
Anyway, I'm happy that you're having that great
experience with them and for yousharing about your
hallucinations which you do.
All the time on your page yousay how you're feeling.
I want to say the majority ofthe time you could be struggling
, but in the last couple of daysyou posted something that was
(16:01):
so uplifting to everybody.
You want to share what youposted, oh.
Speaker 2 (16:06):
I watched today, saturday, thursday.
I woke up and wasn't reallywith it that morning, but by
noon, man, I was having a greattime.
I mean a wonderful day.
I felt good, still having mypain.
It's still about a five on ascale of 10, but that's the best
(16:28):
it's going to get.
But I ended up having Thursdaywas the best day I'd had in
probably two or three years.
And then yesterday I woke up,felt the same way, had another
good day, same thing.
Speaker 1 (16:43):
And then today, I wake up and I the same way had
another good day.
Speaker 2 (16:45):
Yeah, same thing, yeah.
And then today I wake up and Ican't stay awake.
Speaker 1 (16:49):
Yeah, because he's like I'm ready to record, I'm up
, I'm like all right.
Speaker 2 (16:53):
Yeah.
Speaker 1 (16:53):
You know we'll record in an hour and then an hour
comes, I'm like hey, yeah, andI'm still asleep and he's sound
asleep.
Speaker 2 (17:00):
I'm still asleep.
Speaker 1 (17:01):
And he's sound asleep .
I'm like yeah, I went soundasleep, Let me go do some chores
.
Speaker 2 (17:05):
Yeah.
Speaker 1 (17:06):
Yeah, but that's great.
That's what and we talked aboutthis in our Zoom yesterday is.
That's what's so crazy aboutthis disease.
You can go and just for thosethat are having these days where
Louie has just got a hold ofyou every now, and then you're
going to get these kind of youknow the days you've had the
(17:27):
last couple of days and we knewyesterday when you came into
Zoom like when you come intoZoom you can tell how you're
feeling.
Like now you're starting tolook a little tired.
I'm just going to let you know,but your body's probably
crashing from having those tworeally great days.
Speaker 2 (17:44):
I mean, they were good days, they really were.
I mean.
Speaker 1 (17:47):
Even your wife said right.
Speaker 2 (17:49):
Yeah, even Linda and the hospice.
See, yesterday the nurse didn'tcome on Friday because she took
the day off.
So the head of the hospice,instead of coming on Friday, she
wanted to come on Thursday, andshe couldn't believe how good I
(18:11):
was doing that day either.
Speaker 1 (18:14):
Yeah, but I don't.
Did you tell her this isn't meevery day.
Speaker 2 (18:19):
Yeah, oh yeah, she knew it Okay.
Speaker 1 (18:22):
Yeah, but hopefully it was a learning experience for
her too, if she's not dealtwith Lewy body patients.
Speaker 2 (18:29):
Well, her dad passed away from Lewy.
Speaker 1 (18:31):
Okay, so she knows, that's good, that's sad I didn't
mean to say that's good, butthat's sad, but it's good that
she is aware of it.
Speaker 2 (18:41):
She's familiar with it, yeah.
Speaker 1 (18:43):
Wow, you really lucked out with getting people
that.
Speaker 2 (18:47):
I really have.
Speaker 1 (18:48):
You know that, know it or that doctor you had.
I had a good doctor in.
Speaker 2 (18:56):
Texas.
When we first got here I gothooked up with a good doctor and
then she left and I had to gofind another good doctor and she
saw me after I fell and was inthe hospital and went to go have
an appointment with her and shesaid someone asked her there.
(19:19):
Linda may have asked her.
Something was said about whatwould we do, what should we do
with him falling all the time?
And she just said hospice.
And that just started the wholething.
Speaker 1 (19:34):
And there's been no word of you're having a fairly
good day, so you're doing toogood to keep hospice.
Speaker 2 (19:45):
Uh-uh.
Speaker 1 (19:47):
No, that's good, Because I'm assuming you're
going to be evaluated like everysix months.
Speaker 2 (19:51):
But yeah, she evaluates me every three months.
Speaker 1 (19:54):
Okay, okay, yeah, and somebody.
That was one of the discussionsI just want to share with
everyone.
If you're listening and youhaven't joined in one of our
Zooms, I really encourage you tojoin in because it really has.
You've quickly become one ofthe Louis family members and,
like we entered Zoom yesterday,like Kurt and I are usually on
(20:16):
first and I, you know, we talkfor a few seconds.
And the way we started.
Yesterday's was me I startletting people in, or you start
letting people in and I'm stillrattling off of why does my
husband have so many flashlightseverywhere?
look, there's like men, men he'slike, and I started asking all
the men like, why do you have somany flashlights?
And I mean I showed curry.
(20:37):
There's eight of them sittingnext to me now and I found three
after that meeting.
I'm like, why do men?
And so you know.
So we come in and we're usuallylaughing about stuff like that.
But then it just became such agreat discussion and that's
usually what you know the firstfew seconds.
If somebody's new, we let themintroduce themselves, or you can
(20:58):
just listen and have yourcamera off if you want to try it
, because I know a lot of peopleare nervous the first time they
get into Zoom.
We don't pressure you to putyour camera on or even to talk
if you don't want to, but soonyou get sucked into the family.
Speaker 2 (21:18):
I tell you one of the and this is so stupid, but it's
true One of the things thatmade me know I was having a good
day.
Normally when I shave, I buythe disposable razors, but
they're three blades, you know,and they last a long time.
(21:39):
But normally when I shave Inormally have five o'clock
shadow by the end of the day.
But I had ordered a new razorto come with 19 blades on it
from Timu.
And I've been afraid to try thembecause, man, they're from
China, they're going to cut melike crazy.
But I went ahead and openedthem up and started using them
(22:01):
Thursday and I still got theclosest shave I've had in a long
time.
I mean, just little things likethat make you feel good.
Speaker 1 (22:09):
Yeah, yeah, that's what the moral of the story is.
That was not a plug for Timu.
Speaker 2 (22:14):
No.
Speaker 1 (22:15):
I haven't.
I don't even know.
I've heard about it.
I don't even know.
Speaker 2 (22:19):
I've heard about it.
Speaker 1 (22:20):
I don't even yeah, Too much other things going on
to worry about what Timo is orisn't doing or what it is.
But I've heard you get cheapstuff.
But that's great though.
But do you normally shaveyourself or does the AIDS?
Speaker 2 (22:33):
I do.
Speaker 1 (22:34):
Do the AIDS?
You do.
Speaker 2 (22:35):
Yeah, I do yeah.
Speaker 1 (22:36):
Yeah, I do, yeah, so go back to our Zoom meeting
yesterday and this whole hospicetopic that we're talking about,
that whole evaluation.
Like somebody said, theyevaluate you I thought it was
six months every three months,as if what you're going to get
(23:00):
better.
You know, like there have beenpeople, we know people have been
on and off hospice, you know,and it's like what's the
criteria that's keeping themthere for you and if you
graduate?
Speaker 2 (23:18):
I don't emulate ambulatory.
I'm not very good at.
Speaker 1 (23:22):
Yeah, yeah for moving around.
Yeah, yeah, yeah.
So you have them, so there's,but you are every now and then
you were falling.
So that was like the big signfor you.
But I forget somebody in thegroup was saying how frustrating
it was that you were evaluatedand they felt like the medical,
(23:47):
you know, whoever the hospicewas at that time and whoever's
evaluating that, like at threemonths, you could be Louie
better, you know.
Speaker 2 (23:56):
Oh yeah.
Speaker 1 (23:56):
And if you are not, like if you stopped falling and
having incontinence issues,would they?
They'll?
Speaker 2 (24:07):
just keep me on.
Speaker 1 (24:08):
They'll keep you on.
But if they like, if a certainperson doesn't fit into the
hospice check boxes, I wouldhope that they would go down to
palliative care, so that you'restill getting some kind of care,
but that's not AIDS.
Palliative care, so that you'restill getting some kind of care
, but that's not AIDS.
Palliative care doesn't haveAIDS, it's more.
Speaker 2 (24:25):
Yeah, they said that I could have chose to go on
in-home health care and it wouldhave been through the same
group of people, the samecompany.
Speaker 1 (24:45):
But since my doctor said hospice instead of home
health care, yeah, wait, butthey do offer home health care
as well.
Where they come to your house.
Speaker 2 (24:52):
Uh-huh.
Speaker 1 (24:53):
Yeah, okay, so that's not part of hospice.
Speaker 2 (24:57):
No.
Speaker 1 (24:57):
Okay, all right.
And what I said right before westarted is or I may have said
it while we were just talkingwhy is hospice different than
every state when, when they'repaid by medicare, which is a
federal program, medicare ormedicaid, I I don't get it.
(25:18):
I mean that's right yeah, Imean, it's hard enough, when you
need something like that, tohave to now go research what you
know, what is covered and notcovered.
Speaker 2 (25:34):
Yeah, and let me back up.
They take care of my painmedication as well.
They're the ones who put me onmorphine and they're the ones
who put me on the fentanyl painpack.
Speaker 1 (25:47):
Yeah, yeah, and that's really helped.
Speaker 2 (25:51):
They had to take me off my.
What it was, what made me fall,was taking Valium?
We think yeah, and so theychanged that part of my meds up.
I still get all my regular meds, my maintenance meds and all
that, but they take care of allmy pain meds now and my anxiety
(26:14):
pills.
Speaker 1 (26:15):
Well, it was your fault for thinking that your
Valium was Skittles.
Speaker 2 (26:19):
I know right.
Speaker 1 (26:21):
Told your wife to put it in that box.
We got you and lock it.
Yeah, yeah, yeah.
Well, at least they found outwhat you know, what that was.
Speaker 2 (26:30):
Yeah.
Speaker 1 (26:34):
And I mean even Amy from Ireland who yesterday, like
everybody, was just so happy toread your post Thursday and how
great you were feeling.
I would have, if I was yourwife, Linda, I would have
whipped out my honey-do list andmade you do some of the things
on the honey-do list.
Did she make you do any?
Speaker 2 (26:55):
No, she didn't.
Speaker 1 (26:57):
I'm going to get all sorry.
I'm going to get all over.
When you guys are having a goodday, whip out that list.
Speaker 2 (27:03):
Yeah.
Speaker 1 (27:05):
Get to fixing something.
Speaker 2 (27:06):
Right, right Fixing.
No, she just let me enjoy them.
Speaker 1 (27:10):
Yeah, well, I was happy that she realized that you
were having a good day too,which I know made her very happy
.
Yeah, you know, because I knowover the holidays you know
people coming and going thatprobably wore you out and people
with everybody out.
Yeah, we've heard that from alot of people, but everybody
(27:33):
seems to be, and I'm talkingabout the people in our support
group now.
Everybody seems to know now andtheir loved ones know there has
to be a separate area that yourloved one with Louie can go
when it gets to be too muchconversation and you got two
little grandbabies now, right orgreat?
Speaker 2 (27:52):
Great grandbabies.
Speaker 1 (27:53):
Dang, you're.
How old are you?
You're old.
Speaker 2 (27:57):
No, no, I'm 65.
Speaker 1 (27:59):
Wow, Great great.
You have great grandbabies.
Speaker 2 (28:05):
Two great grandbabies .
Speaker 1 (28:06):
Wow, that's crazy.
I don't even have one.
Speaker 2 (28:10):
I tell you what this turning 65, it hurt me more than
any other birthday I've everhad.
Speaker 1 (28:17):
Why.
Speaker 2 (28:18):
I don't know, I just never.
I can't believe I made it to 65.
I always.
None of the men in our familyever lived past 65.
Most of them died in their 50s.
Speaker 1 (28:29):
Okay.
Speaker 2 (28:30):
So I was expecting to die, be dead, before I was 53.
You know, and here I am, all ofa sudden, I'm 65.
Speaker 1 (28:40):
So it was a positive birthday, it was a good birthday
, not a.
Speaker 2 (28:46):
Oh yeah, it was a wonderful birthday.
I had a good birthday.
Speaker 1 (28:50):
Yeah, yeah, yeah.
Speaker 2 (28:51):
Grandkids were here.
The grandkids was here.
My daughter and her husband andtheir son was here.
Yeah, it was a wonderful day.
Speaker 1 (29:02):
Yeah, that's good.
I keep seeing the commercialsabout when you're 60 and over
you need to get the shingle shotand all this and I'm like, oh
my God, I'm getting close there.
Speaker 2 (29:12):
I'm dreading it, the 60 number, I'm now going on 70.
Speaker 1 (29:17):
Yeah.
Speaker 2 (29:18):
Wow.
Speaker 1 (29:20):
Technically, if you round up, you are 70.
Yeah, you know, learn that inmath, we'll go with that You're
70.
Yeah, I'm dreading the 60.
I don't know why, and just Ithink when you're in your 50s
you can still lie and say I'mlike 53 and get away with it.
I'm like ugh.
(29:40):
In a few years, when I'm 60,I'm like ugh, but I don't know
why.
There's commercials.
I keep hearing them.
It's like subliminal messages.
It's coming, your 60th birthdayis coming.
Make sure you remember thesethings.
I'm glad that that 65 is a goodbirthday for you.
Speaker 2 (30:00):
Oh yeah, and I'll tell you another thing, knowing
I turned 65, I've beenpost-diagnosed.
I've been eight years since Iwas diagnosed.
I'm going on nine years now.
Speaker 1 (30:18):
Right.
Speaker 2 (30:18):
It'll be nine years this year.
Boy, that's another step yeah.
Yeah.
Speaker 1 (30:26):
Yeah, because you just broke that five to seven
year thing that everybody writesabout Five to seven, or two to
20.
Speaker 2 (30:36):
Yeah.
Speaker 1 (30:38):
Just don't listen to, don't take what you read as far
as the time that you.
Speaker 2 (30:45):
No, don't take that prognosis seriously.
Throw it out the window.
Speaker 1 (30:49):
Yeah, I mean take it seriously that you have
something, but not the timelinethat it's on.
I think it's a mindset, it'sall mindset I do too.
Well, part of it's mindset.
Yeah, you know, because I, Ithink I don't know I I want to
go back to just encouraging, ifyou're a new listener, um monday
(31:12):
and mondays and fridays at 1130 to 1 eastern time, we do, we
do a zoom, I know it.
You didn't hear that ding, butI'm sure.
Sorry, andrew, my son's goingto have to.
Somebody just texted me on thecomputer, not on my phone.
Curry, my phone is off.
Speaker 2 (31:30):
I was getting ready to get on you.
Speaker 1 (31:31):
I know it's just when you go to the Zoom.
You may come in there feelingreally crappy, but you're going
to leave laughing.
Yes, we do talk about someserious stuff and people share
like, hey, I'm having thissymptom.
And yesterday we talked abouthow there was a person in one of
(31:59):
our Facebook groups whosehusband, I think he fell and
they took him to the hospitaland they gave him Haldol right
away and he hasn't been able towake up.
Speaker 2 (32:09):
Yeah.
Speaker 1 (32:10):
And whoever told that story, if you could see the
faces, everybody was like oh myGod.
And then I said I started tobinge watch ER because it was 30
years ago that was on and therewas one part where someone with
dementia came in and I guess,living with someone who had
dementia and being around peoplewith dementia, like I knew
(32:32):
right away the storyline, whatwas going to happen.
This guy has dementia and hewas agitated.
First thing that doctor said isgive him Haldol.
Yeah, and I'm yelling at the tvlike it was 30 years ago.
I'm like, oh my god, the worstthing you can do right,
especially for lewy body people.
Yeah, and you know, I I thinkthat gentleman has other issues
(32:56):
going on that caused him to goto the hospital, but he, he's
still not awake, you know.
So one of the things we reallytalked about I keep going back
to the Zoom meeting, because Ijust thought it was such a
powerful one is have yourdoctors put on your chart that
you are allergic to Haldol.
Yeah, because then they willnot give it to you because you
(33:22):
can't say, yeah, I'm going tosay somebody said you can't just
.
There was somebody, a medicalperson, in the group yesterday
and they said you can't just sayI don't take it because I don't
like the way it feels or Ithink it might affect my memory.
They're going to give it to youif it's not on your chart it
has to say allergic to yeah,it's on all my charts.
Speaker 2 (33:42):
I'm allergic to give it to you.
If it's not on your chart, ithas to say allergic to.
Yeah, it's on all my chartsthat I'm allergic to it.
Speaker 1 (33:47):
It's on the hospital.
Speaker 2 (33:48):
It's a doctor's office.
Yeah, so this is if they alwaysgive me a little red bracelet.
Speaker 1 (33:51):
Yep, if you have Lewy body or you're a caregiver,
listening, call the doctor'soffices and just don't wait
until your next appointmentbecause you could have a
hospital incident between then.
Like, get that put on the chartbecause they don't care if you
say you don't want to take it.
If it's not written as anallergy, they're going to.
Speaker 2 (34:10):
They're going to give it to you.
Speaker 1 (34:11):
Yeah, and you're agitated.
We had somebody on the podcastlast year who was sent to the ER
and then her husband went to gofeed the animals or something,
and then she had a hallucinationand they gave her.
You know, yeah, so it was justa.
That's the kind of stuff thathappens in our meetings, like it
was just so powerful, I mean.
(34:33):
But we're always laughing, um,when we come in and when we
leave, cause it's just, it'sjust become a, it's a family
that you want to be around, ifthat makes sense.
Speaker 2 (34:46):
Yeah, and I want to go ahead.
I want to say something here ina minute as soon as I find it
real quick.
I got to look at it real quick.
Speaker 1 (34:53):
Okay.
Speaker 2 (34:54):
Yeah.
It's going to take me just asecond here.
Speaker 1 (34:59):
Okay, would you like me to sing?
I'm not very good at it, though.
Go for it.
You and everybody else does notwant me to sing.
That's my son.
Speaker 2 (35:09):
I just want to say one thing.
There's a lady in our groupwho's had a really hard time,
and Mary Jo, if you're listening, I'm so glad that you're having
a lot better time now andthings are going to turn around
for you.
You've had a rough few yearsand now everything has turned
around for you, so I'm tickledto death.
Speaker 1 (35:32):
Yeah, and she has Louie right.
Speaker 2 (35:35):
Yes.
Speaker 1 (35:35):
Yeah, it's like.
I think that's why, when wewere recording today, I said I
really want you to share aboutyour two good days, because,
yeah, you're going to have thosecrappy, crappy, crappy days,
but every now and then you havethis bright day.
Come your way.
Speaker 2 (35:54):
Yeah, when your bad days outnumber your good days,
it's one thing, and sometimes itseems like it can go forever.
It seems like mine has.
And then Thursday, like my wifeeven said, she hadn't seen me
feel that good in a long timeand I hadn't felt that good in
two or three years probably.
Speaker 1 (36:16):
Yeah, I mean you do do podcasts, curry.
Yeah, I mean, that's the wholeyou got to.
We said you have to patent ornot patent.
Is it patent?
Speaker 2 (36:31):
Patent, the phrase you know you still have a lot of
good life left.
Speaker 1 (36:37):
Copyrighted.
Copyrighted Still have a lot ofgood life left after diagnosis.
Speaker 2 (36:40):
Yes.
Speaker 1 (36:41):
And you could do a lot of good for the world and
the people behind us.
That's what I think you and Iare doing, so other people don't
have to struggle as much, allright, well, we just wanted to
jump on real quick and reallythank everybody for their
patience, and every now and then, we're going to be uploading an
(37:02):
old episode, since this is likeyear five for us, which is
crazy.
Speaker 2 (37:07):
I know right.
Speaker 1 (37:09):
Technically year four .
Speaker 2 (37:11):
Whoever would have thought that a phone call from
who I thought was a crazy ladywould end up like this?
Speaker 1 (37:18):
And now you're stuck with me forever.
Speaker 2 (37:20):
Yeah, you can't get rid of me of.
He can't get rid of me.
You're like I got a littlesister yep, yep, yeah and yeah
it's.
Speaker 1 (37:28):
You know I like we have I I meet with um several
women who are in our supportgroups before who lost their
husbands, and the other night wewere talking I've just got like
I have five new girlfriendsthat I know I can call and they
(37:50):
understand what I'm goingthrough with the grief.
You know what I mean.
And somebody said the othernight if it wasn't for Lewy Body
, none of us would have met.
So just if it wasn't for COVID,we probably wouldn't be doing
Zoom or a podcast.
Yeah, so you know.
When bad things are happening,you know you can turn them into
(38:16):
a positive.
Speaker 2 (38:17):
Yeah, I'm glad you came up with this idea.
Speaker 1 (38:22):
Some days I'm like what was I thinking?
Like today, when I had tofigure out the buttons again.
I'm like, oh, it's been a whileCurry, I've got to try to hit
the right buttons.
Anyway, we just want to jumpback in.
We do have some people lined upto start new interviews for the
new year, so happy 2025.
(38:42):
Yeah, definitely.
Speaker 2 (38:43):
Y'all check your Facebook Messenger.
Linda's sending out messages tothe people who said that they
wanted to be on the podcast, sowe're trying to get hold of you
now.
It's been a while, but y'allare hung with us, so just check
your Facebook Messenger request.
Yep, but, folks, that's all wehave time for this week hung
with us, so just check your.
Facebook message request.
Folks, that's all we have timefor this week, remember, you can
(39:05):
email us with suggestions onwhat you would like us to
discuss on a future episode, oryou can just ask any questions
you have, and we'll sure do ourbest to help you get the best
answer.
Speaker 1 (39:15):
And always remember that we post the link.
Curry, post the link of thepodcast on both the Louie Body
Roller Coaster podcast Facebookpage and our Journey with Lewy
Body Facebook page and if you'reinterested in helping as an
advocate or a volunteer, pleasesend us an email.
I want to give a shout-out tosome volunteers real quick.
(39:37):
We have Julie who every daypost a positive, inspirational
message.
Um, we had she goes under Eastgarden who volunteers on June.
If she really helped out withuh things for the meetup, julie
(40:00):
also, I think Julie and somebodyelse is helping her to send
people birthday messages whenit's your birthday.
Speaker 2 (40:06):
Right, yeah.
Speaker 1 (40:08):
And it's just me and Curry and we are very thankful
that people have stepped up.
Speaker 2 (40:17):
Sam and Megan.
Speaker 1 (40:19):
Sam and Megan, and Dory who's helping with the, and
Julie again who's helping withthe Saturday meeting.
So there's a lot of things thatwe can still help people, even
if you have Lewy body, if youwant to volunteer to be somebody
to call somebody that's newlydiagnosed and just like like our
(40:40):
friend Tom Larson, like he's,he came in like hot on that
first meeting Like he was suchdenial and now he's the, he's
the guy we have call people whenit's new because you know it's
stressful in the beginning andit's hard to accept and yeah, so
thank you to everybody for allthe volunteers.
We've missed naming anybody.
(41:01):
Just know, um, we Just knowwe're grateful for all your help
.
Speaker 2 (41:05):
We sure are.
I want to thank everyone,everyone who's helped support us
, everyone who listens to us.
As a matter of fact, I meant topoint out to you, Lyndon I
forgot this last time we'veposted the three episodes of the
CND Life Services.
This last time, we've postedthe three episodes of the CND
Life Services.
Mm-hmm, I always post thepodcast in a total of 42 groups
(41:29):
and I had people in those othergroups commenting on it this
time, several times this time.
So people are listening.
Speaker 1 (41:39):
Oh, and they were asking.
Yeah, they're asking questionsabout it.
Wow, wow, that's good.
I didn't realize you did thatyeah um, I was trying to pull up
the stats real quick of thepodcast, but okay I just know
it's I don't know um all time is62,885 downloads.
(42:02):
Wow, Like who would havethought.
Speaker 2 (42:08):
Yeah.
Speaker 1 (42:09):
Yankee and a Southerner.
Differences work people, yeah,but anyway, all right, that's
all we have time for, as Karisaid, and if you want to learn
about how to be a supporter ofthe podcast, please see the
episode notes or at the top ofthe page under featured.
(42:30):
I think it is on the Facebookpages.
Speaker 2 (42:32):
Yes, okay, folks, thanks again for joining us.
Speaker 1 (42:35):
Until next week.
This is Linda.
Speaker 2 (42:38):
And Kari signing off.
Popular Podcasts
Cold Case Files: Miami
Joyce Sapp, 76; Bryan Herrera, 16; and Laurance Webb, 32—three Miami residents whose lives were stolen in brutal, unsolved homicides. Cold Case Files: Miami follows award‑winning radio host and City of Miami Police reserve officer Enrique Santos as he partners with the department’s Cold Case Homicide Unit, determined family members, and the advocates who spend their lives fighting for justice for the victims who can no longer fight for themselves.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.