September 13, 2024 • 36 mins
Welcome back!
Curry shares how his summer went with his LBD causing a few hospital stays. He also shares some important information about Hospice and Narcan Nasal Spray.
Four years ago we uploaded and published our first episode. It is just crazy that this will be our 138the episode and we are over 60K downloads so thank you all for your continued support and patience. Lewy sure has been a bugger to Curry this summer.
Thank you all for your continued support and patience with us as we try really hard to get a new podcast done- hoping we get one a week but as you all know, Lewy and life sometimes get in the way. We know you all understand and support us anyway and for that we thank you!!! xoxo
Remember...We are doing this for all of us and we thank you from the bottom of our hearts.
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Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 2 (00:12):
welcome back podcast family.
Speaker 1 (00:14):
Yeah, welcome back y'all just another quick shout
out to everyone for yourcontinued patience and support
yeah, we want to to thank youall for being so patient and
supportive as we get thesethings off like we're trying to.
We enjoyed you all letting ustake the summer off, but now
we're going to get back to itjust like we were before.
(00:35):
We just enjoyed the summerbreak.
Speaker 2 (00:38):
Yeah, it's been nice that we knew we needed to just
take that break, kind of liketeachers need to take breaks.
So we appreciate everyone.
If you've been following along,you know that it's a good thing
we didn't have to work thesummer because Curry's going to
just share about what happenedduring the summer.
Speaker 1 (00:58):
Oh yeah.
Speaker 2 (00:59):
So again, as we always try to remember to say
that before we start today'sepisode, we want to remind all
of our listeners that it'simportant to us that you all and
the medical community caresfrom those affected with this
disease.
That's why we make this.
Hopefully doctors are listeningor you're sharing so they can
(01:19):
hear it from the person withLouie.
Please feel free to share withyour doctor.
Tell them about the podcast.
I mean, you just put Louie BodyRoller Coaster.
The podcast comes right up inGoogle.
It's the first thing and we allknow it's important for them to
listen to people who are not ina doctor's office and super
(01:43):
show timing.
So anyway, if you can share,that would be awesome.
Speaker 1 (01:49):
Yeah, and also I want to remind you all that if you
want to be a guest on the showand share your story in hopes of
helping others, just contactLinda Zappula or myself through
Facebook Messenger or throughour email, which is
louiebodyrollercoaster atgmailcom.
We'd love to have you atgmailcom.
We'd love to have you on theshow.
Speaker 2 (02:08):
Yep, and now that we're back in full swing, just a
reminder for those of you thatare Patreon and GoFundMe
supporters we really appreciateit and we don't use any of that
money for us Just to helpmaintain the podcast.
And even though we don't recordduring the summer, there's
still monies we have to put outto stay active on the BuzzFeed
(02:35):
Sprout and we try to help peoplewith Lewy Body who need help,
and we're also now gearing upfor this big event, so we'll
talk about that in a coupleminutes.
So thank you all for supportingus.
Speaker 1 (02:50):
Yeah, and as a reminder, folks, I want to tell
you all, or remind you all, thatwe're not giving out medical
advice.
We're just sharing our open andhonest feelings and thoughts as
we live with Lewy Body DementiaAlso.
Folks, like I always do, I wantto give a few shout-outs to a
couple of supporters, and thefirst one is Lori Burdue-Krigg
(03:14):
and Anne-Marie and James Hoogieand all the others that have
helped us along the way.
Y'all make this thing what itis.
Speaker 2 (03:21):
Yeah, yeah, and I think we hit 60 000 downloads
recently, um and 100, we'verecorded 134 episodes, which is,
that's a big number wow, yeah,I didn't realize you've been
that many yeah, well, we startedin september of 2020.
(03:41):
Like it, our first podcast wentlive the same week that Robin's
Wish was out, which we didn'teven know that that was
happening.
So this, technically, is ourfourth season, so to speak, of
recording the podcast.
So we're going to keep chuggingalong, as you know, the best we
(04:05):
can, um, but anyway folks, it'sjust me and linda this week, so
let's, let's get this thingstarted.
Speaker 1 (04:15):
Uh, we call these things our fireside chats when
it's just the two of us.
Speaker 2 (04:19):
I think I already started.
Is that why you were looking atme, giving me that look, yeah,
like what are you doing anyway?
So, my friend, how was yoursummer?
Any visits to get free foodanywhere?
Speaker 1 (04:34):
uh, I mean, I tell you, I've had people send me
boxes of zero candy bars, whichare my favorite candy bars.
I had them send me a whole bunchof Reese's Butter Cups, which
are my favorite peanut buttercups, as you know, because I ate
yours.
If you left here, that's right.
But yeah, it's been a veryeventful summer for me.
(04:59):
I started the summer off.
I started the summer off.
I was walking from our livingroom going to the restroom and I
had to walk through the bedroomand I was using my big walker,
my stand-up walker, and as I gotinto the other bedroom, I took
(05:20):
a few steps and I just for somereason started falling backwards
and ended up back here in theliving room floor.
And thank God Linda had movedthe cedar chest that was sitting
there, or else I would have hitmy head on it, but they
couldn't get me up off the floor.
Jesse and Linda and Randy, theyall tried, so they had to call
(05:44):
an ambulance.
Well, the ambulance took me tothe hospital and I was in.
They all tried, so they had tocall an ambulance.
Well, the ambulance took me tothe hospital and I was in there
for three days with them runningtests on me and stuff like that
, but they never could reallyfind anything wrong, and so that
was one time, and then, morerecently, I was taking Valium to
(06:13):
calm me down with my what's theword Linda.
Speaker 2 (06:24):
What to take.
Speaker 1 (06:25):
An evalium for your anxiety, anxiety, yep, yep, yep
For my anxieties and I wastaking it, and then I was also
taking another med.
I can't remember the name of it, but anyway, I went out on the
porch one morning about 3o'clock with the dogs and I
(06:47):
don't remember any part of this.
I'm going on what our friendtold me.
She finally noticed I was goneand went out on the porch to
check on me and I was allslumped over in my jazzy chair.
She couldn't get me awake soshe got the jazzy turned around
and back inside and of coursethis was early in the morning so
(07:11):
it was too early to call anyoneto come help her get me in bed.
She just sat there holding meup until time came for her to
call Jesse and Randy and them tocome get me up, and I don't
remember any of that.
Speaker 2 (07:27):
Yeah, because we thank you first of all.
Thank you First of all.
It doesn't matter what time ofthe morning.
I totally get why you wouldn'twant to wake your children, but
I'm sure you've already beenscolded by them more than once.
Yeah Listen, linda needs tocall because that's you're like
(07:47):
twice her size, you know, forher to hold you up.
Speaker 1 (07:53):
Basically what happened was the drugs mixed
each other and interacted witheach other, and you were kind of
yeah, you were kind of not that.
Speaker 2 (08:08):
I know what stone feels like, because I've you
know.
I've never done that, but itwas, you were not coherent.
Speaker 1 (08:16):
I wasn't responsive or nothing, yeah, and then just
a little bit here, recently theytook me off the valium and put
me on another med and the samething happened again, but this
time the hospice nurse was here,and I don't remember any of
(08:37):
this either, I'm going off whatthey told me but the hospice
nurse was here and the hospiceaide was here.
But the hospice nurse was hereand the hospice aide was here,
and they ended up having to giveme Narcan to get me because I
was overdosing.
Speaker 2 (08:52):
Well, the mixing of the two right.
Speaker 1 (08:54):
Yeah.
Speaker 2 (08:54):
Yeah, yeah, yeah.
Speaker 1 (08:56):
And then that just happened again last week.
Speaker 2 (08:59):
Yeah, yeah, you've had to run for it this summer.
Speaker 1 (09:02):
I had to run, you know.
Speaker 2 (09:03):
Yeah, but I'm glad you mentioned Narcan because we
talked about this in our Zoommeeting.
When I was going to get Jim'smedicine one day when we were in
New Orleans area, thepharmacist said you know, we
need to come over and she's likedo you have Narcan at your
house?
Just because I guess she knewthe medicines, what they were
(09:24):
for treating somebody with Lewybody, and she said I'm sending
home with Narcan, so you justhave to ask for it and I mean
you can.
Somebody looked it up, you canorder it on Amazon.
You can even get it like thatfood delivery.
I don't remember food deliverypeople.
You know what I mean.
Like that, I don't know.
I don't remember food deliverypeople.
You know what I mean.
Yeah, like that, I don't know,I don't do it, so I don't know
(09:45):
the name of it.
But just, I hope you foreverybody who has Lewy body.
Yeah, you need to have Narcan inyour house and it's literally
just a spray.
You stick up your nose andsquirt it like you're squirting
that stuff when you have stuffynose.
Speaker 1 (10:03):
Yeah, Kind of like I have now, and what it does is
like it's like I'm on pain pillsbut, it takes the pain pills
affects the way it takes.
It just takes everything away,you know, and brings you to.
Yeah, everyone should have someof that, yes, on hand, just in
(10:23):
case I think it's n-A-R-C-A-N,right I?
Think so.
Speaker 2 (10:28):
I'm looking it up while we're talking.
Yes, narcan nasal spray.
Yeah, so when you go to get thenext round of meds those of you
listening if you're a caregiveror with Louie talk to the
pharmacist and they're going togive it to him.
Now, I know there may be a fee,but I didn't have to pay
(10:53):
anything.
So I think it's.
You know, depending on themedicine you take, I can imagine
you can ask for it for free,but when you do, you remember
them doing it, sticking up yournose and doing it.
Speaker 1 (11:03):
I don't remember any of it.
Speaker 2 (11:04):
Do you remember coming out?
Speaker 1 (11:05):
it, sticking up your nose and doing it.
Speaker 2 (11:06):
I don't remember anything.
Do you remember coming out ofit?
Speaker 1 (11:08):
Nope.
Speaker 2 (11:10):
Oh, so you kind of had to sleep it off.
Speaker 1 (11:12):
I did yeah.
Speaker 2 (11:13):
Yeah.
Speaker 1 (11:14):
And see that happened just again last Tuesday, but
they chose not to give me Narcanbecause she said she could tell
I was coming out of it.
Speaker 2 (11:23):
Yeah, but what did you just start?
Yeah, what did you just start?
What medicine did you juststart?
Uh, that's the one that.
Yeah, whatever it was, you toldus in the zoom you were going
to take, like one oh yeah onemilligram or something for
anxiety anxiety.
Xanax.
(11:46):
Hey, linda, linda made it onthe podcast.
Speaker 1 (11:49):
She's real yeah she's in there cooking dinner.
Speaker 2 (11:53):
She's real.
Speaker 1 (11:54):
Yeah, it was Xanax, I just started.
Speaker 2 (11:57):
Yeah, but you told us you were taking like one, like
the one milligram, and we werelike what?
You don't start that high.
Speaker 1 (12:05):
You prescribed me one milligram.
And so what we did?
We, instead of taking, and yousupposed to take it twice a day,
but instead in the morning Iwas taking half of one and then
at night I would take a full one.
Well, they told me I was okaysince nothing had happened.
So now I take a full one in themorning and a half one at night
(12:27):
.
Speaker 2 (12:28):
Does it knock you out ?
Yeah, yeah, yeah.
Speaker 1 (12:33):
I don't sleep real quick, I just don't stay asleep.
Speaker 2 (12:36):
Okay, what about if you took like a quarter of a
pill?
Speaker 1 (12:43):
Well, that's a small.
It'd be hard to get a quarter.
Speaker 2 (12:45):
Yeah, so last week, earlier in the week, you had
because today is saturday, we'rerecording on a saturday, um so
earlier in the week you took theone and it it tuesday yeah, and
then my morphine, and theyclashed and put me out again.
(13:07):
Okay, so now you're.
Do you not take the morphine?
Speaker 1 (13:11):
I take the morphine at bedtime.
Speaker 2 (13:13):
Okay, and the Xanax still.
Speaker 1 (13:15):
And the Xanax.
Speaker 2 (13:16):
Okay, I'm surprised that they're letting you do that
, at least a full dose.
You know it's going to knockyou out.
I mean, if it's going tointeract with I can see you
wanting to take going to knockyou out, I mean if it's going to
interact with.
I can see you wanting to take itto knock you out.
But how long do you sleep whenit knocks you out?
About an hour and a half,that's it.
(13:37):
That's it.
And then when you wake up, areyou?
I'm up for about an hour, hourand a half, yeah, but are you?
Do you know that you're wakingup?
Speaker 1 (13:48):
No, or you're groggy.
No, I'm groggy, but I do wakeup and do just fine.
Speaker 2 (13:53):
You just stay in your chair and then ride it out.
Speaker 1 (13:56):
Take the dogs out a couple cigarettes.
But here lately I've beengetting up like at 3.30 in the
and staying up, not going, notbeing able to go back to sleep.
Speaker 2 (14:13):
I bet you, if you go on Facebook and be like, hey,
it's 3, 30, I'm up, you're gonnahave a lot of friends on there.
Well, all right, our Europefriends are definitely up.
But no, but because there's I,I think we you talked about this
one of the Zooms and somebodysaid, yeah, I was up, and then I
went and said I was up.
So I'm like, if you post,there's people out there that
(14:35):
can't sleep like you.
Speaker 1 (14:36):
Eddie Massey is normally up.
Speaker 2 (14:41):
Yeah, yeah, see, I don't, Jim really didn't.
Once he went to sleep he didn'treally wake up to go to the
bathroom and all.
Speaker 1 (14:52):
Yeah.
Speaker 2 (14:53):
Because he had that prostate, got to go all the time
, issue Right, but he didn'twake up like you.
But you are the Energizer bunny, my friend.
You were down three times sinceJune.
You just amaze me, you amaze me.
(15:13):
So we wanted the first episodeof the fourth season technically
, if we're going by the monththat we started just to be a
catch-up on how Curry's beendoing, although before we
recorded he did catch his golfcart on fire.
Yeah, doggone it.
(15:35):
You were probably like hittingthe pedal to the metal on the
floor.
Speaker 1 (15:39):
Yeah, is that what you were doing had two new tires
stuck on it the other day andwe took it for a spin today and,
dadgummit, if it didn't catchfire, it got an electrical short
on it.
Someone else will figure it out.
Speaker 2 (15:55):
All right, so it was an electrical short, not you and
your popping wheelies and agolf cart.
Speaker 1 (16:04):
No, it was electrical short.
Speaker 2 (16:05):
That's the story you're sticking with, sir.
Speaker 1 (16:08):
Yeah, it burned the parts that I just put in it too.
I just put a new board in itand it burned that board up.
Speaker 2 (16:15):
Well, at least you have your jazzy as a backup.
Exactly, yeah, did you get anew jazzy?
No, no, you're not getting anew one.
Speaker 1 (16:25):
No, we put money in that one.
I can't get a new.
I can't get one while I'm onhospice.
If I went off hospice theywould give me one, but I can't
see going off hospice just toget a new jasmine.
Speaker 2 (16:38):
Yeah.
Speaker 1 (16:39):
As long as this one's working now.
Speaker 2 (16:41):
I mean it's great that you and Linda have all this
help with hospice.
That's why, if you're listeningfor the first time, please go
back and find the episode.
There's a three-part episode onhospice, and it's not just for
when you're the last week ofdying because you've been on
hospice.
For how long?
Speaker 1 (17:02):
I've been on there about six months now.
Speaker 2 (17:05):
Right, right, it's just to give you more help.
Yeah, palliative care, it'sjust to give you more help.
Yeah, like palliative care is totry to get you stronger and
like if you're coming home fromrehab and those type of things.
But for people with Lewy bodyyou're eligible for hospice and
I just you know, I guess becauseJim stayed home with me and
(17:28):
like you're home and pretty mucheverybody, almost everybody.
There's a couple people in ourZoom groups whose spouse is in a
facility, but my brother justtold me that my mom now has
dementia.
Doesn't know anybody.
She's in a facility where she'sdiabetic and they don't give
(17:50):
special meals for diabetics.
I'm like, first of all, that'sdoesn't seem legal or right and
um, and she doesn't.
It's an assisted living.
You know, we've been payingextra to get her more services
and they'll say, oh, she didn'tget out of bed for breakfast,
(18:12):
you know, so she skips breakfastand they do her blood sugar and
it's like 60 kind of thing.
But um, donna, london, hishusband paul had louis um told
me her mom is in an assistedliving and when you get to the
point like my mother is, whereshe doesn't know anybody,
(18:34):
they're not going to be able toget her, make her better, that
she's eligible for hospice in afacility.
And I guess I was like, reallyyour mom's like I'm just sharing
with everyone, you know, if youhave somebody that's in an
assisted living, check into it.
I'll report back, because Irelayed this to my brother who
(18:57):
does her medical but apparentlythe place is shorthanded.
So I'm like you can't just, oh,she doesn't want to get out of
bed.
I'm like you can't just, oh,she doesn't want to get out of
bed.
I'm like leave the tray thereand when she gets hungry she's
going to go, you know, and getthe food.
So yeah, it's just, that's beena lot, because my brother has
(19:23):
the power of medical, you know,the medical power of attorney.
Speaker 1 (19:28):
I tell you, the hospice nurse asked me the other
day.
They were well, it wasn't thenurse, it was the caseworker.
I have the caseworker.
He comes by, preacher comes by,the nurse comes by and the aide
comes by.
And anyway, we were talkingabout it the other day and I
(19:49):
gave her a bunch of new bookletsand and he said, well, how many
people in your group are inhospice?
And I said maybe one or two,that's about it.
She was shocked, right.
She said you're kidding me.
She said they should all be onhospice.
Yep, yeah, I agree.
I mean this hospice that I'mhooked up with Hometown Hospice
(20:15):
they have just gone aboard aboveand beyond.
Speaker 2 (20:18):
Yeah, but say you, even though we did that
three-part thing on hospice andwe're trying to destigmatize the
word hospice, because people,when I told my brother that my
mom's eligible, he's like, oh, Ithought hospice was only when
it's to the end.
I'm like that's everybodythinks that and it's not true.
(20:38):
So yeah, I mean it's just, ifyou're listening and you have
Lewy body or you're a caregiver,you're a caregiver.
Curry's wife, linda, wouldnever get on.
I'm going to talk for her.
I'm going to talk about hermeaning that you have all this
help now and it's helping herwith other people helping you.
(21:00):
It gives her because you'retwice her size oh yeah and it's
just, I've seen how you talkabout.
You just said everybody that'scoming in and giving you help.
And it's just, I've seen howyou talk about.
You just said everybody that'scoming in and giving you help,
and it's yeah just reach out.
Speaker 1 (21:21):
They've been just really good to us, I guarantee
you yeah.
Speaker 2 (21:25):
Yeah, and just make sure it's not a, because I am
thankful that Jim's and myfamily's experience with hospice
is abnormal.
But when we interviewed Angiethe three-part hospice we did I
think that was back in July,august of 2022, she said go with
(21:50):
a smaller private hospiceinstead of like I did, because
we literally finished thatpodcast the three-part podcast
one day and I had somebody comein and interview the next day
and say we didn't need hospice,yet I was trying to get my name
in the system and then the nextday we needed them hospice, yet
(22:11):
I was trying to get my name inthe system and then the next day
we needed them and they were acompany that has a base in many
states.
The big ones like that it's toobig.
You can't be personalized andyou clearly have one.
That's not that.
You know what I mean.
So if I gave any advice, itwould be.
If I had more time, I probablywould have practiced what I
(22:34):
preached, but it just happenedso fast with Jim and then you
all know, if you've beenlistening, like the last day and
a half of his life, we got anew hospice and the people you
just said were coming in and mykids were like what's going on?
I'm like this is what it wassupposed to be the last five
days.
Yeah, but you just thinkhospice is for when you're home.
(22:58):
I'll report back about gettinghospice to go in for my mom,
because they don't even test herblood sugar Really and she's
diabetic.
Speaker 1 (23:10):
Well, the fact that they don't have test her blood
sugar, really, and she'sdiabetic.
Speaker 2 (23:13):
Well, the fact that they don't have a special meal
plan for diabetics- yeah.
I told my brother, I'll tellyou what the time.
Speaker 1 (23:26):
I fell and they took me by ambulance to the hospital.
I saw my doctor and we wereleaving there and she's the one
that said you don't need me, youneed a hospice, because I was
falling all the time.
You know, and it's been, I'vegot nothing but praise to give
(23:50):
to this hometown hospiceWonderful.
Speaker 2 (23:54):
Just the name makes you feel good Hometown.
I don't remember, was it beforewe recorded the last in June
that you were.
You banged up your knee.
Or is that a separate fall?
Speaker 1 (24:06):
No, that was the fall .
Speaker 2 (24:08):
Yeah, okay, yeah, so you've been.
You've been through it the lastcouple months.
Speaker 1 (24:13):
Yeah.
Speaker 2 (24:15):
And here you are kicking back.
He's making me record at 8o'clock at night, but I'm hoping
as happens most episodes, whenwe're done recording, that you
crash.
Yeah, so I'm hoping you sleepall night.
Speaker 1 (24:33):
I probably will.
It's been an eventful day.
Speaker 2 (24:34):
Yeah, so Narcan, everyone ask your pharmacist for
, and look into hospice anddon't call it something else.
If you want Like they need tocall it something else, Like
hospice can still be the lastcouple days, but there needs to
be, like I don't know,pre-hospice or something.
Yeah, I mean, look at you,You're on hospice and here you
(25:00):
are recording a podcast.
Speaker 1 (25:04):
Yeah, yeah, but I do have days.
I have days when there's no wayI could do this, you know, yeah
, but I always seem to bounceback.
Speaker 2 (25:18):
Yeah, which is amazing, yeah, so the last thing
we're going to talk about is sotoday is September 7th, 2024.
I didn't think about that.
2024.
I didn't think about that.
And in one week, about 50people are going to be going to
(25:39):
a little old town called Caney,kansas, to meet up.
It's our first annual I thinkever anywhere meetup of Lewy
body patients and theircaregivers, so it's going to be
pretty exciting.
I know you're excited about it.
Speaker 1 (25:59):
I'm really looking forward to it.
I really am.
Speaker 2 (26:01):
Because your daughter , lorraine, and I and Becca are
organizing all the food and allthe other things that are going
to go with it to make it like anamazing day for everybody.
And they they said how excitedyou are.
Speaker 1 (26:15):
Yeah, I really am, I'm, I'm really looking forward
to the next charity.
Speaker 2 (26:20):
Now you're going to take your board next Friday.
Speaker 1 (26:22):
There's a lot of people are going to be in on
Friday.
Speaker 2 (26:24):
Yeah, yeah, and I, me and seven other people that are
coming rent it a place inBartlesboro.
Bartlesboro.
Oh, I don't like that place, doI?
Speaker 1 (26:39):
Yeah, it's Coffeeville.
You didn't like.
Speaker 2 (26:42):
Oh, okay, you saw me.
I was like a little panicked.
I'm not going to Coffeevillemaybe that's where.
So I rented this ranch when youhave seven or eight people
chipping in.
Most of us are coming inThursday, also A couple people
on Friday.
You can't get tired out.
(27:04):
On Friday, though, I'm going tocall Linda and say don't let
them get tired out, because youneed to save all your energy.
Hopefully you'll be able tosleep the night before.
Speaker 1 (27:16):
Yeah.
Speaker 2 (27:17):
Because I found Jim, like when we flew the last time
we flew, like we were inseparate rooms, I didn't realize
he pretty much was up all nightbecause he was thinking about
getting ready to fly.
Yeah, it's going to be prettypowerful out five hours or so,
(27:40):
yeah 11 to 7.
Well, mr, we're not going until7.
We're going to say 4-ish, 5-ish, because people are going to
get hungry and want dinner.
People are going to get tired.
Yeah, they're going to be tiredand we're going to have lunch
for them.
But just, I imagine people andyou can't go nine hours.
(28:04):
That's just a lot for you.
I think it'll organically justkind of people are going to need
to go lay down and if you know,I think so too yeah, and if
they want to come back to theranch or I feel I feel like I'm
rich come back to my ranch.
(28:25):
The one that I wanted to rentwas three times the price is the
one.
I rent it and had a pool andand I was like I don't think we
should all be chipping in forthat money.
But yeah, it's going to bepretty exciting.
A lot of people I mean I wantto say 70% of the people are
people that come to our Zoom allthe time, and then the other 30
(28:47):
are people that are on ourjourney page.
So we hope.
Oh, you know what I found foryou my selfie stick, because
Curry wants to.
You know, he's like we need tobe live.
I'm like I can't be live thewhole time because you'll just
hear noise and it'll drive menuts, but every now and then you
said you want to be like golive and say hey.
Speaker 1 (29:08):
Go Facebook live, yeah.
Speaker 2 (29:09):
Yeah, just go live for a few minutes.
So last night before I fellasleep I was like I have a
selfie stick somewhere Becausethat would be great for you.
You know what I mean?
Yeah, and you can just hold itout.
Speaker 1 (29:21):
I didn't even think about that.
Speaker 2 (29:22):
Yeah, yeah, yeah yeah , so every now and then you can,
you know, and we're going to do, um, they film.
People try really hard to getthe, the cameraman, to come out
and help with filming, like I'mgoing to do, like many
interviews with people whilewe're there, which we'll put on
facebook and or use uh for forthe podcast.
(29:47):
And curry wants to record a nota live.
we can't do a live podcastbecause I don't know how to do a
live podcast.
But to record a podcast I don'tknow.
We'll got to figure out how.
If we can go to a separate room, maybe I don't know Because
everybody would have to be quietand I just think it's going to
be a lot of happy tears when,because you know how it was.
Speaker 1 (30:10):
Oh yeah.
Speaker 2 (30:10):
I just watched a video of Jim running up to give
you a hug and you're like whatdo you know?
How are you?
And he's like I'm you know.
He finally said you were likehow are you doing?
He's like I'm great now thatI'm here giving you a hug,
basically yeah, yeah, so thatwas pretty amazing.
So next time we record, we'lltalk about the whole experience
(30:37):
that we had with Candy Kansas,and we do have two cameras, so
we're going to hope to record.
Speaker 1 (30:46):
You know what I think is neat?
We've got some widows who havelost their husbands to Louie and
who have stayed in our journeygroup and the roller coaster
group who are coming to the meet.
I think that's just neater thanever.
Speaker 2 (31:04):
Yeah, and you know Carla's coming right.
Carla is in the documentarywhich you haven't been able to
hug yet.
So, yeah, and I was justtalking to Dory, who's running
the Saturday Spouses SupportGroup now, which she does every
other week it's just spouses andthe other week it's any
caregiver spouses and if youtake care of your father or your
(31:27):
mother or your cousin oranybody.
So we've added that to theSaturday mix-up and she always
posts something in the morning,which one?
It is that quick, did you seeme?
I just went whoosh, whoosh.
Oh, okay, I got it, catching it, I caught it and threw it back
(31:53):
into my head, right?
She said there are widows thatgo back there and share every
now and then, not every week,but every now and then, because
it's just.
You know, we're the other sideof it right now.
Yeah, side of it right now andthere are people who, so we do
(32:14):
the spouse's widow Zoom onTuesdays.
There's six of us now six orseven, and there are some that
just once their spouse passed,they just took themselves out of
everything Louis body, which Itotally can understand.
And then there's some that stayin and continue to help
everybody on the journey, likegrabbing somebody's hand and
(32:38):
walking them along the way,because I think that's what
people need to do with thisdisease, because we all know
that the people on our Zoom aresmarter than the average bear.
Speaker 1 (32:52):
Yeah.
Speaker 2 (32:53):
They're living it, so they know Not that they know
more than doctors, but it's justSometimes they do.
Well, it's good to share witheach other and talk about.
You guys all have the same,some of you have the same
symptoms.
So, anyway, a week from today,it's going to be pretty awesome.
Well, definitely you'll hearabout it.
(33:14):
Curry will have his littleselfie stick now, which, now
that I say that, okay, I don'tknow what to do with it.
I'm leaving tomorrow to start mydrive to Caney from
Philadelphia area and if you saw, you busted on me on Facebook,
(33:34):
because last time I went tovisit him, it took us 12 days,
even though we went from NewOrleans to Rio Medina, texas.
But that was, and if you'vebeen listening, you know that we
were in my RV and Jim couldn'thandle more than an hour and a
half to two hours of the noise,and Jim couldn't handle more
(33:54):
than an hour and a half to twohours of the noise.
But this time we're going totake our time and we're going to
do sightseeing and see somepeople along the way that are in
our groups.
So I'll wind up at yourdoorstep on Thursday.
That'll work, that'll work, butanyway, we just wanted to give
everybody a quick update onwhere things are and welcome
(34:14):
back to season four of yeah,thank you all again for hanging
with us.
Yep, yeah, I think everybodyunderstands.
Especially, you post.
Everybody knows what's going onwith you because you always
post about it, which is the mainreason that I reached out to
you to begin with, because ofhow open and honest you are in
sharing what's going on with you.
Speaker 1 (34:35):
Yeah.
Speaker 2 (34:36):
You know, people really do appreciate that.
Speaker 1 (34:42):
Okay, folks, that's all we 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.
We'll sure try to do like us todiscuss on a future episode, or
you can ask any questions youhave.
We'll sure try to do our bestto get you the best answer, and
I want to thank you again forbeing with us and I'm looking
forward to meeting everyone nextSaturday.
Speaker 2 (35:03):
Yep, yep, hopefully next year there'll be more
people.
Yeah, although 50 is good, Ithink it is.
You know what I mean.
It's just small enough.
Big enough, yet small enough,you know that people can.
It won't be.
It's not like 300 people kindof thing, right, so we're happy
with that number.
Anyway, remember that Curryusually posts the link of the
(35:28):
podcast and both the Lewy BodyRoller Coaster podcast and sorry
I lost my place and our Journeywith Lewy Body page and if
you're interested in helping asa volunteer or an advocate,
please send us an email atlewybodyrollercoaster at
gmailcom, because the morepeople who reach out, the more
people we can help.
Speaker 1 (35:48):
Yeah, and if you want to learn how you can be a
supporter of the podcast, yousee the episode notes as we post
the information on that there.
Speaker 2 (35:55):
Okay, folks, thanks again for joining us this week
yep, and keep listening, keepsharing, because this season I
want to.
I want to hit the hundredthousand download mark, yeah,
which I think we'll be able todo in the next 10 months, until
next next week.
This is Linda.
Speaker 1 (36:11):
And Curry signing off .
welcome back podcast family.
Speaker 1 (00:14):
Yeah, welcome back y'all just another quick shout
out to everyone for yourcontinued patience and support
yeah, we want to to thank youall for being so patient and
supportive as we get thesethings off like we're trying to.
We enjoyed you all letting ustake the summer off, but now
we're going to get back to itjust like we were before.
(00:35):
We just enjoyed the summerbreak.
Speaker 2 (00:38):
Yeah, it's been nice that we knew we needed to just
take that break, kind of liketeachers need to take breaks.
So we appreciate everyone.
If you've been following along,you know that it's a good thing
we didn't have to work thesummer because Curry's going to
just share about what happenedduring the summer.
Speaker 1 (00:58):
Oh yeah.
Speaker 2 (00:59):
So again, as we always try to remember to say
that before we start today'sepisode, we want to remind all
of our listeners that it'simportant to us that you all and
the medical community caresfrom those affected with this
disease.
That's why we make this.
Hopefully doctors are listeningor you're sharing so they can
(01:19):
hear it from the person withLouie.
Please feel free to share withyour doctor.
Tell them about the podcast.
I mean, you just put Louie BodyRoller Coaster.
The podcast comes right up inGoogle.
It's the first thing and we allknow it's important for them to
listen to people who are not ina doctor's office and super
(01:43):
show timing.
So anyway, if you can share,that would be awesome.
Speaker 1 (01:49):
Yeah, and also I want to remind you all that if you
want to be a guest on the showand share your story in hopes of
helping others, just contactLinda Zappula or myself through
Facebook Messenger or throughour email, which is
louiebodyrollercoaster atgmailcom.
We'd love to have you atgmailcom.
We'd love to have you on theshow.
Speaker 2 (02:08):
Yep, and now that we're back in full swing, just a
reminder for those of you thatare Patreon and GoFundMe
supporters we really appreciateit and we don't use any of that
money for us Just to helpmaintain the podcast.
And even though we don't recordduring the summer, there's
still monies we have to put outto stay active on the BuzzFeed
(02:35):
Sprout and we try to help peoplewith Lewy Body who need help,
and we're also now gearing upfor this big event, so we'll
talk about that in a coupleminutes.
So thank you all for supportingus.
Speaker 1 (02:50):
Yeah, and as a reminder, folks, I want to tell
you all, or remind you all, thatwe're not giving out medical
advice.
We're just sharing our open andhonest feelings and thoughts as
we live with Lewy Body DementiaAlso.
Folks, like I always do, I wantto give a few shout-outs to a
couple of supporters, and thefirst one is Lori Burdue-Krigg
(03:14):
and Anne-Marie and James Hoogieand all the others that have
helped us along the way.
Y'all make this thing what itis.
Speaker 2 (03:21):
Yeah, yeah, and I think we hit 60 000 downloads
recently, um and 100, we'verecorded 134 episodes, which is,
that's a big number wow, yeah,I didn't realize you've been
that many yeah, well, we startedin september of 2020.
(03:41):
Like it, our first podcast wentlive the same week that Robin's
Wish was out, which we didn'teven know that that was
happening.
So this, technically, is ourfourth season, so to speak, of
recording the podcast.
So we're going to keep chuggingalong, as you know, the best we
(04:05):
can, um, but anyway folks, it'sjust me and linda this week, so
let's, let's get this thingstarted.
Speaker 1 (04:15):
Uh, we call these things our fireside chats when
it's just the two of us.
Speaker 2 (04:19):
I think I already started.
Is that why you were looking atme, giving me that look, yeah,
like what are you doing anyway?
So, my friend, how was yoursummer?
Any visits to get free foodanywhere?
Speaker 1 (04:34):
uh, I mean, I tell you, I've had people send me
boxes of zero candy bars, whichare my favorite candy bars.
I had them send me a whole bunchof Reese's Butter Cups, which
are my favorite peanut buttercups, as you know, because I ate
yours.
If you left here, that's right.
But yeah, it's been a veryeventful summer for me.
(04:59):
I started the summer off.
I started the summer off.
I was walking from our livingroom going to the restroom and I
had to walk through the bedroomand I was using my big walker,
my stand-up walker, and as I gotinto the other bedroom, I took
(05:20):
a few steps and I just for somereason started falling backwards
and ended up back here in theliving room floor.
And thank God Linda had movedthe cedar chest that was sitting
there, or else I would have hitmy head on it, but they
couldn't get me up off the floor.
Jesse and Linda and Randy, theyall tried, so they had to call
(05:44):
an ambulance.
Well, the ambulance took me tothe hospital and I was in.
They all tried, so they had tocall an ambulance.
Well, the ambulance took me tothe hospital and I was in there
for three days with them runningtests on me and stuff like that
, but they never could reallyfind anything wrong, and so that
was one time, and then, morerecently, I was taking Valium to
(06:13):
calm me down with my what's theword Linda.
Speaker 2 (06:24):
What to take.
Speaker 1 (06:25):
An evalium for your anxiety, anxiety, yep, yep, yep
For my anxieties and I wastaking it, and then I was also
taking another med.
I can't remember the name of it, but anyway, I went out on the
porch one morning about 3o'clock with the dogs and I
(06:47):
don't remember any part of this.
I'm going on what our friendtold me.
She finally noticed I was goneand went out on the porch to
check on me and I was allslumped over in my jazzy chair.
She couldn't get me awake soshe got the jazzy turned around
and back inside and of coursethis was early in the morning so
(07:11):
it was too early to call anyoneto come help her get me in bed.
She just sat there holding meup until time came for her to
call Jesse and Randy and them tocome get me up, and I don't
remember any of that.
Speaker 2 (07:27):
Yeah, because we thank you first of all.
Thank you First of all.
It doesn't matter what time ofthe morning.
I totally get why you wouldn'twant to wake your children, but
I'm sure you've already beenscolded by them more than once.
Yeah Listen, linda needs tocall because that's you're like
(07:47):
twice her size, you know, forher to hold you up.
Speaker 1 (07:53):
Basically what happened was the drugs mixed
each other and interacted witheach other, and you were kind of
yeah, you were kind of not that.
Speaker 2 (08:08):
I know what stone feels like, because I've you
know.
I've never done that, but itwas, you were not coherent.
Speaker 1 (08:16):
I wasn't responsive or nothing, yeah, and then just
a little bit here, recently theytook me off the valium and put
me on another med and the samething happened again, but this
time the hospice nurse was here,and I don't remember any of
(08:37):
this either, I'm going off whatthey told me but the hospice
nurse was here and the hospiceaide was here.
But the hospice nurse was hereand the hospice aide was here,
and they ended up having to giveme Narcan to get me because I
was overdosing.
Speaker 2 (08:52):
Well, the mixing of the two right.
Speaker 1 (08:54):
Yeah.
Speaker 2 (08:54):
Yeah, yeah, yeah.
Speaker 1 (08:56):
And then that just happened again last week.
Speaker 2 (08:59):
Yeah, yeah, you've had to run for it this summer.
Speaker 1 (09:02):
I had to run, you know.
Speaker 2 (09:03):
Yeah, but I'm glad you mentioned Narcan because we
talked about this in our Zoommeeting.
When I was going to get Jim'smedicine one day when we were in
New Orleans area, thepharmacist said you know, we
need to come over and she's likedo you have Narcan at your
house?
Just because I guess she knewthe medicines, what they were
(09:24):
for treating somebody with Lewybody, and she said I'm sending
home with Narcan, so you justhave to ask for it and I mean
you can.
Somebody looked it up, you canorder it on Amazon.
You can even get it like thatfood delivery.
I don't remember food deliverypeople.
You know what I mean.
Like that, I don't know.
I don't remember food deliverypeople.
You know what I mean.
Yeah, like that, I don't know,I don't do it, so I don't know
(09:45):
the name of it.
But just, I hope you foreverybody who has Lewy body.
Yeah, you need to have Narcan inyour house and it's literally
just a spray.
You stick up your nose andsquirt it like you're squirting
that stuff when you have stuffynose.
Speaker 1 (10:03):
Yeah, Kind of like I have now, and what it does is
like it's like I'm on pain pillsbut, it takes the pain pills
affects the way it takes.
It just takes everything away,you know, and brings you to.
Yeah, everyone should have someof that, yes, on hand, just in
(10:23):
case I think it's n-A-R-C-A-N,right I?
Think so.
Speaker 2 (10:28):
I'm looking it up while we're talking.
Yes, narcan nasal spray.
Yeah, so when you go to get thenext round of meds those of you
listening if you're a caregiveror with Louie talk to the
pharmacist and they're going togive it to him.
Now, I know there may be a fee,but I didn't have to pay
(10:53):
anything.
So I think it's.
You know, depending on themedicine you take, I can imagine
you can ask for it for free,but when you do, you remember
them doing it, sticking up yournose and doing it.
Speaker 1 (11:03):
I don't remember any of it.
Speaker 2 (11:04):
Do you remember coming out?
Speaker 1 (11:05):
it, sticking up your nose and doing it.
Speaker 2 (11:06):
I don't remember anything.
Do you remember coming out ofit?
Speaker 1 (11:08):
Nope.
Speaker 2 (11:10):
Oh, so you kind of had to sleep it off.
Speaker 1 (11:12):
I did yeah.
Speaker 2 (11:13):
Yeah.
Speaker 1 (11:14):
And see that happened just again last Tuesday, but
they chose not to give me Narcanbecause she said she could tell
I was coming out of it.
Speaker 2 (11:23):
Yeah, but what did you just start?
Yeah, what did you just start?
What medicine did you juststart?
Uh, that's the one that.
Yeah, whatever it was, you toldus in the zoom you were going
to take, like one oh yeah onemilligram or something for
anxiety anxiety.
Xanax.
(11:46):
Hey, linda, linda made it onthe podcast.
Speaker 1 (11:49):
She's real yeah she's in there cooking dinner.
Speaker 2 (11:53):
She's real.
Speaker 1 (11:54):
Yeah, it was Xanax, I just started.
Speaker 2 (11:57):
Yeah, but you told us you were taking like one, like
the one milligram, and we werelike what?
You don't start that high.
Speaker 1 (12:05):
You prescribed me one milligram.
And so what we did?
We, instead of taking, and yousupposed to take it twice a day,
but instead in the morning Iwas taking half of one and then
at night I would take a full one.
Well, they told me I was okaysince nothing had happened.
So now I take a full one in themorning and a half one at night
(12:27):
.
Speaker 2 (12:28):
Does it knock you out ?
Yeah, yeah, yeah.
Speaker 1 (12:33):
I don't sleep real quick, I just don't stay asleep.
Speaker 2 (12:36):
Okay, what about if you took like a quarter of a
pill?
Speaker 1 (12:43):
Well, that's a small.
It'd be hard to get a quarter.
Speaker 2 (12:45):
Yeah, so last week, earlier in the week, you had
because today is saturday, we'rerecording on a saturday, um so
earlier in the week you took theone and it it tuesday yeah, and
then my morphine, and theyclashed and put me out again.
(13:07):
Okay, so now you're.
Do you not take the morphine?
Speaker 1 (13:11):
I take the morphine at bedtime.
Speaker 2 (13:13):
Okay, and the Xanax still.
Speaker 1 (13:15):
And the Xanax.
Speaker 2 (13:16):
Okay, I'm surprised that they're letting you do that
, at least a full dose.
You know it's going to knockyou out.
I mean, if it's going tointeract with I can see you
wanting to take going to knockyou out, I mean if it's going to
interact with.
I can see you wanting to take itto knock you out.
But how long do you sleep whenit knocks you out?
About an hour and a half,that's it.
(13:37):
That's it.
And then when you wake up, areyou?
I'm up for about an hour, hourand a half, yeah, but are you?
Do you know that you're wakingup?
Speaker 1 (13:48):
No, or you're groggy.
No, I'm groggy, but I do wakeup and do just fine.
Speaker 2 (13:53):
You just stay in your chair and then ride it out.
Speaker 1 (13:56):
Take the dogs out a couple cigarettes.
But here lately I've beengetting up like at 3.30 in the
and staying up, not going, notbeing able to go back to sleep.
Speaker 2 (14:13):
I bet you, if you go on Facebook and be like, hey,
it's 3, 30, I'm up, you're gonnahave a lot of friends on there.
Well, all right, our Europefriends are definitely up.
But no, but because there's I,I think we you talked about this
one of the Zooms and somebodysaid, yeah, I was up, and then I
went and said I was up.
So I'm like, if you post,there's people out there that
(14:35):
can't sleep like you.
Speaker 1 (14:36):
Eddie Massey is normally up.
Speaker 2 (14:41):
Yeah, yeah, see, I don't, Jim really didn't.
Once he went to sleep he didn'treally wake up to go to the
bathroom and all.
Speaker 1 (14:52):
Yeah.
Speaker 2 (14:53):
Because he had that prostate, got to go all the time
, issue Right, but he didn'twake up like you.
But you are the Energizer bunny, my friend.
You were down three times sinceJune.
You just amaze me, you amaze me.
(15:13):
So we wanted the first episodeof the fourth season technically
, if we're going by the monththat we started just to be a
catch-up on how Curry's beendoing, although before we
recorded he did catch his golfcart on fire.
Yeah, doggone it.
(15:35):
You were probably like hittingthe pedal to the metal on the
floor.
Speaker 1 (15:39):
Yeah, is that what you were doing had two new tires
stuck on it the other day andwe took it for a spin today and,
dadgummit, if it didn't catchfire, it got an electrical short
on it.
Someone else will figure it out.
Speaker 2 (15:55):
All right, so it was an electrical short, not you and
your popping wheelies and agolf cart.
Speaker 1 (16:04):
No, it was electrical short.
Speaker 2 (16:05):
That's the story you're sticking with, sir.
Speaker 1 (16:08):
Yeah, it burned the parts that I just put in it too.
I just put a new board in itand it burned that board up.
Speaker 2 (16:15):
Well, at least you have your jazzy as a backup.
Exactly, yeah, did you get anew jazzy?
No, no, you're not getting anew one.
Speaker 1 (16:25):
No, we put money in that one.
I can't get a new.
I can't get one while I'm onhospice.
If I went off hospice theywould give me one, but I can't
see going off hospice just toget a new jasmine.
Speaker 2 (16:38):
Yeah.
Speaker 1 (16:39):
As long as this one's working now.
Speaker 2 (16:41):
I mean it's great that you and Linda have all this
help with hospice.
That's why, if you're listeningfor the first time, please go
back and find the episode.
There's a three-part episode onhospice, and it's not just for
when you're the last week ofdying because you've been on
hospice.
For how long?
Speaker 1 (17:02):
I've been on there about six months now.
Speaker 2 (17:05):
Right, right, it's just to give you more help.
Yeah, palliative care, it'sjust to give you more help.
Yeah, like palliative care is totry to get you stronger and
like if you're coming home fromrehab and those type of things.
But for people with Lewy bodyyou're eligible for hospice and
I just you know, I guess becauseJim stayed home with me and
(17:28):
like you're home and pretty mucheverybody, almost everybody.
There's a couple people in ourZoom groups whose spouse is in a
facility, but my brother justtold me that my mom now has
dementia.
Doesn't know anybody.
She's in a facility where she'sdiabetic and they don't give
(17:50):
special meals for diabetics.
I'm like, first of all, that'sdoesn't seem legal or right and
um, and she doesn't.
It's an assisted living.
You know, we've been payingextra to get her more services
and they'll say, oh, she didn'tget out of bed for breakfast,
(18:12):
you know, so she skips breakfastand they do her blood sugar and
it's like 60 kind of thing.
But um, donna, london, hishusband paul had louis um told
me her mom is in an assistedliving and when you get to the
point like my mother is, whereshe doesn't know anybody,
(18:34):
they're not going to be able toget her, make her better, that
she's eligible for hospice in afacility.
And I guess I was like, reallyyour mom's like I'm just sharing
with everyone, you know, if youhave somebody that's in an
assisted living, check into it.
I'll report back, because Irelayed this to my brother who
(18:57):
does her medical but apparentlythe place is shorthanded.
So I'm like you can't just, oh,she doesn't want to get out of
bed.
I'm like you can't just, oh,she doesn't want to get out of
bed.
I'm like leave the tray thereand when she gets hungry she's
going to go, you know, and getthe food.
So yeah, it's just, that's beena lot, because my brother has
(19:23):
the power of medical, you know,the medical power of attorney.
Speaker 1 (19:28):
I tell you, the hospice nurse asked me the other
day.
They were well, it wasn't thenurse, it was the caseworker.
I have the caseworker.
He comes by, preacher comes by,the nurse comes by and the aide
comes by.
And anyway, we were talkingabout it the other day and I
(19:49):
gave her a bunch of new bookletsand and he said, well, how many
people in your group are inhospice?
And I said maybe one or two,that's about it.
She was shocked, right.
She said you're kidding me.
She said they should all be onhospice.
Yep, yeah, I agree.
I mean this hospice that I'mhooked up with Hometown Hospice
(20:15):
they have just gone aboard aboveand beyond.
Speaker 2 (20:18):
Yeah, but say you, even though we did that
three-part thing on hospice andwe're trying to destigmatize the
word hospice, because people,when I told my brother that my
mom's eligible, he's like, oh, Ithought hospice was only when
it's to the end.
I'm like that's everybodythinks that and it's not true.
(20:38):
So yeah, I mean it's just, ifyou're listening and you have
Lewy body or you're a caregiver,you're a caregiver.
Curry's wife, linda, wouldnever get on.
I'm going to talk for her.
I'm going to talk about hermeaning that you have all this
help now and it's helping herwith other people helping you.
(21:00):
It gives her because you'retwice her size oh yeah and it's
just, I've seen how you talkabout.
You just said everybody that'scoming in and giving you help.
And it's just, I've seen howyou talk about.
You just said everybody that'scoming in and giving you help,
and it's yeah just reach out.
Speaker 1 (21:21):
They've been just really good to us, I guarantee
you yeah.
Speaker 2 (21:25):
Yeah, and just make sure it's not a, because I am
thankful that Jim's and myfamily's experience with hospice
is abnormal.
But when we interviewed Angiethe three-part hospice we did I
think that was back in July,august of 2022, she said go with
(21:50):
a smaller private hospiceinstead of like I did, because
we literally finished thatpodcast the three-part podcast
one day and I had somebody comein and interview the next day
and say we didn't need hospice,yet I was trying to get my name
in the system and then the nextday we needed them hospice, yet
(22:11):
I was trying to get my name inthe system and then the next day
we needed them and they were acompany that has a base in many
states.
The big ones like that it's toobig.
You can't be personalized andyou clearly have one.
That's not that.
You know what I mean.
So if I gave any advice, itwould be.
If I had more time, I probablywould have practiced what I
(22:34):
preached, but it just happenedso fast with Jim and then you
all know, if you've beenlistening, like the last day and
a half of his life, we got anew hospice and the people you
just said were coming in and mykids were like what's going on?
I'm like this is what it wassupposed to be the last five
days.
Yeah, but you just thinkhospice is for when you're home.
(22:58):
I'll report back about gettinghospice to go in for my mom,
because they don't even test herblood sugar Really and she's
diabetic.
Speaker 1 (23:10):
Well, the fact that they don't have test her blood
sugar, really, and she'sdiabetic.
Speaker 2 (23:13):
Well, the fact that they don't have a special meal
plan for diabetics- yeah.
I told my brother, I'll tellyou what the time.
Speaker 1 (23:26):
I fell and they took me by ambulance to the hospital.
I saw my doctor and we wereleaving there and she's the one
that said you don't need me, youneed a hospice, because I was
falling all the time.
You know, and it's been, I'vegot nothing but praise to give
(23:50):
to this hometown hospiceWonderful.
Speaker 2 (23:54):
Just the name makes you feel good Hometown.
I don't remember, was it beforewe recorded the last in June
that you were.
You banged up your knee.
Or is that a separate fall?
Speaker 1 (24:06):
No, that was the fall .
Speaker 2 (24:08):
Yeah, okay, yeah, so you've been.
You've been through it the lastcouple months.
Speaker 1 (24:13):
Yeah.
Speaker 2 (24:15):
And here you are kicking back.
He's making me record at 8o'clock at night, but I'm hoping
as happens most episodes, whenwe're done recording, that you
crash.
Yeah, so I'm hoping you sleepall night.
Speaker 1 (24:33):
I probably will.
It's been an eventful day.
Speaker 2 (24:34):
Yeah, so Narcan, everyone ask your pharmacist for
, and look into hospice anddon't call it something else.
If you want Like they need tocall it something else, Like
hospice can still be the lastcouple days, but there needs to
be, like I don't know,pre-hospice or something.
Yeah, I mean, look at you,You're on hospice and here you
(25:00):
are recording a podcast.
Speaker 1 (25:04):
Yeah, yeah, but I do have days.
I have days when there's no wayI could do this, you know, yeah
, but I always seem to bounceback.
Speaker 2 (25:18):
Yeah, which is amazing, yeah, so the last thing
we're going to talk about is sotoday is September 7th, 2024.
I didn't think about that.
2024.
I didn't think about that.
And in one week, about 50people are going to be going to
(25:39):
a little old town called Caney,kansas, to meet up.
It's our first annual I thinkever anywhere meetup of Lewy
body patients and theircaregivers, so it's going to be
pretty exciting.
I know you're excited about it.
Speaker 1 (25:59):
I'm really looking forward to it.
I really am.
Speaker 2 (26:01):
Because your daughter , lorraine, and I and Becca are
organizing all the food and allthe other things that are going
to go with it to make it like anamazing day for everybody.
And they they said how excitedyou are.
Speaker 1 (26:15):
Yeah, I really am, I'm, I'm really looking forward
to the next charity.
Speaker 2 (26:20):
Now you're going to take your board next Friday.
Speaker 1 (26:22):
There's a lot of people are going to be in on
Friday.
Speaker 2 (26:24):
Yeah, yeah, and I, me and seven other people that are
coming rent it a place inBartlesboro.
Bartlesboro.
Oh, I don't like that place, doI?
Speaker 1 (26:39):
Yeah, it's Coffeeville.
You didn't like.
Speaker 2 (26:42):
Oh, okay, you saw me.
I was like a little panicked.
I'm not going to Coffeevillemaybe that's where.
So I rented this ranch when youhave seven or eight people
chipping in.
Most of us are coming inThursday, also A couple people
on Friday.
You can't get tired out.
(27:04):
On Friday, though, I'm going tocall Linda and say don't let
them get tired out, because youneed to save all your energy.
Hopefully you'll be able tosleep the night before.
Speaker 1 (27:16):
Yeah.
Speaker 2 (27:17):
Because I found Jim, like when we flew the last time
we flew, like we were inseparate rooms, I didn't realize
he pretty much was up all nightbecause he was thinking about
getting ready to fly.
Yeah, it's going to be prettypowerful out five hours or so,
(27:40):
yeah 11 to 7.
Well, mr, we're not going until7.
We're going to say 4-ish, 5-ish, because people are going to
get hungry and want dinner.
People are going to get tired.
Yeah, they're going to be tiredand we're going to have lunch
for them.
But just, I imagine people andyou can't go nine hours.
(28:04):
That's just a lot for you.
I think it'll organically justkind of people are going to need
to go lay down and if you know,I think so too yeah, and if
they want to come back to theranch or I feel I feel like I'm
rich come back to my ranch.
(28:25):
The one that I wanted to rentwas three times the price is the
one.
I rent it and had a pool andand I was like I don't think we
should all be chipping in forthat money.
But yeah, it's going to bepretty exciting.
A lot of people I mean I wantto say 70% of the people are
people that come to our Zoom allthe time, and then the other 30
(28:47):
are people that are on ourjourney page.
So we hope.
Oh, you know what I found foryou my selfie stick, because
Curry wants to.
You know, he's like we need tobe live.
I'm like I can't be live thewhole time because you'll just
hear noise and it'll drive menuts, but every now and then you
said you want to be like golive and say hey.
Speaker 1 (29:08):
Go Facebook live, yeah.
Speaker 2 (29:09):
Yeah, just go live for a few minutes.
So last night before I fellasleep I was like I have a
selfie stick somewhere Becausethat would be great for you.
You know what I mean?
Yeah, and you can just hold itout.
Speaker 1 (29:21):
I didn't even think about that.
Speaker 2 (29:22):
Yeah, yeah, yeah yeah , so every now and then you can,
you know, and we're going to do, um, they film.
People try really hard to getthe, the cameraman, to come out
and help with filming, like I'mgoing to do, like many
interviews with people whilewe're there, which we'll put on
facebook and or use uh for forthe podcast.
(29:47):
And curry wants to record a nota live.
we can't do a live podcastbecause I don't know how to do a
live podcast.
But to record a podcast I don'tknow.
We'll got to figure out how.
If we can go to a separate room, maybe I don't know Because
everybody would have to be quietand I just think it's going to
be a lot of happy tears when,because you know how it was.
Speaker 1 (30:10):
Oh yeah.
Speaker 2 (30:10):
I just watched a video of Jim running up to give
you a hug and you're like whatdo you know?
How are you?
And he's like I'm you know.
He finally said you were likehow are you doing?
He's like I'm great now thatI'm here giving you a hug,
basically yeah, yeah, so thatwas pretty amazing.
So next time we record, we'lltalk about the whole experience
(30:37):
that we had with Candy Kansas,and we do have two cameras, so
we're going to hope to record.
Speaker 1 (30:46):
You know what I think is neat?
We've got some widows who havelost their husbands to Louie and
who have stayed in our journeygroup and the roller coaster
group who are coming to the meet.
I think that's just neater thanever.
Speaker 2 (31:04):
Yeah, and you know Carla's coming right.
Carla is in the documentarywhich you haven't been able to
hug yet.
So, yeah, and I was justtalking to Dory, who's running
the Saturday Spouses SupportGroup now, which she does every
other week it's just spouses andthe other week it's any
caregiver spouses and if youtake care of your father or your
(31:27):
mother or your cousin oranybody.
So we've added that to theSaturday mix-up and she always
posts something in the morning,which one?
It is that quick, did you seeme?
I just went whoosh, whoosh.
Oh, okay, I got it, catching it, I caught it and threw it back
(31:53):
into my head, right?
She said there are widows thatgo back there and share every
now and then, not every week,but every now and then, because
it's just.
You know, we're the other sideof it right now.
Yeah, side of it right now andthere are people who, so we do
(32:14):
the spouse's widow Zoom onTuesdays.
There's six of us now six orseven, and there are some that
just once their spouse passed,they just took themselves out of
everything Louis body, which Itotally can understand.
And then there's some that stayin and continue to help
everybody on the journey, likegrabbing somebody's hand and
(32:38):
walking them along the way,because I think that's what
people need to do with thisdisease, because we all know
that the people on our Zoom aresmarter than the average bear.
Speaker 1 (32:52):
Yeah.
Speaker 2 (32:53):
They're living it, so they know Not that they know
more than doctors, but it's justSometimes they do.
Well, it's good to share witheach other and talk about.
You guys all have the same,some of you have the same
symptoms.
So, anyway, a week from today,it's going to be pretty awesome.
Well, definitely you'll hearabout it.
(33:14):
Curry will have his littleselfie stick now, which, now
that I say that, okay, I don'tknow what to do with it.
I'm leaving tomorrow to start mydrive to Caney from
Philadelphia area and if you saw, you busted on me on Facebook,
(33:34):
because last time I went tovisit him, it took us 12 days,
even though we went from NewOrleans to Rio Medina, texas.
But that was, and if you'vebeen listening, you know that we
were in my RV and Jim couldn'thandle more than an hour and a
half to two hours of the noise,and Jim couldn't handle more
(33:54):
than an hour and a half to twohours of the noise.
But this time we're going totake our time and we're going to
do sightseeing and see somepeople along the way that are in
our groups.
So I'll wind up at yourdoorstep on Thursday.
That'll work, that'll work, butanyway, we just wanted to give
everybody a quick update onwhere things are and welcome
(34:14):
back to season four of yeah,thank you all again for hanging
with us.
Yep, yeah, I think everybodyunderstands.
Especially, you post.
Everybody knows what's going onwith you because you always
post about it, which is the mainreason that I reached out to
you to begin with, because ofhow open and honest you are in
sharing what's going on with you.
Speaker 1 (34:35):
Yeah.
Speaker 2 (34:36):
You know, people really do appreciate that.
Speaker 1 (34:42):
Okay, folks, that's all we 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.
We'll sure try to do like us todiscuss on a future episode, or
you can ask any questions youhave.
We'll sure try to do our bestto get you the best answer, and
I want to thank you again forbeing with us and I'm looking
forward to meeting everyone nextSaturday.
Speaker 2 (35:03):
Yep, yep, hopefully next year there'll be more
people.
Yeah, although 50 is good, Ithink it is.
You know what I mean.
It's just small enough.
Big enough, yet small enough,you know that people can.
It won't be.
It's not like 300 people kindof thing, right, so we're happy
with that number.
Anyway, remember that Curryusually posts the link of the
(35:28):
podcast and both the Lewy BodyRoller Coaster podcast and sorry
I lost my place and our Journeywith Lewy Body page and if
you're interested in helping asa volunteer or an advocate,
please send us an email atlewybodyrollercoaster at
gmailcom, because the morepeople who reach out, the more
people we can help.
Speaker 1 (35:48):
Yeah, and if you want to learn how you can be a
supporter of the podcast, yousee the episode notes as we post
the information on that there.
Speaker 2 (35:55):
Okay, folks, thanks again for joining us this week
yep, and keep listening, keepsharing, because this season I
want to.
I want to hit the hundredthousand download mark, yeah,
which I think we'll be able todo in the next 10 months, until
next next week.
This is Linda.
Speaker 1 (36:11):
And Curry signing off .
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