0:06

welcome back podcast family yes

0:08

, welcome back y'all did you move your ? There's

0:11

something going on with your

0:13

computer where your mouth looks like it's moving and

0:15

you're , I know it does that

0:17

.

0:18

Oh my god , it's freaking me out , I'm

0:20

not saying a word and my mouth is moving

0:22

.

0:23

Right , there's something well , afterwards

0:25

we'll figure out . You just , can you see

0:27

it ? Yeah , okay

0:30

, I'm sorry everyone , it's just .

0:33

Remember I said a couple weeks ago yeah

0:35

, yeah , yeah , yeah , I thought it was a hallucination

0:37

.

0:38

Oh no , I can see it for sure . It's

0:40

very , it's

0:43

spooky actually . Now

0:46

I'm going to okay , we're going to move on

0:48

from that . And just for everybody that's

0:50

listening , we record on Zoom through

0:52

Zoom , so I can see Curry . Anyway

0:56

, curry . Just another

0:59

quick shout out to everyone for

1:01

your continued patience and support everyone

1:05

for your continued patience and support .

1:08

Yeah , we so . Thank you all for being so patient and supportive

1:10

with us as we get through these what's been some pretty trying

1:12

times to get this thing out , but we're

1:14

working on it , folks , yep .

1:17

Yeah , and that's what we're going to talk about today . But

1:20

as always , I try to

1:22

remind you everyone . It's

1:28

important to us that our listeners in the medical community

1:30

hears from those affected with the disease

1:32

. That's why we started this almost three years ago

1:35

now , isn't

1:37

that crazy ? Actually , coming up September

1:41

it'll be four years . But anyway

1:43

, please feel free to share the

1:45

podcast name . Just go to Google and

1:47

type in Lewy Body Roller Coaster Podcast

1:50

and it comes up . It's free

1:52

to listen to and

1:54

share with your doctors . Hopefully

1:57

they share with their nurses so people

1:59

can

2:02

know about the disease . But real quick , I wanted

2:04

to tell you that I

2:06

told somebody in the group . Sarah

2:08

came home from she's in nursing school right now

2:10

and she came home Friday and

2:12

she said can you come

2:15

here ? I want you to listen to something . So I

2:17

guess she recorded her

2:19

professor talking and

2:21

they talked about

2:24

Lewy body dementia . It was two sentences

2:26

and it said about Lewy body dementia . It was two sentences and it said , and it

2:28

said that Lewy body can be detected

2:30

with this CT scan oh

2:33

, lord , I know right

2:35

and she and I was like , did you raise your hand and tell

2:38

them ? And she's like mom , I'm not going to be

2:40

that person . I'm like I'll call your professor

2:42

right now and

2:44

now he's . So I'm not going

2:46

to call a professor , but I was . You know

2:48

, my blood was boiling . I'm like you've got to be kidding

2:50

me . And the two

2:52

sentences it said were not even .

2:56

Not even close .

2:57

It was just not . Yeah , it was very

2:59

frustrating , but anyway , that's why

3:01

. You know we don't

3:03

, we know we don't give medical advice , we

3:06

just share experiences . But doctors

3:09

and nurses , hearing from those that come on the podcast

3:11

, I think , is a

3:13

better educational experience

3:15

for them than reading a book , a paragraph

3:17

in a book . Yeah .

3:20

Anyway , and you know we've got some

3:22

people , linda , that have told

3:24

us that their doctor recommended them

3:27

listen to the podcast . Yeah , so

3:29

we know we're getting the word out there somewhere

3:32

somehow .

3:33

Yeah , yeah , that's all good .

3:35

Yeah . Also , I want to remind

3:37

you all that if you want to be a guest on the

3:39

show and share

3:42

your story in hopes of helping others show

3:44

and share your story in hopes of helping others , just

3:48

contact Linda Zipula or myself through our Facebook messenger or through our

3:50

email , which is louiebodyrollercoaster at gmailcom

3:53

. We'd love to have you on the show .

3:55

Yep , and as always , we post

3:58

a Patreon and GoFundMe links at

4:00

the bottom of the episode notes

4:02

and it's also above on

4:04

the announcement pages . And just

4:07

remember , karen and I don't use any of the

4:09

funds for ourselves . It's to defray

4:11

the costs of everything we got going on with

4:14

this podcast and helping others

4:16

.

4:17

Right , and part of that we're going to be talking about

4:19

today , about what's coming

4:22

up in September .

4:23

Yep .

4:24

Yeah . But , folks , as a reminder

4:27

, we're not giving medical advice . We're just sharing

4:29

our open and honest feelings and

4:32

thoughts as we live with Lewy body dementia

4:34

. So now I want to give a few shout-outs

4:36

to some of our supporters . This

4:39

week we've got Carol Moore , Sandra

4:42

Garrett , Barbara

4:45

and all of you folks who

4:47

make this thing possible for us . We

4:49

really appreciate each and every one of you all

4:51

. So now let's get this week started

4:53

. It's just me and Linda having

4:56

a fireside chat , as I call

4:58

them , when it's just the two of us .

5:00

Yeah , and we're not . Usually

5:03

and we've talked about this before usually we

5:06

have scripted questions

5:08

um for curry to follow

5:10

and for me too and for

5:13

our guests . But this time

5:15

we're not going to do that because I wanted

5:17

. Um curry's

5:19

been through a lot in their last since we recorded

5:22

last . Now , last time we recorded we

5:24

told them all about the september event . So

5:27

I guess september oh

5:29

, wow , my brain just went september , thank

5:32

you . September 14th 2024

5:35

. Um , we're doing our

5:37

first annual louis buddies

5:39

and caregivers meet up in caney , kansas

5:41

. Um , there's we . We post

5:44

a flyer at least once a week . It's

5:46

like a little poster that you can click on and it tells

5:49

you all the details .

5:51

I've been trying to post it every day .

5:53

Okay , Well , I'm going to add something

5:55

to it too . I'll talk to you about that later

5:57

, but this

6:00

way you can print it and it has all the details , so

6:03

you don't have to go looking for it on Facebook

6:05

. But since we recorded

6:07

last time my

6:10

friend Curry and

6:13

you can hear it in your voice you know , you can hear

6:15

that you're tired . You want to

6:17

share what happened to you last week

6:19

well

6:24

, yeah , last I

6:28

been falling

6:31

.

6:32

and then last Thursday I

6:36

fell reaching over to pick

6:38

up something here in the living room and

6:41

hit my head and then going

6:44

to through our extra bedroom

6:46

, I

6:48

fell and I hit my head and my knee and

6:53

Linda started taking me to the doctor that

6:55

day , but we decided to hold off till Friday

6:57

and just see how it was .

7:00

Now , in the meantime you

7:03

were , I'm just going to tell you what

7:05

you told me . You know , just to

7:08

help you out if you don't mind . You

7:12

said that you've been feeling on

7:15

edge , like you just need it . Oh yeah . My

7:18

anxiety was terrible yeah your anxiety

7:20

was terrible and the pain

7:22

in your legs and you weren't sleeping . So

7:24

what ?

7:28

I got my doctor to give me some

7:30

10 milligram Valiums

7:33

, because that's what they used to get

7:35

me from Texas up here , you know . Right

7:37

to calm you , for the trip To keep me calm

7:39

and it was working .

7:45

But you didn't take , you haven't

7:47

taken that every day . You

7:49

kind of just took it for those road

7:52

trips that you had to do . Yeah . I

7:54

just want everybody to know . It's not you

7:56

know . It'll make sense when he explains

7:58

a little more what happened .

8:00

Yeah . So anyway , I

8:04

fell Friday morning and

8:07

I was slurring my

8:09

speech real bad . And

8:11

I fell Friday morning and

8:14

Linda called our

8:16

grandson actually

8:20

our granddaughter's fiance , but we call him

8:22

our grandson over

8:25

to help get me up and he couldn't help get

8:27

me up so they had to

8:29

call an ambulance to get me

8:31

and the ambulance

8:34

took me over to the Coffeyville Hospital

8:36

and

8:38

that's where they run

8:40

MRIs and CAT scans and

8:42

X-rays and everything on

8:44

me that day trying to figure out what

8:46

was going on .

8:48

Yeah , and

8:51

Linda did record you , which

8:53

I saw on the video

8:55

.

8:56

Yeah , she recorded how I was talking

8:58

and all that .

8:59

Yeah , which was good , because we'd say

9:01

that all the time , if something

9:03

new happens , pick up your phone

9:06

and record it so you can show the doctor . And you

9:08

were out of it . You were , I

9:10

don't know how . You were getting up and walking , so

9:13

you took .

9:16

I was out of it because my legs wouldn't , my

9:19

arms wouldn't work . My legs wouldn't work

9:21

, nothing worked .

9:23

But you got to got

9:25

to be honest and tell them what you did with

9:27

your medicines .

9:30

Well , I did take a few extra Valium

9:32

.

9:33

Because the first one wasn't working

9:35

and you were like let me just take

9:38

another one and then take another one .

9:40

Oh , within and then it started

9:42

working .

9:44

That works pretty good you

9:46

know , so let me take more like

9:48

I said , I was falling , though , before I took the

9:50

valium yeah , yeah

9:52

, that's what we were talking about before we started recording

9:54

, because if well , um

9:57

, even

10:00

the doctor had said to you because they couldn't

10:02

figure out , you know what causing it , and

10:04

then you mentioned the Valium . So too much

10:06

of that .

10:07

The doctor came in and he was sitting

10:09

there on the floor and

10:12

he was talking to Linda , telling

10:14

her what was going on and what he

10:16

suspected and all that . And

10:19

he said but I just can't , there's

10:21

something there , I can't figure out what it is

10:23

. I can't , there's something

10:25

there , I can't figure out what it is . And

10:31

Linda said something like one thing we forgot to mention was it takes value . And

10:33

our doctor said well , there's the culprit

10:35

right there .

10:37

Do you see me nervously looking at you

10:39

like don't say what the doctor really said

10:41

?

10:41

I wasn't going to say what he really said

10:43

.

10:43

Say how he said it , but just say

10:45

the letter .

10:46

F .

10:46

What did he ?

10:47

say . He said there's our

10:49

effing culprit right there .

10:51

Yeah , I was like because when I love the

10:53

curse on this , we'll get banned . You

10:56

made me nervous . We should have talked about that

10:58

before . Yeah , because you

11:00

were only given that for

11:02

basically only that trip , or

11:06

if you had to take a long trip in the ride and

11:09

you were

11:11

just taking them and

11:13

you drugged yourself . I don't even know how you were walking

11:15

, because Linda shared the

11:17

video with me and

11:19

if this was a video podcast

11:22

we could show them . But

11:25

that's what you know . We

11:28

were all scared , like

11:30

you know . You've never been that bad

11:32

before .

11:34

No , I haven't , you know , and

11:36

I got to tell

11:38

you it didn't . It's not that

11:40

it scared me , but

11:44

I just couldn't figure out what was going on

11:46

. You know , like I said , I couldn't

11:48

move , my arms wouldn't work , my legs

11:50

wouldn't work . No one could

11:52

help me get up . You know , it's

11:55

really really different .

11:57

Yeah .

11:58

And then , of course , the doctor also

12:00

taking me

12:02

off three medications that

12:05

I've been on for a while .

12:07

And why ?

12:09

That could be part of the problem as well

12:11

. And what did you ask ?

12:13

Why ? Because if .

12:16

Because , like one of them , he's

12:19

taken me off gabapentin , because I've

12:21

been on it so long and apparently

12:24

it's not helping me anymore and

12:27

and then another one he's taking

12:29

me off of for the same reason . I'm

12:31

not . I'm not getting any benefit from

12:34

it but how do you know ?

12:35

the gabapentin is not working . Don't you take that

12:37

for your leg pains ?

12:38

I take it for my leg pain and it's just

12:40

not working okay , okay , okay .

12:42

So that's okay . You're just attributing

12:45

to your body is leveled

12:47

off in that , okay . Yeah , yeah

12:49

, yeah . And what are the other

12:51

two that they took you off of ? Uh

12:54

, uh sorry

12:58

if you don't remember what was it in the amitriptyline

13:01

?

13:03

yeah , yeah amitriptyline , oh

13:08

yeah , no caffeine did you hear

13:10

everyone ?

13:10

that's the rare , rare sighting

13:12

of linda . The

13:15

wife linda is probably standing right next to

13:17

you with that frying pan , isn't she ?

13:19

that's she getting a . Hit me if we .

13:20

If we ever do a video recording , she's got

13:23

to be standing off . All we see is a frying pan

13:25

.

13:27

But yeah , I've taken caffeine

13:29

pills for several years

13:32

and

13:34

he did tell me no more caffeine .

13:37

So now that you're home , do you feel like

13:39

pulling those three medicines

13:41

away ?

13:45

Well , we're just weaning me off one of them so far

13:47

.

13:48

Okay , okay .

13:49

We got another week to get me completely

13:52

off of it , and then we'll wean

13:54

me off of the other one after that , All

13:56

right , that's what I was getting to .

13:57

I was shocked . I'm like you just cold turkey

14:00

three , you know .

14:01

No , no , we're just doing weaning one

14:03

at a time . If something

14:06

goes wrong , we know what the problem was .

14:08

Right , yeah , well , good for that doctor

14:10

for doing that , making you wean

14:12

off of it .

14:13

But he did tell me you know no more caffeine

14:16

, and I've taken caffeine for years . Yeah

14:18

, he told me to throw my canes

14:21

away and just use my walkers yeah

14:24

, so pretty much what I'm doing yeah

14:27

, and you're .

14:28

You know , we're trying to make

14:30

them rest , for those listeners

14:32

, we're trying to tell them to rest

14:34

. I mean , you're doing

14:37

so much better . I

14:39

think it was because your granddaughter bought that treat

14:42

in the hospital . That's what woke

14:45

you up .

14:47

Yeah , my Brahms milkshake

14:49

, you betcha .

14:50

God , make them a sponsor . We had sponsors

14:52

, no

14:55

, but you were pretty out of it , and

14:58

with as much as the Valium you took

15:00

, which you probably don't even remember exact

15:02

, exact amount at this point . So

15:05

linda has that bottle of pills away

15:07

from you , which is good , yeah , you know

15:09

.

15:09

That's she cleared . Matter of fact , I don't

15:12

know if you remember all the medicines I had

15:14

there on the counter next to

15:16

me , which wasn't none of my none

15:19

of my regular pills I take . It was all just

15:21

extra stuff I was taking . Well

15:24

, that's all been cleared away now .

15:27

That's well . You need

15:29

it because you know there's

15:32

times when I take my medicine from my back

15:34

and I'm like take that , or

15:36

did I not take that ? And so

15:39

I started using the

15:41

weekly things that I had for

15:43

gym . So I'm like , all

15:45

right , I'm just going to do this , because you

15:48

just don't remember where they took it and

15:51

when you're tired and in pain , that's

15:53

good . She took that away because it was right next

15:55

to you , but now you have that huge

15:58

bag of Reese's next

16:01

to you .

16:03

Do you still have any left ? Any , it's dwindling .

16:05

I think she should ration you with that too . She

16:08

has . I'm

16:10

just saying I want you to

16:12

talk about a doctor

16:14

. Sent you home and he said he's

16:17

going to put you on hospice okay

16:19

and hospice came out-hmm , okay

16:21

, yeah .

16:21

And hospice came out Friday and

16:23

talked to us Mm-hmm . And

16:26

.

16:26

Tell me how you felt when he said

16:28

he wanted you

16:30

to go on hospice .

16:32

Well , I kind of felt relieved

16:34

, to be honest with you , mm-hmm

16:36

, especially

16:39

once we talked to hospice and found out what

16:41

all they'll do . I

16:43

felt a lot more relieved . And

16:46

one thing my left knee still

16:48

is just bothering me like

16:50

crazy . I

16:55

can't put no weight on it hardly , which is better than before , because before I couldn't put any weight

16:57

on it , and at least now I can put a little

16:59

weight on it , any weight on it , and at least now

17:01

I can put

17:03

a little weight on it . But

17:06

no , after talking to the hospice lady and hearing what they'll do and

17:09

the doctor saying

17:11

I was

17:13

really relieved . I

17:15

think it's going to be a good thing .

17:17

Now , before

17:20

hospice came to your house , before

17:24

you heard what they were going to do for you , because

17:26

we did that three-part hospice

17:28

, yeah you know . And then , unless you're

17:30

going through it , um it

17:34

, you know , it just doesn't sink in . But how

17:36

did you feel before you ? They

17:38

came and talked to you when you heard I'm

17:41

putting you on hospice ?

17:47

Well , I tell you , my daughter

17:49

and my granddaughter work at different pharmacies

17:51

, but they're owned by the same people and

17:54

the pharmacist is probably

17:56

in his 30s you know him and his wife both in his 30s

17:59

. You know him and his wife both

18:01

and he had wrote

18:03

down a list of questions for us to ask

18:05

hospice and

18:08

we asked them and they

18:10

answered every one of them , you know . So

18:13

that made me feel better .

18:14

Yeah and

18:21

yeah , because I think I heard that after you actually had your

18:24

meeting . But for those listening , if it's not another announcement

18:26

, well , I'll make sure it gets under the announcements

18:28

when we had the

18:30

hospice nurse on .

18:34

It's in the announcements .

18:35

Yeah , there's a list of questions that she

18:38

said you know going in . I'm

18:40

curious . Maybe Linda could find that

18:42

and compare it with what the pharmacist said

18:44

to ask and see how similar

18:46

they are . So now , hospice came Friday

18:49

. Yeah , what

18:51

services are they going to offer ?

18:54

Well , they'll . I've

18:56

been on hydrocodone now for seven

18:58

years and I

19:00

told them , said , you know , I don't feel like

19:02

I'm getting the the effect of it anymore

19:04

, uh . So she

19:06

said , okay , we'll , we've got

19:08

percocet and we got morphine , we can put

19:10

you on and we'll

19:12

try those and see if we can get you some relief

19:15

. You know things like that . That just

19:17

just made

19:19

me feel better about what they were going to do . They

19:24

did say that , oh

19:27

, ever so often Linda

19:29

gets either a three or five-day break

19:31

and they'll put me in a— .

19:34

Chicken coop In a chicken coop .

19:38

Not a chicken coop , but pretty close to it . Dang

19:41

it . Not chicken coop , but pretty close to it , dang it . They

19:43

put me in a facility and that would give linda

19:45

three or five days , whichever one . It was

19:47

uh for her to

19:49

relax and get stuff

19:52

done that she needs to do . But

19:55

yeah , I do want to mention one thing . Uh

19:57

, you know , I've been using canes

19:59

now for several years and

20:01

the doctor did tell me to get

20:04

rid of my canes . He said canes

20:06

won't keep you from falling Right , and

20:09

that's true . He made a good point there

20:11

. I had never thought about that .

20:12

Yeah . So let's

20:14

say , Linda wanted to take a trip like

20:16

I book a trip , and her and I are going to go

20:18

somewhere just to get a break . How do you feel about going

20:20

somewhere ? Go somewhere just to get a break . How are you ? How do you feel about

20:23

? Going somewhere .

20:24

I don't have a problem with it .

20:26

Yeah , yeah , make new friends

20:28

. Is it close by ? Do

20:30

you know the place that they would ?

20:33

I'm sure it's this assisted living

20:36

right out here in town .

20:39

Okay , it'd still be in town . Yeah

20:41

, yeah , yeah in town ? okay , it'd still be in town . Yeah , yeah , now , besides

20:44

the , the option

20:46

of giving linda a break it

20:49

it once they get involved . That's

20:51

what we , you know , after jim died and

20:53

which was ironic that it happened right

20:55

after we did that three-part episode , yeah

20:58

, and it was too soon after

21:00

that for me to like I

21:02

knew because

21:04

because of um , uh

21:07

, vangie , the nurse that came on and told

21:10

us all hospice will do I

21:13

, and because our friend Bonnie , her

21:16

husband had gone through a month or so

21:18

before and I was on the phone with

21:20

her every step of the way , with her

21:22

husband in

21:25

his final week , because

21:28

of that I knew what hospice should

21:30

have been doing . You know , yeah , and

21:33

well , there's some things

21:35

I didn't know until afterwards

21:37

that they should have been doing also . But

21:41

we said after that , once I was

21:43

able to come back on and record , I'm like , please

21:46

just get yourself acquainted

21:48

with hospice , even

21:51

if you're in the middle of

21:53

. We say there's no stages , but

21:57

even like you could have been on

22:00

hospice . A long

22:02

time ago long time ago , you know

22:04

, and then they manage

22:06

your meds , you know , and

22:08

they're the ones that , like you said

22:10

, they're going to help you . Well , this one's not working . We're

22:12

going to try this medicine because

22:15

the whole goal is to make you comfortable and have

22:17

. You're going to have that person

22:19

from hospice who's

22:21

in charge of all your medicines

22:24

Right , you know , in charge of

22:26

everything , and instead of different doctors

22:29

, they kind of take control

22:31

of things

22:33

. Yeah , she named a couple of other things .

22:35

I can't remember what they was

22:37

, but it was all

22:39

good things , you know .

22:40

Yep , that's what I told you

22:42

when I , you know , I was like you

22:44

know it's good , it's

22:47

it's . And you said to me

22:49

I don't know if you remember you said I'm very

22:51

happy I did it because Linda's

22:54

going to get a lot of help . Yeah , yeah

22:57

, you know and that's . and

23:00

there's so many caregivers that you

23:02

know so many caregivers that we think we can handle

23:04

it and I really wish I

23:06

would have called also ahead

23:08

of time just to have you

23:11

know even somebody to call and talk to , like

23:13

a direct line to someone . Like

23:16

when you do something different

23:18

, you know that's out of the ordinary .

23:21

Yeah , she did say , we would have that yeah

23:24

we'd have a direct line to get

23:26

held up .

23:27

Yeah , someone , yeah yeah , and

23:29

so my , they come out right that day and I

23:31

and I'm proud of you for not thinking

23:35

we know that the word

23:37

hospice has this stigma to it that

23:39

it's the end of life . Oh yeah

23:41

, it

23:44

is when the time comes , but

23:46

it's meant to be

23:48

there for terminal

23:51

illnesses which Lewy Body , sadly , is

23:53

.

23:57

But I've known three or four people

23:59

who graduated out of hospice

24:01

after a short period

24:03

of time . I know one lady who

24:05

was on hospice for a

24:07

solid year Right , and

24:09

then she graduated out , yep .

24:12

Now every six months they have to Do

24:14

you remember texting me that in

24:17

six months they're

24:19

going to come back ? Yeah , it's

24:21

a good thing . Yeah , well , it's not that they're going to come back in six months , they're going to come back . Yeah , it's a good thing . Yeah , well

24:24

, it's not that they're going to come back in six months . They

24:26

re-evaluate you every

24:29

six months and I think that's probably a Medicare

24:31

thing . Yeah . And

24:35

so that doesn't mean you're going

24:38

to die in six months , it just

24:40

, I guess the rules that they have to follow

24:42

to get paid is

24:44

that they have to reevaluate every six

24:46

months . And yay for the people that graduate out

24:48

of it . But your name

24:50

is say you graduate

24:52

out of it at any point . You

24:55

take a dip and Linda needs help . She's just going to

24:57

pick up the call and you're already in the system .

24:59

I'm already in the system . Everything's taken care

25:01

of . Yeah .

25:02

Yeah . So I just encourage people

25:04

and I know we did , we

25:06

talked about this a few times after Jim

25:08

passed away that

25:11

just start

25:14

researching hospice organizations

25:17

and if you

25:19

guys want send us you know us after

25:22

you listen to this just send us a private

25:24

message if you want us

25:26

to get the hospice nurse to come

25:28

back and

25:30

if you have any questions , which maybe I'll

25:33

post that on the pages . What

25:35

kind of question would you want to ask ?

25:38

now , do you think ?

25:40

do you think Linda would go away for

25:43

three days ?

25:45

She probably wouldn't . She

25:49

might go away for overnight to see

25:51

her sister , or something like that . Yeah

25:55

. I would like to see

25:57

her go away for three days , if she has that option

25:59

. Yeah

26:01

, as a caregiver , it's hard , maybe not even go

26:03

away , just stay here and

26:06

get a break from me , you

26:08

know . But

26:10

another thing hospice said

26:13

that they could get me a hospital

26:15

bed and I said , well , I don't need one because I sleep in

26:17

my recliner , and

26:20

they will get me a wheelchair . So

26:23

, that's a good thing .

26:25

Yeah , and then when

26:27

the time comes that you need the hospital bed

26:29

, well , you

26:31

know , I got a hospital bed and I got stuff

26:34

I didn't even know what it was yeah

26:36

, from the bed company , from

26:39

the bad company . And if you haven't listened to that episode

26:41

, you have to listen to this one . If you go

26:43

back and I can't

26:45

even tell you , I'll

26:47

try to look it

26:51

up real quick . But instead of being

26:54

under the gun to just when

26:56

your loved one takes a turn and you need hospice

26:58

last minute , they

27:02

do your homework now . I

27:05

would recommend not choosing a company

27:07

that has offices

27:12

in every state , because

27:14

that's my problem . I

27:16

did exactly what I shouldn't have done and

27:19

I didn't have that at the time . I didn't have that list of questions because we had

27:21

recorded the podcast and it wasn't have done . And I didn't have that at the time . I didn't have that list of questions because we had recorded the

27:23

podcast and it wasn't all edited , so

27:25

I didn't have that list made

27:28

up because Vanjie sent it to us afterwards

27:30

. Just find

27:32

an organization that's local and

27:36

interview them .

27:38

That's the good thing . These people are about

27:40

a 20-minute drive away from us . They're

27:43

up in Independence , Kansas . So

27:46

, they're not very far from us at all .

27:49

And if they're not willing to answer the questions , do

27:52

you need to just say thank you very much ? Hang up

27:54

and call the next person .

27:55

Oh , yeah , she

27:57

was not afraid of answering questions

27:59

at all .

28:00

Well , you know , that's what happened when Matthew's

28:03

now wife she was in charge of finding

28:05

a new hospice and

28:08

the first two she called wouldn't answer the questions

28:10

. Yeah . And then the third one

28:13

was she was like I'm so happy you're asking

28:15

these questions , right

28:18

, because by then I printed out those

28:20

questions that Vanjie sent us . You know , I'm like

28:22

you got . This is what you sit down and ask because I

28:24

was in no shape to do it , because it's

28:27

just , you know , I'm , I'm happy

28:29

you finally have hospice . I

28:31

mean , you're in the hospice and

28:33

I have no doubt you're going to graduate out of it and

28:35

yeah , you know . And then you'll

28:37

do something dumb again and fall .

28:42

Eat too many

28:44

Reese's and tip over , oh Lord

28:46

.

28:48

Have a diabetic coma

28:51

. I'm going to text her when we're done here and tell her she got

28:53

a rash and it was Reese's . But

28:55

you do . I mean , you are so much better than you

28:57

were a week ago . A week

29:00

ago , yeah . You just have

29:02

to learn to let yourself give

29:04

yourself time to recoup from it . Yeah

29:07

, you know , and I'm really I'm glad

29:10

you're weaning off of some things . And

29:12

then and

29:15

you found a doctor in an ER that understood

29:19

what he was .

29:21

He was just so great , he

29:24

really was .

29:25

It's encouraging , right ? Because

29:28

four years ago when we started this , how many

29:30

times people come on and like the

29:32

doctor has no idea . And we're

29:35

hearing more and more . Doctors

29:37

are well , not . My daughter , Her

29:39

nursing class has no idea what it is from what they were told . We're hearing more and more

29:41

doctors are well , not my daughter , Her

29:44

nursing class has no idea what

29:47

it is from what they were told .

29:48

But yeah , that doctor , he came in several

29:50

times a day checking

29:52

on me , you know , and he'd always just

29:54

sit down , and I said that last time

29:56

he

30:01

sat down in the floor and was talking to us . Uh , yeah , he acted

30:03

like we'd known him 20 years already

30:06

right .

30:07

Yeah , you're lucky . I didn't get to see a doctor

30:09

when I was in that hospital right

30:12

right the three days I was

30:14

there , but but that was in the ER

30:16

though . Right , yeah , right , that

30:18

ER doctor . I had

30:20

an ER doctor like that when I went from

30:23

you , I went to Texas and I had to go see

30:26

someone before I flew home .

30:27

He was also on call there because he

30:29

was the one that came by and checked

30:32

on me each day , several times a

30:34

day . But yeah , when I first

30:36

saw him it was in the ER .

30:40

Yeah , so I knew

30:42

you know Curry wanted

30:44

to come on and share what just happened with

30:46

him in the last week or so . What's

30:49

the moral of the story , curry ? Don't

30:54

take medicine . You're not supposed to .

30:56

Yeah , Of

30:59

course I didn't realize at the time we weren't

31:01

supposed to take Valium .

31:02

Well .

31:03

Never clicked with me .

31:04

Well , you've taken it before and I guess

31:06

you didn't . Yeah , Once you take it

31:09

.

31:09

And I've known other people who have taken it . You

31:11

know , yeah , and they

31:13

seem to be doing okay and , like

31:15

I said , I took it before to get me

31:17

from Texas up here yeah , but you didn't take

31:19

it as a take it every night

31:21

and take it more than once yeah

31:24

you know , and you were probably out

31:27

of it and just kept taking them and

31:29

yeah , see , I don't think

31:32

about the move from here , texas

31:34

, up here . I don't remember

31:36

any of that . I don't remember them getting here and them unloading the truck . I don't

31:38

remember any of that . I don't remember them getting

31:41

here and them unloading the truck . I

31:43

don't remember them putting my recliner in the house

31:45

. I don't remember any of that stuff .

31:46

And that was with only one dose of that med

31:49

right .

31:49

Three , I took three .

31:51

Yeah , 30

31:55

milligrams .

31:56

No 310 milligrams .

31:58

Okay , yeah

32:01

. Well , that's what happened . You took that plus

32:03

more in a short

32:05

period of time . So

32:07

it just goes to show because you already

32:10

know someone who was taking it five

32:12

milligram that some

32:14

people can handle it , some people can't . But

32:17

Valium is one of the should-not-take

32:19

drugs with Lewy body .

32:20

Yeah , it's one of the no-no drugs .

32:23

Yeah , because I talked to Norma Lowe

32:25

from the Lewy Body Resource Center

32:27

and she's like no

32:29

, you shouldn't be taking that . So

32:33

, all right , well , we just wanted Kari to come on and

32:35

share what's

32:39

been going on with him , and

32:42

I wanted him to

32:44

talk about his hospice experience . So

32:47

those of you listening who have

32:49

Lewy body and caregivers

32:52

, it's not a big deal , right

32:54

? Curry , Don't be afraid of hospice

32:56

, Because it's , if

32:58

anything , do it for

33:01

your loved one that's taking care of you

33:03

. Yeah .

33:04

You know , but it's

33:06

not a death sentence . Hospice

33:08

doesn't mean you're going to die , it's

33:12

just there to help you through it .

33:14

Right , right , which is what

33:16

we

33:18

said all along . And , just like

33:20

you said , you wish you would have called

33:23

them sooner , or ?

33:24

at least got , you know Now

33:31

are they going to send somebody over to do PT on your knee ? I don't know about PT on my

33:33

knee yet . Okay , the

33:36

orthopedic surgeon , he's

33:39

on vacation .

33:41

Mm-hmm .

33:42

So he hadn't even seen the x-rays

33:44

of my knee or anything , as far as I know .

33:46

Oh , but they must have read them

33:48

in the ER , not when it was broken .

33:51

Yeah , they did .

33:51

matter of fact , yeah , did you

33:53

have an MRI ?

33:55

or a CAT scan . Yeah , I

33:58

read what they wrote but

34:00

it basically just blew it . You know he pulled 2,500

34:04

, you know those big fat

34:07

syringes that

34:09

are big and long . He pulled

34:11

five of those , which is 2,500

34:14

cc or whatever milligram

34:16

whatever , out of my knee and

34:18

it looked like he could have pulled that much more

34:20

.

34:21

Yeah , well , sounds

34:23

like you did something to your meniscus

34:26

, or something . Yeah . But

34:29

you didn't have a CAT scan or an MRI .

34:31

Yeah , yeah , they did that on

34:33

my knee too , yeah .

34:34

Yeah , so the swelling has got to

34:36

. You got to get that swelling down and let it rest . Yeah

34:39

, yeah so the swelling's got to . You got to get that

34:41

swelling down and let it rest . Yeah , so , anyway , that's

34:43

what's been going on with

34:46

Curry in the last week

34:48

or so . We just wanted to update people

34:51

and share about . You

34:53

know , don't be afraid of hospice calling

34:55

them ?

34:55

Yeah , exactly , don't be .

34:56

Yeah , do it now when you don't really need it

34:59

. Get evaluated now so

35:01

when they come the next time they

35:03

can compare from

35:06

the time before . Anyway

35:08

, anything else you want to share ?

35:10

Yeah , if nothing else , at least get on palliative

35:12

care . That

35:15

will put you in line for

35:17

hospice . Right , that's

35:21

about . The only thing I want to say is don't be afraid

35:23

of hospice . There's

35:25

nothing there to be worried about . Yeah

35:28

, it's not . A

35:30

People

35:32

always think , oh , they're going to give you morphine

35:35

and kill you . Well , no

35:37

, they're not , you know , they're're just

35:39

gonna keep you comfortable , is all yep

35:41

, and have have one

35:44

entity that's in charge of you now .

35:46

Yeah , everything everything about you . They're

35:49

the ones and one , one

35:51

direct phone call you . Just call the

35:53

same , you know yeah

35:56

entity and and for

35:58

any help that you need , which is great , all

36:01

right , thank you for sharing that Curry . It's

36:04

really going to help so many people that

36:06

you , you know , shared how your experience

36:08

is actually being told yeah

36:11

, especially being told we're sending hospice

36:13

your way . Yeah .

36:15

You know , Well

36:17

, folks , that's all we have time for this week

36:20

. Remember , you can email

36:24

us with a suggestion

36:26

on what you would like to discuss on a future

36:28

episode , or you can ask any

36:30

questions you have , and we'll sure do our best

36:32

to get you the best answer .

36:34

Yep , and we'll post the link

36:36

for the podcast on both of the pages

36:38

and we're going to try to remember to put

36:40

up the flyer for the event in

36:42

September . You know at

36:44

least once a week or more , but it's under

36:46

the announcements also and

36:49

again , you can print that out because it gives

36:51

directions and all the details you

36:53

need for the event .

36:55

Yeah , and I do want to say one thing about

36:57

that event . Yeah

37:04

, and I do want to say one thing about that event . You know so many of us each

37:06

one of us , I know has said boy , I wish there was a place we could all

37:08

meet and and get

37:10

to know each other for at least a day . You

37:13

know , and

37:16

, linda , thanks to you and Bill Shipman , this

37:19

is finally happening and I really appreciate

37:22

it . Yeah . Yeah , I'm

37:24

really looking forward to it .

37:25

Yeah , bill had run

37:28

it by me , and then that's why he drove to

37:30

see you in person , because he

37:32

wanted to ask you in person what you thought . Yeah

37:35

. So yeah , and then we'll

37:37

you know , bill and I will

37:40

manage everything on our end and any questions

37:42

you can email me . And

37:45

yeah , to look at the flyer and

37:49

it's going to be right

37:51

now I think . How many people do we have ahead ?

37:53

count Well we had 70 , but I think there's

37:55

more since then . Yeah , preliminary Well , we had 70 , but I think

37:58

there's more since then .

37:58

Yeah , preliminary , just spit

38:01

firing off the top of our head who

38:03

expressed that they

38:06

would come . But anyway , that's

38:09

what we want to share today .

38:11

Yeah , and folks , if you want to learn how you can

38:13

be a supporter of the podcast , just

38:15

see the episode notes , as we post the information

38:18

there at the end of the notes .

38:27

Okay , folks , thanks again for joining us and thanks

38:30

again .

38:31

Curry for sharing about your

38:33

hospice experience Until next week . This is Linda and Curry signing

38:35

off .