0:12

Welcome back podcast family .

0:14

Yeah , welcome back y'all Folks . I just

0:16

want to remind you that we're not giving medical advice

0:19

. We're just sharing our open and honest experiences

0:21

as we live with Lewy body dementia

0:23

. Now I want to give out some

0:25

shout outs , each for this

0:27

week that we do every week . But

0:30

first I want to tell y'all to

0:32

our I want to say thank you to all our listeners . We're

0:34

in 81 countries now and

0:37

we're on the doorstep of 50,000 downloads

0:40

, so I want to thank you all

0:42

. And here's some of our donors for this week We've

0:45

got Marcia Traffman , raysh

0:47

Croson I hope I didn't butcher

0:49

that race John Jane

0:51

Hooper , anonymous Nina Berg , and

0:54

thank you to all the rest that keep

0:57

this thing going . We also want to remind you

0:59

all that if you'd like to be a guest and

1:01

share your story on the show in hopes of helping others , just

1:04

contact Linda Zipuli or myself through

1:06

Facebook Messenger or through our

1:08

email , which is Lewy body roller coaster

1:10

at gmailcom . We'd love to have you

1:12

on the show to share your experience of Lewy with

1:14

our audience .

1:16

I don't know why I really like the way you say my last

1:18

name . Maybe it's a Southern draw . I

1:21

haven't said that to you in a while , but I

1:23

really like it . We have an extra

1:25

get . We have a third

1:27

guest waiting in line . Well , pop , pop , that's

1:29

all right . My dogs have barked before , so we'll . Yeah , people

1:32

get it . We're

1:35

not professionals here . Mine is

1:37

hacked . We're professionals by new means

1:40

of people now which talks about this

1:42

, and I shout out to you all , while we work

1:44

to get back to weekly episode , which we have gotten one off and we're

1:47

going to be back . We've

1:49

gotten one off every week 2024

1:52

, except this week it

1:55

was done . It wasn't our fault . The buzz

1:57

for outside kept kicking me

1:59

out , password wise , and

2:02

so it did come out this week though . Yeah

2:04

, it did come out this week , just not , you know . You

2:06

know how I'm like , you know where I want to out on

2:09

Wednesdays and I think it wound

2:11

up getting Thursday because I had to reset my passport

2:13

like five times for some reason . Yeah , you

2:15

know , poor Andrews , it's Marty girl season down

2:17

there and he's doing parades and I'm like , no

2:20

, as soon as you get home . You got to upload it again

2:22

, but but anyway

2:24

, 2024

2:26

is off to a better year . So far , minus

2:29

the little one day hiccup this

2:31

week .

2:32

All right , folks , let's get this week started . This

2:35

week we've got two good friends from our support

2:37

meetings , sam who , sam

2:40

, has been a great big help for me , to

2:42

me in our zoom meetings . Him

2:45

and Megan both step in when I , when I can't , but

2:48

we've got Sam and his wife slash

2:51

care partner Tracy , where Sam's calls

2:53

her sweet Tracy in our support

2:55

groups . Hello .

2:56

Thank you for having us Good to have you

2:59

all with us .

2:59

We chose these two amazing people to come

3:01

on this week because , as Kerry said , he's

3:03

he attends . Sam

3:06

attends the meetings , the Louis buddies

3:08

meetings on Thursdays at 3

3:10

30 Central , and

3:13

both of them attend the Monday Friday meetings

3:15

, most of the time when Tracy is available

3:18

and not working . And then

3:20

, of course , the

3:22

spouses group that Saturday is at two

3:24

PM Central . Got to

3:26

remember Central Kerry ? Yeah , not

3:29

on Central , it's you . You

3:31

always get me like confused because Tracy was like

3:34

is that , is that 445 , central

3:37

time or Eastern ? And I'm like Eastern

3:39

time , eastern time , my time . But

3:41

anyway , yeah

3:44

, we just we've been wanting to get you two

3:46

on for a while . That's

3:48

current . I have both , both met Sam

3:50

and Tracy and they

3:52

came to my

3:54

husband's funeral , which , sam

3:57

, I can . Sarah still talks about

3:59

you hugging her and not

4:01

going to cry that you're

4:04

, and when you hugged me , when you hugged

4:07

me , it was like Jim hugging me . You have that

4:09

hug like he had , but she

4:12

just talked about you hugging her

4:14

and holding on to her and that really meant a

4:16

lot to her . So I want to let you

4:18

know that again , sam .

4:20

Yeah , and they both . They both came to our house

4:22

when we lived there in Texas . Yeah

4:24

, we surprised you . Yeah , and

4:26

it was very special to

4:30

meet the two of them . It really was . But

4:32

, sam and Tracy , can you all introduce yourself

4:34

and share with our listeners your story ? You

4:37

know things like where you , where

4:39

you all live at and when you got the diagnosis

4:42

and how hard it was to get the diagnosis

4:44

.

4:45

So we are from Atlanta , born

4:48

and raised in Atlanta . Both of us and

4:51

we had a retirement home

4:53

in Delta , alabama , and

4:56

we currently live in Pike Road , alabama

4:58

. Our retirement home

5:00

proved too difficult for Sam

5:02

to get in and out of and

5:05

, plus , it was in the middle of the country and

5:07

very far away from medical offices

5:12

, which you know . When we bought it , we thought

5:14

we'll never get sick , and I

5:17

think Sam , in 2017

5:19

, when we bought it probably had Lew

5:21

body already , but we didn't

5:23

know it . Of course , we

5:25

have three beautiful children and

5:28

10 awesome grand

5:30

babies , and

5:32

they're 10 and under , so

5:35

we love them

5:37

.

5:38

They're at the right age .

5:40

Yeah , they're . All this . Everything

5:42

is exciting and

5:44

I love being a grandmother

5:47

. I work time and

5:50

that's proving

5:52

to be a little bit difficult as Sam progresses

5:55

and just

5:57

trying to hold it all together and just , you

5:59

know , be a normal couple and just

6:02

live through this Louis adventure .

6:04

Yeah , the best you can . And how long have you all

6:06

been together ?

6:08

Well , we've been married for 41 years

6:10

, but coming up at

6:13

the end of the month , we've been

6:15

well . Actually , next month

6:18

, we've been friends

6:20

for 43 years . Wow .

6:22

Congratulations . Thank you .

6:23

Long time .

6:26

Well , yeah , that's amazing .

6:29

It has been a wonderful journey and

6:31

one that I have no regrets about . No , neither

6:34

Good deal , and

6:38

if anybody wants to talk about the secret

6:40

to longevity , we don't have time here

6:42

, but I would love to share with anybody

6:45

. That is just curious

6:47

. Yeah , all right . Well , there you go .

6:48

They're going to have your name , so

6:51

get lots of messages . So let's start . I'm

6:54

going to start with you , tracy , and ask

6:56

you , thinking back , what were some of Sam's initial

6:58

symptoms that made you want

7:00

to seek a doctor , or what

7:03

did Sam first share with

7:05

you that were his initial symptoms , because

7:08

I know you both have been through the ringer

7:11

to get a diagnosis .

7:11

But if you could think

7:13

back to the beginning what

7:15

some of the symptoms were , the

7:18

first time I was really wondering

7:21

what was going on was right when we came home

7:25

from COVID . Everybody was put

7:27

into their homes and everything's kind

7:29

of stopped , and

7:32

he had some mannerisms that

7:34

he was an over the road truck driver . So

7:37

I didn't see him every day or

7:39

he would be gone for days and

7:43

we just really didn't work together

7:46

all the time . But

7:48

at that particular moment I

7:50

started noticing that he had . One

7:55

of the first things was his nose was always

7:57

running , always running , even though he

8:00

was taking Allegra or

8:03

Clarentin or Zyrtec just one of the

8:05

medications for sinuses . But it was always

8:07

running and

8:11

all of a sudden one day

8:13

he had a really bad

8:15

anxiety attack and was unconsolable

8:19

. I called his doctor and

8:22

got some medication for him and

8:25

they just Sam's mother had passed

8:27

away in January of 2020

8:30

. So we

8:32

thought maybe it's just grief . He

8:37

started spending a lot of extra

8:39

money and not making very good purchases . Also

8:43

, he couldn't he's always been

8:45

able to just go out and build something and

8:48

he was having trouble

8:50

finishing simple

8:53

task that

8:55

he was doing . Just he

8:57

would measure something and measure just

9:00

many , many times . And

9:04

I'm thinking something is not right with

9:06

his brain . So we

9:09

went and saw psychiatrist and

9:12

there began our journey .

9:15

Now Tracy is in

9:17

the nursing field , so you

9:20

had that going for you

9:22

, I guess .

9:24

Yeah , I'm in my car actually .

9:27

Yeah .

9:28

In the medical field , but yeah , uh-huh .

9:31

Sam Tracy just told us the

9:34

first symptoms that she noticed that

9:36

you had , but can you share with our

9:38

listeners what your main symptoms were

9:40

that made you actually talk to Tracy before

9:44

the first doctor appointment ? Maybe

9:46

one Tracy didn't talk about and

9:48

how was it opening up to her about

9:51

things that you felt weren't right ?

9:53

Well , you know , it's always

9:55

easy to talk about . Tracy Always has

9:57

been for the

10:00

most part I mean very slight

10:02

percentage of time that we didn't

10:04

see eye to eye . But those

10:13

times were forgiven and forgotten

10:15

and we came to

10:17

an understanding of

10:20

what was proper in that scenario . But

10:24

I actually didn't

10:26

go to Tracy with

10:28

concerns . Tracy

10:32

came to me one day and

10:34

after something

10:37

major had happened and

10:40

I didn't resolve

10:42

the situation

10:44

very easily and

10:47

she came to me and

10:50

shared that she had been doing

10:52

some research for several

10:54

months on things that she

10:56

had noticed that I was doing

10:59

, and then certain

11:01

things that I was doing very well , I

11:03

wasn't doing anymore . And

11:06

so you

11:09

know , being a being

11:11

over the road truck driver , there's

11:13

a very high expectation that

11:16

that drivers drive

11:19

with a great element

11:22

of safety in mind . That's

11:24

the number one thing . And

11:27

in 2017

11:30

, I had my first accident

11:33

in years and years and years . And

11:36

then I had another accident

11:38

in 2018 , and

11:41

both of those were in

11:43

my personal truck , my long truck

11:45

, and then December of

11:47

2019

11:50

. Oh no , september

11:52

, september

11:54

or October I had a

11:56

wreck in my big truck that

12:01

was just

12:03

out of the blue , and

12:17

so , anyhow , when

12:20

that happened , it just started . You

12:24

know , I started wondering

12:26

you know what's gotten into

12:29

me ? And

12:39

so then , a few months after , mom died

12:41

and

12:44

I started having those panic

12:46

attacks , it

12:54

just made

12:56

me want to stay home . I

13:00

didn't want to get out of the house , I didn't want to do anything

13:02

, I didn't want to have anything

13:04

to do with anybody . Of all

13:07

my life I've never met

13:09

a stranger . And

13:11

all of a sudden I don't want to talk to

13:13

anybody . I

13:15

just wanted to shut down

13:18

and not

13:20

be very sociable .

13:26

So that

13:29

was very different .

13:30

Yeah , and Sam , I want to tell

13:33

you , if you're anything

13:35

like I am , you're going to

13:37

crash after we get through the recording today

13:39

. It always makes

13:41

me crash , I just it wears me out

13:43

brainwires .

13:44

Yeah , and don't stress it up . You

13:47

know you don't remember what you're saying because it's

13:50

, you know , just trying to recall

13:52

, like all those things that happened in

13:54

the very beginning . And Kerry's right , because

13:56

remember , when he wasn't , he'd sleep in for like 36

13:58

hours . He twisted my arm and then making me record

14:01

and then he crashed . So , but

14:03

there's Tracy and Sam are still on their way back

14:05

to Montgomery , so , tracy

14:08

, he may crash for you on your last leg

14:11

of your leg of your two . Yeah , yeah

14:14

, so it's all good . So this one is for either

14:16

of you and

14:19

I guess Tracy , maybe you , because it's

14:21

you you've

14:23

been to . You know where I'm back

14:26

trying to get him a diagnosis . So

14:28

can you share what the diagnosis process

14:30

is like ? What did what doctor did

14:32

you go to first and how long did it take you

14:34

to get a diagnosis ? I know you fired a few

14:36

, I believe , along the way , or , yes

14:39

, you know , I'm told he had it , didn't have

14:41

it , had it . You know , like we've heard many , many

14:43

times , Right .

14:46

First doctor we took Sam to

14:48

was a psychiatrist recommended

14:52

by our PCP

14:54

at the time and we

14:57

walked out of there and they told they

14:59

told me that he had schizophrenia

15:03

and bipolar and

15:05

I was like what that

15:08

? That is just absurd

15:10

. You know , someone doesn't get to be 63

15:13

or whatever Sam was at the time

15:15

and have schizophrenia or bipolar

15:17

disease . They didn't

15:19

know him prior . So the

15:23

next step was another physician

15:27

that was a neuropsychiatrist

15:30

and he did

15:32

say he thought that Sam had

15:35

a low body . Unfortunately

15:37

we did have to change doctors

15:39

because our insurance did not cover him

15:41

and the bills

15:44

were quite steep and I knew

15:46

that we were going to be having lots of because

15:49

all the tests that he was ordering we were going to have

15:51

a lot of medical expense . So

15:53

then we went to another neurologist

15:56

. That didn't

15:58

go well , then

16:00

another psychiatrist and

16:03

he actually

16:06

referred us to

16:08

Emory Brain Center where

16:11

we started going . I think that was year

16:13

one and a half . We've been dealing

16:15

with this for a year and a half and

16:18

he sees a neurologist

16:21

there at Emory Brain Center . He's on his

16:23

second neurologist there . He actually got Sam

16:26

has a lot of atypical

16:28

movement and

16:31

so he got shifted

16:33

to a movement neurologist

16:35

. So he's not actually in the

16:37

low body program

16:40

but because

16:42

he has a lot of , and he fell and had a head

16:44

injury so that kind

16:46

of messed things up a little bit

16:48

. But we have a psychiatrist

16:50

there at Emory . That

16:52

is stellar . And

16:55

the person who actually said

16:57

yes , he has Lewy Body Dementia

17:00

was a forensic pathologist

17:02

I'm sorry , psychologist

17:04

and

17:06

he did a four hour

17:08

test

17:11

. Sam has had several of those

17:13

, but he did one that was very

17:15

different and he came to

17:17

the conclusion that yes , sam does have Lewy

17:19

Body , and that was in January

17:22

of last year . So we've only had the Lewy

17:24

Body Diagnosis for one year out of or

17:30

I remember when Sam fell and

17:32

hurt

17:34

himself .

17:35

Yeah , that was , that was bad .

17:37

Yeah , yeah , it really was

17:39

, yeah , but it but

17:41

you as

17:43

it with me and I've told the stories

17:46

. I thought Jim had a little body from all

17:48

my research . You know , like we know our loved

17:51

ones and there's spouses you know better

17:53

than anybody and I was

17:56

like I think it's awesome . You know

17:58

, like I don't know , many

18:00

times we have people on that similar

18:03

stories , right , curry what words . You know

18:05

definitely the loved one does the

18:07

research and then it's just a matter of

18:09

getting all the doctors to that happens

18:11

a lot . Yeah .

18:14

For 10 minutes or less

18:16

and they cannot make

18:19

a judgment .

18:20

Yeah .

18:21

That amount of time .

18:22

my opinion and they can't exactly

18:25

right .

18:25

Yeah , but did you guys do the skin biopsy ? I don't

18:28

remember .

18:29

Yeah , we did this in one . We

18:34

were actually referred to neurologist

18:37

outside of the Army brain center

18:40

. We went , I

18:42

went to see him for several months

18:44

and and

18:48

he was just up in arms , he

18:50

couldn't , couldn't figure it out and and

18:53

he he wasn't comfortable

18:55

with it

18:59

. It wasn't comfortable

19:02

to clear in the diagnosis

19:04

because that person

19:06

is so different than

19:08

a lewy body patient

19:12

. And so after

19:14

another couple of visits with him

19:16

and I just felt like he

19:18

was , he was about ready to kick

19:20

us to the curb I asked him if , if

19:23

, if , he could do the same

19:25

one biopsy for us and

19:28

just kind of kind of give us

19:30

some closure . Well , he

19:32

did the same one biopsy and

19:34

my results came back

19:36

negative or lewy

19:38

body dementia . But

19:40

in those , in

19:43

those follow up sessions

19:45

to that , he

19:48

did say that there

19:52

there might be some indications

19:54

that would justify

19:56

a lewy body diagnosis , but

19:59

it because I presented

20:02

so different it would , he

20:05

wouldn't be willing to go that far and

20:08

actually make it an official

20:10

, you know , probable

20:12

lewy body diagnosis . And so

20:15

we went back to the Emory

20:17

brain center and

20:20

my psychiatrist

20:22

said that there

20:24

was , that there was a particular

20:28

forensic

20:30

psychologist that

20:33

he wanted me to go see , and

20:35

so we set that up and and

20:38

that's that's what Tracy was talking

20:40

about in Mendeca where he

20:43

did the . He did the testing in

20:46

like October , november

20:48

and then

20:51

he told us it would be it would

20:53

be months or weeks or months

20:55

before he , before

20:57

he submitted his

21:00

report , and that

21:02

was . That was in January , when

21:04

he submitted the report declaring

21:07

that he

21:10

was diagnosing me with lewy body

21:12

dementia and

21:15

from there that that

21:18

gave us a great deal of closure and

21:20

it really helped , helped

21:23

me to to

21:28

accept

21:31

it more . Well

21:35

, I can't really say

21:37

that I was in denial , it

21:41

was more an element of confusion

21:43

. Well , if it's not lewy body , then what

21:45

is it ? Can ? Can we figure out

21:47

if it's something else ? So

21:50

, for for him to give

21:52

us that diagnosis and

21:54

I say he gave us the diagnosis because

21:56

it it , it really is an us

21:58

thing , so

22:02

it's , it's . It's

22:05

it's where we we

22:07

, we both have to share the burden

22:09

, and Yama

22:11

Masui Tracy does it so gracefully

22:13

and she's very

22:15

transparent with me and

22:18

she tells me , she

22:23

tells me the real stuff

22:26

that's going on , like

22:29

I think it was yesterday

22:32

. She said I got to have

22:34

a vacation and

22:37

y'all , she's been out

22:39

of work . Can I share that ? Sure

22:43

, she's been out of work now for a couple

22:45

of weeks , but we've

22:47

had some major things come up in

22:49

our home In

22:53

Pike Road and also

22:55

with the property that , the

22:58

cabin that

23:00

we sold . We've had some things come

23:02

up with it that are kind of ugly and

23:09

it's just it's going to be a steep

23:11

uphill climb to

23:14

resolve

23:16

all that . And

23:18

that brings up the frustration for

23:20

me is because we

23:23

used to share these burdens together . We

23:25

used to be able to resolve them

23:27

and process them and we knew the

23:29

people that we need to talk to to

23:32

help us get through it and it

23:35

. You know , it's just not

23:37

that way now and it's

23:39

it's frustrating for me because

23:41

I know I used to be able to help

23:44

, but I can't help .

23:44

Anyone is frustrating

23:47

, so you know

23:49

y'all was talking about how

23:52

hard it was to get a diagnosis . I

23:54

know every

23:56

doctor's appointment Linda and I went to , we

23:59

would think , okay , this is the one they're going to tell

24:01

us what's wrong with me . And

24:04

they'd say , well , we can't find

24:06

anything wrong with you , you know , can't find anything

24:08

wrong with your heart , can't find anything with your lungs

24:10

, can't

24:13

find anything wrong with your brain . But

24:15

you got to have a tumor

24:19

in your brain , you know , and

24:21

it's just really stressful . And

24:24

to me it was a relief

24:26

to get a diagnosis

24:28

and to finally find out what was wrong

24:30

with me . I knew something was wrong , I

24:33

just didn't , couldn't put a name to it . So

24:36

I know how hard it was .

24:38

Yeah , and I just want to like

24:41

. When you were talking , sam , telling

24:43

your story , I wrote down a word that

24:45

you said that just screamed

24:47

at me is the doctor said

24:49

you don't present like a typical Lewy body

24:51

patient . There's no such

24:53

thing as a typical Lewy body patient .

24:56

There's no such thing .

24:57

Yeah , the doctors have to get that . You

25:00

know you don't fit into this nice little checkbox

25:03

of symptoms . You know it's just

25:05

nobody's

25:07

I don't know if anybody

25:10

in all of our support groups there's no

25:12

two people like with symptoms .

25:15

You know , and it's here some symptoms

25:17

, but we all have different symptoms also

25:19

. Yeah , yeah .

25:21

You know that . We got that . We got that

25:24

spreadsheet . I think that talks

25:26

about our , our

25:28

symptoms and what it has

25:30

, what they don't have , and it's

25:33

. It's just all over the place

25:35

.

25:35

Yeah , yeah , what Sam is talking

25:37

about is in our support group or

25:39

I think even on some of the Facebook pages

25:41

we had , if

25:43

anybody wanted to share symptoms

25:46

. Yeah , share what the symptoms

25:48

were . And yeah , it's , it is all over the place

25:50

. So it's funny you bring up support groups

25:52

, because that's my next question for you , sam

25:54

. So

25:56

in our support groups and

25:59

and I really appreciate you helping curry

26:01

with the Thursday

26:03

meetings , if you can't do it , end of Monday Friday

26:05

. Sometimes you were last year was I

26:08

didn't make as many of those as I probably

26:10

should have , but I appreciate everybody that jumped

26:13

in during that time . But you

26:15

are such a positive force in our group

26:17

meetings , like Sam's the one , it's like somebody

26:20

else say I can't figure out , and he's like hit

26:22

the three dots on the right , like he'll talk

26:24

them through the computer issues , and you

26:27

always have something nice to say to people and

26:29

ask everyone how they are again

26:32

helping computer and phone issues

26:34

. So we both thank you for all that

26:36

. But can you

26:38

share why you feel it's important

26:40

to attend support meetings for those with LBD

26:43

and their caregivers and what

26:45

it is that you get out of the meetings , both

26:47

the Thursday meetings and the

26:50

mixed group meetings on Monday Fridays ?

26:53

Oh , that is so easy . Back

26:57

when I first started attending the zooms

26:59

, the main

27:02

reason I wanted to was because

27:04

you know Tracy had

27:06

told me so much about

27:08

about what my symptoms

27:11

were , and but

27:13

there was there was not

27:15

much information out

27:17

there about what to expect

27:19

. You know

27:21

, further down the road for me is is

27:24

there ? Is there anywhere

27:26

that I can get some clarity on

27:29

what kind of life I could expect ? So

27:31

early on , as

27:37

I started to understand

27:40

how everybody else was living

27:42

and how

27:44

everyone else seemed

27:47

to have a place that

27:50

they fit into the group , whether it be

27:52

the jokester , whether

27:54

it be the dog

27:56

owner , just whoever

27:59

it was it was very easy

28:02

for me to come to realize

28:04

that I needed to have a purpose and

28:08

purpose . You

28:11

know , all my

28:14

life I had purpose . I had a servant

28:17

mentality . I

28:19

had a helpful attitude

28:22

. When

28:24

I encountered somebody that needed

28:26

help , we just helped them

28:29

and

28:31

sometimes

28:37

it was more of a blessing

28:39

to be a blessing than

28:41

them

28:48

. We were blessed more to help someone

28:51

than the

28:54

blessing that we passed on to them by

28:56

helping them . So

28:59

I came

29:03

to understand how to

29:05

help Currie and

29:08

you , linda , in

29:11

the zones . But

29:18

I just like

29:21

that . I can retain that

29:23

part and the reason I'm able to retain

29:25

it is just it's through

29:28

repetitiveness

29:30

, doing the

29:32

same thing over and over . But

29:36

I mean , even then , there are still

29:38

days that I can't

29:40

remember about those three little thoughts you

29:42

talked about . I just you

29:44

know , but most

29:48

of the time there's somebody else

29:50

in our caregiver

29:52

and patient support groups

29:55

. There's usually somebody in there that

29:57

can pick up the ball where I drop

29:59

it .

30:00

Yeah , yeah , for sure . I mean that's

30:02

and we've talked about it on here

30:04

before is it's it's not

30:06

mine and Currie support group , it's like

30:08

everybody's support group and you

30:11

know , sometimes I got to run out to a doctor's

30:13

appointment , or Currie needs to zip off

30:15

and we don't always have to even

30:17

be on screen or

30:19

I have to sleep through it .

30:21

Yeah , yeah , yeah .

30:23

Yeah , yeah

30:26

, so it's it , and it is well

30:29

. Everybody should help other people , because

30:31

that's I think , that's why we were put here on

30:33

Earth .

30:34

And it is a really good job at helping people . I mean

30:36

, I really appreciate it , yeah

30:38

, and how ?

30:39

about you , Tracy ? What are your thoughts on

30:41

attending the support meetings ?

30:45

I loved doing it in the beginning and

30:47

of course that's how you and I met

30:50

and I

30:52

really did get

30:54

a lot from them . I

30:57

kind of changed a little bit when spouses

31:00

started dying . That was

31:02

very hard on me and also

31:06

the group kind of started changing a little bit

31:08

and it

31:10

wasn't as tight knit group

31:12

. So I kind of stepped back

31:15

from that and I

31:17

plan to go back and yeah , you're

31:20

talking .

31:20

She's talking about the , the Saturday group , possibly

31:23

. Yeah , sadly it's .

31:24

It's become bigger , so it's

31:27

well , it's hard to stay tight knit , but

31:29

it's right , but

31:31

as we have grown , yeah

31:35

, and I do

31:37

better with small groups of

31:39

people and

31:42

sharing those intimate

31:44

things that we

31:46

would talk about , so

31:49

it's it's . It's a great

31:51

idea . I think that they're doing a great

31:53

job helping spouses

31:56

.

31:56

I just needed something different , so

31:58

I'm getting Well , I'm

32:00

going to , I'm going to go back in the 10-1 with

32:03

Tracy soon , so we'll hold each other's

32:05

hands virtually . But what are , what are your

32:07

? What are your thoughts on the Monday , Friday Cause

32:09

? I know you tried it .

32:10

I love them . I I

32:12

love the Monday Friday group . I get a lot

32:15

from them . Not

32:18

only do I get to hear what

32:21

their Lewy body patients are

32:23

feeling going through , I also

32:25

get to hear what

32:29

did we hear ? She's still there , okay

32:31

, sorry . I

32:33

get to hear from the Lewy body patients are going

32:36

through , but also what the spouses are going through

32:38

, and you know we're all

32:40

going through typically

32:43

the same thing . Many

32:45

times I've I have been blessed to

32:47

have Linda Curry's

32:50

Linda phone number and I've

32:52

called her and you know said help

32:55

Cause sometimes

32:57

that that Sam does

33:00

other people don't do or you know

33:02

, don't don't have a

33:04

problem with

33:06

, but it's just . It's

33:08

just like Curry says , if you meet one

33:11

Lewy body patient , you've met

33:13

one Lewy body patient and that

33:15

is so true .

33:17

So yeah , but it's , even

33:20

though we're well we were well

33:22

we're experiencing Lewy differently , we

33:25

still speak the same language . That's why

33:27

it's , you know , many of us in

33:29

the support groups

33:31

, the zoom meetings , have each other's private

33:34

phone numbers and you

33:37

know , just reach out and we need to reach out and

33:40

that's , I

33:42

think that's one of the powerful things that has

33:44

happened with with the groups , cause it

33:47

really it is a Lewy family

33:49

, you know , it just becomes a family who

33:52

we speak the same language , you

33:55

know , even if it might be different , a different symptom

33:58

. So , on a as you both , both of

34:00

this , it's up to you . Well , you probably

34:02

both want to weigh you . So , back in

34:04

2022

34:07

, we

34:09

all met for the first time when

34:12

Jim and I were on our well

34:15

, yeah , I think , one of our maiden voyages with the RV

34:17

trip , and then again

34:19

when I made it to Curry's um

34:22

and you both came to Texas

34:24

and surprised him Um . The

34:26

first time I met Sam and Tracy . We met at

34:29

a campground somewhere I don't remember Was

34:31

it near Montgomery .

34:33

Yeah .

34:34

And you know I've seen

34:36

Tracy and we talked . You know , and I

34:39

we hugged for like a really , really long

34:42

time . I just didn't want to let you go cause you

34:44

were to like one . You were the

34:46

first caregiver I met . Lewy caregiver

34:48

I met in person , so

34:50

can you both share how

34:53

powerful it is to meet somebody

34:55

in the support group in person ?

34:58

That meeting with you , linda , was very monumental

35:00

for me . Um , I

35:04

had been going through that for two years and it

35:06

just to hug you

35:08

and to meet you and

35:10

Jim , it

35:12

just meant the world to me and Sam and

35:14

we , if you

35:16

remember . But it was really late and

35:19

it was all these things that had

35:21

happened

35:24

that day that probably we shouldn't have met

35:26

, that we did and we made it on

35:28

purpose and it was just

35:30

very heartfelt

35:33

, yeah .

35:34

So yeah , it was the same with

35:36

us . We got there late because one

35:40

of the brake lights went out on the one the mini

35:42

Cooper we were pulling , and my

35:45

friend Manny thought he could fix it and Jim was

35:47

like we're not , we can't drive it without both

35:49

brake lights . And then that just wound up

35:51

. I

35:54

couldn't forget where it happened . I think I drove

35:56

it , but the brake lights wouldn't work

35:59

if we were hooked up to the RV , so we wound up

36:01

driving the vehicle separately . So

36:03

we got there like five hours later

36:06

than we expected to

36:08

get there . Um , yeah

36:10

, but that was yeah . That was pretty powerful

36:12

. How about you , sam ?

36:16

Oh , boy , that that I

36:19

remember . That afternoon it kept . It

36:21

kept being . You know , a few hours

36:23

later , a few hours later , a few hours later , and

36:26

um , so

36:28

I was , I

36:30

was really starting to feel sad for Tracy

36:33

because we had to be

36:35

home that night back in Atlanta

36:38

and and I knew Tracy

36:40

didn't like to drive at night A

36:42

great deal but , um

36:45

, but she really , she

36:47

really rose to the occasion with , as far

36:49

as patients , the measure

36:51

of patients that she had with the

36:53

situation , um

36:56

, that that made

36:58

a profound um

37:02

, um , it made

37:04

a , I

37:06

made a profound statement of

37:09

her dedication to

37:12

making this happen . I

37:17

don't like to talk about myself , I'm

37:22

not crazy to do that but

37:25

she was willing to make this

37:27

happen because I

37:29

needed to have it to happen and

37:35

it was when

37:38

we actually got to

37:41

where y'all had parked and we got to

37:43

meet y'all . That's when

37:45

I realized she

37:47

needed this as bad as she

37:49

felt like I needed this . But

37:52

she didn't convey that in

37:56

the previous hours in

37:58

trying to make it happen for me . But

38:01

just connecting with you , linda

38:04

, on that

38:06

personal level , seeing

38:09

how you manage with

38:12

Jim and

38:15

thankfully he's

38:18

our good friend now , but many

38:21

helping with all that and

38:24

seeing just how you went about

38:26

the next few hours and

38:29

witnessing it in person . Words

38:34

don't do it justice . So

38:43

, meeting Jim obviously

38:46

the first Louis patient I met it

38:48

was surreal and

38:52

I don't know if it was because of

38:54

the events

38:57

of the afternoon . And

38:59

then , all of a sudden , it's real

39:02

, and it's right here and

39:04

it's right now and

39:07

, like you said a while ago , being

39:10

able to give a bear

39:12

hug to a man that had a Louis body even

39:15

before my diagnosis . There was

39:18

such a connection and

39:23

our chemistry just clicked .

39:30

Yes , I have a lot of pictures of that

39:32

.

39:33

Yeah , so I

39:36

mean I could engage him in conversation

39:39

that he understood . He was very patient

39:41

with me , while

39:44

having difficulty finding words

39:47

, and that just astounded

39:49

me . You know

39:51

the people that I had been

39:54

talking to over the previous

39:57

year or two . When

40:00

I would pause to try to find words , they

40:02

would just start talking and

40:04

that was very frustrating for me . But

40:08

, jim , oh my goodness , you've

40:12

shared and we

40:15

experienced firsthand the gentle

40:18

nature of how

40:21

he was and

40:23

his dealings with people . Oh

40:27

my goodness , it was profound

40:30

. But

40:36

Tracy and I discussed that

40:38

meetup and it should only last

40:40

a short while because

40:45

we had , I think , and

40:47

we already planned the trip to Texas at

40:49

that point with

40:51

the producers ?

40:53

I don't think so . I think that was like a less

40:55

minute surprise thing .

41:02

Oh okay , but anyhow , we were needing

41:04

to get away from Montgomery

41:06

area and get back to Atlanta . That

41:09

wasn't meant to be , though , so we

41:11

drove into the

41:14

wee hours of the morning to

41:16

get back home , and

41:19

you know the power that

41:21

is greater than all of us

41:24

is what God has through

41:27

that was . You know

41:29

that was quite

41:32

an ordeal to get home , but

41:34

it was

41:36

worth it , yeah .

41:41

Yeah , and then .

41:42

Well , now we posted a really funny picture

41:44

of you guys were checking something

41:46

and I don't even I still don't know to

41:48

this day know what it is . It was something above

41:50

like a speaker or something , and I

41:53

think it was Manny which

41:55

reached up and then Sam was next reaching and

41:57

then Jim reached . I'm like I gotta get

41:59

it , reach for it , and I'm like I gotta get a picture

42:01

of this . And I posted on the support

42:03

groups like captioned this

42:05

because it was just , but

42:07

there were so many it's

42:10

like we've known you guys forever and same with

42:13

Curry , you know and so many

42:15

heartwarming

42:17

moments and laughter and

42:20

it was just yeah , and

42:22

then as much to us as it meant to you

42:24

guys , I just want you to know that

42:26

. And then the

42:28

backstory is with Jim and I

42:31

finally made it to Curry's we

42:33

. I had been in touch with Tracy and said

42:35

, hey , can you guys come out and just show

42:37

up , like a day or so after we

42:39

got there . So Sam got

42:42

to meet and Sam and Tracy got

42:44

to meet when Curry and his wife Linda

42:46

and that was pretty amazing

42:48

also because Curry's like what do you know ? They

42:52

walked to the door- and he's a great .

42:56

I've got to tell you all that my wife and I

42:58

well , just

43:00

like Sam Jim was the first person I

43:04

had met in person with Louis body

43:06

and Sam Sam was the second

43:08

and I just can't tell

43:11

you the feeling that comes

43:13

over you when you meet someone else with the

43:15

same disease as what you've got and

43:18

my wife needed you

43:20

two girls there too , and I

43:23

really appreciate that . But

43:26

it , like Sam said , it's an unreal

43:28

feeling when you meet someone

43:30

else but the same problem you've got .

43:32

Yeah , and your wife has . Curry's wife is very

43:34

quiet .

43:36

Yeah .

43:36

She's just a quiet person , but I

43:40

know we were talking and talking and talking and she

43:43

just totally open . She definitely needed

43:45

it . We all need to connect with

43:49

other caregivers that are doing this , helping

43:53

their loved ones , and it's if

43:55

you can you know you're

43:58

more than welcome for the listeners to post on

44:01

either of our Facebook pages

44:03

like hey , I'm from Montgomery , Alabama

44:05

anybody else in the area and try

44:07

to meet up with people , Because that's been

44:09

happening in amongst our support

44:12

groups as well , and

44:15

we try to , as much as we can remember

44:17

, to ask people to share about the support

44:20

meetings and meeting up with people , because it is very

44:22

, very powerful .

44:24

Yeah , we've got four people that live over

44:26

around . Well

44:29

, they're in North Carolina I can't think of the name of

44:31

the town , but anyway , they've

44:34

all been living there and they've just discovered

44:36

how close they are . So

44:38

they've been meeting like once a week to have

44:40

breakfast or dinner

44:43

, whatever . It is coffee and

44:47

it does . It really is

44:50

just something like you can't explain , yeah

44:53

.

44:53

Yeah , for sure . We're going to stop

44:55

here for now and pick up with part two

44:57

with Sam and Tracy next week .

45:00

And please remember , we want all of you to be a part

45:02

of our podcast series and share your

45:04

thoughts on topics you want to hear about . We

45:07

provide our email address below in the episode

45:09

description , so please feel free to send

45:11

us an email with topics you want to hear about

45:13

or you want us to explore . We'd

45:16

love to hear your feedback .

45:18

And our email is Lewie Body Roller Coaster Gmailcom

45:20

. Or you can Facebook Messenger with

45:23

our journey with Lewie Body Page

45:25

or our Lewie Body Roller Coaster Page

45:28

, because we really can't thank everybody enough and

45:30

remember we're doing this podcast for all of us and we appreciate

45:32

that you tune in each week .

45:35

Oaks . As always , we will continue to post the

45:37

link for the podcast each week for you in

45:39

our Facebook group our journey with Lewie Body

45:42

Dementia and our Lewie Body Roller

45:44

Coaster Podcast Group page , as

45:46

well as many other groups . So thanks

45:48

for joining us .

45:49

Until next week . This is Linda .

45:51

And Curry shining off .