0:03

I had my .

0:11

Welcome back podcast family .

0:13

Yes , Welcome back y'all .

0:15

And I was all Wait what that's

0:17

my line . So okay , mr

0:19

it's blue on this one

0:21

. What does it say ? Oh

0:24

my God , we're already we were just before

0:26

we start .

0:26

I just want to remind everyone that we're not giving medical

0:29

advice All right , go ahead .

0:31

You got the wrong page , mr . It's

0:34

very good , do do your

0:36

thing .

0:38

Okay , and we want to thank all of our listeners

0:40

and Facebook followers for your patience and understanding

0:43

. But first let's give a shout out to some

0:45

of our supporters . Uh , we've

0:47

got Jane Hooper , Bill Shipman , Antonio

0:50

and Barb , Eileen McGarady , Nina

0:53

Berg and Marge Can you sick yeah .

0:56

Right Now . You got to go find the page that and follow

0:58

me Because Got it my

1:01

. Just a reminder . We haven't done this in a while

1:03

. Um , I mentioned that

1:05

we do for weekly

1:08

zoom support meetings now and

1:11

we haven't shared and shared them in a while

1:13

. I'm giving , I'm I'm talking

1:15

slowly so I can find the right page . You

1:18

found it .

1:19

I think so Okay . All right For

1:22

some reason , folks , my computer

1:24

did not print up the first page and half of the

1:27

second page of my script , so

1:30

I'm kind of lost right now .

1:31

All right , you'll catch up . I think yeah , and

1:34

that's what happened last week too , but

1:36

anyway . So we just want to throw out reminders

1:38

to um the . The

1:40

link for these support groups

1:42

are under the announcements on both

1:44

the our journey with Louis body page

1:46

and the Louis body

1:48

roller coaster podcast , facebook pages

1:51

at the top under announcements , and

1:53

then all zoom meetings use the same

1:55

link . I just wanted to

1:57

throw out a reminder because we really haven't In

2:00

a while since we talked about our zoom meetings

2:02

and the times . Uh , mondays and

2:05

Fridays there are 1130 Eastern , that's

2:08

for , uh , anybody

2:10

who has Louis body seeking a diagnosis

2:13

or caregiver , so it's that's

2:15

kind of our mixed group . And

2:18

then there's a Louis

2:21

buddies meeting Thursdays at 430

2:23

Eastern PM

2:26

Eastern , not just for

2:28

those who have been

2:30

diagnosed or are seeking a diagnosis , oh

2:33

, curry , curry's solo on that one . Saturdays

2:36

at 3 PM Eastern is for spouses

2:38

only . And

2:41

then we now have a widows widower zoom

2:43

meetings , tuesdays at 430 Eastern . Again

2:46

, all those zoom meetings use the same

2:49

link under the announcements . So we hope

2:51

, I hope you consider joining and

2:53

, as curry said , people join me at somebody joined

2:55

today . Sometimes they turn on their

2:57

camera . Some

3:00

they they just you know say hey

3:02

, I'm just going to listen , which is fine , and

3:06

then you get the . It's uncomfortable . It's

3:08

uncomfortable for some people the first time they

3:10

go to attend the support meeting

3:12

, but most of the times eventually

3:15

people turn their cameras on and

3:17

then and then join in . But anyway

3:19

, I just wanted to remind everybody about

3:21

those meetings .

3:23

Okay , I'd like to give another reminder that we're

3:25

only sharing our experiences , not giving

3:27

any medical advice . We're just sharing

3:30

experiences and personal journeys . So

3:32

let's get this thing started this

3:34

week . Please welcome our friend , mary Moans . Miriam

3:36

, could you introduce yourself , tell us for

3:39

you or from , and how long ago you were diagnosed

3:41

and how old you were , and then we can

3:43

ask you some more questions , if that's all right .

3:46

Okay , sure thing , kerry . Um , thanks

3:49

for having me on . My name is Miriam

3:51

Owens and , um , I

3:54

am from New York originally , but

3:56

I currently live in Richmond , virginia . Um

3:59

, I was diagnosed in December

4:01

of 2022 . Uh

4:04

, I was 54 years

4:06

old at that time . I'm currently , uh

4:09

, going on 56 . Um

4:12

, so , yeah , I've kind of newly

4:14

diagnosed , but we can talk about it , I

4:16

guess , during the podcast house . I think

4:18

my symptoms really went back . Um

4:21

, some of them are good , good ways

4:23

before that , yeah .

4:25

Perry always says you can go

4:27

back . What ? Eight years maybe ?

4:30

I can go back eight years before

4:32

I was diagnosed .

4:33

Yeah , yeah . And then I always one

4:36

of those things I wish I could ask Jim , I'm

4:38

just curious of how many you know

4:40

. I know when we used to hold hands

4:43

he used to do that . What you

4:45

know he's the . His wrist

4:48

used to um , how to describe this snap

4:50

back and forth as we're holding hands

4:52

. But I don't know how

4:54

far that goes back , um

4:56

, but that's normal to hear that usually

4:59

you have symptoms , symptoms many years before

5:01

even go um , yeah take

5:04

a diagnosis . Um

5:08

so , all right , thank you . Are you up , yeah ?

5:10

Miriam , can you share with us some of your first

5:13

symptoms ? You had the ones that made you

5:15

seek medical attention , and

5:17

that is what were some of our earliest . That

5:21

is what some of your earliest symptoms .

5:23

Okay , so

5:25

so , yeah , um , some

5:27

of I think that one of my earliest

5:29

symptoms , um was

5:32

like brain fog and

5:34

just uh

5:36

, having some trouble thinking uh

5:39

, which , at the time , um

5:41

, I am my neurologist

5:44

. I did have a neurologist at that time who

5:46

was following me for another condition

5:48

. We just attributed the

5:51

brain fog to that , and so

5:53

, you know , we

5:55

didn't even think or talk about

5:57

dementia at that point . What

6:00

prompted me to ask my

6:02

um neurologist for referral

6:04

to a movement disorder specialist was

6:07

, uh , that I started to have

6:09

some really , um

6:12

, significant lapses

6:14

in short-term memory , Uh

6:17

, I mean just

6:19

no recollection of

6:21

things that had happened just

6:23

minutes before sometimes , and

6:26

you know I was in

6:29

complete disbelief . You know my family

6:31

would say , yeah , you did , just

6:33

say whatever , you know , blah , blah , blah . And

6:35

I'd say , no way , I did not . You know

6:37

, I would know if I said that

6:39

. And so it happened , uh

6:42

, a few times and

6:44

it was enough to make me think , okay

6:47

, something's not right . And

6:50

so I did go back to my neurologist

6:52

and , um , by the time I got to

6:54

see her because I had to wait a little bit to get in

6:56

I had developed a resting

6:59

tremor in my right hand

7:01

and so when

7:03

I got to her . I had that to report as well . So

7:06

there were the short-term memory issues

7:08

and the tremor

7:10

, the resting tremor , and

7:13

she , uh , recognized

7:15

that those could potentially be , you know

7:17

, related to a movement disorder

7:19

. So she referred me to

7:21

a specialist , a movement

7:23

disorder specialist , and he was the one

7:26

who gave me this diagnosis .

7:28

So they even said

7:30

that the short-term memory could have been part of the

7:32

movement disorder . Or

7:35

they just sang you a tremor .

7:36

Just my tremor . I don't

7:39

think even she at

7:41

that point wasn't thinking that dementia

7:43

might be a possibility , one

7:46

because of my age . You know

7:48

, even in the medical field

7:50

, a lot of doctors , neurologists

7:52

even just don't think

7:55

, you know , dementia

7:57

can affect those who are younger

7:59

. Um , I mean , there are lots

8:01

of people younger than me who have dementia

8:04

. So I'm not , I'm not

8:06

sure why they're so quick to rule

8:08

that out . But she referred

8:10

me to a doctor , uh movement

8:13

disorder specialist , who fortunately

8:15

was very , very um familiar

8:18

with Lewy body , dementia

8:20

, parkinson's , you know . So

8:23

he , he understood , he , he took

8:25

a detailed history . I

8:27

came to him with a detailed

8:30

uh symptom log which

8:32

was helpful in making the diagnosis

8:35

along with the neurological exam . So

8:37

, um , because

8:39

my cognitive symptoms

8:42

preceded my motor uh

8:45

symptoms that had a lot

8:47

to do with why he felt it was Lewy

8:49

body , um , and

8:53

yeah , that's kind of what got me on

8:55

this path . My

8:57

path to diagnosis wasn't really

8:59

as convoluted , I think , as a lot of

9:01

people , unfortunately , you know

9:03

some people it takes years and

9:06

I know that . But

9:08

I'm fortunate in that I was able to quickly

9:10

get diagnosed and on medication

9:12

almost right

9:14

away .

9:15

Yeah , you are fortunate .

9:17

Hey , miriam , we're talking about the

9:19

doctors being reluctant to diagnose

9:22

people who are younger with

9:24

dementia . I

9:29

went to my first doctor's appointment in

9:32

2016 . And

9:36

in the year 2016 , I went to eight

9:38

different doctors and

9:40

my wife and I asked

9:42

each and every doctor could this be

9:44

dementia ? And they all

9:47

said no , except for the lung

9:49

doctor , and the lung doctor thought

9:52

I was because of the hallucinations

9:54

and the other things I was telling him . He

9:58

thought I was having frontal temporal

10:00

seizures , you know

10:02

, and he tried to get me to go to his

10:04

buddy a neurologist , but my

10:07

insurance wouldn't cover that one , so we

10:09

didn't do it . But yeah , I

10:12

found that they are really reluctant

10:14

to say the word dementia to anyone

10:16

who's under 65 ? They really

10:18

are .

10:20

It's very interesting to me . I

10:23

went for a second opinion Once

10:25

I had the diagnosis . I believed it to be

10:28

accurate . But with a diagnosis

10:30

like Lewy Body Dementia , of

10:33

course you want a second opinion and

10:36

so I sought out another movement

10:38

disorder specialist in my area

10:41

. He was really

10:43

highly recommended in

10:45

the community . I got my you know

10:47

, waited for an appointment , I got him with him

10:49

and it's almost

10:52

like he totally disregarded

10:54

my treating physicians

10:56

diagnosis of Parkinsonism

10:59

and dementia with Lewy Bodies

11:01

and he really just looked

11:03

at me and he

11:05

was so hung up on the fact that I

11:07

was on the younger

11:10

side so

11:12

, and he even said to me you

11:14

do know you're 55 or you

11:16

know however old I was , and I thought , oh

11:18

yeah , I know how old

11:20

I am , I mean , but

11:22

you know , it was kind of insulting honestly

11:24

, and I

11:27

just didn't feel hurt or seen and you

11:29

know , needless to say , I didn't go back to him

11:31

and yeah

11:33

, I've just stuck with my original

11:36

doctor . He's been spot

11:38

on with his diagnosis and

11:40

treatment of my symptoms

11:43

. So but yeah , unfortunately

11:45

it seems to be far more common

11:48

than it should be , which

11:50

is why I'm glad you guys are doing what you're doing

11:52

with this podcast and the Facebook groups

11:55

.

11:56

Yeah , yeah , that's all we always say . We

11:58

really wish we could just get all the everyone's

12:01

doctors to listen to the

12:03

episodes where people like

12:05

yourself who have a little body come on

12:07

and describe the symptoms and it's

12:10

I don't know . I guess eventually

12:12

we'll stop being curated when people

12:14

just say

12:17

you're too young to have a dementia I don't want

12:19

to call it really body dementia

12:21

just yet Like they're afraid to say it and

12:25

when we all know there's medicines that

12:27

help , you know , to help some of the symptoms

12:29

. So so you

12:31

went to two movement specialists and then to

12:33

this new person that you decided

12:36

not to go back with . Did they do any like cat

12:38

scans , cat scans , any

12:40

of that ? Or did you get a ? Clinical

12:43

symptoms , clinical diagnosis

12:45

?

12:46

I got the clinical diagnosis and

12:51

you know that doctor prescribed medication

12:53

. You

12:56

know I started taking it the month after I saw

12:58

him , which was last

13:00

January . Eventually

13:03

I did do the SIN1

13:06

skin test I

13:10

was about the middle of last year

13:13

which came back positive for one

13:16

of the sites out of the three came

13:18

back positive . So that , along

13:21

with symptoms and

13:24

the neurological exam that he

13:26

had done , you know , was enough for

13:28

him to say with a

13:30

good amount of certainty that this

13:33

was Louis body dementia .

13:34

Yeah , yeah

13:37

that , if you don't know

13:39

what Miriam's talking about , there's

13:41

a SIN1 skin test

13:43

that we did , an episode probably

13:45

last year . We had him on

13:47

three times I don't know if it was last year , it might have been

13:49

2022 . But you can look it up . It's

13:56

SYN-ONE , just

14:01

SIN1 test for Louis

14:04

body dementia , and it'll come right up and

14:06

you can read information . And

14:08

they just do , I think , three punch biopsies

14:10

on your skin , different areas . That

14:13

seems to be one of the well

14:16

the newest test to

14:18

help diagnose LBD .

14:21

And the people who diagnosed , who

14:23

came up with that procedure . If

14:26

you want to look it up that way , it's C and

14:28

D life sciences .

14:30

Yeah , yeah , c

14:32

. And then the letter , letter

14:34

C , the letter N is a Nancy and then

14:36

D is a Dald . Yeah , d

14:38

and D , life sciences , yeah , and

14:40

now I look that you're like I can't remember the name of the company

14:43

, but

14:45

you remembered it so clearly

14:48

. You're on a younger side , which , but sadly

14:50

we have people in our support group that are in their 40s

14:53

that were just diagnosed , and

14:57

I think we even had one in the late 30s

14:59

. Do you think

15:01

? Well , you mentioned that

15:04

your age hindered your diagnosis

15:06

, whether things that doctors

15:08

were talking your symptoms up

15:10

to as women issues at first

15:13

. Do you think ?

15:16

I don't think so much women's

15:18

issues . I think that , like

15:22

I said , I have a coexisting

15:25

autoimmune . It's

15:29

called sarcoidosis

15:31

and I'm not sure

15:34

how familiar you are with that , but

15:37

it's neurological in nature and it's

15:40

an inflammatory condition . It can

15:42

affect pretty much any part of your

15:44

body , but most commonly

15:46

the lungs and lymph nodes

15:48

. So I think that a

15:50

lot of my early symptoms

15:53

were kind

15:55

of attributed to that condition

15:58

. I

16:00

believe them to be caused by that

16:03

as well . It wasn't until

16:05

I really started with

16:07

the short-term memory lapses and

16:12

I almost felt as if they were episodes

16:15

, like I had missed time

16:17

passing . I

16:21

just had no recollection of things

16:23

happening and it was scary

16:26

. Not

16:28

so much women's issues , but I think it just

16:30

got kind of dumped on this other

16:32

condition that I'm dealing with .

16:35

Now , yeah , it makes sense , because

16:38

Lilly does have issues with autonomic

16:40

system and inflammation

16:42

and

16:46

he kind of touches a lot of things . He

16:49

was calling him a he . Sorry , james

16:51

, he , as

16:53

I say , was not with a nice voice .

16:56

Miriam , were there any other unique challenges

16:58

that you faced that you haven't shared already

17:00

? As a person living with early onset

17:03

dementia , maybe some advice you'd

17:05

give others in your age group when it comes to seeking

17:07

the help symptoms you were having ?

17:11

Well , the first thing I say is don't ignore your

17:13

symptoms . It's

17:15

real easy to second-guess yourself

17:19

. I

17:21

think all of us do it . Sometimes we

17:24

just say , oh , I'm just tired or

17:28

I'm just stressed out , or

17:32

we just second-guess and dismiss our

17:35

symptoms . But my advice

17:37

would be , if there is something going

17:40

on that is troubling and

17:42

or persistent , it's

17:44

worth looking into just

17:48

to see what might be going on . As

17:50

far as struggles

17:53

that have been unique to me

17:56

, being a person with younger onset

17:58

, louis Body I

18:01

would say I was still working

18:03

when I

18:05

was diagnosed . I

18:08

had a thriving childcare

18:10

business and I

18:13

ultimately had to make

18:15

the choice to close it because

18:18

, needless to say , the kids are cute

18:20

but they are extremely stressful

18:23

. I

18:25

had to choose . I knew that stress would

18:27

probably escalate

18:30

things as far as my condition and

18:33

I certainly wanted to be able

18:35

to have as much quality

18:37

time with my family as

18:39

possible . I didn't want the

18:42

stress of working in

18:44

the business I was working in to take away

18:46

from that . So yeah

18:48

, having to walk away from one's

18:50

livelihood can

18:55

be difficult and it was difficult for me . It

18:57

still is difficult

18:59

, but I'm adjusting . I'd

19:02

say the other thing is maybe just

19:07

questioning everything . Louis

19:11

makes you question , you

19:15

know , can you start to

19:17

doubt yourself because it's like , can I do

19:19

this , things that you may have

19:21

been perfectly capable of doing in

19:24

your life ? But

19:26

I think Louis kind of chips away

19:29

at my self-confidence

19:31

. It has chipped away at it to

19:35

the point where I wonder

19:37

if I'm capable

19:40

of doing certain things and

19:42

if I am physically capable of it , should

19:45

I even be doing those things ? Driving

19:49

, for instance , I

19:52

stopped driving because I was having

19:54

visual hallucinations

19:57

and having

19:59

trouble distinguishing sometimes between

20:02

what was real and what wasn't , and

20:05

to

20:07

me it just seemed like it was

20:09

really not that different from someone

20:11

who was maybe driving under the

20:13

influence and not able

20:15

to fully understand

20:17

and comprehend what was going on around them

20:19

. So I did stop driving

20:21

. So that was kind of a big challenge , because

20:24

when

20:26

you drive you can get where you want to go when

20:29

you want to go . So

20:32

it just adds another layer

20:34

of that

20:38

contributes to the isolation

20:40

that sometimes comes

20:43

with a disease

20:45

like this . So

20:49

I stopped driving , I stopped working

20:51

, questioning

20:58

what I'm thinking or seeing . I mean

21:00

, louis just makes you question everything

21:02

. Did I really see that ? Where

21:08

did I , I mean ? And then those thoughts

21:10

that just I

21:13

just say they're really fast , little things . They

21:15

just , you know , having

21:18

thoughts on a bad day , on a bad Louis

21:20

day . It's like constantly

21:22

chasing my own thoughts

21:24

because they just they

21:27

come and they go . They come and they go , and

21:29

so I'm in a constant state

21:31

of flux some days and trying

21:34

to figure out why I'm standing in a particular

21:37

room . What was I doing ? And

21:40

that's hard sometimes

21:42

, because people look at a younger person

21:45

and think

21:47

, oh , that's not dementia

21:49

. I do that all the time . I forget

21:51

my keys or I

21:54

forget why you know why I've gone

21:56

into the kitchen . Yes , everyone

21:58

does it on

22:00

occasion , but

22:02

when it is really

22:04

pervasive and it's something

22:06

that just kind of takes hold of you

22:09

and won't let go to

22:11

the point where you just literally question

22:13

everything , and it's so exhausting

22:16

Sometimes I just feel like my

22:18

brain is just going to explode because

22:20

the thoughts

22:22

are so hard to

22:25

contain and put in order sometimes

22:27

that I just want to stop thinking all

22:29

together . And so that's

22:31

when I , like today

22:33

has been one of those days . So the

22:36

television hasn't been on , because

22:38

listening to people

22:40

speaking is a

22:42

trigger . You know , like the TV

22:44

and you know just

22:47

, it's just really tough

22:49

to adjust to your

22:51

brain Just

22:54

doing weird stuff . I mean honestly

22:56

, louie makes things screwy .

22:58

Yeah , well , I'd like to . Sadly , that's

23:00

. We were just talking about that in our

23:03

Zoom today . What , what were you going to say ? I saw

23:05

your pen .

23:06

Oh , I was going to say you mirror me talking

23:08

about people

23:10

, if they're having symptoms , go check , go

23:12

get checked out . We

23:15

can't emphasize that enough

23:17

because , just like we

23:19

did in my case , for the first eight

23:21

years we put it off as I

23:24

was first off , I was getting older , put

23:28

it put off that I was just working too many hours

23:30

and then I wasn't getting enough sleep . And

23:33

we did that for seven , eight years

23:35

and then finally I had a an

23:38

awakening when I was out in California

23:40

one day that I better get to the

23:42

doctor . And that's when I

23:44

let my wife go ahead . She had been trying to get me

23:47

to go and I just wouldn't do it because

23:50

we were saying my symptoms

23:52

were caused by everything except dementia

23:54

, you know . But yeah , we can't

23:56

. We can't emphasize enough that people , if

23:59

you're having symptoms that you normally don't

24:01

have , go , go get checked out .

24:04

Yeah , that's all I wanted to say Linda , all

24:06

right , that's something good to say . Yeah

24:09

, because it's you know , when

24:11

you get older , you know things

24:15

are going to happen as we get older . But yeah

24:17

, and it's good to start

24:19

with the early symptoms , because

24:21

then you have like a running record of things

24:24

that are going on . So I was

24:26

going to say yeah go ahead .

24:27

Symptom log . I was going to say a symptom

24:29

log If you , if you

24:32

know if a person can manage to keep

24:34

on , maybe not even like

24:36

a whole lot of detail , just kind of you

24:38

know a date and what happened is

24:41

really , really , really helpful For me . I

24:43

did it because I wouldn't remember to

24:45

what to tell the doctor anyway , but

24:47

he used that and it

24:49

did help him with making a diagnosis

24:52

.

24:52

Yeah , we always tell people to write

24:54

it down . Yeah , and your , your wife , had a whole

24:57

binder , right ?

24:58

Yeah , yeah , I did she . I was lucky

25:00

. She wrote down every night she was

25:02

right down what I had done that day , you

25:05

know and she carried it into

25:07

the doctor's office .

25:09

Yeah , so that's important . So , mary

25:12

, what part of Louis do you find most difficult

25:14

? You know , I know you've just spoke of a few , and

25:17

how do you cope ? Because you had told

25:19

me that Louis is an illness that takes away

25:21

so much , but you try to see yourself

25:24

as someone walking with it , not suffering

25:26

from it , which was that's a

25:28

powerful statement , right there .

25:32

Yeah , the most difficult

25:34

pieces for me

25:36

are the , the interference

25:38

, the way it interferes with my

25:41

cognition , which

25:43

is really broad , because , you

25:48

know , historically I've just been

25:50

a person who was , you

25:52

know , like this , planning

25:54

, I planned everything . You

25:56

know , some people might

25:58

say a type A personality , you

26:01

know , just really I have

26:04

always been able to organize things

26:06

and kind of really sharp mentally

26:10

. And so the hardest

26:12

thing for me is you

26:17

know , the funny thing about dementia

26:19

and to be aware that

26:22

I am a dementing

26:25

, actively dementing

26:27

which is

26:29

hard is that I

26:32

don't always know . It's

26:35

thinking , you know , when you don't know . That's

26:37

the hardest part for me . So

26:40

my perception tells me

26:42

that I am carrying

26:45

on , sometimes as usual

26:47

, and then the feedback from my

26:49

husband or one of my adult

26:53

children might be , you

26:55

know , mom , why would you , you know you

26:57

just said this or that , or why would you

26:59

think this or that , which I think is totally

27:02

normal . And so I think

27:04

I'm , you know , losing cognition

27:07

, the

27:09

normalcy , if I can say

27:11

that I

27:14

don't like the word normal , but I

27:16

think you guys know what I mean , just

27:19

what I have become used to and

27:21

not knowing what to expect

27:23

from day to day because

27:26

of the fluctuations in

27:28

cognition . And you

27:31

know , one day honestly

27:34

and I know I'm not alone in this , it's just

27:36

one of the characteristics of Louis body

27:38

I can be so

27:40

sharp , just I almost questioned

27:43

the diagnosis myself . It's like there's

27:46

no way . I mean I'm this , is

27:48

, I'm fine , and

27:50

then the very next day

27:52

, sometimes , or maybe even

27:55

later that same day , I'm

27:58

just , I'm on the sofa and

28:00

you know , I can't , I

28:02

don't want to think , I can't talk

28:05

, I'm just it's

28:07

. Those fluctuations just

28:09

are so frustrating

28:12

.

28:14

You're not alone in that , because we hear

28:16

that all the time .

28:18

Yeah , that's pretty common .

28:19

Yeah , it's really fresh . For me . That's probably

28:22

the most frustrating part . And

28:26

then choosing to see myself as somebody

28:28

walking with it as opposed to suffering

28:31

from it . I think it's just a matter of perspective

28:33

for me . If

28:38

I see myself as as

28:40

a person , suffering is

28:43

almost as if I've

28:45

got to spend all my time and energy

28:48

trying to beat it

28:50

. And you know and I'm not necessarily

28:53

living my life trying to beat

28:55

Louis body I'm trying to live

28:57

my life every day as

29:02

productively and meaningfully

29:04

as possible with

29:06

Louis body dementia , because that's

29:08

become a part of who

29:11

I am and it's become a part of

29:13

my life . I

29:15

don't remember getting in line and

29:17

saying , hey , you know , pick me

29:19

, but this is the hand I've been dealt

29:22

and I'm

29:24

just walking with it , trying to make

29:26

the best of . You

29:29

know what's not the best situation

29:31

, but it's mine .

29:32

You're learning to live well with Louis .

29:34

Exactly . I'm just going to say that .

29:36

That's something I always try to tell people is

29:38

you . You can live well with Louis .

29:41

Yeah , yeah , and then find

29:43

purpose . I would mention you . You , you

29:45

found light and peace in the most unlikely places

29:48

. Are there any examples you could share about

29:50

that ?

29:51

Yeah , um

29:53

, for me , helping

29:55

, helping and encouraging other

29:57

people , in spite

29:59

of my own Right

30:02

. And what I mean

30:04

is I have found

30:07

that when , when my focus

30:09

is not

30:12

so much on myself and

30:15

wondering you know , what's

30:17

it going to be like in a year or five

30:20

years , or , you know , am I still going to be

30:22

able to do this or that , you know , and just all

30:25

the questions that I could probably spend

30:27

all day , every day , asking , and there

30:29

are no answers . Right now , I

30:31

just feel like light

30:34

and peace for me comes

30:37

with encouraging

30:40

somebody else , and not necessarily just

30:42

other people , with Louis , just in

30:45

a world where you could be anything . It's

30:47

it's cliche , but it's true , you

30:49

know , be kind , and so

30:51

I do go out of my way to do positive

30:55

things for people , other

30:57

people , um .

31:01

And so we shop , for everyone should do .

31:03

Yeah , just bringing light , kind of be

31:05

a light , and bringing light to other people

31:08

is what is

31:10

what makes this Usually

31:14

, makes this a bearable kind

31:16

of journey .

31:18

Yeah , and I know you , kerry , like

31:20

I , I , I

31:23

at least I got to believe that

31:25

I mean you . He gets many texts

31:27

a day and calls and you always

31:29

answer him or respond and that kind

31:32

of takes you away from your own

31:34

Louis struggles .

31:36

Yeah , it helps me .

31:37

Yeah , to help you , to help other

31:39

people . I know it wears you out sometimes

31:41

, but Um , yeah .

31:43

I don't always get back to him the day that they

31:45

text me , but I do . I get a lot of messages

31:47

each day from different people

31:49

. Yeah

31:51

, I , I should . I may not get back to answer them today

31:54

, but I will tomorrow or the next day . I

31:56

try to answer everyone .

31:58

And I'm glad you answered mine because I just recently

32:00

found out he thought I was going to

32:03

keep bringing that up . He

32:06

just confessed that to me . Yeah

32:09

, not crazy .

32:11

And you had mentioned to us about well-meaning

32:14

people making unsolicited advice

32:16

. Can you share a little bit about that

32:18

?

32:19

Yeah , you know . By

32:21

that I mean you know people mean

32:23

well , but

32:26

when they say things

32:28

like , um , you

32:31

know you just need to take this

32:33

vitamin or or

32:36

that supplement , or

32:38

you know , do this exercise

32:41

. Um , if

32:43

you would just do that , you know you'd

32:45

be okay and

32:49

you know it's it

32:53

is , I'm just gonna say it's

32:55

, it is annoying . I mean I know that they

32:57

mean well , but dementia

33:01

is a real thing and it doesn't go away because

33:03

you , you take a vitamin . You know it , it

33:05

or ? exercise or

33:07

or yeah , it's not . And

33:09

you know , when people , I know they don't

33:11

mean to , but for me , when

33:13

people say things like that to me , it

33:17

feels like . It

33:20

feels like blame , it

33:24

feels like they're saying

33:26

without saying it Well

33:30

, you know you're responsible for that

33:32

. If you would just do

33:34

this or that

33:36

, you'd be fine .

33:38

Yeah , you want to know the

33:40

, the one that I really uh

33:43

, get your goat . It really got my goat

33:45

and it was from a relative , Miriam

33:49

. They told me that if I had been right with God

33:51

, I wouldn't have got sick .

33:53

Don't get me started on that , oh yeah .

33:57

Like , and I really do think people mean

33:59

well , but it's , I

34:02

mean I . How many people have we interviewed

34:04

, even on this podcast , who doctors like

34:06

well , if you just lost some weight or you just exercise

34:09

more , I mean they told Jim , you got to , you

34:11

know , move more and do this more , and you

34:14

know , it's just .

34:16

I guess they mean well , they just it's

34:19

, it's the last thing a person

34:21

walking with a chronic illness like Lewy

34:23

body needs is

34:26

hard enough . You know , um

34:28

, yeah

34:30

, we know . I mean all of us are different

34:33

, but when you're diagnosed with

34:35

dementia , lewy body in particular

34:37

, you know we understand um

34:41

, or our doctors have explained to us

34:43

and other like you , the , the Facebook

34:46

groups I've gotten more information on

34:48

there on my far from any

34:50

than I have from anywhere else but so

34:52

we understand prognostically where

34:54

we're headed , what's going on , what could have

34:56

. We get that . But to have

34:58

the people , the very people who

35:00

should really just be interested

35:03

in supporting us through

35:06

this Um , and

35:09

I guess they mean well , because I guess they want to

35:11

fix it yeah , so

35:14

they're , they're sharing what they think is

35:16

going to fix it , but it would

35:18

be so much better if they would just come alongside

35:21

and and just walk with

35:24

us .

35:25

You know , I , I like , I like the

35:27

way you put that . Yeah , it makes , it makes sense

35:29

. It's just , we would probably

35:31

could write a whole chapter in a book on , on things

35:34

that people say

35:36

and mean well , or

35:38

even doctors that have

35:40

been a whole . Oh , you just need to leave a few pounds

35:43

, you'll be fine . And

35:45

that's not as simple as that . Yeah

35:48

For sure .

35:49

Miriam . Yes

35:51

, sir , I have met

35:54

black people

35:56

before who had

35:58

a really hard time getting diagnosed

36:01

Uh , no-transcript

36:04

because they don't . They

36:07

lived in the inner cities and they don't get

36:09

the same amount of healthcare that

36:12

we do . And did you

36:14

have any of those problems ? Did your

36:16

race ? Being a woman of color , did

36:19

that have any hindrance on you getting

36:21

a diagnosis ?

36:24

I don't think it hindered my diagnosis

36:26

. But I think what is

36:29

remarkable and work

36:31

mentioning here is

36:34

that having dementia and Parkinsonism

36:37

has kind of thrust me into

36:39

circles that I would not have otherwise

36:41

been in and it is

36:44

. I'm always blown

36:46

away by the fact that there are

36:49

few , if any , people

36:51

of color in those

36:54

circles and so

36:56

it makes me want . I mean I

36:58

personally think and I don't know , I

37:00

mean I haven't done

37:02

any real analysis , but

37:04

I'm just I've thought about why

37:06

that would be the case and I think , kind

37:09

of like healthcare , maybe

37:16

there is some cultural

37:18

reasons for that . I

37:22

know in some communities not

37:25

all , but in some communities people

37:27

of color are sometimes

37:30

hesitant to

37:32

go and really press

37:35

in to get a diagnosis

37:37

such as dementia . In

37:42

some cultures dementia

37:44

is kind of like a subject

37:46

no one wants to talk about . You know

37:48

that

37:51

their excuse is made and I've heard

37:53

things like that . I have family members who

37:56

have had dementia

37:59

and they've

38:01

gone for years because they

38:03

were just regarded by other family members

38:05

as , oh well , you know , it's just Uncle So-and-So

38:08

and

38:11

he just does that . But

38:14

there's no real pressing to get an

38:16

accurate diagnosis and treatment

38:18

. So I

38:21

don't think it was a barrier for me being diagnosed

38:24

, but I do know that those

38:27

are barriers for other

38:29

people of color access

38:32

to quality healthcare . You

38:35

know , and then I said I always already

38:38

said you know perhaps just some different

38:40

cultural perceptions about healthcare

38:42

in general ?

38:44

Yeah , for sure . I know you share with

38:46

us about the Rocksteady

38:49

Boxing Program because that's a Parkinsonian

38:52

program , correct

38:54

? You wanna share with us

38:56

your experience with that ?

38:58

Yeah , it is . I

39:02

was fortunate to be able to even find one

39:04

locally , because from

39:06

what I understand , they're not everywhere

39:08

. You know , sometimes people wanna get in

39:10

and they drive like

39:12

sometimes hours to get into one

39:14

. So I found one here and I was really

39:16

excited about it . I

39:19

started to go to class . I was

39:21

the only person of color in the class

39:23

and that's okay , you know . I

39:25

just feel like when

39:27

you're dealing with something as

39:29

serious as dementia and Parkinsonism

39:32

, race well , race should

39:34

never be an issue , but especially

39:37

when we're talking about health

39:39

challenges as significant as those . But

39:42

anyway , I started

39:44

attending this boxing class and

39:49

there was a gentleman there who

39:52

never spoke to me Ever

39:55

since . He never said hello . All

39:57

he did was glare

39:59

at me with

40:02

such hatred . It

40:06

was really distracting , it was

40:08

. It made me

40:10

very uncomfortable . I

40:12

didn't feel physically threatened by him , but

40:15

it did make me feel that there was at

40:17

least one person in the room that didn't

40:19

want me there , and it's

40:22

not so much . You know . I did stop going

40:24

and it wasn't . You know some people will

40:26

say , oh , you gave him your power and

40:28

you let him , you know

40:30

, make you not go , but

40:33

it honestly just felt

40:36

like another layer

40:38

of stuff , like

40:41

I had enough to deal

40:43

with it . I just didn't want to go there

40:45

and have to deal with that too . So

40:47

I stopped going , mainly

40:51

because of this man who

40:53

was , you know

40:57

, very , very hateful . Silently he

41:00

never said anything to me , but he

41:03

was so distracted by my presence

41:05

that he was , like it

41:07

, messed up his workout , like he would forget

41:10

where he was supposed to be and what he was supposed

41:12

to be doing because he was just staring at me

41:15

, like he was so upset that I was even there

41:17

.

41:17

So Well then , the people running

41:19

the program . I guess they were just so

41:21

busy trying to .

41:23

Yeah , kind of a bit I didn't even notice .

41:25

Yeah , oblivious to it .

41:27

Yeah , I was just kind of oblivious to it .

41:30

But you did . Yeah , I

41:32

can hear the people saying you gave up your power

41:34

to this person , but you know you

41:36

and you did what you know you needed

41:38

to do to

41:41

keep from another layer of something

41:44

added on top of everything

41:46

else you're going through . So

41:48

kudos to you for standing up and

41:50

you knew what you couldn't

41:53

handle and honestly , I don't think I would

41:55

have stayed either , because he

41:57

wants to be in a place like

42:00

that for sure .

42:01

Yeah .

42:05

Let's say , kari , do I I

42:08

think you mentioned something about one

42:11

of your doctor's offices is doing a qualitative

42:14

research about healthcare

42:16

and disparities . You wanna share about that real

42:18

quick ?

42:19

Yeah , so there's

42:22

a position in the movement disorder

42:24

clinic where I'm treated . She's

42:28

not my doctor specifically , but

42:31

she works with the other

42:33

neurologist there and

42:35

she is doing she has already done

42:37

some studies , but she's doing another study

42:40

to

42:42

just research some of the whys

42:45

behind the

42:48

disparities in healthcare and

42:50

what we can

42:52

do to

42:54

bridge the gap there

42:58

. And there's already been research

43:00

to prove and show that

43:03

it does exist that there

43:05

are disparities in healthcare . So

43:07

she's asked me to be

43:10

a part of that research , which I'm

43:12

really , really excited about . I

43:15

have no idea what she would want me to

43:17

say or do , but I'm just happy

43:19

to be a part of something like that because it is

43:21

important . And

43:24

if I could say that if

43:27

having I mean obviously

43:30

would never want to

43:32

have Lewy body I don't think anybody wants

43:34

something like this , but if

43:37

that's the hand I've been dealt , then

43:39

I wanna do stuff like that with it . I

43:42

want to raise awareness

43:44

, I want to talk about healthcare

43:46

disparities and

43:48

as long as I'm able to do stuff like that

43:50

, that's what's gonna bring

43:52

me the most joy helping and encouraging

43:55

, furthering research

43:57

, that kind of stuff .

43:59

Yeah , and we always well I always say help

44:02

and make the lives of those behind us

44:04

to get that Absolutely A

44:06

little easier . So and

44:09

I'm glad you're gonna do that study because

44:11

disparities in healthcare and

44:14

I know Dr Sarah was on , she

44:16

has Lewy body , she was on

44:19

probably our first season

44:21

several times and

44:23

she just posted something in the groups about

44:25

a study being done about

44:29

women and Lewy body . But first

44:31

of all I just wanna say we so appreciate

44:33

you coming on and sharing and your

44:35

experience and sense . Again , we've

44:38

heard many times that women

44:40

seem to struggle more than men , which

44:43

it seems crazy because it's

44:45

a struggle just to get diagnosed . And on

44:48

top of that , women seem to get have

44:50

a harder time getting diagnosed . And

44:53

if you look back on that I think it was in

44:55

the last week Dr

44:58

Sarah posted some

45:00

research or some article about that

45:02

. I

45:05

think I saw that , yeah , yeah . So

45:07

I'm glad that more like she's been

45:09

really pushing like how you got

45:11

involved , what you wanna get involved with your

45:13

doctor's doing , she's been really pushing

45:15

and work with other women neurologists

45:19

to try to not

45:21

make the male female such a

45:23

big disparity when it comes to diagnosis

45:26

. So what final

45:28

advice would you give other women who are

45:30

seeking a diagnosis or already

45:32

have one , or men too , but what's

45:36

wrong with that ?

45:36

So I would say to them

45:38

, male or female , follow

45:45

your gut . I mean , if

45:48

something's not right , and you know it's not

45:50

, keep

45:52

pushing until you find someone who's going

45:54

to listen and

45:56

it's okay to fire a doctor

45:59

, you know . I mean , you choose

46:01

the physician and if

46:04

they won't even listen to you , I

46:06

feel like a big part of them treating is

46:10

listening and hearing their patient

46:12

. And so if you're not being heard

46:14

, move on . Yeah , move

46:17

on . You know , no

46:19

doctor is going to be perfect , but you at least

46:22

deserve to be heard .

46:24

We've said that many times , haven't we , kerry ? That

46:26

it's , I guess we're older

46:30

generation , you know , you , just the

46:33

thought of saying fire your doctor would never even

46:35

come out of anyone's mouth . But nowadays

46:38

, you're right , you need to . If they're not , if

46:41

you don't feel like you're being heard and

46:43

you're being pushed aside or saying

46:45

things you know like oh , it's just

46:48

because you're , you know , going through those that

46:50

time in your life , but you're a woman kind of thing

46:53

. And or like with you , kerry

46:55

, I mean you went home eight doctors , you didn't

46:57

stop , you just kept going and going and mean

46:59

you were , you died of lung cancer

47:01

and lung cancer and brain

47:03

tumor . Yeah , we've had it all and you're

47:05

still here . So , but because you didn't

47:08

stop , you know you

47:10

kept you know going on , that's Well

47:13

.

47:13

I knew something was wrong , you know , I just didn't

47:16

know what . Yeah

47:18

, sure , miriam , you attend

47:20

our Thursday uh uh

47:23

Zoom meetings for

47:25

people living with LBD , and

47:27

occasionally you will attend the Monday or Friday

47:30

ones too . So before we

47:32

end , can you share with us your thoughts on attending

47:34

support meetings ? You know we get

47:36

new people joining each week , and for me

47:38

it's so nice to know I'm not alone

47:40

in this disease .

47:43

I feel the same way , kerry . I mean the

47:45

groups do just that . I mean the . I've

47:48

told my husband many times that

47:50

the camaraderie , the

47:52

, the , the togetherness , the , the

47:54

love even that the

47:57

group shares is amazing

48:00

to me because in many cases

48:02

many of us haven't met

48:04

in person . Some of us have , but

48:06

a lot of us haven't . But

48:09

that's not a barrier . The physical distance

48:11

isn't a barrier . It's like when we get on the

48:13

call , I know when I get

48:15

on there , even if I don't say

48:17

a whole lot , I can feel the support

48:20

and the love . And I

48:23

feel on those calls that if there's something

48:26

I need to share

48:28

or want to share , I can

48:30

do that , not

48:32

be laughed

48:35

at or mocked or ridiculed or

48:37

you know we talk

48:39

about everything in there . Everything

48:42

, and that's , that's the beauty

48:44

of it . You

48:46

know , I would say to anyone you know , give it

48:49

, give the Zoom meetings

48:51

a shot , like

48:53

you guys said in the beginning . You can come on

48:56

, you don't necessarily even have to say

48:58

anything . You

49:00

know , I've been on sometimes and just put

49:02

a note in the chat hey , I'm not going to turn

49:05

my camera on today . You know it's

49:07

just and it's . You know it's like

49:09

whatever it works for you , that

49:12

everybody's just really happy you're on the call

49:14

and that you made it on . Sometimes

49:16

I don't make it on and it's

49:19

just Louis . You know , just being

49:22

Louis , and you know , sometimes

49:24

I don't get on the call , but when I do

49:26

, it always , always , always

49:28

makes me feel better .

49:30

Yeah , as we . I mean

49:32

we do talk about pretty much anything

49:35

and everything that somebody needs to talk about , but

49:38

we do have a lot of good laughs

49:40

. I mean we . It

49:42

really has become like we get to know

49:44

as a teacher , you know , it's like you

49:47

get to know your , your , your students

49:49

and your people in the Zoom and they

49:51

all have their own little quirks . And I

49:55

mean it sounds silly , but one

49:58

gentleman , when he , when he talks about

50:00

his wife , he says my sweet Tracy , and

50:02

everybody drinks . We always have a drink , not

50:04

alcohol , but something we always have a drink

50:07

. And you , you'll see , if you're new , you'll

50:09

see everybody all of a sudden , like everybody on the screen

50:11

won't drink , or curry will

50:13

raise his pen , or occasionally

50:16

someone will slip up and say a curse word

50:18

. Or there's one older

50:20

lady who's got this cuckoo clock who goes off

50:22

at 12 o'clock , you know sharp

50:25

, and we're like oh , cuckoo clock , and it's it

50:27

really . Nami from Ireland

50:29

said it's see , she coined the phrase

50:32

Louis , love , it really is like you

50:34

go in there and you just meet these people

50:36

and you just immediately

50:38

form a family with strangers

50:40

.

50:41

That's what it is a family .

50:44

Yeah , yeah , it's , it's . I

50:47

think today's meeting was . We probably

50:49

left more than we did anything today and just

50:51

and I couldn't even tell you

50:53

what we were . I mean , we weren't laughing about Louis or anybody's

50:55

symptoms , it was just , yeah

50:58

, there's a lot of funny people in the group and sometimes

51:00

we laugh about you know . Hey

51:03

, I did this and somebody posted a really

51:05

funny cartoon of someone had

51:07

fallen down the steps . It

51:10

doesn't sound funny , but it was funny . It made me

51:12

laugh today and it

51:14

did make me chuckle . Do you remember what it was

51:16

? Oh , I wish I would .

51:18

It was I do my own stunts , or something

51:20

like that . Yeah .

51:23

I just don't plan them yeah

51:25

.

51:26

And I was like you

51:28

don't know , like you posting that made me chuckle

51:30

out loud , like that's just the kind of

51:32

thing that you get from the

51:34

groups and I agree , like sometimes you learn

51:36

more from the people in the Facebook groups

51:39

than you do from the medical

51:41

professionals , because the people

51:43

in the group are living it

51:45

and they can at least tell you how

51:49

they're coping with . Like one

51:52

of the things we always bring up is one gentleman

51:54

said I , I can't , I can't

51:56

hit the toilet when I pee . Anybody

51:59

else have that problem ? What do you do ? You

52:01

know , and then everybody speaks up . Well

52:03

, I do this and I do that . So it's , it's

52:05

a group where you pretty

52:07

much and it doesn't matter what you look like we

52:09

all roll out of bed sometimes and

52:11

I'm like hey , I'm here , I brushed

52:14

my teeth for y'all , but that's all you're getting

52:18

. It really is it just it's

52:20

it's . It's a good

52:23

feeling when you , when you leave the group and you see

52:25

everybody .

52:26

And the answer what you do when you can't hit

52:29

it . You either get a transmission funnel

52:31

, use it or you use a

52:33

urinal . But

52:35

yeah , transmission funnel works great , yeah

52:37

.

52:38

Yeah , it was just it's

52:40

. It's that kind of thing Like somebody posted

52:42

today , which I think he posted in a group

52:44

in on the Facebook pages . There's this

52:46

new , you know , like a rail you

52:49

put on your bed . But now

52:51

they have he found one that has the

52:53

rail , that goes on the bed but has a step

52:55

and has a light also and

52:58

and an alarm or something . I

53:00

had him post it because we were like , wow , you

53:02

know , like somebody's listening to somebody

53:05

and like designing these things , and

53:08

there's a lot of people in our group that

53:10

throw themselves out of bed with their

53:12

REM sleep disorder

53:15

. It's just stuff like that and sharing

53:18

and just being like you you're sharing today , just

53:20

being open and hearing

53:22

other people's stories , from

53:25

those with Louie and and the caregivers

53:27

, I think it really it

53:30

really makes you like you said , carrie

53:33

, that you're you're not alone with it .

53:35

Yeah .

53:36

And if you get if you get to meet somebody

53:38

in person , that's even you

53:40

know bonus .

53:42

I've got to say Mary , mary . Every time you come to

53:44

the group you seem so upbeat and I

53:47

love your smile

53:50

.

53:50

He's like you've got to get married .

53:51

I'm on my car I'm working on it .

53:57

Oh , thank you , I do love the group

53:59

. I don't . I couldn't tell you . I mean

54:01

, it just depends on the day .

54:04

Sometimes it's just not a good , you know

54:06

, and like , like

54:08

Megan said , megan said

54:10

, just if you can push your way , you

54:12

know , just get it on you know , and

54:16

some days , you know , I try and all

54:20

I can say is that it's a gruelly day

54:22

Some days you're struggling , some

54:25

days you struggle , but some days

54:27

you come on with the biggest smile that we've ever

54:30

seen , you know , and and it makes us , it gives

54:32

us all something to smile about . So

54:34

I want to thank you for the whole group for

54:37

that .

54:38

I want to thank you guys too , because it definitely

54:41

makes me feel less alone

54:44

, you know . You know , being a

54:46

part of the group , yeah .

54:50

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

54:52

. Thank you again , Miriam , for coming on

54:54

and sharing your experiences and giving words

54:56

of encouragement . Do you have any final words

54:58

you want to tell our listeners ?

55:02

No , I just want to say you know

55:04

, don't

55:06

give up . And like you always

55:08

say , kerry , there's a lot of life left

55:10

to live after

55:12

diagnosis . So choose life

55:15

, choose joy . And

55:17

thank you guys for having

55:19

me on . I appreciate the opportunity .

55:22

Well , thank you for coming on again . Folks

55:26

, we want all of you all to be a part of the podcast

55:28

series and share your thoughts on topics

55:30

you want to hear about . We provide

55:32

our email address below in the episode

55:34

description , so please feel free to send

55:36

us an email with topics you want to hear about

55:39

or you want us to explore . We'd

55:41

love to hear from you and get your feedback

55:43

.

55:43

Yep and our email is LewybodyRollicoster

55:46

at gmailcom , or you

55:49

can send us messages through the Facebook

55:51

groups , our journey with Lewybody Dementia

55:54

or our Lewybody Rollicoster

55:57

podcast group . We

55:59

can't thank you all for

56:01

continuing to support us as we do this podcast

56:04

and we continue to learn and

56:07

from and with one another as

56:09

we share and remember . We're doing this podcast

56:12

for all of us and we really appreciate that

56:14

you tune in each week .

56:16

And , as always , we will continue to post the link

56:18

for the podcast each week for

56:20

you and our Facebook group our journey with

56:23

Lewybody Dementia and our Lewybody

56:25

Rollicoster podcast group , as well

56:27

as many other groups . So thanks

56:29

for joining us .

56:30

Until next week .

56:31

This is Linda and Curry

56:34

signing off .