0:04

I was having a hard time parking

0:07

between two cars.

0:08

Yep.

0:08

Everybody was saying, your eyes are fine,

0:11

your vision is fine.

0:12

How can it be fine? I cannot dry

0:16

and.

0:16

Just you know, watching her personality

0:18

change a little bit, because when you're you

0:20

don't feel good, everything starts

0:23

magnifying.

0:25

She was telling me that sometimes she had difficulty

0:28

holding objects, and she

0:31

felt that her gait had changed.

0:32

So that's what I picked up. Initially,

0:35

I was exhausted. I had hugged down my hours

0:38

at work. I was no longer taken call. I

0:40

couldn't sleep, I was falling

0:42

By then.

0:48

How terrifying would it be to fight

0:50

an unknown enemy, one you

0:52

didn't recognize and didn't see coming.

0:55

What if that enemy was coming from

0:57

within a disease that

1:00

even doctors couldn't identify. Nearly

1:03

half of all Americans suffer

1:05

from some chronic illness, and many

1:08

struggle for an accurate diagnosis.

1:12

These are their stories. A

1:16

Lauren Brat Pacheco, and this is

1:19

symptomatic. Doctor

1:33

Maria de Leone's charismatic and creative

1:36

personality instantly rubs off

1:38

on you something that you may not expect

1:40

from your typical neurologist. What

1:43

are your passions.

1:44

What do you love?

1:45

Oh?

1:45

I love you know, it's funny because

1:48

I'm really a fashion east at heart.

1:50

I mean, I look at today, but I love

1:52

fashion colors and

1:55

traveling and learning new

1:57

languages. I speak for languages.

2:00

I've been trying to learn Turkish.

2:02

I started during the pandemic, so

2:05

you know, I'm getting a little bit better, but it's still

2:07

I said. I told my husband, I said, I need to go to you

2:09

know, Turkey, so I can practice the language.

2:11

Since so, which four languages

2:14

do you speak?

2:15

I speak some Italian and French,

2:17

on of course Spanish, and then you know

2:20

English, and now well, I guess with the language

2:22

will be with the Turkish.

2:23

Maria definitely leads a multifaceted

2:26

life. One aspect of her is

2:28

an incredibly intelligent and curious

2:30

doctor focused on treating not only

2:32

the symptoms, but a person as a

2:34

whole. She also proudly

2:37

presents as a self described diva.

2:40

How would you describe Maria as somebody who

2:42

hasn't met her, Tell me a little bit about what you

2:44

love about her personality.

2:46

Oh, Maria is just the most

2:48

bubbly, vivacious person.

2:51

That's Janet, Maria's longtime

2:53

friend and an integral part of

2:55

her support system.

2:57

Just the sweetest, most

2:59

generous person I've probably ever met.

3:02

She will put it, you know, somebody else's concerns

3:04

above her own, any day of the week.

3:09

A fashionista and dedicated,

3:11

driven doctor, Maria would have no

3:13

idea that a complex and unpredictable

3:16

diagnostic journey would eventually

3:19

upend her life. She first

3:21

fell in love with the field of medicine during

3:23

a memorably captivating college

3:25

lecture.

3:26

My professor he must

3:29

have had somebody in his family

3:31

or some relation, because he would talk about Parkinson's

3:34

all the time, and

3:36

one of his lectures he was talking about fetal

3:39

brain transplantation, and I

3:41

said, right then and there, I'm going to medical

3:43

school.

3:44

I want to be a neurosurgeon.

3:46

I want to do that kind of surgery to help

3:48

people with Parkins's.

3:51

She spent the first decade of her career in Pennsylvania,

3:53

falling in love with the Philadelphia area, but

3:56

East Coast winters would ultimately drive

3:58

her back west her early thirties,

4:01

where she'd open her own practice in Nakadochas,

4:04

a small city.

4:05

In East Texas.

4:06

That's where she first met Janet and

4:08

her husband Mark. Both were ecstatic

4:11

to have a local neurologist, so.

4:15

Mark, it was my first patient

4:17

in Parkins is also my first

4:19

patient in the small town community.

4:22

He was a godsend because he was the loveliest,

4:25

nicest person, the sweetest, you know. As

4:27

soon as we got here, he had

4:30

round up everybody for me, everybody he knew

4:32

that had any kind of neurologic disease,

4:35

especially if he thought they had you know, parkins

4:37

as.

4:38

He run them all up.

4:38

So when I opened my practice, I almost

4:41

had a full practice because of him.

4:46

Maria brought a personalized touch

4:48

to her Nacodocus practice because of

4:50

her previous medical battle. Just

4:53

after she was married, Maria had

4:55

been diagnosed with thyroid cancer.

4:57

She would fight through multiple surgeries

4:59

to that cancer into remission.

5:02

The experience allowed her to connect with her

5:04

patients on a deeper level,

5:07

but it was also the first sign of

5:09

more serious medical issues to come.

5:14

And I remember after the second surgery,

5:17

you know, my throat, we just felt like I was being

5:19

choked. I think that's when I started

5:21

noticing something was going on,

5:24

because then my voice changed. Every

5:26

time I'd dictate or I taught to patients

5:28

a lot, I would lose my voice. Would

5:31

get very rasped. It would get very very very

5:33

tight in my throat, and I

5:35

could no longer sing. I mean, I was never the

5:37

best saying I used to be in the choir. And again

5:40

at that time, still thought that it was the thyroid

5:42

that I'd had surgery, and so really wasn't

5:45

you know, paying attention to the other

5:47

things Prior to that and

5:50

residency, I had noticed

5:52

that I was getting a lot of tightness in my arm,

5:54

in my right hand.

5:55

I'm right handed. And again,

5:58

you're busy.

5:58

You just started learning about a new

6:01

field, and everybody said, oh, you

6:03

probably had carpal tunnel.

6:04

Maria's symptoms started to become more substantial

6:07

and noticeable just as she was navigating

6:10

her new practice in Nacadocus, But

6:13

as a young doctor under considerable

6:15

stress, she pushed aside her

6:17

own concerns to focus on those of

6:19

her patients.

6:22

When you were in a doctor

6:25

role with Mark and you said

6:27

that he and Janet became

6:29

like family, was it reassuring

6:32

or did that put pressure on you to serve

6:35

in the capacity of being his neurologist.

6:38

No, it was.

6:38

Really nice to have that personal connection

6:41

because you know, the one thing I'm

6:43

sure you know, when you go to the doctor, you have a limited

6:45

amount of time and then you focus on one

6:47

thing or two things, and then you know, move up.

6:49

But says I knew him.

6:52

I could see from the outside things

6:54

that were changing, things that were you know, bothering

6:57

that he would not mention or his wife would not mention.

6:59

I think I've always been a very personal,

7:02

you know, be hispatic, maybe you know, touchy

7:04

feely. I like to get everybody house and

7:07

kisses, and you know, really get involved

7:09

in their.

7:09

Lives, like how's your family, are your kids?

7:11

You know what's going on? And I think

7:14

that makes a difference.

7:15

Having formed such meaningful relationships

7:18

with your patients. Was it

7:20

difficult to watch Parkinson's take

7:22

its toll on Mark?

7:24

It was difficult because you know, as

7:26

a loving friend, you know, I would tell

7:28

Jennifer's heavy, noticed that his

7:31

cognitive status is not as well

7:33

he's repeating, or that he's

7:35

been falling lots lately, and he doesn't

7:37

tell me.

7:37

There you see a very healthy,

7:40

active person become less

7:43

and less active. Does the tremors

7:45

get worse? You know, it's hard to eat. As

7:48

Mark said, you know, part of this stuff is

7:51

you couldn't put corner peas on a fork

7:54

because they're going to fly off.

7:56

And I imagine that Maria

7:58

was a huge support for you when

8:01

your husband Mark passed.

8:02

Oh yes, yes, yes, today he had

8:05

his aneurysm. You

8:07

know, it was just we knew and

8:09

she, you know, she came up to the hospital because

8:12

my daughter was traveling doing

8:14

a spring break vacation with their two

8:16

sons, and I called her and I

8:18

said, you know, your dad's fallen. You need

8:20

to come. And she drove the

8:22

fifteen hours from Colorado back

8:25

Toncadoches and Maria stayed

8:27

with me till they got here.

8:31

In terms of being such a hands on doctor,

8:34

losing patients must

8:37

never ugh, you don't get used

8:39

to it.

8:40

At least I never did. I mean, some people

8:42

may develop some you know, you get a little

8:44

bit tougher. But it always

8:46

affected me, maybe because I always

8:50

invested myself so much into people's

8:52

lives and so it always was hard.

8:56

As a neurologist, Maria had

8:58

become well versed in the stating

9:00

impact that a degenerative disease

9:02

like Parkinson's can have on a patient's

9:05

lifestyle and physical capabilities. While

9:08

it was part of her role as a doctor, it

9:10

never became less painful to process

9:12

that inevitable decline. It

9:15

became even more personal when her grandmother

9:17

was diagnosed with the disease and

9:20

just explained to me her walking through the door,

9:22

what you picked up on and what you knew.

9:25

Well, the first thing was that my uncle

9:27

would say, well, she just doesn't want to do

9:29

anything.

9:30

She doesn't want to get up and go.

9:31

She's very slow, and you know, of course all those terms,

9:33

you know, thinking about Parkinson's. But all

9:36

I had to do was take one look. She couldn't get out of the

9:38

car to begin with, and her facial expression,

9:41

her slowness and doing everything her caremors

9:43

had gone work, and so it

9:46

was very you know, obvious that this is

9:48

what was going on. So I

9:50

was, you know, a caregiver from Afar

9:52

for that time until my grandfather

9:55

passed away and she

9:57

couldn't really walk and.

9:58

Get around and shout stuff. I said,

10:01

you can't be here.

10:02

You don't have you know, the doctors here, you

10:04

don't have you know, the medications. Nobody

10:06

you know really gonna be able to take care of you.

10:08

So on, don't you come back to Texas and

10:11

we take care.

10:12

Of you for you?

10:13

That must have been surreal

10:15

on so many levels. One, you

10:17

know, you're wearing your doctor hat, your granddaughter

10:20

hat, your caregiver hat, but

10:22

also just the aspect

10:24

that your grandmother has been

10:27

diagnosed now and suffering with your

10:30

area of.

10:30

Expertise exactly

10:33

exactly, And so that was really hard

10:35

to see. And I thought, I'll

10:38

get her into shape. You know, she'll come

10:40

over here, We'll get her the right medications.

10:42

I got her physical therapy, I got it, home

10:45

health, got her everything.

10:48

Sadly, with time, the degenerative disease

10:51

would still go on to take her grandmother's life.

10:53

Maria had now lost two loved ones,

10:56

her grandmother and her friend Mark

10:58

Janet's husband, to this same disease.

11:00

She dedicated her life to studying

11:03

Parkinson's, but even as she continued

11:05

to prioritize caring for her patients

11:07

and family, it was becoming harder

11:10

and harder to ignore her own progressing

11:12

symptoms. When

11:15

did you start to realize that something

11:18

was really off.

11:20

When it really happened was right

11:22

before my grandmother passed away. That's

11:24

when things got really worrisome,

11:27

that something was.

11:28

It really dawned on me.

11:30

I got something, and this is serious. I

11:32

mean I was going to bathroom a million times a

11:34

day. I was going to bathroom all the time. And you

11:36

know, I went to the doctor and they're

11:38

like, you don't have you know, it's fine, it's fine,

11:40

And I'm like, well, I can't drive, you know,

11:43

like a mile without stopping.

11:45

You know.

11:46

Also I was starting to have visual

11:48

defects. One and night,

11:50

I couldn't judge distance, so I

11:52

almost got run over a couple of times. I

11:54

would notice that that constant stopping and

11:57

starting, you know, the gas pedal.

11:59

It cramped my legs so bad

12:02

that I.

12:03

Was really worried that I would to get into access because

12:05

it would get so involuntility

12:07

contracted that I couldn't release it. And if I suddenly

12:09

pressed on the gas or something, I

12:11

was going to you know, have problems.

12:15

As all these other symptoms were going on, some

12:17

of the thyroid dishes were coming back, and

12:20

so I had recurrence of the cancer you know, and had

12:22

to then go through the eyedine

12:25

treatment and things, which is then worse than my

12:27

other symptoms.

12:28

So it's like it's a lot.

12:31

But even when Maria, as a young doctor

12:33

and young mother, turned to other doctors

12:36

for help, she found they dismissed

12:38

her downplay her symptoms, something

12:40

her friend Janet recalls, Well,

12:43

you mentioned that she almost knew too much.

12:45

Yes, in what ways do you think it was

12:47

difficult for her being a doctor, dealing

12:50

with these symptoms and going to other doctors

12:53

and kind of being told it was in

12:55

her head.

12:56

Very very frustrating, because you

12:58

know, she knew something was good going on. I think that's

13:01

probably one of the first reasons that she

13:03

went back to the

13:05

doctor for the thyroid cancer, just

13:08

to kind of see maybe if that was causing

13:10

the problem, because it was basically

13:13

a you know, let's see this

13:15

symptom, let's treat

13:17

that you had to rule out all these other

13:19

things.

13:20

Maria's morphing symptoms were gradually

13:23

eroding her ability to maintain the patient

13:25

centered medical practice she'd painstakingly

13:28

built, and making day to day

13:31

life more difficult. Support

13:33

for her symptoms was on the horizon,

13:35

but not before her life as she knew it

13:37

would be fully upended.

13:40

I started not seeing that I could not really

13:43

tell what was going on on my left

13:46

dreshold vision. I

13:48

was having a hard time parking

13:50

between two cars.

13:52

Everybody was saying, your eyes are fine,

13:54

your vision is fine. How can it

13:56

be fine? I cannot draw?

14:00

Be right back with Symptomatic, a

14:02

Medical Mystery Podcast.

14:10

Now back to Symptomatic a Medical

14:13

Mystery Podcast. Doctor

14:18

Maria de Leone had supported so many

14:20

patients through challenging diagnostic journeys.

14:23

Now she was navigating one of her

14:25

own. She'd been experiencing involuntary

14:28

muscle contractions and tightness

14:30

for years, but now her vision

14:33

was being negatively impacted too. The

14:36

cumulative symptoms were weighing heavily

14:38

on her professional and personal life.

14:44

I started noticing when you do the exam with

14:46

the patients, you know, fingertab open

14:48

and closed, And I was like, wait, what the heck.

14:50

Can I do that? You know, so that I'm looking at myself

14:52

like I'm having trouble doing that.

14:55

Going back to your earliest memories

14:57

of seeing those issues, what did you notice.

15:01

As her being our doctor? You

15:03

know, I got to watch the seven

15:06

eight years she was in practice. I watched her handwriting

15:08

go from semi legible

15:10

to totally illegible, and

15:13

just you know, watching her personality

15:15

change a little bit. Because when you're you

15:17

don't feel good, everything starts

15:20

magnifying.

15:22

And so I wasn't sure if I was irritable because all these

15:24

things going on, Alli is zerrable. But I was irritable

15:26

all the time, like I said, And my patients were like, you're

15:29

being smaller today, you know, you didn't give us a hurt

15:31

getting I'm like, I just want to get out of

15:33

here, you.

15:33

Know, it's like I don't want to be with anybody.

15:36

But looking back, how are things progressing

15:38

for you?

15:39

You know?

15:39

Like I always did my nails.

15:41

I always had you know, flash and Esta completely

15:44

always had you know, to the tee, the

15:46

shoes, the hair, the earrings and everything,

15:49

and well, I try to do my nails

15:52

and it was like a three year old doing them.

15:54

It's like they were just mets.

15:57

It's like, what the heck? And I was

15:59

hurting all the time.

16:00

How would you describe that pain?

16:03

The pain was so excruciating

16:06

that I could not stand

16:09

anyone to touch me because it felt

16:11

like fire. I could not shower

16:14

because the water dripping on me, touching my

16:16

skin feel like acid was pouring down. So

16:19

that's how severe I got to

16:21

the point I was in tears all the time,

16:23

couldn't touch my daughter. I was like, no, I

16:26

mean, it was hard to deal with that.

16:30

What did they think was going on with you. Did

16:32

they think that you were appropriating the symptoms

16:34

you were treating.

16:35

They told me go see a psychiatrists and

16:38

really hurt me at the time. It

16:40

really made me realize, these are the same people

16:43

that trusted me with their patients.

16:45

They're questioning my own capability

16:47

of dinas and myself saying that there's something

16:49

wrong with me. And they're saying, oh, you

16:52

just you know, depressed, you just need to go back

16:54

to work. You've just been through a line. And

16:56

I was like, how can that be? How can they, under

16:58

one hand trust me and at the

17:01

same time said that they'd think, I'm, you know, just

17:03

making all these stags up.

17:05

So at this point, Maria's symptoms

17:07

are starting to become more obvious

17:09

and she's actively seeking

17:11

a diagnosis. Do

17:14

you remember how she was feeling

17:16

during this time, overwhelmed,

17:18

frustrated.

17:20

Yes, when she especially when she came

17:22

home, and that's what they told her, she

17:24

would just you know, vent and go

17:27

you know, it's not like this, we're in tears.

17:30

I know something's going on. I'm

17:32

sure it's the same thing that doctors go through

17:34

when they have these difficult to diagnose

17:37

patients.

17:38

So after three years of having

17:40

every test done, seeing every single

17:43

specialist, basically

17:45

under the sun, having every

17:48

test short of a brain biopsy.

17:50

I was ritnette. I was exhausted. I had

17:53

had done my hours at work. I was no longer

17:55

taking call. I couldn't sleep, I

17:57

was falling by that.

17:59

Pushed to her brain point, Maria

18:01

reached out to the one person she knew

18:04

would take the time to piece together

18:06

the many complicated parts of her mysterious

18:09

medical challenges, doctor Maya,

18:11

She, whom Maria had first

18:13

met while in residency.

18:15

I finally called Maya and

18:18

I said, Maya, I've been dealing with this.

18:20

I'm exhausted. I don't

18:22

know what to do. I know there's something

18:24

wrong with me. I know it's neurological.

18:27

I think is Parkinson's, but I

18:29

don't know. Got these other symptoms

18:31

that don't fit into the picture. But you

18:33

know, I need your opinion. I

18:35

said, if you think that it's all psychological,

18:38

and I've been through so much stress and grievings

18:41

and whatever, I said, I'll take their opinion.

18:43

I'll get help, Okay.

18:47

First name is Maya, last

18:49

name is She. I'm a tenured

18:52

professor at the University of Texas. Health

18:54

Science Center. I'm in the department

18:56

of Neurology. I'm actually the

18:58

director of our Movement

19:00

Disorders and Neudegenerative Diseases

19:03

Clinic and Fellowship program

19:05

director. I

19:08

realized that in my lifetime I would never

19:10

fully understand the

19:12

brain or the nervous system, and so that became

19:15

an attraction for me to always

19:17

be challenged.

19:19

I would think that that makes

19:21

you and Maria very much

19:23

cut from the same cloth.

19:25

Yes, yes, we are cut

19:27

from the same cloth. We talked about

19:29

this difficulty she was sensing

19:32

in her her movements,

19:34

and my interpretation of them were that

19:37

she had change in her

19:39

gait.

19:40

So my first thoughts.

19:42

About her was that she actually had

19:44

what's called DOPA response of dystonia.

19:47

In fact, my first notes, I was

19:49

noting this change in rigid

19:51

tone. I mean she was like thirty five thirty

19:54

seven, she was young, and

19:56

I was noticing that she had a symmetry

19:59

in her limbs. She had especially some

20:01

increased tone in her leg

20:03

and armed on one side. And

20:06

she was telling me that sometimes she had difficulty

20:10

holding objects and she

20:12

felt that her gait had changed. So that's

20:14

what I picked up initially.

20:18

Having fully examined Maria's symptoms and

20:20

concerns doctor She's initially

20:23

prescribed a dopamine agent for an enzyme

20:25

deficiency. She then focused

20:27

on Maria's spinal imagery due

20:30

to her asymmetrical reflexes.

20:33

So the moment of truth is when

20:35

I saw how robustly she responded

20:37

to dolopminergic medicine

20:40

replacement of dopamine.

20:43

You knew that she had been to a number

20:45

of doctors over a number of years

20:48

knowing her. Why was she

20:50

so frustrated and why was she desperate

20:53

by the time she came to you.

20:54

So I think she was really frustrated because

20:57

number one, people are afraid of

20:59

doctor. They're afraid of taking care of them

21:02

doctors. It's true, we make terrible

21:04

patience.

21:06

We don't do what we're told.

21:09

We overthink, you know. So

21:11

I think people were intimidated.

21:14

She's a really good doctor.

21:16

But that's not fair to her because

21:18

she still deserves a good exam,

21:21

a good understanding of what's going on.

21:24

Right After three years

21:26

of juggling symptoms and searching for

21:28

answers, Maria finally had

21:30

a doctor who saw her full symptomatic

21:32

picture and led her to a diagnosis.

21:34

She was all too familiar with Parkinson's

21:37

disease being diagnosed

21:40

by Maya. What was that like for

21:42

you? Did you feel vindicated

21:44

on some level and terrified

21:47

on others?

21:48

I was initially very vindicated

21:50

and happy when she said you have Parkinson's.

21:52

I was like, yeah, looks like, you

21:54

know, like a celebration until

21:56

it, you know, settled a few days later.

21:59

But at first of it was I knew it's not

22:01

crazy. I knew that I had something

22:03

going on.

22:06

I know that when she was kind of diagnosed

22:09

with that and actually got

22:11

on some of the Parkinson's mids, her

22:13

muscle softened just you

22:15

know, like an immediate relief that,

22:18

you know, things were doing better.

22:21

When I started the medicine, even

22:23

the small amounts initially, until we you know,

22:26

got the can doses right and everything. I

22:28

noticed that, hey, my vision

22:31

is some better and my pain

22:33

is some better. And again it's like, if

22:35

I'm having this much trouble and I am a physician

22:38

that specializes in this disease and

22:41

it took me three years to get an official

22:43

diagnosis from somebody and get treated, now,

22:45

imagine what all these people

22:48

around the world I do it and feeling

22:50

and dealing with and in reality most

22:52

women take about three to five years to get diagnosed,

22:55

especially when they're younger.

22:58

That's Maria's personality, and I'm not sure even

23:01

reflecting on the life changing news that she'd

23:03

been seeking, she sympathizes with

23:05

people who don't have the same advantages

23:07

she had to speed up their diagnosis

23:09

and treatment.

23:11

It was surreal because she's, gosh,

23:14

a good twenty years younger than I am, and

23:16

for fast friends and buddies and

23:19

just this brilliant,

23:22

professional, loving, compassionate,

23:24

wonderful human being and just saying, Maria,

23:27

I'm you know, I'm sorry, but we're

23:29

gonna have to work on a medical regimen

23:32

that keeps you going.

23:34

Once the weight of that diagnosis

23:36

hit you, what were your fears?

23:38

Well, you know, at first I feel vindicated, and

23:41

then I felt like, well, you know, I've been doing

23:43

this year. There's so many new advances

23:45

we come a long with, patients

23:47

are doing better with the right treatment.

23:49

We can do this.

23:50

But then one day we were sitting there

23:53

at dinner, my husband, my daughter, and I and

23:55

all of a sudden, it just they hit

23:57

me, is that I have it progressed

24:00

disease. And I

24:03

know what that disease looks at at

24:05

the end, I know what patients

24:07

go through, the isolation, the troubles

24:10

and difficulty, and I just

24:12

started crying. I start saying,

24:14

my god, Am I going to be able

24:17

to take care of this three year old child?

24:19

Am I going to be able to raise her? Am I going

24:21

to be able to be there with her? Am I

24:24

going to be able to do the things I want

24:26

to do, like travel and enjoy

24:28

you know, all the languages and enjoy

24:30

you know, still going out to the movies and

24:33

you know, talking to my friends. Am

24:35

I going to still be able to practice medicine?

24:39

How rare is Parkinson's

24:42

I'm going to be very nerdy right now. But as

24:44

they say, neurological diseases are the fastest

24:47

growing diseases worldwide

24:49

now, and within

24:51

that realm of neurological diseases, unfortunately,

24:53

Parkinson's disease is one of the

24:55

fastest growing, if not the fastest growing

24:58

now. Currently in North America, there's probably

25:01

one point five million people with the disease,

25:04

but it's growing rapidly, and

25:06

as they say, on the horizon, there's

25:08

this epidemic or pandemic

25:11

of Parkinson's disease.

25:14

An epidemic that disproportionately

25:16

impacts people of Hispanic heritage.

25:19

The Hispanic community, at least

25:22

in this part of the world. The US,

25:24

there are higher risk for developing

25:27

parkinsas there are two times as

25:29

high risk than any other ethnic

25:31

group.

25:32

And we feel that this is related to agricultural

25:35

exposure and pesticide ribside

25:38

exposure. Another thing is the

25:40

disparity in healthcare has a lot to

25:42

do with a lack of media

25:45

exposure to specialists

25:47

in the field that could direct people to

25:50

more immediate care.

25:52

Being Hispanic, there's a lot of

25:55

misinformation in our community. There's

25:57

a lot of myths. So we have to explain that Rory

26:00

Knowle does not mean that you will have

26:02

tremors and shakes and fall and

26:05

be confused as oientede. So it's not

26:07

an aging process, that it is

26:09

actual disease.

26:13

After years of suffering symptoms that

26:15

gradually robbed her of hermotor skills,

26:18

Maria finally had a name for her unknown

26:20

enemy, Parkinson's. But she

26:23

needed to figure out how she would share

26:25

that diagnosis with the people

26:27

she was also treating.

26:30

How would I tell my patience, How do I want

26:32

them to proceed? You know, give them hope? And so I

26:34

said, if I am the doctor and

26:36

I've been telling them these things this year, is

26:38

that they can, you know, still have a life, that they still

26:40

can I said, I got to be that example

26:43

and so embrace it.

26:45

Yes, we don't like this disease.

26:47

And now you know, sixteen years later, I can tell

26:49

you how god awful it could be sometimes,

26:51

but overall, I mean, it's given me.

26:53

So much, so look at the positive side.

26:56

In the years that followed, Maria juggled

26:58

seeking treatment for herself with devoted

27:01

care for her patients while still

27:03

being a present mom and partner. Just

27:05

two years after her diagnosis, though,

27:08

Maria had to face the harsh reality

27:10

that her own symptoms had progressed to

27:13

the point that she could no longer

27:15

provide the care to her

27:17

patients that she dedicated her

27:19

life to providing. Do

27:22

you remember what

27:24

she went through when she made the decision to

27:26

close her practice. How hard was that

27:28

for her?

27:29

Oh?

27:29

That was very, very, very hard. And

27:32

you know, the whole community cried

27:34

with her because she's

27:36

the exception, I would say, a

27:39

compassionate personality. Everybody

27:41

loved her. The whole community mourned

27:44

when she had to close her practice.

27:46

On a personal level, what makes

27:49

you so proud of Maria,

27:51

And on a larger level,

27:54

what kind of impact has she had on

27:56

Parkinson's.

27:58

She's had a profound impact on women

28:00

with Parkinson's disease, I mean, and also

28:03

I mean just broadly speaking, she

28:06

empowers people with understanding

28:08

the disease, bringing it down to

28:10

day to day things, intimate things,

28:14

things that people are afraid to share.

28:16

Just the idea of moving forward with

28:18

education and understanding and

28:21

positivity and faith

28:23

and prioritizing what's

28:25

important in your life.

28:26

So that's really powerful.

28:28

I'm proud of Maria.

28:30

Just because of who she is, what

28:32

she's done for humanity, for

28:35

Parkinson's disease, the person that she's

28:37

become.

28:38

And that includes becoming an author.

28:41

I went into this medical

28:43

community to care for Parkinson's

28:46

patients, so it's given me an

28:48

opportunity really get to

28:50

be part of a global community. I

28:52

get to really, I think, in a way, maybe

28:54

make a greater impact than I did, you

28:56

know, just being in my office.

28:59

Maria turned her lifelong passion for caring

29:01

for others and her driving desire to

29:03

make an impact in the Parkinson's community

29:06

into a book fittingly titled Parkinson's

29:09

Diva, A Woman's Guide to Parkinson's

29:11

Disease, complete with an illustration

29:13

of a glamorous gallon a red

29:15

dress on the cover.

29:18

I had found a definition

29:21

for diva that I really really loved,

29:23

and is said that sometimes

29:25

it is a person that can do extraordinary

29:27

things with normal capabilities.

29:31

That's what we want patients to be. That we

29:33

want them to speak.

29:34

Loud and do loud

29:36

activities and be loud and be big.

29:39

I said, kind of like divas, you know, you have to

29:41

be out there, be bold and

29:43

do everything in a big way.

29:44

So I think the Parkinson's diva, will you

29:47

represent that?

29:48

So we decided to go with that, and I

29:50

did not know that it was going to start a

29:52

movement around the world.

29:54

Seeing all the positive responses to her first

29:56

book, Maria was encouraged to write a

29:58

second book, this time and Spanish,

30:00

and even produce a documentary on the

30:02

disease, all in hopes of

30:05

creating more spaces for people to see

30:07

that Parkinson's is not the end,

30:09

but simply a new direction.

30:12

Being a diva is exemplified

30:15

in Maria. That's just

30:18

her. You can still go

30:20

out feel good about yourself

30:23

no matter what.

30:25

You'll feel better and you'll be better in the end

30:27

when you know what is wrong and you can

30:29

start finding a treatment and a cure

30:32

and a way to live with it and live better. So

30:34

that's what I will say. And just

30:37

because you have an illness, I mean that's the end of life.

30:39

And you can still be a diva. It's still

30:41

flourish, and you know, I still worry crowning

30:43

your boa feathers if you want, and if you're dye,

30:46

you can, you know, just be a diva.

30:48

And do your own thing. So color

30:50

your world in your own way.

30:54

To learn more about Maria's journey, check out

30:56

her books, including Parkinson's Diva,

30:59

and for more information on the condition, you

31:01

can visit the Parkinson's Foundation website

31:04

at parkinson dot org.

31:06

My name is Maria de Leilan, and I was diagnosed

31:09

with Parkinson's at.

31:10

A young age.

31:12

On next week's episode of Symptomatic,

31:15

Eliza tries to ignore and brush off

31:17

her periodically overwhelming giflare

31:20

ups until she's scared they'll

31:22

threaten her ability to care for

31:24

her new baby.

31:25

And I was alone in the apartment with a baby,

31:27

and I didn't want to like pass out while

31:30

Rowan was still sleeping in

31:32

his nap. I mean, I felt

31:34

like I'd been through the ringer, like I had gotten sick.

31:37

The mysterious disease had been dropping breadcrumbs

31:40

throughout her entire life? Could

31:42

she have seen this coming? That's

31:47

it for this episode of Symptomatic. Thank

31:50

you for listening. What did you think of this

31:52

episode? We would love to hear from you.

31:54

Send us your thoughts or share a medical mystery

31:56

of your own at Symptomatic at iHeartMedia

31:58

dot com. Please don't forget

32:00

to rate and review this podcast wherever

32:03

you're listening. Symptomatic

32:06

Medical Mystery Podcast is a production

32:08

of Ruby Studio from iHeartMedia.

32:11

Our show is hosted by me Lauren breg

32:13

Pacheco. Executive producers

32:15

are Matt Romano and myself. Our

32:17

EP of post production is James

32:20

Foster. Our producers are Sierra

32:22

Kaiser and John Irwin. And this episode

32:24

was researched by Diana Davis