November 28, 2023 • 32 mins
Maria is a neurological specialist who became a patient herself when she noticed problems with her mobility. She started to experience cramps in her hands that soon prevented her from driving or tying her shoes. As she saw her ability to care for her patients gradually decline, she faced the skepticism of her colleagues and the fear of not finding a diagnosis. Maria raced to get answers before she lost not only her profession but her whole way of life, as well.
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Speaker 1 (00:04):
I was having a hard time parking between two cars.
Speaker 2 (00:08):
Yep.
Speaker 1 (00:08):
Everybody was saying, your eyes are fine, your vision is fine.
Speaker 3 (00:12):
How can it be fine? I cannot dry and.
Speaker 4 (00:16):
Just you know, watching her personality change a little bit,
because when you're you don't feel good, everything starts magnifying.
Speaker 2 (00:25):
She was telling me that sometimes she had difficulty holding objects,
and she felt that her gait had changed.
Speaker 1 (00:32):
So that's what I picked up. Initially, I was exhausted.
I had hugged down my hours at work. I was
no longer taken call. I couldn't sleep, I was falling
By then.
Speaker 5 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:12):
These are their stories. A Lauren Brat Pacheco, and this
is symptomatic. Doctor Maria de Leone's charismatic and creative personality
(01:37):
instantly rubs off on you something that you may not
expect from your typical neurologist. What are your passions.
Speaker 3 (01:44):
What do you love?
Speaker 4 (01:45):
Oh?
Speaker 1 (01:45):
I love you know, it's funny because I'm really a
fashion east at heart. I mean, I look at today,
but I love fashion colors and traveling and learning new languages.
I speak for languages. I've been trying to learn Turkish.
I started during the pandemic, so you know, I'm getting
a little bit better, but it's still I said. I
(02:07):
told my husband, I said, I need to go to
you know, Turkey, so I can practice the language.
Speaker 3 (02:11):
Since so, which four languages do you speak?
Speaker 1 (02:15):
I speak some Italian and French, on of course Spanish,
and then you know English, and now well, I guess
with the language will be with the Turkish.
Speaker 5 (02:23):
Maria definitely leads a multifaceted life. One aspect of her
is an incredibly intelligent and curious doctor focused on treating
not only the symptoms, but a person as a whole.
She also proudly presents as a self described diva. How
would you describe Maria as somebody who hasn't met her,
Tell me a little bit about what you love about
(02:44):
her personality.
Speaker 4 (02:46):
Oh, Maria is just the most bubbly, vivacious person.
Speaker 5 (02:51):
That's Janet, Maria's longtime friend and an integral part of
her support system.
Speaker 4 (02:57):
Just the sweetest, most generous person I've probably ever met.
She will put it, you know, somebody else's concerns above
her own, any day of the week.
Speaker 5 (03:09):
A fashionista and dedicated, driven doctor, Maria would have no
idea that a complex and unpredictable diagnostic journey would eventually
upend her life. She first fell in love with the
field of medicine during a memorably captivating college lecture.
Speaker 1 (03:26):
My professor he must have had somebody in his family
or some relation, because he would talk about Parkinson's all
the time, and one of his lectures he was talking
about fetal brain transplantation, and I said, right then and there,
I'm going to medical school.
Speaker 3 (03:44):
I want to be a neurosurgeon.
Speaker 1 (03:46):
I want to do that kind of surgery to help
people with Parkins's.
Speaker 5 (03:51):
She spent the first decade of her career in Pennsylvania,
falling in love with the Philadelphia area, but East Coast
winters would ultimately drive her back west her early thirties,
where she'd open her own practice in Nakadochas, a small city.
Speaker 3 (04:05):
In East Texas.
Speaker 5 (04:06):
That's where she first met Janet and her husband Mark.
Both were ecstatic to have a local neurologist, so.
Speaker 1 (04:15):
Mark, it was my first patient in Parkins is also
my first patient in the small town community. He was
a godsend because he was the loveliest, nicest person, the sweetest,
you know. As soon as we got here, he had
round up everybody for me, everybody he knew that had
any kind of neurologic disease, especially if he thought they
(04:36):
had you know, parkins as.
Speaker 3 (04:38):
He run them all up.
Speaker 1 (04:38):
So when I opened my practice, I almost had a
full practice because of him.
Speaker 5 (04:46):
Maria brought a personalized touch to her Nacodocus practice because
of her previous medical battle. Just after she was married,
Maria had been diagnosed with thyroid cancer. She would fight
through multiple surgeries to that cancer into remission. The experience
allowed her to connect with her patients on a deeper level,
(05:07):
but it was also the first sign of more serious
medical issues to come.
Speaker 1 (05:14):
And I remember after the second surgery, you know, my throat,
we just felt like I was being choked. I think
that's when I started noticing something was going on, because
then my voice changed. Every time I'd dictate or I
taught to patients a lot, I would lose my voice.
Would get very rasped. It would get very very very
tight in my throat, and I could no longer sing.
(05:36):
I mean, I was never the best saying I used
to be in the choir. And again at that time,
still thought that it was the thyroid that I'd had surgery,
and so really wasn't you know, paying attention to the
other things Prior to that and residency, I had noticed
that I was getting a lot of tightness in my arm,
in my right hand.
Speaker 3 (05:55):
I'm right handed. And again, you're busy.
Speaker 1 (05:58):
You just started learning about a new field, and everybody said, oh,
you probably had carpal tunnel.
Speaker 5 (06:04):
Maria's symptoms started to become more substantial and noticeable just
as she was navigating her new practice in Nacadocus, But
as a young doctor under considerable stress, she pushed aside
her own concerns to focus on those of her patients.
When you were in a doctor role with Mark and
(06:26):
you said that he and Janet became like family, was
it reassuring or did that put pressure on you to
serve in the capacity of being his neurologist.
Speaker 3 (06:38):
No, it was.
Speaker 1 (06:38):
Really nice to have that personal connection because you know,
the one thing I'm sure you know, when you go
to the doctor, you have a limited amount of time
and then you focus on one thing or two things,
and then you know, move up.
Speaker 3 (06:49):
But says I knew him.
Speaker 1 (06:52):
I could see from the outside things that were changing,
things that were you know, bothering that he would not
mention or his wife would not mention. I think I've
always been a very personal, you know, be hispatic, maybe
you know, touchy feely. I like to get everybody house
and kisses, and you know, really get involved in their.
Speaker 3 (07:09):
Lives, like how's your family, are your kids? You know
what's going on? And I think that makes a difference.
Speaker 5 (07:15):
Having formed such meaningful relationships with your patients. Was it
difficult to watch Parkinson's take its toll on Mark?
Speaker 1 (07:24):
It was difficult because you know, as a loving friend,
you know, I would tell Jennifer's heavy, noticed that his
cognitive status is not as well he's repeating, or that
he's been falling lots lately, and he doesn't tell me.
Speaker 4 (07:37):
There you see a very healthy, active person become less
and less active. Does the tremors get worse? You know,
it's hard to eat. As Mark said, you know, part
of this stuff is you couldn't put corner peas on
a fork because they're going to fly off.
Speaker 5 (07:56):
And I imagine that Maria was a huge support for
you when your husband Mark passed.
Speaker 4 (08:02):
Oh yes, yes, yes, today he had his aneurysm. You know,
it was just we knew and she, you know, she
came up to the hospital because my daughter was traveling
doing a spring break vacation with their two sons, and
I called her and I said, you know, your dad's fallen.
You need to come. And she drove the fifteen hours
(08:23):
from Colorado back Toncadoches and Maria stayed with me till
they got here.
Speaker 5 (08:31):
In terms of being such a hands on doctor, losing
patients must never ugh, you don't get used to it.
Speaker 1 (08:40):
At least I never did. I mean, some people may
develop some you know, you get a little bit tougher.
But it always affected me, maybe because I always invested
myself so much into people's lives and so it always
was hard.
Speaker 5 (08:56):
As a neurologist, Maria had become well versed in the
stating impact that a degenerative disease like Parkinson's can have
on a patient's lifestyle and physical capabilities. While it was
part of her role as a doctor, it never became
less painful to process that inevitable decline. It became even
more personal when her grandmother was diagnosed with the disease
(09:20):
and just explained to me her walking through the door,
what you picked up on and what you knew.
Speaker 1 (09:25):
Well, the first thing was that my uncle would say, well,
she just doesn't want to do anything.
Speaker 3 (09:30):
She doesn't want to get up and go.
Speaker 1 (09:31):
She's very slow, and you know, of course all those terms,
you know, thinking about Parkinson's. But all I had to
do was take one look. She couldn't get out of
the car to begin with, and her facial expression, her
slowness and doing everything her caremors had gone work, and
so it was very you know, obvious that this is
what was going on. So I was, you know, a
(09:51):
caregiver from Afar for that time until my grandfather passed
away and she couldn't really walk and.
Speaker 3 (09:58):
Get around and shout stuff. I said, you can't be here.
Speaker 1 (10:02):
You don't have you know, the doctors here, you don't
have you know, the medications. Nobody you know really gonna
be able to take care of you. So on, don't
you come back to Texas and we take care.
Speaker 3 (10:12):
Of you for you?
Speaker 5 (10:13):
That must have been surreal on so many levels. One,
you know, you're wearing your doctor hat, your granddaughter hat,
your caregiver hat, but also just the aspect that your
grandmother has been diagnosed now and suffering with your area of.
Speaker 1 (10:30):
Expertise exactly exactly, And so that was really hard to see.
And I thought, I'll get her into shape. You know,
she'll come over here, We'll get her the right medications.
I got her physical therapy, I got it, home health,
got her everything.
Speaker 5 (10:48):
Sadly, with time, the degenerative disease would still go on
to take her grandmother's life. Maria had now lost two
loved ones, her grandmother and her friend Mark Janet's husband,
to this same disease. She dedicated her life to studying Parkinson's,
but even as she continued to prioritize caring for her
patients and family, it was becoming harder and harder to
(11:11):
ignore her own progressing symptoms. When did you start to
realize that something was really off.
Speaker 1 (11:20):
When it really happened was right before my grandmother passed away.
That's when things got really worrisome, that something was.
Speaker 3 (11:28):
It really dawned on me.
Speaker 1 (11:30):
I got something, and this is serious. I mean I
was going to bathroom a million times a day. I
was going to bathroom all the time. And you know,
I went to the doctor and they're like, you don't
have you know, it's fine, it's fine, And I'm like, well,
I can't drive, you know, like a mile without stopping.
Speaker 5 (11:45):
You know.
Speaker 1 (11:46):
Also I was starting to have visual defects. One and night,
I couldn't judge distance, so I almost got run over
a couple of times. I would notice that that constant
stopping and starting, you know, the gas pedal.
Speaker 3 (11:59):
It cramped my legs so bad that I.
Speaker 1 (12:03):
Was really worried that I would to get into access
because it would get so involuntility contracted that I couldn't
release it. And if I suddenly pressed on the gas
or something, I was going to you know, have problems.
As all these other symptoms were going on, some of
the thyroid dishes were coming back, and so I had
recurrence of the cancer you know, and had to then
(12:23):
go through the eyedine treatment and things, which is then
worse than my other symptoms.
Speaker 3 (12:28):
So it's like it's a lot.
Speaker 5 (12:31):
But even when Maria, as a young doctor and young mother,
turned to other doctors for help, she found they dismissed
her downplay her symptoms, something her friend Janet recalls, Well,
you mentioned that she almost knew too much. Yes, in
what ways do you think it was difficult for her
being a doctor, dealing with these symptoms and going to
(12:52):
other doctors and kind of being told it was in
her head.
Speaker 4 (12:56):
Very very frustrating, because you know, she knew something was
good going on. I think that's probably one of the
first reasons that she went back to the doctor for
the thyroid cancer, just to kind of see maybe if
that was causing the problem, because it was basically a
you know, let's see this symptom, let's treat that you
(13:18):
had to rule out all these other things.
Speaker 5 (13:20):
Maria's morphing symptoms were gradually eroding her ability to maintain
the patient centered medical practice she'd painstakingly built, and making
day to day life more difficult. Support for her symptoms
was on the horizon, but not before her life as
she knew it would be fully upended.
Speaker 1 (13:40):
I started not seeing that I could not really tell
what was going on on my left dreshold vision. I
was having a hard time parking between two cars.
Speaker 3 (13:52):
Everybody was saying, your eyes are fine, your vision is fine.
How can it be fine? I cannot draw?
Speaker 5 (14:00):
Be right back with Symptomatic, a Medical Mystery Podcast. Now
back to Symptomatic a Medical Mystery Podcast. Doctor Maria de
Leone had supported so many patients through challenging diagnostic journeys.
(14:23):
Now she was navigating one of her own. She'd been
experiencing involuntary muscle contractions and tightness for years, but now
her vision was being negatively impacted too. The cumulative symptoms
were weighing heavily on her professional and personal life.
Speaker 1 (14:44):
I started noticing when you do the exam with the patients,
you know, fingertab open and closed, And I was like, wait,
what the heck.
Speaker 3 (14:50):
Can I do that? You know, so that I'm looking
at myself like I'm having trouble doing that.
Speaker 5 (14:55):
Going back to your earliest memories of seeing those issues,
what did you notice.
Speaker 4 (15:01):
As her being our doctor? You know, I got to
watch the seven eight years she was in practice. I
watched her handwriting go from semi legible to totally illegible, and
just you know, watching her personality change a little bit.
Because when you're you don't feel good, everything starts magnifying.
Speaker 1 (15:22):
And so I wasn't sure if I was irritable because
all these things going on, Alli is zerrable. But I
was irritable all the time, like I said, And my
patients were like, you're being smaller today, you know, you
didn't give us a hurt getting I'm like, I just
want to get out of here, you.
Speaker 3 (15:33):
Know, it's like I don't want to be with anybody.
Speaker 5 (15:36):
But looking back, how are things progressing for you?
Speaker 2 (15:39):
You know?
Speaker 3 (15:39):
Like I always did my nails.
Speaker 1 (15:41):
I always had you know, flash and Esta completely always
had you know, to the tee, the shoes, the hair,
the earrings and everything, and well, I try to do
my nails and it was like a three year old
doing them.
Speaker 3 (15:54):
It's like they were just mets. It's like, what the heck?
And I was hurting all the time.
Speaker 5 (16:00):
How would you describe that pain?
Speaker 1 (16:03):
The pain was so excruciating that I could not stand
anyone to touch me because it felt like fire. I
could not shower because the water dripping on me, touching
my skin feel like acid was pouring down. So that's
how severe I got to the point I was in
tears all the time, couldn't touch my daughter. I was like, no,
(16:25):
I mean, it was hard to deal with that.
Speaker 5 (16:30):
What did they think was going on with you. Did
they think that you were appropriating the symptoms you were treating.
Speaker 1 (16:35):
They told me go see a psychiatrists and really hurt
me at the time. It really made me realize, these
are the same people that trusted me with their patients.
They're questioning my own capability of dinas and myself saying
that there's something wrong with me. And they're saying, oh,
you just you know, depressed, you just need to go
back to work. You've just been through a line. And
(16:56):
I was like, how can that be? How can they,
under one hand trust me and at the same time
said that they'd think, I'm, you know, just making all
these stags up.
Speaker 5 (17:05):
So at this point, Maria's symptoms are starting to become
more obvious and she's actively seeking a diagnosis. Do you
remember how she was feeling during this time, overwhelmed, frustrated.
Speaker 4 (17:20):
Yes, when she especially when she came home, and that's
what they told her, she would just you know, vent
and go you know, it's not like this, we're in tears.
I know something's going on. I'm sure it's the same
thing that doctors go through when they have these difficult
to diagnose patients.
Speaker 1 (17:38):
So after three years of having every test done, seeing
every single specialist, basically under the sun, having every test
short of a brain biopsy. I was ritnette. I was exhausted.
I had had done my hours at work. I was
no longer taking call. I couldn't sleep, I was falling
by that.
Speaker 5 (17:59):
Pushed to her brain point, Maria reached out to the
one person she knew would take the time to piece
together the many complicated parts of her mysterious medical challenges,
doctor Maya, She, whom Maria had first met while in residency.
Speaker 1 (18:15):
I finally called Maya and I said, Maya, I've been
dealing with this. I'm exhausted. I don't know what to do.
I know there's something wrong with me. I know it's neurological.
I think is Parkinson's, but I don't know. Got these
other symptoms that don't fit into the picture. But you know,
I need your opinion. I said, if you think that
(18:37):
it's all psychological, and I've been through so much stress
and grievings and whatever, I said, I'll take their opinion.
Speaker 3 (18:43):
I'll get help, Okay.
Speaker 2 (18:47):
First name is Maya, last name is She. I'm a
tenured professor at the University of Texas. Health Science Center.
I'm in the department of Neurology. I'm actually the director
of our Movement Disorders and Neudegenerative Diseases Clinic and Fellowship
program director. I realized that in my lifetime I would
(19:10):
never fully understand the brain or the nervous system, and
so that became an attraction for me to always be challenged.
Speaker 5 (19:19):
I would think that that makes you and Maria very
much cut from the same cloth.
Speaker 2 (19:25):
Yes, yes, we are cut from the same cloth. We
talked about this difficulty she was sensing in her her movements,
and my interpretation of them were that she had change
in her gait.
Speaker 4 (19:40):
So my first thoughts.
Speaker 2 (19:42):
About her was that she actually had what's called DOPA
response of dystonia. In fact, my first notes, I was
noting this change in rigid tone. I mean she was
like thirty five thirty seven, she was young, and I
was noticing that she had a symmetry in her limbs.
She had especially some increased tone in her leg and
(20:04):
armed on one side. And she was telling me that
sometimes she had difficulty holding objects and she felt that
her gait had changed. So that's what I picked up initially.
Speaker 5 (20:18):
Having fully examined Maria's symptoms and concerns doctor She's initially
prescribed a dopamine agent for an enzyme deficiency. She then
focused on Maria's spinal imagery due to her asymmetrical reflexes.
Speaker 2 (20:33):
So the moment of truth is when I saw how
robustly she responded to dolopminergic medicine replacement of dopamine.
Speaker 5 (20:43):
You knew that she had been to a number of
doctors over a number of years knowing her. Why was
she so frustrated and why was she desperate by the
time she came to you.
Speaker 2 (20:54):
So I think she was really frustrated because number one,
people are afraid of doctor. They're afraid of taking care
of them doctors. It's true, we make terrible patience.
Speaker 3 (21:06):
We don't do what we're told.
Speaker 2 (21:09):
We overthink, you know. So I think people were intimidated.
Speaker 3 (21:14):
She's a really good doctor.
Speaker 2 (21:16):
But that's not fair to her because she still deserves
a good exam, a good understanding of what's going on.
Speaker 5 (21:24):
Right After three years of juggling symptoms and searching for answers,
Maria finally had a doctor who saw her full symptomatic
picture and led her to a diagnosis. She was all
too familiar with Parkinson's disease being diagnosed by Maya. What
was that like for you? Did you feel vindicated on
(21:45):
some level and terrified on others?
Speaker 1 (21:48):
I was initially very vindicated and happy when she said
you have Parkinson's. I was like, yeah, looks like, you know,
like a celebration until it, you know, settled a few
days later.
Speaker 3 (21:59):
But at first of it was I knew it's not crazy.
I knew that I had something going on.
Speaker 4 (22:06):
I know that when she was kind of diagnosed with
that and actually got on some of the Parkinson's mids,
her muscle softened just you know, like an immediate relief that,
you know, things were doing better.
Speaker 1 (22:21):
When I started the medicine, even the small amounts initially,
until we you know, got the can doses right and everything.
I noticed that, hey, my vision is some better and
my pain is some better. And again it's like, if
I'm having this much trouble and I am a physician
that specializes in this disease and it took me three
(22:42):
years to get an official diagnosis from somebody and get treated, now,
imagine what all these people around the world I do
it and feeling and dealing with and in reality most
women take about three to five years to get diagnosed,
especially when they're younger.
Speaker 5 (22:58):
That's Maria's personality, and I'm not sure even reflecting on
the life changing news that she'd been seeking, she sympathizes
with people who don't have the same advantages she had
to speed up their diagnosis and treatment.
Speaker 2 (23:11):
It was surreal because she's, gosh, a good twenty years
younger than I am, and for fast friends and buddies
and just this brilliant, professional, loving, compassionate, wonderful human being
and just saying, Maria, I'm you know, I'm sorry, but
we're gonna have to work on a medical regimen that
(23:32):
keeps you going.
Speaker 5 (23:34):
Once the weight of that diagnosis hit you, what were
your fears?
Speaker 1 (23:38):
Well, you know, at first I feel vindicated, and then
I felt like, well, you know, I've been doing this year.
There's so many new advances we come a long with,
patients are doing better with the right treatment.
Speaker 3 (23:49):
We can do this.
Speaker 1 (23:50):
But then one day we were sitting there at dinner,
my husband, my daughter, and I and all of a sudden,
it just they hit me, is that I have it
progressed disease. And I know what that disease looks at
at the end, I know what patients go through, the isolation,
the troubles and difficulty, and I just started crying. I
(24:13):
start saying, my god, Am I going to be able
to take care of this three year old child? Am
I going to be able to raise her? Am I
going to be able to be there with her? Am
I going to be able to do the things I
want to do, like travel and enjoy you know, all
the languages and enjoy you know, still going out to
the movies and you know, talking to my friends. Am
(24:35):
I going to still be able to practice medicine?
Speaker 2 (24:39):
How rare is Parkinson's I'm going to be very nerdy
right now. But as they say, neurological diseases are the
fastest growing diseases worldwide now, and within that realm of
neurological diseases, unfortunately, Parkinson's disease is one of the fastest growing,
if not the fastest growing now. Currently in North America,
(25:00):
there's probably one point five million people with the disease,
but it's growing rapidly, and as they say, on the horizon,
there's this epidemic or pandemic of Parkinson's disease.
Speaker 5 (25:14):
An epidemic that disproportionately impacts people of Hispanic heritage.
Speaker 1 (25:19):
The Hispanic community, at least in this part of the world.
The US, there are higher risk for developing parkinsas there
are two times as high risk than any other ethnic group.
Speaker 2 (25:32):
And we feel that this is related to agricultural exposure
and pesticide ribside exposure. Another thing is the disparity in
healthcare has a lot to do with a lack of
media exposure to specialists in the field that could direct
people to more immediate care.
Speaker 1 (25:52):
Being Hispanic, there's a lot of misinformation in our community.
There's a lot of myths. So we have to explain
that Rory Knowle does not mean that you will have
tremors and shakes and fall and be confused as oientede.
So it's not an aging process, that it is actual disease.
Speaker 5 (26:13):
After years of suffering symptoms that gradually robbed her of
hermotor skills, Maria finally had a name for her unknown enemy, Parkinson's.
But she needed to figure out how she would share
that diagnosis with the people she was also treating.
Speaker 1 (26:30):
How would I tell my patience, How do I want
them to proceed? You know, give them hope? And so
I said, if I am the doctor and I've been
telling them these things this year, is that they can,
you know, still have a life, that they still can
I said, I got to be that example and so
embrace it.
Speaker 3 (26:45):
Yes, we don't like this disease.
Speaker 1 (26:47):
And now you know, sixteen years later, I can tell
you how god awful it could be sometimes, but overall,
I mean, it's given me.
Speaker 3 (26:53):
So much, so look at the positive side.
Speaker 5 (26:56):
In the years that followed, Maria juggled seeking treatment for
herself with devoted care for her patients while still being
a present mom and partner. Just two years after her diagnosis, though,
Maria had to face the harsh reality that her own
symptoms had progressed to the point that she could no
longer provide the care to her patients that she dedicated
(27:19):
her life to providing. Do you remember what she went
through when she made the decision to close her practice.
How hard was that for her?
Speaker 1 (27:29):
Oh?
Speaker 4 (27:29):
That was very, very, very hard. And you know, the
whole community cried with her because she's the exception, I
would say, a compassionate personality. Everybody loved her. The whole
community mourned when she had to close her practice.
Speaker 5 (27:46):
On a personal level, what makes you so proud of Maria,
And on a larger level, what kind of impact has
she had on Parkinson's.
Speaker 2 (27:58):
She's had a profound impact on women with Parkinson's disease,
I mean, and also I mean just broadly speaking, she
empowers people with understanding the disease, bringing it down to
day to day things, intimate things, things that people are
afraid to share. Just the idea of moving forward with
(28:18):
education and understanding and positivity and faith and prioritizing what's
important in your life.
Speaker 3 (28:26):
So that's really powerful.
Speaker 4 (28:28):
I'm proud of Maria.
Speaker 2 (28:30):
Just because of who she is, what she's done for humanity,
for Parkinson's disease, the person that she's become.
Speaker 5 (28:38):
And that includes becoming an author.
Speaker 1 (28:41):
I went into this medical community to care for Parkinson's patients,
so it's given me an opportunity really get to be
part of a global community. I get to really, I think,
in a way, maybe make a greater impact than I did,
you know, just being in my office.
Speaker 5 (28:59):
Maria turned her lifelong passion for caring for others and
her driving desire to make an impact in the Parkinson's
community into a book fittingly titled Parkinson's Diva, A Woman's
Guide to Parkinson's Disease, complete with an illustration of a
glamorous gallon a red dress on the cover.
Speaker 1 (29:18):
I had found a definition for diva that I really
really loved, and is said that sometimes it is a
person that can do extraordinary things with normal capabilities.
Speaker 3 (29:31):
That's what we want patients to be. That we want
them to speak.
Speaker 1 (29:34):
Loud and do loud activities and be loud and be big.
I said, kind of like divas, you know, you have
to be out there, be bold and do everything in
a big way.
Speaker 3 (29:44):
So I think the Parkinson's diva, will you represent that?
Speaker 1 (29:48):
So we decided to go with that, and I did
not know that it was going to start a movement
around the world.
Speaker 5 (29:54):
Seeing all the positive responses to her first book, Maria
was encouraged to write a second book, this time and Spanish,
and even produce a documentary on the disease, all in
hopes of creating more spaces for people to see that
Parkinson's is not the end, but simply a new direction.
Speaker 4 (30:12):
Being a diva is exemplified in Maria. That's just her.
You can still go out feel good about yourself no
matter what.
Speaker 1 (30:25):
You'll feel better and you'll be better in the end
when you know what is wrong and you can start
finding a treatment and a cure and a way to
live with it and live better. So that's what I
will say. And just because you have an illness, I
mean that's the end of life. And you can still
be a diva. It's still flourish, and you know, I
still worry crowning your boa feathers if you want, and
if you're dye, you can, you know, just be a diva.
Speaker 3 (30:48):
And do your own thing. So color your world in
your own way.
Speaker 5 (30:54):
To learn more about Maria's journey, check out her books,
including Parkinson's Diva, and for more information on the condition,
you can visit the Parkinson's Foundation website at parkinson dot org.
Speaker 1 (31:06):
My name is Maria de Leilan, and I was diagnosed
with Parkinson's at.
Speaker 3 (31:10):
A young age.
Speaker 5 (31:12):
On next week's episode of Symptomatic, Eliza tries to ignore
and brush off her periodically overwhelming giflare ups until she's
scared they'll threaten her ability to care for her new baby.
Speaker 6 (31:25):
And I was alone in the apartment with a baby,
and I didn't want to like pass out while Rowan
was still sleeping in his nap. I mean, I felt
like I'd been through the ringer, like I had gotten sick.
Speaker 5 (31:37):
The mysterious disease had been dropping breadcrumbs throughout her entire life?
Could she have seen this coming? That's it for this
episode of Symptomatic. Thank you for listening. What did you
think of this episode? We would love to hear from you.
Send us your thoughts or share a medical mystery of
your own at Symptomatic at iHeartMedia dot com. Please don't
(32:00):
forget to rate and review this podcast wherever you're listening.
Symptomatic Medical Mystery Podcast is a production of Ruby Studio
from iHeartMedia. Our show is hosted by me Lauren breg Pacheco.
Executive producers are Matt Romano and myself. Our EP of
post production is James Foster. Our producers are Sierra Kaiser
(32:22):
and John Irwin. And this episode was researched by Diana
Davis
I was having a hard time parking between two cars.
Speaker 2 (00:08):
Yep.
Speaker 1 (00:08):
Everybody was saying, your eyes are fine, your vision is fine.
Speaker 3 (00:12):
How can it be fine? I cannot dry and.
Speaker 4 (00:16):
Just you know, watching her personality change a little bit,
because when you're you don't feel good, everything starts magnifying.
Speaker 2 (00:25):
She was telling me that sometimes she had difficulty holding objects,
and she felt that her gait had changed.
Speaker 1 (00:32):
So that's what I picked up. Initially, I was exhausted.
I had hugged down my hours at work. I was
no longer taken call. I couldn't sleep, I was falling
By then.
Speaker 5 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:12):
These are their stories. A Lauren Brat Pacheco, and this
is symptomatic. Doctor Maria de Leone's charismatic and creative personality
(01:37):
instantly rubs off on you something that you may not
expect from your typical neurologist. What are your passions.
Speaker 3 (01:44):
What do you love?
Speaker 4 (01:45):
Oh?
Speaker 1 (01:45):
I love you know, it's funny because I'm really a
fashion east at heart. I mean, I look at today,
but I love fashion colors and traveling and learning new languages.
I speak for languages. I've been trying to learn Turkish.
I started during the pandemic, so you know, I'm getting
a little bit better, but it's still I said. I
(02:07):
told my husband, I said, I need to go to
you know, Turkey, so I can practice the language.
Speaker 3 (02:11):
Since so, which four languages do you speak?
Speaker 1 (02:15):
I speak some Italian and French, on of course Spanish,
and then you know English, and now well, I guess
with the language will be with the Turkish.
Speaker 5 (02:23):
Maria definitely leads a multifaceted life. One aspect of her
is an incredibly intelligent and curious doctor focused on treating
not only the symptoms, but a person as a whole.
She also proudly presents as a self described diva. How
would you describe Maria as somebody who hasn't met her,
Tell me a little bit about what you love about
(02:44):
her personality.
Speaker 4 (02:46):
Oh, Maria is just the most bubbly, vivacious person.
Speaker 5 (02:51):
That's Janet, Maria's longtime friend and an integral part of
her support system.
Speaker 4 (02:57):
Just the sweetest, most generous person I've probably ever met.
She will put it, you know, somebody else's concerns above
her own, any day of the week.
Speaker 5 (03:09):
A fashionista and dedicated, driven doctor, Maria would have no
idea that a complex and unpredictable diagnostic journey would eventually
upend her life. She first fell in love with the
field of medicine during a memorably captivating college lecture.
Speaker 1 (03:26):
My professor he must have had somebody in his family
or some relation, because he would talk about Parkinson's all
the time, and one of his lectures he was talking
about fetal brain transplantation, and I said, right then and there,
I'm going to medical school.
Speaker 3 (03:44):
I want to be a neurosurgeon.
Speaker 1 (03:46):
I want to do that kind of surgery to help
people with Parkins's.
Speaker 5 (03:51):
She spent the first decade of her career in Pennsylvania,
falling in love with the Philadelphia area, but East Coast
winters would ultimately drive her back west her early thirties,
where she'd open her own practice in Nakadochas, a small city.
Speaker 3 (04:05):
In East Texas.
Speaker 5 (04:06):
That's where she first met Janet and her husband Mark.
Both were ecstatic to have a local neurologist, so.
Speaker 1 (04:15):
Mark, it was my first patient in Parkins is also
my first patient in the small town community. He was
a godsend because he was the loveliest, nicest person, the sweetest,
you know. As soon as we got here, he had
round up everybody for me, everybody he knew that had
any kind of neurologic disease, especially if he thought they
(04:36):
had you know, parkins as.
Speaker 3 (04:38):
He run them all up.
Speaker 1 (04:38):
So when I opened my practice, I almost had a
full practice because of him.
Speaker 5 (04:46):
Maria brought a personalized touch to her Nacodocus practice because
of her previous medical battle. Just after she was married,
Maria had been diagnosed with thyroid cancer. She would fight
through multiple surgeries to that cancer into remission. The experience
allowed her to connect with her patients on a deeper level,
(05:07):
but it was also the first sign of more serious
medical issues to come.
Speaker 1 (05:14):
And I remember after the second surgery, you know, my throat,
we just felt like I was being choked. I think
that's when I started noticing something was going on, because
then my voice changed. Every time I'd dictate or I
taught to patients a lot, I would lose my voice.
Would get very rasped. It would get very very very
tight in my throat, and I could no longer sing.
(05:36):
I mean, I was never the best saying I used
to be in the choir. And again at that time,
still thought that it was the thyroid that I'd had surgery,
and so really wasn't you know, paying attention to the
other things Prior to that and residency, I had noticed
that I was getting a lot of tightness in my arm,
in my right hand.
Speaker 3 (05:55):
I'm right handed. And again, you're busy.
Speaker 1 (05:58):
You just started learning about a new field, and everybody said, oh,
you probably had carpal tunnel.
Speaker 5 (06:04):
Maria's symptoms started to become more substantial and noticeable just
as she was navigating her new practice in Nacadocus, But
as a young doctor under considerable stress, she pushed aside
her own concerns to focus on those of her patients.
When you were in a doctor role with Mark and
(06:26):
you said that he and Janet became like family, was
it reassuring or did that put pressure on you to
serve in the capacity of being his neurologist.
Speaker 3 (06:38):
No, it was.
Speaker 1 (06:38):
Really nice to have that personal connection because you know,
the one thing I'm sure you know, when you go
to the doctor, you have a limited amount of time
and then you focus on one thing or two things,
and then you know, move up.
Speaker 3 (06:49):
But says I knew him.
Speaker 1 (06:52):
I could see from the outside things that were changing,
things that were you know, bothering that he would not
mention or his wife would not mention. I think I've
always been a very personal, you know, be hispatic, maybe
you know, touchy feely. I like to get everybody house
and kisses, and you know, really get involved in their.
Speaker 3 (07:09):
Lives, like how's your family, are your kids? You know
what's going on? And I think that makes a difference.
Speaker 5 (07:15):
Having formed such meaningful relationships with your patients. Was it
difficult to watch Parkinson's take its toll on Mark?
Speaker 1 (07:24):
It was difficult because you know, as a loving friend,
you know, I would tell Jennifer's heavy, noticed that his
cognitive status is not as well he's repeating, or that
he's been falling lots lately, and he doesn't tell me.
Speaker 4 (07:37):
There you see a very healthy, active person become less
and less active. Does the tremors get worse? You know,
it's hard to eat. As Mark said, you know, part
of this stuff is you couldn't put corner peas on
a fork because they're going to fly off.
Speaker 5 (07:56):
And I imagine that Maria was a huge support for
you when your husband Mark passed.
Speaker 4 (08:02):
Oh yes, yes, yes, today he had his aneurysm. You know,
it was just we knew and she, you know, she
came up to the hospital because my daughter was traveling
doing a spring break vacation with their two sons, and
I called her and I said, you know, your dad's fallen.
You need to come. And she drove the fifteen hours
(08:23):
from Colorado back Toncadoches and Maria stayed with me till
they got here.
Speaker 5 (08:31):
In terms of being such a hands on doctor, losing
patients must never ugh, you don't get used to it.
Speaker 1 (08:40):
At least I never did. I mean, some people may
develop some you know, you get a little bit tougher.
But it always affected me, maybe because I always invested
myself so much into people's lives and so it always
was hard.
Speaker 5 (08:56):
As a neurologist, Maria had become well versed in the
stating impact that a degenerative disease like Parkinson's can have
on a patient's lifestyle and physical capabilities. While it was
part of her role as a doctor, it never became
less painful to process that inevitable decline. It became even
more personal when her grandmother was diagnosed with the disease
(09:20):
and just explained to me her walking through the door,
what you picked up on and what you knew.
Speaker 1 (09:25):
Well, the first thing was that my uncle would say, well,
she just doesn't want to do anything.
Speaker 3 (09:30):
She doesn't want to get up and go.
Speaker 1 (09:31):
She's very slow, and you know, of course all those terms,
you know, thinking about Parkinson's. But all I had to
do was take one look. She couldn't get out of
the car to begin with, and her facial expression, her
slowness and doing everything her caremors had gone work, and
so it was very you know, obvious that this is
what was going on. So I was, you know, a
(09:51):
caregiver from Afar for that time until my grandfather passed
away and she couldn't really walk and.
Speaker 3 (09:58):
Get around and shout stuff. I said, you can't be here.
Speaker 1 (10:02):
You don't have you know, the doctors here, you don't
have you know, the medications. Nobody you know really gonna
be able to take care of you. So on, don't
you come back to Texas and we take care.
Speaker 3 (10:12):
Of you for you?
Speaker 5 (10:13):
That must have been surreal on so many levels. One,
you know, you're wearing your doctor hat, your granddaughter hat,
your caregiver hat, but also just the aspect that your
grandmother has been diagnosed now and suffering with your area of.
Speaker 1 (10:30):
Expertise exactly exactly, And so that was really hard to see.
And I thought, I'll get her into shape. You know,
she'll come over here, We'll get her the right medications.
I got her physical therapy, I got it, home health,
got her everything.
Speaker 5 (10:48):
Sadly, with time, the degenerative disease would still go on
to take her grandmother's life. Maria had now lost two
loved ones, her grandmother and her friend Mark Janet's husband,
to this same disease. She dedicated her life to studying Parkinson's,
but even as she continued to prioritize caring for her
patients and family, it was becoming harder and harder to
(11:11):
ignore her own progressing symptoms. When did you start to
realize that something was really off.
Speaker 1 (11:20):
When it really happened was right before my grandmother passed away.
That's when things got really worrisome, that something was.
Speaker 3 (11:28):
It really dawned on me.
Speaker 1 (11:30):
I got something, and this is serious. I mean I
was going to bathroom a million times a day. I
was going to bathroom all the time. And you know,
I went to the doctor and they're like, you don't
have you know, it's fine, it's fine, And I'm like, well,
I can't drive, you know, like a mile without stopping.
Speaker 5 (11:45):
You know.
Speaker 1 (11:46):
Also I was starting to have visual defects. One and night,
I couldn't judge distance, so I almost got run over
a couple of times. I would notice that that constant
stopping and starting, you know, the gas pedal.
Speaker 3 (11:59):
It cramped my legs so bad that I.
Speaker 1 (12:03):
Was really worried that I would to get into access
because it would get so involuntility contracted that I couldn't
release it. And if I suddenly pressed on the gas
or something, I was going to you know, have problems.
As all these other symptoms were going on, some of
the thyroid dishes were coming back, and so I had
recurrence of the cancer you know, and had to then
(12:23):
go through the eyedine treatment and things, which is then
worse than my other symptoms.
Speaker 3 (12:28):
So it's like it's a lot.
Speaker 5 (12:31):
But even when Maria, as a young doctor and young mother,
turned to other doctors for help, she found they dismissed
her downplay her symptoms, something her friend Janet recalls, Well,
you mentioned that she almost knew too much. Yes, in
what ways do you think it was difficult for her
being a doctor, dealing with these symptoms and going to
(12:52):
other doctors and kind of being told it was in
her head.
Speaker 4 (12:56):
Very very frustrating, because you know, she knew something was
good going on. I think that's probably one of the
first reasons that she went back to the doctor for
the thyroid cancer, just to kind of see maybe if
that was causing the problem, because it was basically a
you know, let's see this symptom, let's treat that you
(13:18):
had to rule out all these other things.
Speaker 5 (13:20):
Maria's morphing symptoms were gradually eroding her ability to maintain
the patient centered medical practice she'd painstakingly built, and making
day to day life more difficult. Support for her symptoms
was on the horizon, but not before her life as
she knew it would be fully upended.
Speaker 1 (13:40):
I started not seeing that I could not really tell
what was going on on my left dreshold vision. I
was having a hard time parking between two cars.
Speaker 3 (13:52):
Everybody was saying, your eyes are fine, your vision is fine.
How can it be fine? I cannot draw?
Speaker 5 (14:00):
Be right back with Symptomatic, a Medical Mystery Podcast. Now
back to Symptomatic a Medical Mystery Podcast. Doctor Maria de
Leone had supported so many patients through challenging diagnostic journeys.
(14:23):
Now she was navigating one of her own. She'd been
experiencing involuntary muscle contractions and tightness for years, but now
her vision was being negatively impacted too. The cumulative symptoms
were weighing heavily on her professional and personal life.
Speaker 1 (14:44):
I started noticing when you do the exam with the patients,
you know, fingertab open and closed, And I was like, wait,
what the heck.
Speaker 3 (14:50):
Can I do that? You know, so that I'm looking
at myself like I'm having trouble doing that.
Speaker 5 (14:55):
Going back to your earliest memories of seeing those issues,
what did you notice.
Speaker 4 (15:01):
As her being our doctor? You know, I got to
watch the seven eight years she was in practice. I
watched her handwriting go from semi legible to totally illegible, and
just you know, watching her personality change a little bit.
Because when you're you don't feel good, everything starts magnifying.
Speaker 1 (15:22):
And so I wasn't sure if I was irritable because
all these things going on, Alli is zerrable. But I
was irritable all the time, like I said, And my
patients were like, you're being smaller today, you know, you
didn't give us a hurt getting I'm like, I just
want to get out of here, you.
Speaker 3 (15:33):
Know, it's like I don't want to be with anybody.
Speaker 5 (15:36):
But looking back, how are things progressing for you?
Speaker 2 (15:39):
You know?
Speaker 3 (15:39):
Like I always did my nails.
Speaker 1 (15:41):
I always had you know, flash and Esta completely always
had you know, to the tee, the shoes, the hair,
the earrings and everything, and well, I try to do
my nails and it was like a three year old
doing them.
Speaker 3 (15:54):
It's like they were just mets. It's like, what the heck?
And I was hurting all the time.
Speaker 5 (16:00):
How would you describe that pain?
Speaker 1 (16:03):
The pain was so excruciating that I could not stand
anyone to touch me because it felt like fire. I
could not shower because the water dripping on me, touching
my skin feel like acid was pouring down. So that's
how severe I got to the point I was in
tears all the time, couldn't touch my daughter. I was like, no,
(16:25):
I mean, it was hard to deal with that.
Speaker 5 (16:30):
What did they think was going on with you. Did
they think that you were appropriating the symptoms you were treating.
Speaker 1 (16:35):
They told me go see a psychiatrists and really hurt
me at the time. It really made me realize, these
are the same people that trusted me with their patients.
They're questioning my own capability of dinas and myself saying
that there's something wrong with me. And they're saying, oh,
you just you know, depressed, you just need to go
back to work. You've just been through a line. And
(16:56):
I was like, how can that be? How can they,
under one hand trust me and at the same time
said that they'd think, I'm, you know, just making all
these stags up.
Speaker 5 (17:05):
So at this point, Maria's symptoms are starting to become
more obvious and she's actively seeking a diagnosis. Do you
remember how she was feeling during this time, overwhelmed, frustrated.
Speaker 4 (17:20):
Yes, when she especially when she came home, and that's
what they told her, she would just you know, vent
and go you know, it's not like this, we're in tears.
I know something's going on. I'm sure it's the same
thing that doctors go through when they have these difficult
to diagnose patients.
Speaker 1 (17:38):
So after three years of having every test done, seeing
every single specialist, basically under the sun, having every test
short of a brain biopsy. I was ritnette. I was exhausted.
I had had done my hours at work. I was
no longer taking call. I couldn't sleep, I was falling
by that.
Speaker 5 (17:59):
Pushed to her brain point, Maria reached out to the
one person she knew would take the time to piece
together the many complicated parts of her mysterious medical challenges,
doctor Maya, She, whom Maria had first met while in residency.
Speaker 1 (18:15):
I finally called Maya and I said, Maya, I've been
dealing with this. I'm exhausted. I don't know what to do.
I know there's something wrong with me. I know it's neurological.
I think is Parkinson's, but I don't know. Got these
other symptoms that don't fit into the picture. But you know,
I need your opinion. I said, if you think that
(18:37):
it's all psychological, and I've been through so much stress
and grievings and whatever, I said, I'll take their opinion.
Speaker 3 (18:43):
I'll get help, Okay.
Speaker 2 (18:47):
First name is Maya, last name is She. I'm a
tenured professor at the University of Texas. Health Science Center.
I'm in the department of Neurology. I'm actually the director
of our Movement Disorders and Neudegenerative Diseases Clinic and Fellowship
program director. I realized that in my lifetime I would
(19:10):
never fully understand the brain or the nervous system, and
so that became an attraction for me to always be challenged.
Speaker 5 (19:19):
I would think that that makes you and Maria very
much cut from the same cloth.
Speaker 2 (19:25):
Yes, yes, we are cut from the same cloth. We
talked about this difficulty she was sensing in her her movements,
and my interpretation of them were that she had change
in her gait.
Speaker 4 (19:40):
So my first thoughts.
Speaker 2 (19:42):
About her was that she actually had what's called DOPA
response of dystonia. In fact, my first notes, I was
noting this change in rigid tone. I mean she was
like thirty five thirty seven, she was young, and I
was noticing that she had a symmetry in her limbs.
She had especially some increased tone in her leg and
(20:04):
armed on one side. And she was telling me that
sometimes she had difficulty holding objects and she felt that
her gait had changed. So that's what I picked up initially.
Speaker 5 (20:18):
Having fully examined Maria's symptoms and concerns doctor She's initially
prescribed a dopamine agent for an enzyme deficiency. She then
focused on Maria's spinal imagery due to her asymmetrical reflexes.
Speaker 2 (20:33):
So the moment of truth is when I saw how
robustly she responded to dolopminergic medicine replacement of dopamine.
Speaker 5 (20:43):
You knew that she had been to a number of
doctors over a number of years knowing her. Why was
she so frustrated and why was she desperate by the
time she came to you.
Speaker 2 (20:54):
So I think she was really frustrated because number one,
people are afraid of doctor. They're afraid of taking care
of them doctors. It's true, we make terrible patience.
Speaker 3 (21:06):
We don't do what we're told.
Speaker 2 (21:09):
We overthink, you know. So I think people were intimidated.
Speaker 3 (21:14):
She's a really good doctor.
Speaker 2 (21:16):
But that's not fair to her because she still deserves
a good exam, a good understanding of what's going on.
Speaker 5 (21:24):
Right After three years of juggling symptoms and searching for answers,
Maria finally had a doctor who saw her full symptomatic
picture and led her to a diagnosis. She was all
too familiar with Parkinson's disease being diagnosed by Maya. What
was that like for you? Did you feel vindicated on
(21:45):
some level and terrified on others?
Speaker 1 (21:48):
I was initially very vindicated and happy when she said
you have Parkinson's. I was like, yeah, looks like, you know,
like a celebration until it, you know, settled a few
days later.
Speaker 3 (21:59):
But at first of it was I knew it's not crazy.
I knew that I had something going on.
Speaker 4 (22:06):
I know that when she was kind of diagnosed with
that and actually got on some of the Parkinson's mids,
her muscle softened just you know, like an immediate relief that,
you know, things were doing better.
Speaker 1 (22:21):
When I started the medicine, even the small amounts initially,
until we you know, got the can doses right and everything.
I noticed that, hey, my vision is some better and
my pain is some better. And again it's like, if
I'm having this much trouble and I am a physician
that specializes in this disease and it took me three
(22:42):
years to get an official diagnosis from somebody and get treated, now,
imagine what all these people around the world I do
it and feeling and dealing with and in reality most
women take about three to five years to get diagnosed,
especially when they're younger.
Speaker 5 (22:58):
That's Maria's personality, and I'm not sure even reflecting on
the life changing news that she'd been seeking, she sympathizes
with people who don't have the same advantages she had
to speed up their diagnosis and treatment.
Speaker 2 (23:11):
It was surreal because she's, gosh, a good twenty years
younger than I am, and for fast friends and buddies
and just this brilliant, professional, loving, compassionate, wonderful human being
and just saying, Maria, I'm you know, I'm sorry, but
we're gonna have to work on a medical regimen that
(23:32):
keeps you going.
Speaker 5 (23:34):
Once the weight of that diagnosis hit you, what were
your fears?
Speaker 1 (23:38):
Well, you know, at first I feel vindicated, and then
I felt like, well, you know, I've been doing this year.
There's so many new advances we come a long with,
patients are doing better with the right treatment.
Speaker 3 (23:49):
We can do this.
Speaker 1 (23:50):
But then one day we were sitting there at dinner,
my husband, my daughter, and I and all of a sudden,
it just they hit me, is that I have it
progressed disease. And I know what that disease looks at
at the end, I know what patients go through, the isolation,
the troubles and difficulty, and I just started crying. I
(24:13):
start saying, my god, Am I going to be able
to take care of this three year old child? Am
I going to be able to raise her? Am I
going to be able to be there with her? Am
I going to be able to do the things I
want to do, like travel and enjoy you know, all
the languages and enjoy you know, still going out to
the movies and you know, talking to my friends. Am
(24:35):
I going to still be able to practice medicine?
Speaker 2 (24:39):
How rare is Parkinson's I'm going to be very nerdy
right now. But as they say, neurological diseases are the
fastest growing diseases worldwide now, and within that realm of
neurological diseases, unfortunately, Parkinson's disease is one of the fastest growing,
if not the fastest growing now. Currently in North America,
(25:00):
there's probably one point five million people with the disease,
but it's growing rapidly, and as they say, on the horizon,
there's this epidemic or pandemic of Parkinson's disease.
Speaker 5 (25:14):
An epidemic that disproportionately impacts people of Hispanic heritage.
Speaker 1 (25:19):
The Hispanic community, at least in this part of the world.
The US, there are higher risk for developing parkinsas there
are two times as high risk than any other ethnic group.
Speaker 2 (25:32):
And we feel that this is related to agricultural exposure
and pesticide ribside exposure. Another thing is the disparity in
healthcare has a lot to do with a lack of
media exposure to specialists in the field that could direct
people to more immediate care.
Speaker 1 (25:52):
Being Hispanic, there's a lot of misinformation in our community.
There's a lot of myths. So we have to explain
that Rory Knowle does not mean that you will have
tremors and shakes and fall and be confused as oientede.
So it's not an aging process, that it is actual disease.
Speaker 5 (26:13):
After years of suffering symptoms that gradually robbed her of
hermotor skills, Maria finally had a name for her unknown enemy, Parkinson's.
But she needed to figure out how she would share
that diagnosis with the people she was also treating.
Speaker 1 (26:30):
How would I tell my patience, How do I want
them to proceed? You know, give them hope? And so
I said, if I am the doctor and I've been
telling them these things this year, is that they can,
you know, still have a life, that they still can
I said, I got to be that example and so
embrace it.
Speaker 3 (26:45):
Yes, we don't like this disease.
Speaker 1 (26:47):
And now you know, sixteen years later, I can tell
you how god awful it could be sometimes, but overall,
I mean, it's given me.
Speaker 3 (26:53):
So much, so look at the positive side.
Speaker 5 (26:56):
In the years that followed, Maria juggled seeking treatment for
herself with devoted care for her patients while still being
a present mom and partner. Just two years after her diagnosis, though,
Maria had to face the harsh reality that her own
symptoms had progressed to the point that she could no
longer provide the care to her patients that she dedicated
(27:19):
her life to providing. Do you remember what she went
through when she made the decision to close her practice.
How hard was that for her?
Speaker 1 (27:29):
Oh?
Speaker 4 (27:29):
That was very, very, very hard. And you know, the
whole community cried with her because she's the exception, I
would say, a compassionate personality. Everybody loved her. The whole
community mourned when she had to close her practice.
Speaker 5 (27:46):
On a personal level, what makes you so proud of Maria,
And on a larger level, what kind of impact has
she had on Parkinson's.
Speaker 2 (27:58):
She's had a profound impact on women with Parkinson's disease,
I mean, and also I mean just broadly speaking, she
empowers people with understanding the disease, bringing it down to
day to day things, intimate things, things that people are
afraid to share. Just the idea of moving forward with
(28:18):
education and understanding and positivity and faith and prioritizing what's
important in your life.
Speaker 3 (28:26):
So that's really powerful.
Speaker 4 (28:28):
I'm proud of Maria.
Speaker 2 (28:30):
Just because of who she is, what she's done for humanity,
for Parkinson's disease, the person that she's become.
Speaker 5 (28:38):
And that includes becoming an author.
Speaker 1 (28:41):
I went into this medical community to care for Parkinson's patients,
so it's given me an opportunity really get to be
part of a global community. I get to really, I think,
in a way, maybe make a greater impact than I did,
you know, just being in my office.
Speaker 5 (28:59):
Maria turned her lifelong passion for caring for others and
her driving desire to make an impact in the Parkinson's
community into a book fittingly titled Parkinson's Diva, A Woman's
Guide to Parkinson's Disease, complete with an illustration of a
glamorous gallon a red dress on the cover.
Speaker 1 (29:18):
I had found a definition for diva that I really
really loved, and is said that sometimes it is a
person that can do extraordinary things with normal capabilities.
Speaker 3 (29:31):
That's what we want patients to be. That we want
them to speak.
Speaker 1 (29:34):
Loud and do loud activities and be loud and be big.
I said, kind of like divas, you know, you have
to be out there, be bold and do everything in
a big way.
Speaker 3 (29:44):
So I think the Parkinson's diva, will you represent that?
Speaker 1 (29:48):
So we decided to go with that, and I did
not know that it was going to start a movement
around the world.
Speaker 5 (29:54):
Seeing all the positive responses to her first book, Maria
was encouraged to write a second book, this time and Spanish,
and even produce a documentary on the disease, all in
hopes of creating more spaces for people to see that
Parkinson's is not the end, but simply a new direction.
Speaker 4 (30:12):
Being a diva is exemplified in Maria. That's just her.
You can still go out feel good about yourself no
matter what.
Speaker 1 (30:25):
You'll feel better and you'll be better in the end
when you know what is wrong and you can start
finding a treatment and a cure and a way to
live with it and live better. So that's what I
will say. And just because you have an illness, I
mean that's the end of life. And you can still
be a diva. It's still flourish, and you know, I
still worry crowning your boa feathers if you want, and
if you're dye, you can, you know, just be a diva.
Speaker 3 (30:48):
And do your own thing. So color your world in
your own way.
Speaker 5 (30:54):
To learn more about Maria's journey, check out her books,
including Parkinson's Diva, and for more information on the condition,
you can visit the Parkinson's Foundation website at parkinson dot org.
Speaker 1 (31:06):
My name is Maria de Leilan, and I was diagnosed
with Parkinson's at.
Speaker 3 (31:10):
A young age.
Speaker 5 (31:12):
On next week's episode of Symptomatic, Eliza tries to ignore
and brush off her periodically overwhelming giflare ups until she's
scared they'll threaten her ability to care for her new baby.
Speaker 6 (31:25):
And I was alone in the apartment with a baby,
and I didn't want to like pass out while Rowan
was still sleeping in his nap. I mean, I felt
like I'd been through the ringer, like I had gotten sick.
Speaker 5 (31:37):
The mysterious disease had been dropping breadcrumbs throughout her entire life?
Could she have seen this coming? That's it for this
episode of Symptomatic. Thank you for listening. What did you
think of this episode? We would love to hear from you.
Send us your thoughts or share a medical mystery of
your own at Symptomatic at iHeartMedia dot com. Please don't
(32:00):
forget to rate and review this podcast wherever you're listening.
Symptomatic Medical Mystery Podcast is a production of Ruby Studio
from iHeartMedia. Our show is hosted by me Lauren breg Pacheco.
Executive producers are Matt Romano and myself. Our EP of
post production is James Foster. Our producers are Sierra Kaiser
(32:22):
and John Irwin. And this episode was researched by Diana
Davis
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