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