Case #14: Maria
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I was having a hard time parking between two cars. Everybody was saying, your eyes are fine, your vision is fine. How can it be fine? I cannot drive. And just, you know, watching her personality change a little bit because when you don't feel good, everything starts magnifying.

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. I was exhausted. I had cut down my hours at work. I was no longer taking call. I couldn't sleep. I was falling by then. 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. These are their stories. I'm Lauren Bright Pacheco, and this is Symptomatic.

Dr. Maria DeLeon's charismatic and creative personality instantly rubs off on you, something that you may not expect from your typical neurologist.

What are your passions? What do you love? Oh, I love, you know, it's funny because I'm really a fashionista at heart. I mean, I look it today, but I love fashion, colors and traveling and learning new languages. I speak four languages. I've been trying to learn Turkish. I started during the pandemic. So I'm learning Turkish.

So, you know, I'm getting a little bit better, but it's still, I told my husband, I said, I need to go to, you know, Turkey so I can practice the language. Which four languages do you speak? I speak some Italian and French and of course Spanish and then, you know, English. And now, well, I guess fifth language would be with the Turkish language.

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 to somebody who hasn't met her? Tell me a little bit about what you love about her personality. Oh, Maria is just the most bubbly, vivacious person.

That's Janet, Maria's longtime friend and an integral part of her support system. Just the sweetest, most generous person I've probably ever met. She will put somebody else's concerns above her own any day of the week.

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. 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. I want to be a neurosurgeon. I want to do that kind of surgery to help people with Parkinson's.

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 by her early 30s, where she'd open her own practice in Nacogdoches, a small city in East Texas. That's where she first met Janet and her husband, Mark. Both were ecstatic to have a local neurologist.

So Mark, it was my first patient in Parkinson's, also my first patient in the small town community. He was a godsend because he was the loveliest, nicest person, the sweetest. 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 had, you know, Parkinson's. He round them all up. So when I opened my practice, I almost had a full practice because of him. Maria brought a personalized touch to her Nacogdoches 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 kick that cancer into remission. The experience allowed her to connect with her patients on a deeper level, but it was also the first sign of more serious medical issues to come.

And I remember after the second surgery, you know, my throat 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 dictated or talked to patients a lot,

I would lose my voice. It would get very raspy. It would get very, very, very tight in my throat. And I could no longer sing. I mean, I was never the best singer. 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 in residency, I had noticed that I was getting a lot of tightness in my arm, my right hand. I'm right-handed.

And again, you're busy, you just started learning about a new field, and everybody said, oh, you probably have carpal tunnel. Maria's symptoms started to become more substantial and noticeable just as she was navigating her new practice in Nacogdoches. 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 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?

No, it was 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. But since I knew him, 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 think I've always been a very personable, you know, being Hispanic, maybe, you know, touchy feely. I like to give everybody hugs and kisses and, you know, really get involved in their lives. Like, how's your family? How are your kids? You know, what's going on? And I think that makes a difference.

Having formed such meaningful relationships with your patients, was it difficult to watch Parkinson's take its toll on Mark? It was difficult because, you know, as a loving friend, you know, I would tell Jennifer, have you noticed that his cognitive status is not as well? He keeps repeating or that he's been falling lots lately and he doesn't tell me that.

You see a very healthy, active person become less and less active. As the tremors get worse, you know, it's hard to eat. As Mark said, you know, part of this stuff was you couldn't put corn or peas on a fork because they're going to fly off. And I imagine that Maria was a huge support for you when your husband Mark passed. Oh, yes, yes, yes. The day 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 15 hours from Colorado back to Nacogdoches. And Maria stayed with me until they got here. In terms of being such a hands-on doctor yourself,

Losing patience must never... You don't get used to it. 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.

As a neurologist, Maria had become well-versed in the devastating 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.

And just explain to me her walking through the door, what you picked up on and what you knew. Well, the first thing was that my uncle would say, well, she just doesn't want to do anything. She doesn't want to get up and go. 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 in doing everything, her tremors had gotten worse. And so it was very, you know, obvious that this is what was going on. So I was, you know, a caregiver from afar for that time until my grandfather passed away. And she couldn't really walk and get around and shower and stuff as it was.

you can't be here. You don't have, you know, the doctors here. You don't have, you know, the medications. Nobody, you know, really going to be able to take care of you. I said, why don't you come back to Texas and we'll take care of you.

For you, 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 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 her home health, got her everything.

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 the 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 ignore her own progressing symptoms.

When did you start to realize that something was really off? When it really happened was right before my grandmother passed away. That's when things got really tough.

worrisome that something was, it really dawned on me, I got something and this is serious. I mean, I was going to the bathroom a million times a day. I was going to the 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, you know. Also, I was starting to have visual defects and

One at 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, it would cramp my legs so bad that I was really worried that I would get into accidents because it would get so involuntarily contracted that I couldn't release it. And if I suddenly press 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 issues were coming back. And so I had recurrence of the cancer, you know, and had to then go through the iodine treatment and things, which then worsened my other symptoms. So it's like, it's a lot. But even when Maria, as a young doctor and young mother, turned to other doctors for help, she found they dismissed or downplayed 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 other doctors and kind of being told it was in her head? Very, very frustrating because she knew something was 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 had to rule out all these other things. 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.

I started noticing that I could not really tell what was going on in my left peripheral vision. I was having a hard time parking between two cars. Everybody was saying, your eyes are fine. Your vision is fine. How can it be fine? I cannot draw. We'll be right back with Symptomatic, a medical mystery podcast. Now back to Symptomatic, a medical mystery podcast.

Dr. Maria DeLeon had supported so many patients through challenging diagnostic journeys. 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.

I started noticing when you do the exam with the patients, you know, finger tap, open and close. And I was like, wait, why the heck can I do that? You know, so then I'm looking at myself like I'm having trouble doing that. Going back to your earliest memories of seeing those issues, what did you notice? 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. And so I wasn't sure if I was irritable because all these things going on, I was just irritable, but I was irritable all the time. Like I said, my patients were like, you didn't smile today. You know, you didn't give us a heart getting, I'm like, I just want to get out of here. You know, it's like, I don't want to be with anybody. But looking back, how are things progressing for you?

You know, like, I always did my nails. I always had, you know, fashionista completely. I always had, you know, the tee, the shoes, the hair, the earrings and everything. And, well, I tried to do my nails, and it was like a three-year-old doing them. It's like they were just a mess. It's like, what the heck? And I was hurting all the time. How would you describe that pain? 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, felt 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, don't hurt me. It was hard to deal with that. What did they think was going on with you? Did they think that you were appropriating the symptoms you were treating? They told me, go see a psychiatrist.

And it 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 diagnosis and myself saying that there's something wrong with me. And they're saying, oh, you're just, you know, depressed. You just need to go back to work. You've just been through a lot. And I was like, how can that be? How can they on the one hand trust me? And at the same time say that they think I'm, you know, just making all this things up.

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? Yes. 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. 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 run out. I was exhausted. I had cut down my hours at work. I was no longer taking call. I couldn't sleep. I was falling by then.

Pushed to her breaking 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, Dr. Maya Sheese, whom Maria had first met while in residency.

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 it's 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 it's all psychological and I've been through so much stress and grievance and whatever, I said, I'll take your opinion. I'll get help.

Okay, first name is Maya, last name is Sheese. 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 Neurodegenerative Diseases Clinic and Fellowship Program Director. I realized that in my lifetime I would never fully understand

the brain or the nervous system. And so that became an attraction for me to always be challenged. I would think that that makes you and Maria very much cut from the same cloth. Yes, yes, we are cut from the same cloth. We talked about this difficulty she was sensing in her movements. And my interpretation of them were that she had

a change in her gait. So my first thoughts about her was that she actually had what's called Doporesponsive Dystonia. In fact, my first notes, I was noting this change in rigid tone. I mean, she was like 35, 37. She was young. And I was noticing that she had asymmetry in her limbs and she had especially some increased tone in her leg and arm 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. Having fully examined Maria's symptoms and concerns, Dr. Sheese initially prescribed a dopamine agent for an enzyme deficiency. She then focused on Maria's spinal imagery due to her asymmetrical reflexes.

So the moment of truth is when I saw how robustly she responded to dopaminergic medicine, replacement of dopamine. 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? So I think she was really frustrated because she

Number one, people are afraid of doctors. They're afraid of taking care of them. Doctors, it's true, we make terrible patients. We don't do what we're told. We overthink, you know, so I think people were intimidated. She's a really good doctor, but that's not fair to her because she still deserves a good exam, a good understanding of what's going on, 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 some level and terrified on others?

I was initially very vindicated and happy. When she said you have Parkinson's, I was like, yeah! It's like, you know, like a celebration until it, you know, settled a few days later. But at first it was like, I knew I was not crazy. I knew that I had something going on. I know that when she was kind of diagnosed with that and actually got on some of the Parkinson's meds, her muscles softened just, you know, like an immediate relief.

that things were doing better. When I started the medicine, even the small amounts initially until we got the 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 years to get an official diagnosis from somebody and get treated. Now imagine what all these people around the world are doing and feeling and dealing with. And in reality, most women take about three to five years to get diagnosed, especially when they're younger.

That's Maria's personality in a nutshell. 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. It was surreal because she's, gosh, a good 20 years younger than I am and we're fast friends and buddies and just this brilliant, professional, loving, compassionate person.

wonderful human being and just saying, Maria, I'm sorry, but we're going to have to work on a medical regimen that keeps you going. Once the weight of that diagnosis hit you, what were your fears?

Well, you know, at first I felt vindicated and then I felt like, well, you know, I've been doing this years. There's so many new advances. We've come a long way. Patients are doing better with the right treatment. We can do this. But then one day we were sitting there at dinner, my husband, my daughter and I, and all of a sudden it just, it hit me is that I have a progressive disease and I know what that disease looks like at the end.

I know what patients go through, the isolation, the troubles, the difficulty. And I just started crying.

I started 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, the languages and enjoy, you know, still going out to the movies and, you know, talking to my friends? Am I going to still be able to practice medicine? 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, there's probably 1.5 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. An epidemic that disproportionately impacts people of Hispanic heritage. The Hispanic community, at least in this part of the world, the U.S., they're at higher risk for developing Parkinson's. They're two times as high risk than any other ethnic group.

And we feel that this is related to agricultural exposure and pesticide-herbicide exposure. Another thing is the disparity in healthcare has a lot to do with a lack of immediate exposure to specialists in the field that could direct people to more immediate care.

Being Hispanic, there's a lot of misinformation in our community. There's a lot of myths. So we have to explain that growing old does not mean that you will have tremors and shakes and fall and be confused, disoriented. So it's not an aging process, that it is actual disease.

After years of suffering symptoms that gradually robbed her of her motor 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.

How would I tell my patients? 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 these years 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. Yes, we don't like this disease. And now, you know, 16 years later, I can tell you how god awful it can be sometimes. But overall, I mean, it's given me so much. So look at the positive side.

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 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? Oh, 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.

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?

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 education and understanding and

positivity and faith and prioritizing what's important in your life. So that's really powerful. I'm proud of Maria just because of who she is, what she's done for humanity, for Parkinson's disease, the person that she's become. And that includes becoming an author.

I went into this medical community to care for Parkinson's patients. So it's given me an opportunity to really get to be part of a global community and get to really, I think in a way, maybe make a greater impact than I did, you know, just being in my office.

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 gal in a red dress on the cover. ♪

I had found a definition for Diva that I really, really loved. And it said that sometimes it's a person that can do extraordinary things with normal capabilities. That's what we want patients to be, that we want them to speak 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. So I think the Parkinson's Diva will, you know, represent that. So we decided to go with that. And I did not know that it was going to start a movement around the world.

Seeing all the positive responses to her first book, Maria was encouraged to write a second book, this time in 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. Being a diva is exemplified in Maria. That's just her. You can still go out, feel good about yourself,

No matter what. 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 would say. And just because you have an illness doesn't mean that's the end of life. And you can still be a diva. You can still flourish and, you know, still wear your crown and your boa feathers if you want. And if you die, you can, you know, just be a diva and do your own thing. So color the world in your own way.

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.org. My name is Maria DeLeon, and I was diagnosed with Parkinson's at a young age.

On next week's episode of Symptomatic, Eliza tries to ignore and brush off her periodically overwhelming GI flare-ups until she's scared they'll threaten her ability to care for her new baby. 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.

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.com. And please don't 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 Breitpacheco. Executive producers are Matt Romano and myself. Our EP of post-production is James Foster. Our producers are Sierra Kaiser and John Irwin. And this episode was researched by Diana Davis.