#ThisIsMyJourney Chapter 13 – Maria de Leon’s Parkinson’s Journey

Maria de Leon is a neurologist specializing in Parkinson's disease. Her journey with PD began as a caregiver to her grandmother. Diagnosed in her 30s after three years of uncertainty and suspicion, Maria has lived with Parkinson's for 17 years. Maria adeptly balances the challenges of being a doctor, PWP, mother, and wife at the same time. Despite initial challenges in obtaining a diagnosis, she persisted, advocating for herself amidst skepticism from others.

As a Hispanic woman, Maria emphasizes the importance of education and empowerment for those dealing with Parkinson's disease, particularly within minority communities. She encourages individuals to seek knowledge about the disease, understand its symptoms, and discern what is significant. Maria’s resilience shines through as she embraces her emotions and experiences, recognizing that while Parkinson's brings limitations, it doesn't define her.

Can you share with us your journey with Parkinson’s disease? How & when were you diagnosed?

Hi, good morning or afternoon all the way from Texas to my new friends from Turkey. Thank you for having me. I'm Maria de Leon and I am a neurologist, Parkinson's specialist by profession. I have been a caregiver to my grandmother who has Parkinson's and then I developed Parkinson's at a young age in my 30s. So I've been living with Parkinson's disease for 17 years. I've been learning a lot from what it is like to be a chronically ill woman and patient and mother and wife and it's been a journey. I am glad that has brought me to people like you guys, and is connecting me to a lot of people in the world. I'm really thankful for that part. So, thank you for having me here.

Could you compare your experiences with Parkinson's as a patient, specialist, and caregiver?

I always said that I thought I was a pretty good doctor. I thought I was pretty good at diagnosing and relating to my patients and seeing the needs of the Parkinson's Community until I had my grandmother to take care of. I realized her and her stages, how much burden it took on the caregivers, on the loved ones, even when you have all the resources. I was working and I had help during the day but I took care of her at night and I took care of her on the weekends. Without my husband's help, I wouldn't have been able to do this. I mean it was a 24-hour, seven-day, care constant, emotional and financial and straining relationships when you're working and you have a toddler and you have a kid and you have an elderly person to care for and they’re psychotic. You go to work and they're falling, you come home and they're falling and they’re psychotic. So, it's like a vicious cycle and it really does dwell on you even though I would do it again in a heartbeat. I loved the time that I got to spend with her. It really brought us together.

When she passed away, it was kind of a sigh of relief because you're so exhausted. You're so drained emotionally, especially when they get confused and they get disoriented. They start sometimes blaming you because they feel like you keeping them hostage or you don't let them see other people. You don't take them out or just seeing them, had to feed or had to be there, and so it's really hard. I started recognizing in my patient’s families, this kind of stress is a kind of, mental anguish. In this kind of frustration, you feel like you want to put them away but at the same time you’re torn. I did that with my grandmother for one week. I was so exhausted. I needed to sleep. My husband needed to go away to see his family and I thought I would put her in one of the nursing homes as respite, to help me just to get a little bit of rest myself.

What I learned is that I spent every day over there in the nursing home anyway, because she got more confused, more psychotic, more disoriented, and unhappy and I had to be there anyway every day. So, it gave me a little bit of risk because I didn't have people here in my house all the time, but emotionally I couldn't really let go. Whether they're at home or in a nursing home, you still have that emotional impact. You still have that constant pool and connection. That was something that I could then talk to my patient's family about, having time for themselves, about being able to go and then leave them for a little bit and have other people help, and sometimes just a shoulder to cry because you're so tired. You're so exhausted. You just want to talk to somebody. That was an experience and sometimes you realize that when you go to the doctor, everybody's so focused on the patient, but nobody talks to the family about, ‘’Hey, what's going on? Are you okay? Are you sleeping? Do you need anything? Is somebody helping you?’’. That was something that really was eye-opening. When I developed the disease initially, being a young woman it was really hard because everyone thought,  ‘’How can a young woman have this? She's Hispanic. She is only 30. Why is she saying that she has the symptoms?’’. Of course, being young also didn't have the typical [symptoms]. I had some tremors and I still have some tremors but they're not my major part. I still have very minor tremors even after all these years.

So everybody was saying,  ‘’You're not shaking, so you can't have Parkinson's.’’. I had a lot of fatigue and I had a lot of visual field defects which was not common at that time. And so of course everybody thought and even myself being a specialist thought,  ‘’This is not something I usually see with Parkinson's; pain and fatigue and visual problems’’. So even I thought we have to look at other things. It's been three years of going to doctors trying to find the diagnosis and seeing every specialist. Everybody says, ‘’There's nothing wrong with you. You just need to go back to work, just take care of your patients. You're just depressed, you're just sad’’. That was very difficult and eye-opening. Here I was a woman who was a specialist and still, when it came to me being treated as a patient, I was treated, no different than anybody else. Just a minority woman, Hispanic, young and they said ‘’You can't have this. You’re just tired, you’re just fatigued, you need a psychiatrist’’. That was very hard. Like I said, it took three years to get diagnosed and that was eye-opening.

During those three years, I suffered a lot with my family, and with my patients, trying to keep going and do things while I was having issues. I always say that being a patient and being a doctor, are two opposing polls. On the one hand, I understand exactly what a doctor needs, and what's important. You want to make sure that you're not gonna fall and break a hip, you're not gonna choke and have pneumonia, end up in the hospital. But as a patient, I want to make sure that I can do my nails, that I can do my hair, that I can crack an egg, that I can take care of my daughter, and clean the house. Nobody ever asked that. I can drive my daughter to school, I can do those kinds of things. It's very important what I started seeing as a patient. I always say the patients are the most impatient. We're not patient, when you're sick and hurting you want somebody to listen. You want somebody to take care of you now and you don't want to wait. I mean as a doctor, I know that you're gonna do tests and you gotta wait a week, you gotta see what goes on the differential.

I understand that I am a physician. But at the same time, when you're hurting and you can't crack an egg, you can't dress yourself, you can't pull your underwear. You can't pull your pants up. You're like, okay, I'm doing this to be over, waiting a week or two weeks to see the doctor or for the medicines to kick in, that can be very frustrating. Sometimes you just feel like, you're so vulnerable and you're wearing all your emotions on your sleeves. You go to see a doctor and they say ‘’What's wrong with you? Why can't you get it together?’’. I've been getting it together. It's just that now I just can't do it anymore. So, it's hard sometimes. I think women are more emotional in that regard especially when we have hormonal issues. We tend to be a little bit more sensitive to pain, to fatigue, to sleep disturbances. I've discovered that having periods really worsens the symptoms. That's one of the things that we've been working on, trying to recognize how we can improve, how we can change that, and why that is. It's been a journey. 

How did you manage uncertainty during the three-year diagnosis process?

Usually, it takes three to five years for women to get diagnosed. Especially if they're young and especially if they’re minorities. It takes longer, even when they see the same doctors. I saw specialists and a Parkinson's specialist and I was told that I don't have it. It's funny because I knew in my heart of hearts that I had Parkinson's, especially with my grandmother and everything. I could have just very well started taking medicine myself, knowing that that's what I had. But I really try to be a good doctor, a good patient, comply and go see everybody and not start any treatment. So, I suffer for three years. After a few years, it really started to wear on me emotionally. Because everybody kept saying, ‘’There's nothing wrong with you. You’re just depressed. You're just tired. Maybe you need to see a psychiatrist’’. I started to wonder if maybe it is in my head. Maybe, something was not right, but I kept thinking I knew myself and I knew something was not right. My employees kept saying, ‘’You're not acting like yourself’’. Working with me for 10 years, then you will know the kind of doctor, what kind of person I was like.

They could tell there was a difference in my mood and in my thinking, even my patience. I started to be so irritable because one, I was in so much pain and two, it was very hard to multitask. Being a doctor, you have 20 million things going on all the time. Especially as a neurologist, I think more so because you're dealing with people who are already very compromised. They're falling, they're seizing, they're having strokes. I mean I continuously had the firefighters in my office and ambulance because people were sick. When you're not feeling well yourself and you have to handle all these things, it really put me on edge. I was very irritable and I'm a very people person and very social. I always like to talk to my patients and hug them. They'll come in and say, ‘’We don't mind waiting because we were gonna talk to you and hug you and kiss you’’ and that was great. But after a while, I didn't want to deal with anybody. I would just like ‘’Bye!’’, you know. They're like, ‘’What's wrong? We came and you didn't hug us today.

You didn't ask about our children. You didn't ask…’’. It's like ‘’I'm so tired. I just didn't want to deal with anybody. I just want to come home and get under the covers’’. It was hard because I had a three-year-old that I had to deal with. Somebody that needed their mom and wanted to play and listen and I was exhausted. So I finally called one of my good friends who's a neurologist and I told her. I don't know why it took me so long to go see her. I should have started with her initially. I said, ‘’I know something's wrong with me. I know it's neurological. I think it's Parkinson's but you tell me. If you think that I just need a psychiatrist, that's what I need to do. Because I can't live like this’’. She just looked at me. She's known me forever. She was one of my mentors. She's known me since I was a resident so she knows who I am. She took one look at me. She said, ‘’Maria, you are exhausted. You look like you're just, worn out and not doing well’’. I said ‘’I just feel like I'm gonna break and exhausted’’.

After all the tests and everything, she's saying, ‘’You have Parkinson's. You have it in your brain, but not like you think’’. I was so happy that she said you have Parkinson's just because I finally got a diagnosis. I was like, okay God, I'm not crazy. I knew there was something wrong, I started the treatment. Then of course comes ‘’Oh my God, I have Parkinson's’’ but the first thing was like, ‘’Thank God, I have something. I know. I was not crazy’’. That's kind of what happened.

How did you balance Parkinson's, motherhood, and your career in neurology?

Initially, I was like, ‘’Yes. I have Parkinson's. Okay, we got this. I know how to treat Parkinson's. I've treated lots of patients. I treated my grandmother, like I could do this. There are lots of new treatments, and people live well better with it than they did, 10, 15 years ago’’. I was very optimistic. Then it kind of hits you because you still realize that it is a progressive disease and it is something that maybe your kids are gonna have, especially since I have a family history. I remember sitting one day at dinner with my husband and all of a sudden I lost it. I just started crying over dinner like ‘’Oh my God, I have Parkinson's and I don't know if we're ever going to be able to do what we wanted to do. Am I still gonna be able to be a doctor? Am I going to be able to be there for my daughter?’’. I just kind of lost in there which is very normal and I encourage patients to do. I mean it's a very normal reaction. But then you kind of have to get up and put your boots on and embrace it and decide that I can do this, but then the hard part came. Because I thought, again since I was a doctor, I know this disease, we're friends. I've been dealing with this forever. I trained in this. I know how to manage it. I know the medicines. Then, I didn't expect that just because I knew the medications didn't mean that my body was gonna agree with them. So then came trying to deal with taking medicines and dealing with side effects and still being able to function as a doctor and being able to function as a mother and being able to function as a wife.

I had the board start questioning me whether I was competent because now I had a disease, because I disclosed to them that I was sick, because of my insurance liability. I didn't want anything to happen and then somebody said ‘’She's got Parkinson’s’’. But then, they started questioning my mental capabilities. It was like a battle I did not expect. I thought that my community, health professionals would understand that this is not something that implicates your cognitive function. Somehow, it was thrown into ‘’Is she competent? Is she able to manage?’’. That was a whole other battle that I had to face, dealing with that and managing medicines. For a while, the medications made me so sleepy to the point that I couldn't drive. Even though I finally got the diagnosis, for a while, I didn't take any medicine because I couldn't function otherwise at work or I only took it on the weekends. I couldn't drive at night. I couldn't see the patients because I was so sleepy. I was falling behind the wheel. So for a year, I could not drive and thank God for my staff and thank God for my friends. Because they're the ones who help me take care of my daughter and help me take me to work because I was not able to drive because I was falling asleep. So this whole idea that I knew how to take care of Parkinson's and I was a specialist and I was an expert, suddenly when it came to me, it was like everything was out there.

It really took a good another two to three years to find the right combination of medicines that helped me function, go to where I could be myself, and function. I’ll be passing out and I'll be falling asleep, but not be throwing up and having all the dizziness or little blood pressure. That was really eye-opening too. Being a patient is completely different. You go to the doctor, they say you have a disease, and here's this medicine and we'll see you in three to six months. But you may not even be able to take the medicine. You don't know what to do. Fortunately, I'm a specialist and I'm a physician. So I kind of knew how to troubleshoot some of the things but yet still, it took me two to three years to get me squared away. Imagine somebody that doesn't know that this is a side effect or this is a problem and who do I call and when do I go to the doctor? That's been part of my work, trying to advocate not only to get an early diagnosis for women, to be aware that women can have it too and how they look different but also just because you have a diagnosis and we have all these treatments doesn't mean that everybody's gonna tolerate it. You do have to give time to adjust and to find the right combination. Unfortunately, it’s not just as easy as here's this pill and you're gonna be fine for the next 10 years. There is a lot of give and take, a lot of back and forth that is hard if you're a mom.

My doctor was three, or four hours away. I had to go to my doctor, three hours away and I have a child. So, when she went to school it's like, ‘’How am I going to take her to school? How am I going to get back in time to pick her up from school?’’. All of that becomes a big problem and that's why I talked about this technology. One thing that we got to experience with the epidemic was that we got some telehealth but a lot of places went away after the pandemic. But it really does help people who have chronic illnesses, have children or have jobs that can't take off a whole day. They have to provide for the family. So you need to have access to the care to be able to function and do well.

What tips would you offer PwP advocating for themselves in managing their care?

I recommend people to get knowledge, to learn about the disease, and to find the tools. What is Parkinson's? What are the symptoms? What really is important and what is not important? What are the side effects of medications? Be empowered to speak up, especially in the minority community. The Hispanic Community here in the States, still even today, a lot of people would not ask the doctors questions. I encourage people to ask questions if you don't understand the terminology. It's a whole new language of medicine just like being a lawyer. Have somebody that can help you. If you don't understand it, bring a friend, bring a little recorder, write down notes so that you can then discover what it is you have. Ask doctors, your health care staff: Can I call you back if I have any questions? What am I expecting? What is that if I take this medicine, what is it doing? How long is it going to work? What if it doesn’t work? Who do I call? It's really empowering for you to speak up and ask for yourself. That's how you learn and can take care of yourself. It starts with self-love because you have to put boundaries for you. You have to take care of yourself. It is very hard for a doctor who is always the caregiver to learn to ask for help and to learn to take care of herself and put her needs. You have to realize that if you're a mom, you're a wife and you have a job and if you’re not well, all the people that depend on you cannot be well. So, you have to take care of you. My daughter would not be well if I was sick.

Who would take care of her? So I had to learn to ask for help which was hard because you're supposed to be strong and independent. Then ask the doctor, ‘’What if I can't do this? What other options do I have? What are the treatments are there? What can we do? When can we change it?’’. Just ask and not just be ‘’I'll wait till my next appointment in six months and suffer’’. Unfortunately, we do have a lot of treatments but it's a lot of trial and error. Everybody's different and it's a combination sometimes. It's not a particular medicine but it's a combination that really works or doesn't work. Sometimes one pill can throw everything into the mix and make everything bad. Sometimes it can make it all better. It’s just really having to trust your doctor. Sometimes I see patients who go from doctor to doctor frustrated because they're like, ‘’I got sick and it didn't work’’. It's a relationship like everything else. It’s like when you meet a friend, you don't become best friends overnight. You kind of get to know each other. It's the same thing living with the disease and it's the same thing being with your doctor.

What does an ideal relationship between the healthcare team and people with Parkinson's entail?

It's a complex disease and it really needs multiple disciplines to be able to treat the patient. I really like it to be under one roof, one person to be kind of the coach of everything. Because unfortunately, what I see happening a lot is that you have the neurologist on the one hand and then you go to a GI doctor or somebody else and they have no idea what Parkinson's is. They have no idea what you're dealing with, or what Parkinson's medicines are. They try to manage the GI symptoms in isolation, but they're not really taking into account the whole thing. It’s the same thing with sometimes going to a physical therapist or occupational therapy. I think it'd be good to have a home health provider who can coordinate all the care, who can manage the GI problems, the physical therapy and the nursing care, and also the social work problems. Because people need help with their kids, with getting their medicines, with transportation. Those are things that we don't really focus on a lot. Like myself now, 17 years into the disease, it is getting harder and harder for me to travel those three hours. Because a lot of times I'm not well.

When I get down I get down for weeks like you, we've been trying to schedule this meeting. I'm not able to drive and go even though I need a doctor. I need my doctor to adjust. Fortunately, I'm a physician and I can manage myself but a lot of people don't have that. They need to be able to have care. My patients used to always tell me, I would say ‘’You didn't come in for your appointment’’ and they would say, ‘’It's because I was sick’’. I would not understand that. I would say ‘’That's when you need to see me, right?’’ Now I understand because when you're sick with a neurological problem or even any other disease; when you have the flu or whatever, you can't get out of bed. You’re throwing up, you're busy, you're fainting, you can't get dressed much less drive. So, how can you go to the doctor when you need to? This is when we need that technology. This is when we need that home health. This is when we need those experts to come into the house and say ‘’Let's do your blood work. Let's do your vitals. Let's make sure you're not dehydrated. Let's get you on antibiotics or whatever you need’’.

That's what's missing in neurology. That's what missing in Parkinson's. So when you get so sick and get down, especially as you progress down the stages, it's harder to go in. It's harder to keep your visits but nobody's trying to say ‘’Hey, what's going on? Are you falling? Are you not driving? Let's send somebody out to help’’. That's what we need. I think that that's where the link is missing. If you can do something like that, where you can say ‘’Hey we need to find out if you're anemic because you're B12 is so little from Parkinson's. Your vitamin D is so low’’. We need to be able to fix that and treat it instead of just saying ‘’She can come to the appointment. That's it’’. We're saying, which I hate, ‘’You didn't come in so you must be non-compliant’’. I sometimes hear it when I go to my doctors. I have doctors for almost every specialty because of the complexity of the disease.

Sometimes it’s one thing and sometimes it’s another. So I spend a lot of time with one doctor for a while and when I go back to another doctor, they say ‘’You didn't do all the blood work I asked’’. I say, ‘’I did but I did it with somebody else, you just need to get it’’. And they don't like that. So, they're asking you to repeat things when you are already tired, you're exhausted. You have no money and you're being poked and prodded. You should be able to communicate. They give you this look like you didn't follow up so you must not care about your health. It's like, ‘’Can I tell you what I've been through? I've been in the hospital for the last three weeks’’. Sometimes people are discarded as non-compliant or not caring when they are caring. They're just living one day at a time trying to survive and trying to manage a disease. Somebody needs to be able to put it all together and say ‘’Look, this is what's been going on and it’s not that they're not trying. How can we help her or help him, do the things that are going to get her or him better, to be functioning in society, to be able to continue working or being able to continue being a parent or whatever?’’

What inspired your books, and what can we expect from your upcoming summer release?

I've read three other books and I wanted to write something about faith. Because I think faith is one of the reasons that I do so well and I'm able to continue and have a positive attitude despite all the craziness, that comes with living with a disease. So, I started to write stories about, my stories of the things that have happened to me and helped me become a better advocate. Then it turned out that I was basically telling the story of how I became who I am, from the beginning. It's interesting. I'm not gonna give it away how I became a doctor, how I became a Parkinson’s specialist, and all the things that I had to endure to be a doctor, being a woman, being Hispanic. That's really helped me to figure out that we needed to empower women not just in medicine but also women with the disease, women in general. Power them to be stronger. They are stronger. They are beautiful. They have it in them to speak up, to stand up. We need to stand together, united.

So, I started to write this book and it's going to be called ‘’Making in the Parkinson's Diva’’, how my whole story has evolved till now and my dealings with the disease in hopes that it will inspire people to continue fighting, to not give up and maybe give them some faith. Especially in this world where sometimes seems like, no hope is left. There is still hope that we still can stand up and believe in something even when you have a disease and have all these struggles. You can still make something beautiful, and keep going. Hopefully, it'll be out in the summer, ‘’Making in the Parkinson's Diva: The Journey, The Life and The Faith’’. [I’ll] try to inspire people. It’s not medical. It's just my story but it will give some insights into all the things that we talked about being an advocate and advocate for women in Parkinson's.

What advice do you have for someone recently diagnosed with Parkinson's?

It's okay to cry. It’s okay to accept your emotions. Because a part of you is lost but you have to get up and embrace the disease with all your uniqueness, your talents, your gifts. The one constant in life is that it's constantly changing. Nothing stays forever. So you can't really dwell on  ‘’Oh, I’ve lost something’’. We just have to make the best of what we have. I'm a testament to that you can have a full life, exciting life living with a disease. Yes, it is limited in some ways. Yes, it is harder. Yes, there's gonna be days you just want to cry and stay under the bed and not come out. It's okay to see that but it's not okay to just let those fears take over and be paralyzed and stay there forever. You have to get up and remember who you are that you've overcome a lot.

You will overcome this too and nothing lasts forever. So, it will change. There are lots of treatments. The one thing that always keeps me going is faith and two is that I've been in this field for 30 years. When I started this neurology everyone laughed at me because they thought ‘’There’s nothing new in neurology, what are you gonna do?’’. Since then, it's been the decade of the brain. We have all these treatments. So we have a lot of new discoveries, a lot of new treatments. Yes, we don't have a cure yet but life can be better. I think that we will continue to improve. So every time you feel like you want to give up, just think there's something else around the corner that's gonna make you better, that's gonna help, hopefully help your children and your grandchildren, maybe even a cure.