Rita Botelho, a 40-year-old PwP from Portugal, was diagnosed with Parkinson’s disease in February 2023 after experiencing motor symptoms for a year. Despite her mother’s history with Parkinson’s, Rita didn’t initially suspect the disease due to the differing symptoms. A turning point came when a physiotherapist suggested a neurological cause, leading to her eventual diagnosis.
Rita found that consistent exercise not only improved her physical condition but also provided a crucial boost in dopamine, enhancing her overall well-being. She also began participating in forest tracks with others, finding solace and motivation in these shared experiences.
She emphasizes the importance of accepting the disease rather than succumbing to denial or self-pity. Her philosophy rejects negative thoughts such as questioning why it happened or blaming herself for her condition. Rita’s message to others in similar situations is clear: you’re not alone. She stresses the importance of community and support groups, which provide invaluable emotional and practical assistance.
First of all, hello. Thank you for this invitation. I’m Rita Botelho. I’m Portuguese. I live in Porto. I’m 40 years old. I was diagnosed almost like one year ago. It was at the end of February, but actually, I started having motor symptoms one year before that date. Everything started because I was dragging my right foot. I was on a trip, and I suddenly started to hear a different kind of sound when I was… It was actually the sound of the steps. I was like, there’s something strange here. And back then, I was having regular tennis lessons. I assumed maybe it was an injury. I mean, it was strange to be an injury because there was no pain. It was just the movement that was slower. So I started going, the first thing I did was go to my family doctor, who prescribed me, like, anti-inflammatories for two weeks. Nothing happened. So, in Portugal, there are free health systems for everyone, for all residents. That’s the first step you take. You don’t go to the private system if everything goes well in the public first. The thing is, like, it was not going well because I was not getting answers about my problem. So I started to go to the private system. First I went to the orthopedic doctor, because, again, I assumed and everyone around me, ah, that must be an injury. I went to the orthopedic doctor and made lots of, how do you call, CT scans of my back because there might have been an issue with the back, but nothing. I mean, I was doing lots of exams, like most of the people with young-onset Parkinson’s disease. I’ve been really, like, going to the doctor to the doctor, doing lots of exams without any answers. But there was a point. I have a neurologist in the family. He’s not a movement disorder specialist, and he’s not a direct family. But I gave him some hints of what I felt, and he said, you really have to go to the neurologist. So I went again to the private system, and she actually made a video. She asked me, can I make a video of you walking? Back then, I had no idea why she was asking me that. And she said I would like to show this to my colleagues from the movement disorders specialization. But that was it. And then she also prescribed me a CT test of my brain. Back then, I was totally ignorant. I went to the neurologist. Even though my mother has had Parkinson’s for many years, it didn’t even cross my mind that I had Parkinson’s, because my mother always had tremors from the beginning. She never tracked her foot. She never, you know, so the symptoms were so different. It really didn’t cross my mind. Then, of course, I did the CT exam. Everything was fine. And I never went back to the appointment of the neurologist.
Instead of to the neurologist, I went to the physiatrist, because I wanted to do physiotherapy. Since I was dragging my foot for almost one year, I started to have low back pain. So I went to physiotherapy. I was two weeks in a physiotherapist, and the physiotherapist was like, I think this is neurologic, because what happened, I was feeling relief one day, and the other day I was exactly the same. He said, I have a feeling and he was, keep saying this. After two weeks, I had a doctor appointment with the doctor, and he said, Rita, I talked with your neurologist because it was all in the same hospital, and you have to go back there because you have symptoms of Parkinsonism. When he said that, that was the first time I heard that, and that was my shock. That was the moment of shock. Back then, I was already going in that direction, but I didn’t want to believe it. From then on, I didn’t hear anything he said to me, because I knew I had Parkinson’s, my mother had Parkinson’s. I started to read some stories of people who had slow movement because I had no idea that was an issue with Parkinson’s or also dragging their feet. Then I knew, and that was the biggest shock. From then on, of course, I made an appointment with the specialists, movement disorders specialist. And I went back to these neurologists, who said, you should have come back sooner because I knew what you had, but I just didn’t want to tell you right away. I was not sure, you know, but, yeah, I didn’t know. So I went there. In Portugal, when you have Parkinson’s, you are directed to the public hospital where the best teams are, and always takes around three, to four months until you get your first appointment. But from then on, you have a whole team taking care of you for free, which is amazing. It’s a huge privilege. But because I was waiting and I just heard Parkinsonism and not you have Parkinson’s. I went to a movement disorder specialist again in the private. So it was like easy to get an appointment. He started to prescribe me Levodopa. It was amazing because at that point, after all the waiting, after the exams, and so on, I was actually already very limited. I didn’t have a balance. I had a hard time with simple things like taking a shower. I could barely drive if it was not automatic gears because I couldn’t lift my right foot fast enough from acceleration to brake. I do jewelry. My right hand started to show because it started with the foot. And then without medication and all the stress of not knowing what I had, in fact, it started to evolve to my right hand. Until the moment I started taking levodopa, I just felt worse and worse. But even when I started taking levodopa, it was like really step by step at first, very low dose. It took a lot of time. It takes a lot of time for the body and the brain to adapt. That’s when I started slowly, very slowly feeling better and feeling with hope, because I kind of lost my hope. I felt like I had to quit my job, you know? I’m dependent, but things turn out very good. I respond very well to levodopa and so far so good.
How did your life change after the diagnosis?
Actually, before I started to feel very limited physically, for instance, I had a seven-year-old daughter, just one daughter, I was taking her to school in the morning every day. It became obvious that I couldn’t do it anymore because in the morning there’s always a bit of stress. You know, hurry up, you have to dress up, have breakfast, and prepare a little lunch. Make things happen. She arrives at exactly that time at school. These moments became so stressful and I felt so stiff, literally, like in the morning, and I was just not managing. So I asked my husband, please take Emma, my daughter’s name, to school in the morning. In the afternoon, I’m much better and I can pick her, so I’m more relaxed. For sure, this happened. But I have to say, for some weeks, I couldn’t drive. Her school, it’s not possible to go on foot, so he had to pick her up and drop her off by himself. I couldn’t do it because I just couldn’t drive. That was obviously very frustrating.
It’s funny because one of the things that I learned, and I learned this because I got to know right away after my first diagnosis, a group that it’s called Young Parkies Portugal. It’s a group that was created some years, fortunately, some years before I was diagnosed. And they’re all people like me, people who are young, who were diagnosed before 40 or 50 even. We have a shed group, so it works, kind of a supportive group, and they do lots of initiatives. I actually went to what they call a boot camp right after I was diagnosed, and I met in person with these people. So I didn’t feel alone, I didn’t feel isolated. I learned from all these people, especially from the best examples in the group, that it’s very important to accept and talk about it and just deal with it. And that’s what I did. Soon after my diagnosis, I talked also with my clients. I even made a video on my Instagram account of my brand at Piino, and I mentioned that I was diagnosed with Parkinson’s. So, I had to change a little bit the way that I work. For instance, back then, I was just making pieces on demand. Imagine I didn’t have a stock, someone ordered earrings, I would just make it. What happened is that back then, I started to feel too much stress, and stress is a trigger for Parkinson’s symptoms, and I couldn’t do it. So I stopped doing that. I told everyone, I just sell what I have in stock. And that was my solution. But what happened is that after some months, when I was adapted to the levodopa, I went back to the old way. So now I’m also doing made-to-order things. I had to temporarily change my work system. I’m very fortunate because I’m the boss of myself. I work alone. I do everything. In a way, I can make my own rules. I know a lot of people are not this fortunate. But actually, by telling everyone, I have, like, more than 20,000 followers on Instagram, there was a kind of compassion, like, warm feedback from my clients. You know, I thought, oh, I’m going to say this, and maybe no one is going to order for me because maybe they will question the quality of the pieces. You know what I mean? Because I’m not fit enough. But no, not at all. I still sold the pieces. The clients were still loyal, the regular clients, especially. I felt very warm feedback. That was actually very good and rewarding because, of course, I was also afraid to, you know, shout to the world, hey, everyone, I have Parkinson’s. I’m just 40 back then, 39. I was a bit afraid but I did it, and I’m very glad I did it. I had the weight on my chest and this weight went away and I felt lighter. I think that’s one of the reasons why it’s recommended for people to talk about it when they have been diagnosed. I know from friends who have Parkinson’s, that some spend years until they say it out loud. They told to their relatives, to their friends, and it’s a heavy weight to carry for years. So I learned with them very soon after being diagnosed. That was very important for me to go on with my life and be mentally healthy. It’s not just about the physical health, it’s the mental health. I think that this was a very important step after the diagnosis.
How do you perceive the gender differences in experiencing Parkinson’s disease?
It actually, well, I can start with that. I think women are more willing to share their feelings compared to men in general, at least from my personal experience. So I think that helped me in a way to go forward. I have to say I’m very fortunate because I live with my husband who shares equally all the household tasks with me. Also, when it comes to taking care of and educating my daughter, we equally share everything. So I don’t feel that way when it comes to that. But I’m the mother. So imagine my daughter is sick. She’s coming to me. You know, mothers are mothers. There’s always this feeling of comfort. When the kids are young, that young, and they have a problem, it’s the mother who gives them comfort. And of course, when I felt the worst when I was not properly medicated, I didn’t have enough energy. I had to sleep longer. You know, she was used to having me in the morning taking care of her. She didn’t have that anymore. So I guess it was also hard for her. But at the same time, I started talking with her about having Parkinson’s since the beginning. So it became like regular talk. It was not like something weird or heavy topic, it just became a daily life topic. So in that way, of course, things change a little bit. But I have to say, physically, there’s also a big difference between men. Because one of my biggest frustrations when I started taking levodopa, was when I realized that for two weeks of each month, levodopa was not having any effect on me, like zero. I was taking the pill and there was no on. This happened during vacations, and I sent a mail to my neurologist and she said, actually, I knew that during the period and before the period, there’s a tendency for the symptoms to get worse. But she never heard back then about the levodopa not having absolutely any effect during this time period. So I started to do my research.
You know, I’m this kind of person who’s like, I don’t take a no for an answer. I felt so frustrated, I started to, you know, Google is amazing, the search. And I found a kind of clinical test made with two siblings in 2014 in the US, where they experienced exactly the same as me. Fertile women, more or less the same age as me, had this issue of taking levodopa and not having any effect from the levodopa during the period and before the period. In these tests they did, they proved that fluctuation, hormonal fluctuations, and specifically the estrogen had a huge effect on the efficiency of the levodopa. And the solution for them was to take the birth control pill with estrogen continuously.
So basically, I forwarded this article to my doctor, and she forwarded this email to my gynecologist, also in the hospital, and they say, give it a try, start taking the birth control pill. I was not taking it and gave it a try. The truth is that it solves the problem just like that. So far, so good. I have an Instagram account where I share some things about my journey with Parkinson’s. I already got two replies from women who read that I was taking birth control pills with estrogen, and they wondered why. They said, oh, in fact, I also feel the same. I have to talk with my neurologist about this. So, there’s not enough data about these issues. Fortunately, it’s becoming a topic. I mean, for her, it was such a big surprise. She’s a woman and she’s very interested in this topic. She wrote a scientific paper about my case to be published in the scientific magazine, Neurology. She asked me about my reports because I wrote everything down. I’m very happy this article is going to be released because hopefully, we’ll help other people if neurologists are aware of these differences.
What self-care practices have you adopted to improve your health that you weren’t doing before?
So, first of all, I was obviously, I mean, let’s say I was lazy before I was diagnosed. I was not taking sports and exercise seriously. The moment, and we all know that doing exercise regularly might be one of the few things that are proven to delay the progression of the disease. So I started doing exercise seriously. And of course, it’s not just because of that reason. It made me feel better immediately. You know, there’s this boost of dopamine. It might not happen right away, but we feel better. So actually moving regularly, it’s very good. Recently, during the winter, I had a sciatic crise. I couldn’t, like, do this kind of running or more intense exercise. I was just walking in the nature. I realized that gives me a lot of pleasure, just getting out of the door, walking in nature, sometimes listening to music that I like, and sometimes just listening to the environment. I also started to do tracks in the woods, in the forest with other people. It’s a kind of volunteer group. You don’t have to pay anything. People just get together and they follow tracks in nature. It’s really nice because there’s a kind of surprise effect because I’m not the one who made the track. I just follow the others. I love nature, and I think it’s a very healthy environment to be in. So, that definitely helps. If I don’t do those walks, I miss them. So I was like, even if it’s half an hour, I’m going get out of the door and just walk. Then, I started to really take care of myself. Even I would say statically, because, when we feel good about ourselves, with our body, our mind is also happy. I don’t do it regularly. I wish I had the budget to do it, but I thought, okay, let’s do a face massage, or, you know, like a body massage. Go to the spa once in a while. I really like those things. So every time I have the money and the time to do it, I do it. And I realized because with this sciatic crisis that I had for, as I told you, rigidity, muscle rigidity is my main symptom. What happened during this winter, with the humidity in the house where I live and the cold, my muscles started to contract, contract, contract. I didn’t do anything against it. I was just doing sports like nothing happened and was just making it worse.
There was a point, where I ended up in the emergency room of the hospital because I was in so much pain. They prescribed me medication. I got better, but after that episode, I realized, this will happen more often because this is a problem that I have. There will be always winter, there will be always cold. So I have to prevent it, I have to find a solution that doesn’t involve medication or drugs. So I tried acupuncture, I tried osteopathy, and I tried hot steam massage. I realized, and that’s why it’s so important to track what works best for us because it might not work for others. In my case, in all these treatments, every time there was some kind of machine involved, for instance, acupuncture, some people without Parkinson’s have muscle contractions. There’s a treatment that it’s made with the electrical tension, with the needles. Some people find this the best medicine for them. For me, it was the worst, because everything that it’s about not relaxing, not making me feel comfortable, I get the opposite effect. I get even more rigid, even more contracted. So this is something I learned. At the end of the day, I understood that a simple message with someone that I trust, with warm hands and hot steam in the area, especially on the lower back, is the best for me. So I made a kind of a deal with the masseuse that I know. I told her, I explained everything. I said, in case my back starts to hurt, can I call you? I kind of made a deal because I assumed this was going to happen many times. Can I call you and you give me a half an hour’s massage with this team? And she agreed. I have done this already, twice. I didn’t have to take medication because it was right away. This happens normally when I wake up. I wake up and I feel, and if I don’t do anything, it gets worse and worse. In the end, there’s no other way than medication. But now I know I have this plan. I wake up, I feel the rigidity, I feel the pain. I call the masseuse. I have the massage the day after. I feel much better. So it works for me.
What advice do you have for someone recently diagnosed with Parkinson’s?
I would say accepting the disease is the most important thing. If you’re saying no, it cannot be, I’m too young, why did this happen to me, I don’t deserve it… This doesn’t lead you anywhere. That’s it. It just brings negativities, even a sense of guilt. What did I do? Did I drink or eat the wrong things? I had a stressful life. It’s all my fault. These are thoughts that pass through so many people’s heads when they are recently diagnosed. Honestly, these thoughts, don’t lead you anywhere. For instance, I have a genetic form of Parkinson’s. I did a genetic test. I have the LRRK2 mutation. My mother also has it. It’s not her fault. It’s not my fault. It’s just how things are. Fortunately, I met a wonderful group of people in Young Parkies Portugal. Also, since I started my Instagram account, I also met some really wonderful people who also have other Instagram accounts where they share tips, their knowledge, and their positive attitudes. So we are not alone. And this is a very important message. We are not alone. It’s exceptional to be that young and have Parkinson’s. But in fact, when we look around the world, there are thousands of people like us. There are so many things going on also in the research field and supportive groups and associations that are working to help us. We really have to be aware of that. But if you don’t accept the disease, you also don’t have the will to look for these tools, to even the apps. You have to be comfortable with the disease to be able to help yourself, to find the tools to help yourself. And so that’s definitely the number one; accepting, talking with people, being comfortable with it, finding other people, so you don’t feel alone, never isolating yourself. Talk with your friends, and keep up with your social life. It’s super important. Mental health with Parkinson’s is so, so important. Let’s not forget that the caretakers, the partners, the family around, sometimes they also have to know a little bit about this. For instance, I kind of convinced my husband to come with me to the appointments. He read a book, he’s German. He read a book in German about someone who’s very famous in Germany and who talks about his experience with Parkinson’s and why this is so important to talk with the people who are around you. Because, for instance, depression, it’s one of the biggest symptoms of Parkinson’s, and people are not very aware of it. People who suffer from depression are not the ones who are going to say, hey, I have depression, I need help. Normally, it’s the people who are around this person. So there must be awareness. People should talk with each other. I don’t know how many times I talked about this with my husband. So he’s very aware because he knows if it hits me, I’m not going to be the one acknowledging it. It has to be him. He has to know the signs. I think it’s very important to talk about it. Talk about it so you can help yourself and people around can also help you in case you need it.
For my case, like I have to say, it’s a life-changing diagnosis, yes. But I have to say, and as I talk with people who’ve been living a good life quality and have had Parkinson’s for many years, they all have something in common. They are very positive. They think outside of the box. They just don’t go to the neurology and say yes to everything and get out of there with no questions, no. They are people who inform themselves, who are updated about the newest research results, about diet, about lifestyle. They are very active with their jobs. I’ve been learning with them. If you don’t accept, if you don’t get out of your shell, you will never get to know these amazing people who also have Parkinson’s and live a reasonable, normal life because it’s a manageable disease. I think the relationship with the neurologist is also very important not to have this sense that he’s the boss and you have to accept everything. I am very lucky with my neurologist. As I mentioned, my neurologist wrote a scientific article because of my reports when it came to hormonal fluctuations. So she also learns with me and she wants to hear about me. I also do kind of outside-of-the-box therapy with B1 vitamin, and she cannot recommend it, obviously, a neurologist, but she’s aware and she likes to hear I feel better. She wants me to report to her every step of the way of this therapy because she wants to be informed. Who knows? Maybe in some years, there will be more data about this and she will know more about it because she has a patient who did it. I think this is very important. I also feel very supported by my neurologist. I think that’s very important because she will follow me along the way, has to deal with me, be patient.
