An interview with Rita Botelho Sharing to break Stigma about PD on August 12, 2024.
Biography
I am Rita, a 40-year-old Portuguese product and jewelry designer based in Porto, Portugal. After traveling around the world and living in different countries (Japan, Italy, Switzerland and Germany) I came back to my home country in 2019 where I created my own jewelry brand Piino. Besides managing the brand, I make all jewelry pieces by hand with precious metals and polymer clay, and I also teach how to work with polymer clay through online and in-person workshops.
I was diagnosed with Young Onset Parkinson Disease at the beginning of 2023, caused by the genetic mutation LRRK2. Since then, I became a Parkinson’s advocate by being involved in multiple research projects in the field and by sharing my journey with YOPD on social media.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I am passionate about life, doing the best with what I have in the present moment and helping others along the way. The moment I was diagnosed with YOPD I knew I had to act, sharing my experience with others to break the stigma about Parkinson’s disease commonly known as a disease of the “old people with tremors”. I am neither old nor have tremors and I know that many young people are wrongly diagnosed for many years for lack of knowledge about this complex disease.
How did you become a Parkinson’s advocate?
I started talking about YOPD on my professional Instagram page @atelier_piino which had around 20k followers and then I created my own Instagram page dedicated to share my journey with the disease @yopd_upside_down_. I had the need not just to help others through my experience and spread awareness about YOPD but also to speak up, sharing the ups and downs of my life with YOPD and hopefully finding others like me. I also contacted Parkinson’s Europe that put me in touch with pharmaceutical companies that need PD patients’ experts to help them making their clinical trials more accurate and “patients friendly”.
What changed since you shared your diagnosis publicly?
Because of my Instagram account, I got to know incredible people in the PD community. People like me from all over the world: young with PD, trying to balance the struggles of having PD with an active work and family life. It became a tool to connect with my “tribe” no matter where everyone lives, and it also became a tool to inspire and spread awareness to others who don’t have PD but can relate in many ways with me.
What events do you participate in?
I recently represented PD patients in the London Conference “Patients as Partners”. I spoke in front of a big audience composed mainly of Pharmaceutic companies about my diagnosis and shared the positive impact that my participation on the PROs project of UCB had on my journey. There are still lot barriers that don’t make patients participation in research easy, but the benefits are so huge for all parts that is essential to break those barriers and change the level of trust that physicians and researchers have on patients’ knowledge. Who knows more about PD than the patients who live with it every single day right?
How can someone get in touch? What is your website?
Just go to my Instagram page @yopd_upside_down_ and send me a message.
How can others also become advocates for awareness?
Everyone can be an advocate for awareness at different levels. We can share the word about PD within our little circle or friends and we can go bigger and share it on social media and other public platforms. There are no right or wrong answers, what matters is that we talk about it, give our example, share our experience, show to the world that is possible to live a life with quality with PD and there’s nothing to be ashamed of. PD doesn’t define who we are, and no one should ever feel the need to hide the symptoms from others.
In your opinion what is the key to effective advocacy?
Being a curious person, always willing to learn about PD and being a good communicator. As PD advocate, I do my best to be updated about the latest PD research news and I often exchange experiences with other PD patients. Therefore, I can have a good knowledge about PD that allows me to communicate accurate information in a way that can be understandable by everyone.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I try to exercise every morning when my first Sinemet works the best. I have been doing B1 therapy since October 2023 that includes oral B1, Complex B and Magnesium. I make sure I drink a lot of water and eat enough fruits and vegetables to keep a healthy gut and therefore absorb Levodopa. I am careful about the time I eat proteins and avoid dairy. I try to keep a good social life, and I am part of a YOPD support group.
Why should people who don’t have Parkinson’s care about this?
Parkinson’s is the fastest growing neurological disorder in the world. Everyone should know about the importance of exercising regularly, eating healthy and avoiding all kinds of chemicals.
If everyone knew that PD is not just about tremors there would be more empathy towards people with PD who suffer with terrible non-motor symptoms as depression and there wouldn’t be so many misdiagnoses.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes, my mother has it for many years.
If you had one song that would tell us more about you or represent your life which song, would it be?
I recently watched the Celine Dion documentary where she sings a song called “who I am” by Wyn Starks about the power of accepting who we really are and the freedom and happiness we feel when we stop hiding, pretending and showing to the world our honest selves.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I am a big defender that consistent exercise is very important to keep PD symptoms under control, especially the non-motor symptoms. However, most of us tend to overthink: what is the best exercise for me? Which is the best gym? What is the ideal heart rate to reach? How long should I exercise? I quickly understood that the more I would think about the need to exercise the more barriers I would create to do it. Right now, I just go and do what is the most convenient for me, in terms of time management and comfort. I don’t care if I am doing my best training, if I’m challenging my limits, if I’m exercising long enough or strong enough. I basically go to the closest gym to my house that is already old, doesn’t have the fanciest equipment but everything works, where I can listen to my own playlist without having people bothering me and have a pleasant view when I am on the treadmill. On the weekend I go for a walk/run around my house. I do whatever my body asks, I stop when something doesn’t feel right, and I push myself when it feels great. We are all different and this is not a race! Let’s stop overthinking about exercise and just do it!