An interview with Perry Ojeda: Thriving with Parkinson’s
Biography
PERRY OJEDA is a professional actor that has been seen on Broadway (ON THE TOWN, BLOOD BROTHERS, IMAGINARY FREINDS), London’s West End (DOLLY WEST’S KITCHEN), national tours (CAMELOT and JEKYLL & HYDE) as well as countless US regional theaters, most recently Utah Shakespeare Festival, South Coast Rep and Orlando Shakespeare Theater. He has performed on cruise ships, theme parks, cabarets and symphony concerts around the world as well in Television & Film. Some of his credits include the Disney Jr. show IMAGINATION MOVERS and he’s the original singing voice of Nina’s Father on COCOMELON. He’s been seen in Hallmark’s Christmas movie A ROYAL CHRISTMAS BALL, WHY WOMEN KILL on Paramount+ and Lifetime’s MY ESCORT BEST FRIEND. Diagnosed with Parkinson’s Disease in 2023, Perry now spends much of his time advocating for those living with chronic illness.
Please tell me a little about your background.
Born and raised in Adrian, Michigan. A graduate of Interlochen Arts Academy and the University of Michigan Musical Theater Program. I have spent the first three and half decades of my adult life working as a journeyman actor. I used my body daily as a professional athlete might, with singing, dancing and acting. The challenge of Parkinson’s is that I am slowly losing command of my instrument as I lose command over my motor functions.
Can you tell me more about your Advocacy?
Tragically, a dear professional colleague and friend of mine, Aaron Lazar, was diagnosed with ALS about the same time I was diagnosed with Parkinson’s. Aaron works tirelessly to raise awareness as well as fund raise for ALS charitable organizations and education. I’m inspired by Aaron to do what I can to follow his example and to do my part for Parkinson’s Disease.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
The thing I love most in the world is Broadway musicals and singing. I thought living with Parkinson’s meant I had to give that up. Instead, I’m learning to live with the disease and slow the progression and be a living example of managing in the face of change.
What type of goals does individuals with Parkinson’s have when working with you?
I consider my most important duty is to listen. So many people living with chronic illness are dismissed or even silenced. Often with early stage Parkinson’s, many people can hide their symptoms easily and even their loved ones don’t know that they’re struggling. I hope that by being public about my diagnosis and struggle with PD, others will feel comfortable to tell their stories as well.
What type of training and how long are the programs?
My focus at the moment is Social Media: TicTok, Instagram, Youtube & Facebook. I’m trying to keep things short, 1-2 minutes, to spark awareness and conversation.
What effect can your Advocacy have on an individual with Parkinson’s?
My goal is twofold: 1. To Communicate that those of us living with PD are EVERYWHERE! 2. We can connect with each other! TOGETHER WE ARE STRONGER.
What would you like to see as a future goal for your Advocacy?
I’m meeting more and more folks with PD. We are LEGION. With PD affecting so many, WE MUST TAKE ACTION. We must be relentless in advocating for ourselves, our caretakers and our needs. I would love to see even more conversations about living and thriving with Parkinson’s Disease.
What events do you participate in?
I attend twice monthly support group for LGBTQ+ living with PD through the Michael J. Fox Foundation. I also participate, monitor and respond to the many I engage with on my Social Media Platforms.
How does this also assist the caregivers?
I can only imagine how isolating caregiving can be for those who are looking after loved ones living with PD. I hope my community building gives caregivers a place to belong and connect with one another.
How can someone get in touch? What is your website?
I’m @perryojeda on Instagram, Facebook & Youtube. I’m @perry.ojeda on TikTok.
How can others also become advocates for awareness?
TALK ABOUT AND SHARE YOUR EXPERIENCE!
If you could add any questions to this interview that you may want others to learn about, what would the question(s) be?
How can we be a little kinder to one another? If we take a breath, we can all find common ground. Let’s make our time with each other, together, and be as kind as possible.
In your opinion what is the key to effective advocacy?
COMMUNICATION. Setting clear goals. Celebrating small victories. Sometimes the best you can do is get someone to think. Change someone’s mind and you change the world.
How can we better fundraise to support a cure for Parkinson’s?
Many folks said to me when I was first diagnosed, “Don’t you just take a pill? Doesn’t that make it better?” If only! PD affects MILLIONS. Still countless others are living undiagnosed. With this disease taking its mark on so many, we should put as many resources as we’re able to advocate, to raise funds and raise awareness.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I keep a strict Plant-based Whole Food approach to my diet. I also exercise and try to sleep on a regular schedule.
I study voice with a teacher for professional singers that offers a “brain-based” approach to singing that mitigates my Parkinson’s symptoms. (His book and videos are available online at https://thesingingathlete.com) Two of my favorite things to do is sing everyday as well as march in rhythm to a metronome. Following a rhythm HELPS IMMENSELY. It’s the thing that I believe has slowed my progression almost more than anything else.
I also have invested in wellness devices from developers in both the States and the UK, respectively REZZIMAX and BEECH BAND. These vibrating devices also seem to help mitigate the pain and fatigue often associated with the motor symptoms of PD.
Why should people who don’t have Parkinson’s care about this?
There are more than a million Americans living with the disease. Chances are, you know someone living with PD. It affects us all.
Have you had any family members or relatives affected by Parkinson’s disease?
I’m the first in my family that I know of to be diagnosed with Parkinson’s’.
If you had one song that would tell us more about you or represent your life, which song would it be?
“The Impossible Dream” from the musical MAN OF LA MANCHA. Never give up on your dreams.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I feel more alive and more seen than I have ever felt in my life. I can’t say I’m grateful to have Parkinson’s Disease, but I am grateful for the perspective I gained from having it. I’m a better man. A kinder man. Because I live and thrive with Parkinson’s Disease.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George