An interview with Jean Kaluza, From Drums to Dystonia to Dance to Freeing Brains on August 19, 2024.
Biography
I gave myself dystonia from drumming too much, had to switch professions & became an app designer. When it looked like it was going to take my independence away, I started saving up & quit my office job to dance what I figured would be my last 6 months of movement. Dancing ended up lessening my symptoms to undetectable. Now I’m designing an app that makes integrating healing movement into day-to-day life easy & accessible to anyone open to it.
Can you tell me more about your Advocacy?
It’s called FreeBrain(www.freebrain.me). It’s a game-changing movement platform designed to help folks gain their mobility back. It’s for anyone open to exploring neuroplasticity to treat their neurological conditions such as Parkinson’s, MS, dementia & more using movement. We feature curated programs by specialized coaches, a welcoming community, a daily tracker, a symptoms journal & shared resource library.
What is your passion and how did you get involved in Dystonia’s awareness and hope for a cure?
I was an accidental advocate for dystonia when a video of me playing drums backward went viral. (Neurologists had informed me that I could probably play backward, so I immediately practiced until I could). From there, I tried my best to keep going, but dystonia is progressive, and I eventually had to stop once dystonia took drums completely. I’ve been hiding out since, but suppose this is me attempting to come back, maybe less as an advocate, more selfishly hoping I can also use freeBrain as much as my fellow warriors.
What type of goals do individuals with movement disorders have when seeing your Advocacy?
Well, we’re still looking for our first batch of users, but the folks that are most open to it are usually ready to take ownership of their prognosis. They’ve been to the doctors, have tried all the medications and are ready to face their unpredictable journey by homing in on what it is they CAN control.
What type of training and how long are the programs?
We’re a freemium subscription service with both monthly & annual plans. Think the Spotify of our neurological conditions where you can follow a program you like or browse our library of al a carte follow-along videos whenever & however often you’d like. We also boast a great community & tools like symptom trackers & self-assessments. 1:1 sessions are also available for individually tailored therapy if desired.
What effect can your Advocacy have on an individual with a movement disorder?
Well, one of my fears is coming across as some amateur dancer telling someone really struggling to just do the Hustle & expect a cure. What I will say, is your brain is a marvel that modern-day medicine doesn’t have a great grasp on. Movement & dance has shown about as much promise as the medications out there with the only side effects being better health & some fun. Why not give it a shot?
What would you like to see as a future goal for your Advocacy?
Our first goal is to validate the concept as a viable business. That’s what our pilot is for. If we can get 100 paid subscribers, we will be well on our way to making healing neurological movement accessible to everyone who wants our virtual platform in their pockets & living rooms.
What events do you participate in?
We’re keeping a low profile until we’ve validated our concept. In the future, we look forward to participating in events promoting movement as healing or even hosting our own virtual dance-offs.
How does this also assist the caregivers?
Caregivers are their own level of hero. Right now, we’re hoping freeBrain gives an excuse to connect, dance, & move with their loved ones that they may not have thought to do before. Our future roadmap will include experiences designed specifically for them to make their admirable jobs a little easier.
How can someone get in touch? What is your website?
Twitter: https://x.com/freebrainmoves
Facebook: https://www.facebook.com/people/Free-Brain/61562384062019/
Instagram: https://www.instagram.com/freebrainsmove/
How can others also become advocates for awareness?
I think if you’re reading/listening to this you’re probably more than halfway there. The best a person with a loved one fighting this stuff can do is to keep treating them as they always have, support whatever they decide to & participate in whatever way makes them feel a part of the change they want to see. Just like you, George!
Dystonia awareness.
I’d be remiss to not shout out my fellow musician dystonia warriors. While it usually takes maybe less freedom of mobility away, for a musician facing dystonia, it usually means your deepest passion, music is being stolen from you at what’s probably the height of your career. So to anyone feeling that loss, please know you’re not alone, & it will get better.
In your opinion, what is the key to effective advocacy?
Authenticity. I mean that to say it’s a balancing act between having those days filled with the four-letter words, dark curtains, & tears, but also in the same breath, hey let’s do the Cha-Cha! I bet that will help! These conditions are life-crushing & as much as we all know positivity helps, it can really make people feel unseen or even ashamed, especially if they’re not feeling the same way. I’ve seen the most success from people being real about when it’s hard & keep going anyway.
How can we better fundraise to support a cure for Parkinson’s or other conditions?
This may not be a great question for me as I’m an app designer that has only ever seen CEOs get millions to build duds. I’m more of a believer in grassroots coalitions that are close enough to the people they’re meant to help to know exactly what’s needed to truly help them.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Personally, I dance regularly & keep movement & exercise a core part of my daily regimen. Sleep and diet are non-negotiable for me. I’ve also recently started breathing exercises & they’ve really switched on something great within myself.
Why should people who don’t have Dystonia care about this?
Dystonia is the most popular disorder you’ve never heard of. Not only can you be born with it, but you can also give it to yourself through repetitious movements, or it can be brought on by side effects of medications, or triggered by injuries if your neurons don’t heal the way they should. In extreme cases, the disorder’s spasms can break bones repeatedly throughout a person’s life. It’s considered a symptom of Parkinson’s & the 3rd most common movement disorder after tremors & Parkinson’s. Aside from that, I believe whatever freedom of movement one has is a gift & once you take it for granted, you risk losing it.
Have you had any family members or relatives affected by Parkinson’s disease?
I actually do have a great-aunt with Parkinson’s and an uncle with a bit of dystonia. We’re not blood-related if that’s what you’re asking. My dystonia is considered on-set as I essentially gave dystonia to myself by drumming 8-18 hours a day.
If you had one song that would tell us more about you or represent your life, which song would it be?
Wow. Great question. Probably Leonard Cohen’s Hallelujah. “& even though it all went wrong, I’ll stand before the Lord of song with nothing on my tongue but Hallelujah” – that about covers it.
If you had one final statement or quote you could leave for the Dystonia community, what would it be?
I’m heartbroken for everything movement disorders have taken from us, but I’m honored to meet the person it’s forced you all to become. Let’s support each other in the dark times & get pumped at the future light we’re creating in spite of it.