Meet Tony: Parkinson’s Advocate by Way of Facebook

Facebook and social media has garnered a lot of attention the last handful of years – and largely for negative reasons.

At this point, when you think of Facebook, the things that come to mind are security/privacy breaches, spam, addicted and socially inept kids – and more!

Which is a shame, because its intended use is to bring people closer together and make us feel less lonely – and for any of us who has ever faced a disease diagnosis, that can be among the loneliest feelings.

Cue Tony Garrett of Indiana, who was diagnosed with Parkinson’s Disease nearly 10 years ago, and has used Facebook as a platform to confront the disease head on. 

Parkinson’s disease is a central nervous system disorder affecting movement. It is a progressive disease, meaning that in most cases it will continue to get worse over time. Parkinson’s develops gradually, sometimes starting with a subtle tremor in one of the hands, and then can progress to great stiffness, slurred speech, and even cognitive issues. 

Click here to read more about Parkinson’s!

Tony himself was diagnosed at the age of 31, and recalls his emotions.

I remember I was almost numb to it, it took me a while to soak it in.  Even a few weeks after, it didn’t feel like a big deal until I read into it, and was like ‘woah.’

It is understandable – in a default kind of way – to want to be private about a diagnosis, and Tony (or anyone) could be forgiven if he decided to face this journey quietly. But instead, Tony decided he would be quite open about his fight with Parkinson’s.

I’d describe myself as a laid-back person, and I just wanted to find the best way to share what I was going through; the peaks and valleys.

So in 2011, he created a Facebook page to do just that. And by no means is Tony’s page the polished and professional advocacy page you’d see from an organization or social media influencer – which is refreshing and authentic.

In fact, this is how a portion reads: “My page probably won’t change the world. But it’s something I feel I need to do. Share and spread awareness about this monster millions fight.”

Tony recalls:
When I started my page I did it to help me cope plus I wanted my friends and family to hear it from me and I didn’t want a big rumor mill get started. I’ve always tried my best to be transparent and not just post the good or bad and have just really been honest. 
It’s refreshing to hear a candid and unvarnished account of living with a rare disease. And often, things aren’t sugarcoated:

As one post reads:

It’s been a tough day for me but I’ve never let up and I’ve kept a good attitude.
Staying in a positive state of mind is so important when dealing with Parkinson’s because the disease itself tries so hard to seclude or isolate you from others.
I’ve been through the depression and the apathy and learned from it.

And the response to Tony’s page has surprised even Tony himself!  A turning point came after Robin Williams’s death in 2014. It has been reported that Williams had been diagnosed with Lewy Body Dementia – a rare disease that displayed symptoms similar to Parkinson’s, among others. 

[Robin Williams’s death) really hit home and scared me. I wanted to reassure everyone that I am going to fight this until the end and keep a positive attitude.

Tony didn’t need career social media experts or fancy SEO tricks to get him noticed. His powerful testimony and salt-of-the-earth earnestness was enough to elevate what he saw as a simpler means of communication within his network of friends and families into a source of support for a greater audience.

Since then, Tony has amassed a following and attracted the attention of organizations like the Muhammad Ali Center, 23 and Me, the Michael J. Fox Foundation, as well as individuals with Parkinson’s who were moved by Tony’s musings.

On several occasions Tony has even spoken to Muhammad Ali himself, before he passed away in 2016.

 It’s amazing how I can say he considered me a friend and I’ll always try and carry his never quit attitude.

But what has touched Tony even further is when total strangers reach out to him.

I still have people contacting me – I remember this young girl reached out to me, who was diagnosed. And I was the 3rd person she told! I’ve had dozens of people reach out because of my page, from Italy to Arizona!

One of the things Tony tries to do with his elevated voice is clear up some misconceptions about Parkinson’s, like how it’s not just the hand and head trembling that media usually portrays. 

It’s not just somebody hand shaking, there’s  a lot more to it. I have dystonia on my calves, I have a lot of non-motor symptoms, apathy, depression. A lot of the shaking is actually not Parkinson’s but treatment side effects.

And Tony’s correct! While tremors are one symptom of Parkinson’s, there are many others, including rigid muscles and slowed movement, which are the opposite of what you normally associate with this disease.

Having a good attitude is everything. For Parkinson’s – or for any disease – stress and drama is poison.  (anything to add, quote-wise)?

Tony proves that to make a difference, you don’t need too much. For him, just a Facebook account, candor, and a good attitude can really go a long way. Tony goes as far as to write on his page that he’s an “ordinary person” – and it’s that service-oriented humility that makes him and his voice quite extraordinary in this community.

To check out Tony’s page, click here!


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