A learning experience while writing with Parkinson’s

This is Deb. I had the honor of telling her story. She's had PD for years and thinks we should all join trials. They can be as easy as we want them to be.
This is Deb. I had the honor of telling her story. She’s had PD for years and thinks we should all join trials. They can be as easy as we want them to be.

Writing for the Michael J Fox Foundation has been a real learning experience for me.  I mean that in a good way. It challenges all the things I’ve learned, and makes me feel like I’m not as sure in my footing.

It also makes me challenge the way I think.

As a reporter, I’m used to doing things the same way. I have no agenda (I swear!) as I interview people and tell a story. Writing for the Foundation, I’m trying to promote it. I’m trying to get people to care. I want them to read a story — like Roy Roden’s. I want them to believe like he believes, that we can be bigger and better than ourselves. And joining Fox Trial Finder is a way to do that.

I want them to read about Deb Faculak and see just how easy a trial could be. When her daughter sent her a link about Fox Trial Finder, all she had to do was log on and fill out a profile about herself. From there, she found a trial that suited her, and got to take a placebo in a dyskensia trial she really believes was the real deal. Now she just has to wait for the trial to be over to see if she can take the the drug.

But Deb’s point was that trials can be as easy as you want them to be. She did one where she had to keep a diary and travel back and forth to a doctor’s office for tests. She’s also done 23andMe, which is just a cheek swab.

During the course of the interview, Deb said to me: “The only way a drug is going to get on the market is if people are willing to take the time and be a guinea pig.”

Now, I loved the quote. I made it bold in the story, and I made it the headline. I didn’t think twice about it.

But Liz Joyce, who reads my stuff at the Foundation raised a flag that I would have never thought of. The word guinea pig.

It’s so interesting to me because I would have never thought about it. But I have to think like a person who might be on the fence about trials. It’s my job to try and get them to join the fight by telling them stories of other brave people. And if they’re worried about trials and what they entail, hearing the word guinea pig might scare them away.

In the end, I abbreviated the quote to : “The only way a drug is going to get on the market is if people are willing to take the time (and participate in a trial).”

Liz is also really good at taking what I write and adding in the lingo about Trial Finder and how easy the process is. It’s something I’m trying to learn to do on my own, but it still feels foreign to me sometimes. I’m not used to writing to get people to join in on something that might scare them. Nor am I used to writing to promote.

It’s a really fun experience that’s using what I am good at (or at least think I am good at) while pushing me out of my comfort zone. In the end, we all have the same goal: a cure for Parkinson’s. So I can feel a little uncomfortable as I navigate these new waters for now.

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