Sharing his diagnosis, as well as being open about how it was affecting him, wasn’t an easy choice, Fox says. It took about seven years after his diagnosis to disclose it publicly, but once he did, he saw the impact. “I went online and into Parkinson’s chat rooms, and I would go in anonymously, and would ask, ‘What do you think of this Michael Fox thing?’ And they would say, ‘It’s great.’ I would think, ‘You’re celebrating my having Parkinson’s.’ But then I got it, and realized these people were stuck in the rocking chair on the porch for all this time to just whittle away until they can’t move, and never had a part in solving their problems.”
“The more I thought about it, the more I thought it was a privilege, and in a way, a gift,” he says. “It’s a gift that keeps on taking, but if I look at the positive side of it…this is a role that I fell into and I found myself uniquely qualified to fulfill. Now people say, ‘I have what Michael Fox has.’ Parkinson’s patients now have an identity, and they don’t have shame.”
Fox says advances in genetics and the progress in identifying biological markers of Parkinson’s are only the beginning. “I know we’ve done a lot, but we haven’t cured Parkinson’s,” he says. “I’m always pushing and never happy until we get this done. We’ve changed the way people think about the disease, and we know there’s an end, and we’ll find it.”
That requires continuing to build on what the foundation has started so that promising treatments can come to fruition. “I was always a small guy; I was bullied and pushed around, and I would overcome that and push through it. [Parkinson’s] is the biggest bully there is for me. And I’m not just going to let it get its way. We’re going to have a fight and I’m going to get a few punches in. I may get beat up in the long run, but we’ll get it done. I’m a—pardon my language—tough son of a bitch and I’m going to get it done.”
Ultimately, he says, “I’d like to see a world without Parkinson’s, and I think that will happen. I think in 30, 40 years, this will be done. Optimism is a powerful thing.”
