One of the big themes I address on this blog is transition. Throughout our lives, we all have to make changes. Some of those changes we choose: to get married, follow new career paths, or move across the country. Sometimes, though, life throws a curveball. It presents us with changes we haven’t chosen. Some of those changes we wouldn’t ever make, given a choice.
Mike and I faced one of those changes last week. After a lot of testing and conversation with doctors, Mike was diagnosed with Parkinson’s Disease.
Our first response to that diagnosis, as you might imagine, was terror. We’d known it was a possibility, given the symptoms Mike was experiencing. But actually having a neurologist say I’m sorry to tell you this is Parkinson’s Disease–that changes everything.
And even so, we’ve managed to remind ourselves that not much has changed. All the symptoms Mike is experiencing now are things he’s been dealing with for some time. He’s started taking meds that have a good record of improving those symptoms for at least 10 years. So it’s entirely possible that he will live with Parkinson’s for a long while before it plays any major part in the way we’re living day to day.
The most frightening thing about Parkinson’s–and, simultaneously, the most encouraging thing about it–is that there’s no typical experience of the disease. Mike is 53, which means he’s just three years past the age at which his diagnosis would be classified as Young Onset. But many younger people have lived with Parkinson’s and beaten the predictions they were given.
For instance, we were inspired by the story of Jimmy Choi, diagnosed at 27 and competing to be an America Ninja Warrior in his 40s. Choi was told he’d be confined to a wheelchair within 15 years of his diagnosis. Instead, he decided to fight back against that future. Watch him compete and you’ll see that he definitely doesn’t need a wheelchair.
And then, of course, there’s actor Michael J. Fox, who started the Michael J. Fox Foundation for Parkinson’s Research after being diagnosed at 29. He’s still living a very productive life at 57. Just as important, his foundation funds a great deal of the current research into finding a cure for Parkinson’s.
I’m trying hard to remember that we’re just at the start of a long journey with this illness. Mike is in Stage 1, which means his symptoms are confined to one side of his body. He’s already taken the initiative to formulate an exercise plan, which research suggests will help to slow the progression of his symptoms. I’m in charge of making sure our kitchen is stocked with foods high in antioxidants, a strategy thought to stave off the degeneration of neurons.
But beyond those things, we’re just trying to keep ourselves informed and do what we can to simplify our lives. At this point, it seems very clear to both of us what’s important and what absolutely isn’t.
Above all, there is simply no time to waste. We’re addressing problems as they arise–and when we can’t, we’re making the choice to forget about them. Bigger fish to fry, as the saying goes.
And, of course, we’re planning differently for the future. There’s never any way of knowing what the years ahead look like, not for any of us–but we now have one fairly clear vision of what they could look like. That’s the one we have to plan for.
If it turns out we’re able to avoid the worst case scenario, fantastic. We’ll be grateful that it never came to pass. But if it does, we will have lived our life in a way that allows us to deal with it as we’ve chosen. Pretending the bad thing won’t ever happen is a strategy that’s been played out on both sides of our extended family. It has never done one bit of good.
The truth is, we’re staring down this curveball with a fair amount of trepidation. But we’re also facing it with a strong sense of resolve. This isn’t the first major life change we’ve dealt with together. And we know, all things considered, it probably won’t be the last.
Recently diagnosed? Learn more about Parkinson’s Disease.
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