Simon Says...Trial and Error

One thing you get used to very fast after you’ve been diagnosed with PD, and that’s how often you’ll hear about a drug or device trial that’s going to be a “game changer” (my least favorite phrase which is why I put it between “quarantine” quotes). The reasons for the torrent of “game changers” that turn out not to be “game changers” is that journalists and headline writers don’t get many clicks on their articles by touting their scoops as anything less than a “game changer”. (Enough with the “game changers”). It’s a natural journalistic impulse to make your story the big one on a given day, but it doesn’t add much in the way of perspective. Result: We’re all living in a perpetual world of about to be breakthroughs.

The truth of the matter is that in medical research, especially in a layered, complex, multi-faceted disease like PD, it most often takes a long time and many researchers to go from grinding trial to proven reality via an awful lot of wrong turns and dead ends along the way. And when I say a long time, I’m thinking up to decades.

So if you’ve got diagnosed PD now, which actually means you’ve had the disease for a number of years before it became detectable, you should train yourself to focus on the new medical developments that are in midflight, rather than hot off the presses. That’s not to say that the advances in care that are down the line can’t come to fruition faster than expected, but more that it’s at the very least, unlikely.

The search for a breakthrough on PD is closer than it ever was. Thousands of very bright scientists and PD practitioners worldwide are hard at work, but the flow of real promise from trial to available, safe and tangible advance is slower than many of us sufferers would like. The “cure” remains elusive. Indeed “cure” maybe just another hype-handle to intoxicate us into believing it’s just around the corner.

That’s why the smart money is on utilizing proven advances in medications or technology that can help make our lives better now. Thankfully, there are a steady flow of these more established treatments and medications either here or on the immediate horizon. So taking advantage of achieved progress is always possible. It might not be the big splash that solves everything, but at least it’s attainable.

This more cautious approach to apparently revolutionary advances in care is more of a protective device, shielding your sanity from wider visualisable change in symptoms. The reason is simple. If you grab onto an experimental new PD protocol and begin to visualize it as the answer to your prayers, you might be disappointed. That could set you back in your entire Parkinson’s journey.

That’s not to say that hope of a wider answer to the PD conundrum isn’t still justified. It is. But it’s equally important not to bank on it. There’s a happy medium and only you can find the sweet spot for yourself and your all important, fragile, peace of mind.

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