Awareness and Action: Your Voice Matters

Before May of 2023, I was only vaguely aware of Parkinson’s Disease. I’d heard of it, knew that Michael J. Fox and Ozzy Osbourne had it, and… that was about it.

To my knowlege, nobody in my world had the disease, or was affected by it. I didn’t pay much attention.

After my diagnosis, I began to pay a lot of attention to Parkinson’s — now if affected me, and I am fundamentally a self-centered person. Like the day I bought a red car and started seeing red cars everywhere, I became hyper-aware of every mention of research in the mainstream press. Every celebrity who announced they had it.

The real surprise came when I mentioned my diagnosis on LinkedIn. I heard from people I’d worked with from all over the country — television and radio people, many of whom I hadn’t heard from in years.

Some had the illness themselves. Others had loved ones who’d suffered from it. I was stunned at how many families, of people I know, Parkinson’s has impacted.

It makes sense — there are an estimated 1 million Americans living with the disease, with 90,000 new cases diagnosed every year.

There are over 10 million cases worldwide, with that number expected to grow to 25 million by 2050.

Parkinson’s connections turn up when you least expect them. On April 1, the first day of Parkinson’s Disease Awareness Month, Senator Cory Booker gave a 25-hour address to Congress. Late in the talk, Booker pivoted from a discussion of recent cuts to scientific research to tell a moving — and very funny — story about his father, who had Parkinson’s and Parkinson’s dementia.

You can hear the story in the video clip below. I’ve cued it up so you don’t have to listen to all 25 hours.

Follow Up: Calling Congress

A few weeks ago I wrote about the current administration’s freeze of research funding to the National Institutes of Health, its drastic reduction of support for indirect costs, and the impact those costs will have on crucial research into Parkinson’s.

As loyal reader Dave pointed out, I should’ve mentioned town halls. If your representative or Senator is making an in-person appearance in your district, go there and make the case for research funding– politely, but emphatically.

As Parkinson’s Awareness Month gets underway, now’s the time to make your representatives and Senators aware of the stakes involved.

On a recent weekday, I phoned the offices of Representative Maxine Dexter and Senators Jeff Merkley and Ron Wyden.

Dexter’s line was answered by a staff assistant named Nick. I asked Nick what Ms. Dexter was doing to try to get the cuts reversed. He told me he had not discussed the issue with her, but would be sure and pass my concerns along to her. Which is what I wanted.

My calls to Wyden and Merkley’s offices were answered by voice mails, and I left messages.

Total time invested: less than five minutes.

Several people wrote to me after my previous article saying they’d like to make the calls but don’t know what to say. An organization known as 5 Calls has put together a helpful script along with a history of the issue. The information and script are available here: https://5calls.org/issue/nih-nsf-funding-cuts/.

Please note: 5 Calls is trying to generate action for a wide variety of political topics, and is definitely on the left-of-center side of the fence. But you don’t have to be a liberal to fight for Parkinson’s research. If you’re a conservative, I hereby give you permission to make this one set of calls about this specific issue.

You don’t need to read the script word-for-word — use it as a guide to tell your own story. If you have Parkinson’s or are caring for someone who does, be sure and mention that — it makes the story more personal.

If you plug your zip code or street address into the “Location” box, it will pull up the phone numbers of your representative and senators — and there’s “click to call” functionality on the 5 Calls smartphone app.

Will we reverse the cuts by making these calls? Not in the short run. But as the midterms approach, these people will be increasingly interested in what’s on our minds.

It’s up to us to make noise.

Happy Parkinson’s Awareness Month to all who celebrate.