Congress Passed the National Plan to End Parkinson's Act

Big news just in from Michael J. Fox foundation

The U.S. Senate today unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease, sending the bill to President Biden’s desk to be signed into law. The bill passed with overwhelming bipartisan support in the U.S. House of Representatives last December. 

Senate Majority Leader Chuck Schumer (D-NY) announces the passage of the National Plan to End Parkinson's Act in the Senate.

On behalf of the 1 million people living with Parkinson’s disease in the U.S. and their families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) applauds Congress for this historic step forward in search of improved treatments, and ultimately, a cure for every patient impacted by this disease today and in the future.  

The Parkinson’s community — including tens of thousands of Parkinson’s policy advocates, partner organizations and champions in Congress — rallied together to help policymakers understand just how critical this legislation is. From adding your names to MJFF’s petition, calling and writing representatives and senators, pitching op-eds and sharing your stories on social media — advocates in all 50 states sent more than 70,000 messages to Congress urging their support. And nearly 1,000 advocates joined MJFF to meet directly with their members of Congress.  

We’re especially grateful to the bill’s lead sponsors, Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) for their exceptional bipartisan leadership in getting this bill passed. We also extend our deepest thanks to Senate Majority Leader Chuck Schumer (D-NY), Representative Jennifer Wexton (D-VA), Senator Bernie Sanders (I-VT), Senator Bill Cassidy (R-LA), House Majority Leader Steve Scalise (R-LA), House Minority Leader Hakeem Jeffries (D-NY), Representative Cathy McMorris Rodgers (R-WA), Representative Frank Pallone (D-NJ) and the many cosponsors from around the country for helping to get this bipartisan bill passed.   

A cross-country strategy to end Parkinson’s has the potential to: 

Dramatically increase federal research funding; 

Develop more effective pathways for treatments and cures; 

Improve early diagnosis; 

Spark new and improved models for patient care; 

Create standards and measures to prevent Parkinson’s disease; 

Address health disparities in diagnosis, treatment and clinical trial participation and 

Enhance public awareness of the disease. 

As the bill heads to the president’s desk, we look forward to continuing our work with policymakers to establish the advisory council and bring the National Plan to fruition for every patient and family impacted by this disease. 

Please join us in thanking the 215 representatives and senators who supported this bill in Congress and read the Foundation's press release to find out more about this historic bill.

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PD Quick Tip - Falling?

Am I a klutz or is it a PD fall? 

I've fallen down a few times while out walking, five times to be exact. Three of the 5 times happened when I tripped over sidewalk hazards in New York City. Fortunately only one of these falls resulted in broken eyeglasses, multiple cuts and scrapes. I did better on the other falls--just a few scrapes and my pride was bruised.

In two of the incidents the sidewalk hazards were similar. Light poles, either previously stood or were being installed. Regardless, there were bolts set in the concrete sidewalk and sticking up a few inches. If I were the type to run to a lawyer, I'm sure a judge would agree and find the city or property owner at fault.

My PD Quick Tip sounds obvious but there is a lot going on and this is worth repeating: Make sure you watch where you're walking, you might just avoid an unnecessary fall.

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I Won't Back Down (song)

I woke up at 4am with this song in my head.

Well, I won't back down, no I won't back down

You can stand me up at the gates of Hell

But I won't back down

Gonna stand my ground, won't be turned around

And I'll keep this world from draggin' me down

Gonna stand my ground and I won't back down

Hey baby, there ain't no easy way out

Hey, I will stand my ground and I won't back down

Well, I know what's right, I got just one life

In a world that keeps on pushin' me around

But I stand my ground and I won't back down

Hey baby, there ain't no easy way out

Hey, I will stand my ground and I won't back down

No, I won't back down

Source: LyricFind

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PD Open Message on Facebook

I've been going back and forth whether I wanted to 'go public' with the news of having Parkinson's.  This week, after a lot of thought, I did it. And received so much positive support from Facebook friends. No regrets.   

Here is what I posted to my Facebook timeline.

I'm guilty of posting a vague reference to my health.  Not sure why but for a long time I've avoided telling many people that I was diagnosed with an illness.  I still don't feel comfortable talking about it, mostly because it has gotten negative responses or reactions from the few friends I've told. It seems every time I open up and tell a friend, it's the last time I'll hear from them.  A few wrote to me that people don't want reality contaminating their Facebook fantasy world so I've been hyper-selective about what audience I expose to my postings that don't eude toxic positivity. 

Since I broke character yesterday and posted a vague message seeking a time machine to get a cure, I decided to be authentic and share the news here.  Twelve years ago I was diagnosed with Young Onset Parkinson's Disease. I am not seeking emoticons of support, just letting friends know what's up. Parkinson's Disease has a very long list of symptoms, it's like the menu in a Chinese restaurant when talking about symptoms. One person suffers from B1, B3 and G4 the next person suffers from B3, C1 E22 and p5. And do you want shakes with that? No two people have the same path. If you want to read more, I'll add a blog link in the comments.  I know it is hard to understand that one illness can take so many directions but for now it's all called Parkinson's, maybe it will have sub classifications in the future, who knows. Hopefully this message doesn't make you too uncomfortable. 

One thing to remember, the illness is both chronic and progressive with no cure.

So here it is, now on Facebook. You can click an emoticon, post a GIF or send thoughts and prayers, it's all good. Phone calls or email are welcomed.   I don't like Facebook messenger and try to avoid text messaging when possible.

TGIF and have a great weekend.

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