From 1990 to 2015, the number of people with Parkinson’s more than doubled from 2.6 million to 6.3 million.
Ending Parkinson’s Disease
I grew up in the Midwest, where mosquitoes were plentiful in the hot summer months. I remember riding my bicycle with my sister and friends behind the fumigation trucks as they sprayed their toxic chemicals to eradicate those annoying pests. No one knew at that time that these chemicals could have toxic effects on humans or other animals.
Fast forward to 2008. I started noticing strange symptoms. My foot would shake when I was writing. There was no pattern as to when it would happen, so I ignored it. Several months later I fell and broke my left ankle. My toes started twitching again not too long after that, so I hobbled to my Doctor to find out what was going on. After a few months, it was clear that it was not going away, so he sent me to a neurologist in January, 2009.
The neurologist put me through the usual PD regimen: tap my fingers, open and close my hands, walk down the hall, etc. You know the routine. Of course I did not pass. He declared that I had a Parkinson’s like tremor.
Eventually I went to a Movement Disorders specilaist who diagnosed it as Idiopathic Parkinson’s. In other words, of unknown origin.
Fast forward 10 more years to 2019. The big news in the Parkinson’s communitiy is that pesticides and dry cleaning chemicals, specificly Paraquat and Trichloroethylene (TCE), caused, you guessed it, Parkinson’s Disease. Bingo! Maybe that is what caused my Idiopathic PD.
In 2020, Drs. Ray Dorsey, Todd Sherer, Michael Okun and Bastiaan Bloem published their book Ending Parkinson’s Disease and our Parky World changed instantly. We now had a guide to use to navigate our world with PD. And it gave us the means to take our cause to Congress to get these chemicals banned in the US. Some of the chemicals were even banned in the countries where they were produced and then sold to the US because the US Environmental Protection Agency (EPA) declared they were not toxic. That did not stop us – we continued to lobby in Washington to get these toxic chemicals banned.
2023 was a watershed year
Some big news about Parkinson’s was announced in April, 2023. The biomarker breakthrough was achieved by an international coalition of scientists led by MJFF and its landmark clinical study, Parkinson’s Progression Markers Initiative (PPMI). Now we had the tools to diagnosis people with Parkinson’s before they became symptomatic and to develop better treatments for PD. In addition, a couple of the toxic chemicals were banned by the EPA. Now we just needed to get the rest of those toxic chemicals on the banned list.
And then: Success
In December, 2023, The U.S House of Representatives overwhelmingly passes The National Plan to End Parkinson’s Disease Act 407-09!
The bill, officially H.R.2365/S.1064 is bipartisan, no-cost legislation that will create an advisory council comprising members of federal agencies, people living with Parkinson’s, care partners, researchers, clinicians and other non-federal experts.
The passage of this bill means that our efforts to educate the Federal Government about Parkinson’s, the fastest growing neurological disease worldwide and engage the goverment in a mission to prevent and cure Parkinson’s, were successful. This will make a huge difference for all of us with PD and our family members.
Here is the one-page summary from the Michael J Fox Foundation.
More Work to Do
The next step is to get this bill passed in the Senate. Watch for information on how you can help. We will need as many people as possible to write letters and make phone calls to their Senators prior to the vote on the bill. After all, our lives and the lives of our children and grandchildren depend on it.
Thank you to our Volunteers
Twitchy Woman programs are run by amazing volunteers, all of whom have Parkinson’s Disease. I want to thank them for helping me provide you with programs and services in our grass roots movement for Women with PD.
Naomi Estolas – Mentor Program Susan Lehman – Mentor Program. Ethel Meyer – Mentor Program and World Parkinson Congress Team Candace Mueller – Mentor Program (retired)
Carole Ries – Mentor Program Laura Russell – World Parkinson’s Congress Team Darlene Santos – Anything Goes Chat Group and Mentor Program
Shelley Savoy – Anything Goes Chat Group. Kristie Scott – Mentor Program
And our two newest volunteers:
Debbie Flamini – Mentor Newsletter
Jen Heath – Clinical Trials Corner
Finally, a special thank you to Ashlen Kuntz, my assistant/intern who will be graduating in May as a DPT from the USC School of Physical Therapy. Ashlen has been running the Twitchies without Partners chat group, helping me with Sunday Monrings webinars and anything else tech that I need.
If you would like to help with one of our projects, or want to start something new, please contact me.
Wishing all of you a Happy and Healthy New Year!
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