We CAN end Parkinson’s Disease in the future

Parkinson’s Disease is not inevitable. Parkinson’s Disease is rather preventable.

Ray Dorsey MD
Open Hand Raised, Stop Parkinson's Disease (PD) Sign Painted,.. Stock  Photo, Picture And Royalty Free Image. Image 26035812.

Can we prevent Parkinson’s Disease in the future? Dr. Ray Dorsey, one of the co-authors of the book “Ending Parkinson’s Disease“, says that we can. On Sunday, August 23, Dr. Dorsey spoke to our Sunday Mornings with Twitchy Women group on Zoom. He said that the major premise of this important book is that Parkinson’s is a man-made disease, caused by exposure to chemicals, and it is preventable.

Parkinson’s was rarely seen before the Industrial Revolution began more than 200 years ago. Man-made chemicals and pollutants were spewed into the air from industry everywhere. In England, the air became so thick with noxious chemicals, it became know as the “London Fog.” It was at this time, in 1817 that Dr. James Parkinson wrote his groundbreaking paper on the “Shaking Palsy” after observing 6 men with tremors, a bent posture, an abnormal gait and a tendency to fall.

There are two main chemicals still in use today that contribute to a huge percentage of the people suffering with Parkinson’s. Paraquat and Trichloroethylene (TCE). Because of their continued use, the number of people with PD has doubled in the last 10 years and is expecting to double again in the next 20-25 years, reaching Pandemic proportions.

Beyond Pesticides Daily News Blog » Blog Archive Despite Damning Scientific  Evidence, EPA Dismisses Link Between Parkinson's and Exposure to the  Herbicide Paraquat - Beyond Pesticides Daily News Blog

So here’s the irony in all of this: Great Britain, which banned Paraquat several years ago, still manufactures it to sell to, you got it, the United States, which continues to postpone a ban on this toxic chemical. In fact, paraquat is the most used herbicide in the US, more than doubling in use in the last 10 years. Looking at maps of PD incidence you will see that it is much higher in farming communities. Unfortunately, traces of paraquat show up in the milk we drink, the food we eat, and our ground water, making it impossible to avoid exposure.

The second toxic chemical used in the United States is the solvent Trichloroethylene. TCE, introduced in the 1920’s, has been used to clean the silicon chips in the Silicon Valley, circuit boards, flushing rocket engines, cleaning carpets and at the dry cleaners. Although the use of TCE has declined, it is still found in many common household products today.

Call to Action

To make his point that we can reduce worldwide exposure to Paraquat and TCE, Dr. Dorsey told the stories of ordinary people, not the doctors or scientists, who pushed to eradicate HIV, Polio and Breast Cancer. He emphasized that today, we can do the same for Parkinson’s.

Twitchy Women CAN help end Parkinson’s for Future Generations

How? By making our voices heard, NOW. Not tomorrow, not next week or next year. NOW. We Twitchy Women cannot wait for others to make it happen. We can join forces with PD Avengers and others to create a worldwide grass roots movement to ban the use of these chemicals everywhere.

The good news is that the EPA ( Environmental Protection Agency) must make a decision on the future of Paraquat use in the US by October 2022. That is just over a year away. The bad news is that if the EPA doesn’t ban Paraquat now, it has up to 15 more years to review it again.

So your mission, is to contact EPA Administrator Andrew Wheeler (wheeler.andrew@epa.gov) or call him at 202-564-4700, urging him to ban Paraquat in the US. Write to your congressperson asking him/her to do the same. We need to flood their emails and phones with our message. The more people they hear from, the stronger our voices become.

If you live in the U.S. write a letter to your congress person to support the bill that bans Paraquat.

If you live in another country that still allows the use of Paraquat and TCE, look for similar agencies to contact at home, and urge others to join you on your quest.

For more information about what you can do, go to https://endingpd.org/. You can sign up for their email list to get notified about upcoming live webcasts, and watch past webcasts: https://endingpd.org/live

Ready to end Parkinson’s disease? Sign the PACT to Prevent, Advocate, Care, and Treat Parkinson’s: https://endingpd.org/resources

We Are Fighters

We have been called PD Warriors, PD Avengers, PD Fighters and more. We are superheroes. Let’s show the world that we are all of these and that we can make a difference for our children and our children’s children by eradicating one of the major causes of Parkinson’s Disease today.

Tremors on the Golf Course

This was originally published by Parkinsonsdisease.net

August 6, 2020 by Sharon Krischer

Some days you just know, before you even get out of bed, that it is just not going to be one of your better days. With Parkinson’s, those days occur with no rhyme or reason. The night that you got little sleep can be followed by a great day. Other days, for no reason that you can determine, your symptoms are worse than ever, your meds don’t work and you just can’t get anything done.

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Talk to anyone with PD and you will find that most of us are having more bad days than usual. Our lives have been so disrupted by Covid-19 that there is no normal anymore. After 5 months of restrictions, there seems to be no end in site. We work hard at finding ways to be socially connected to others while staying at home. But we are getting tired of all of those Zoom meet-ups. The novelty has worn off and it just doesn’t replace getting together in person. Continue reading here

Ending Parkinson’s Disease with author Ray Dorsey, MD

Join us for a book discussion on Sunday, August 23 at 10am PDT with Ray Dorsey, MD, David M. Levy Professor of Neurology, University of Rochester who will be discussing the new ground-breaking book Ending Parkinson’s Disease: A Prescription for Action. Learn about the environmental factors that put many at risk for Parkinson’s and what we can do about it now to bring an end to the disease.

Registration on Zoom is now full. You can also join us on Facebook Live Sunday at 10:00 AM PDT

How did it get to be August already?

Where has this year gone? 5 months after the big shut-down, we have become resigned to the fact that it may be a year or more before things get back to “normal” whatever that is. I still wake up most mornings and have to think about what day it is. The calendar is useless. Stress levels are up, my tremor is back, and I keep losing things. I know they are in the house. I haven’t gone anywhere, so they must be here. We have done a lot of binge TV watching and managed to watch all 5 seasons of Outlander in 5 weeks, a notable achievement. Or not.

And we Zoom and we Zoom. But never seem to get anywhere.

Mr. Twitchy did manage to fly to Sitka, Alaska yesterday for his annual fishing trip with his brother and nephews. I am so jealous, but not ready to get on an airplane yet.

Since I have nothing but time, you would think that maybe I would get a lot of things done around the house. Maybe, if you count making pickles out of all of those cucumbers from my jungle of a garden. I went through dozens of old photo boxes, getting rid of duplicates and bad pics, trying to arrange them, still not figuring out what to do with all of the sorted piles of photos sitting on my desk. But I still haven’t gotten back to playing the piano more than once a month, or working on my sketchbook journal about as often. There are a lot of things on my rainy day list that are still waiting for a rainy day. Here in Southern California, that is not likely until December. In the meantime, maybe I will contact some of the people in those pics who I haven’t spoken to in years. Or not.

However, there have been a few good things happening in Twitchy World.

Join us for a discussion about the book Ending Parkinson’s Disease

First, Sunday Mornings with Twitchy Women has really taken off. The programs have been varied, with speakers, exercise demos, Taiko drumming and more. Most of the programs are for women only, but on Sunday, August 23, the program is open to everyone. Ray Dorsey, MD., will be leading a discussion about the book Ending Parkinson’s Disease, which he co-authored with Todd Sherer, PhD, Michael S. Okun, MD and Bastiaan Bloem, MD, PhD. You will need to register here to join us on Zoom or look for it streaming on the Twitchy Woman FB page.

Even if you cannot join us, the book is a must read for people with Parkinson’s and their family members. You can order it today by clicking on the book (above)

For more information on our other events, go to http://www.twitchywoman.com/events.

You can participate in Parkinson’s research today – From Home!

I just did this today, at my desk. Now it’s your turn.

What: The PARK study explores whether the use of web-based technology can measure day-to-day fluctuations in Parkinson’s symptoms — and distinguish individuals with Parkinson’s from those who do not have the disease. 
Who: English speaking individuals diagnosed with PD and those who do not have the disease. Participation is limited to individuals who reside outside of the European Union.
How: Participants complete a series of motor and voice tasks online, such as tapping fingers, opening and closing hands, and reading text aloud. While completing these tasks, participants are recorded by a webcam. Participants must have Google Chrome on their desktop or laptop.

Participants who complete all tasks receive a $10 Amazon gift card

The PARK study is a collaborative effort conducted by Dr. Ehsan Hoque, Department of Computer Science, and Ray Dorsey, Department of Neurology. Learn More

Kinetics: The Desire to Move

Sunday morning, at a Zoom meeting for Twitchy Women, I had the privilege of hosting Sue Wylie, writer, producer and actor of the wonderful film about Parkinson’s Disease Kinetics: the desire to move….

In just 50 minutes, Sue takes us from first symptoms to diagnosis, meeting a troubled student at the school where she teaches drama, learning about his love of Parkour (an extreme running sport), which he uses to cope with his ADHD, to their growing friendship and respect for each other’s disabilities.

Accept, Adapt and Adjust

It is a remarkable film because of the honesty Sue presents us with about living with Parkinson’s Disease. She is afraid to tell others about her diagnosis. She shows her increasing difficulties at work and home and how it affects her relationships with others. A chance meeting with another patient at the Neurologist’s office gave her hope. He left her with the most memorable line in the film: “Accept, Adapt and Adjust.” It was beautifully done and left us wanting for more.

Last March I started an online group titled Sunday Mornings with Twitchy Women, which grew out of the need for women with Parkinson’s to be able to get together somehow after the start of the Stay at Home restrictions to combat COVID-19. Starting with 9 women, we now average 40-50 at each meeting, with women from the US, Canada, UK and beyond. Kinetic was suggested by one of the participants who connected me to Sue Wylie. I had seen the film at the World Parkinson Congress in Kyoto last year, and I agreed with her that it would be great for this group. Sue was thrilled to be able to speak to our group.

“I saw myself in this film”

And the group was thrilled to speak to her. We could all relate to what Sue brought to the film and the issues that were raised. Here are some of the comments that were emailed to Sue:

“I saw myself in this film.  I was diagnosed last September.  It’s still mild; the twitch is in my hand (the cat loves my messages!)  I spent a long time not telling anyone other than immediate family while I processed what was happening to me.”

“She expresses so many feelings that I have about my Parkinson’s’ diagnosis which I have not been able to express.  As I sit here, deep in a depression probably fueled by the pandemic, the isolation and my history of depression, I have experienced the release of tears for which I thank Sue. I have wanted to skip over “acceptance” and adaptation and adjustment in a rush to have a positive attitude.  The film is  elegant in its simplicity and straightforwardness and its honesty.  It speaks to the heart and mine expands to hers.” 

“I am hugely impressed with your very much on-target film, and the creative way you presented Parkinsons for us. I just sent a link to my family asking them to please watch it. This is something I’ve never done before. I have a tendency to want to protect my adult children from the realities of Parkinson’s, but they need to know. Your storytelling captures not just the facts, but the emotional truths as well. Thank you!”

“You have touched many lives with the honesty you show in your story. “

An interesting thing happened after Sue finished her presentation. It brought up so many feelings that the women started talking to each other about many other things, such as how often they speak to their children about Parkinson’s. Are their children even interested? How do we acccept? And, did Sue ever jump???? (you have to watch the film to understand that) Most importantly, after 4 months of getting together through Zoom, we were friends, having a good conversation together. We are looking forward to sharing many more Sundays together.

Kinetics will still be available to watch for free online for a few more weeks.

Don’t miss it.

Watch the full film directly here (50 minutes long): 
Kinetics: The Desire to Move. FULL MOVIE  (available for a limited time)

You can watch the trailer:
https://www.youtube.com/watch?v=R8tIp409QBM 

And learn more about it on our website: 
https://www.kineticsfilm.com

Endgame Parkinson’s

Last week I received a mysterious message from Larry Gifford, host of the podcast “When Life Gives You Parkinson’s”. Would I like to join him, along with other luminaries in the Parkinson’s world plotting the ENDGAME for Parkinson’s. This global alliance of advocates have pledged to take united actions towards ending Parkinson’s and they need me to join them.

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Inspired by the recently published book, Ending Parkinson’s Disease: A Prescription for Action, a group of advocates have pledged to work with the authors of the book by creating PD Avengers.

He went on to say that I was identified as an advocate who is ready activate my personal super powers to aid in uniting 50 million voices to prove Parkinson’s matters and build a real urgency to end Parkinson’s. The group is targeting leaders in the PD space to join forces with them prior to going fully public around World Brain Day on July 22, 2020. At that time, we’ll begin more public recruiting efforts.

So Larry, you really know how to get people to join your mission. You had me at activating my personal super powers. Wow! Does that come with an iconic costume? I think Wonder Woman’s tiara would be nice, along with those cool wrist bracelets. Talk about having super powers.

Warnerbros.com

Last Monday, there was a Zoom meeting with a number of recruits waiting to be admitted into this “super power” group. We learned that the ultimate goal is to unite 50 million voices to prove Parkinson’s matters and build a real urgency to end Parkinson’s. We were an important part of making this happen, by reaching out to our networks and inviting People with Parkinson’s (PwP’s) and their families and friends who are impacted by Parkinson’s. After all, there are only about 10 million PwP’s now, but if each of us invites 4 other people, we will be a force to be reckoned with. We need our number of advocates we can build urgency for prevention and a cure, much as the AIDs community did in the 1980’s-1990’s.

So this is where all of you come in. Go to their Facebook Page PD Avengers and sign on to this very important mission. All of the information is there. I am giving you just their Vision and their Mission here:

  • We are inspired by and work in partnership with the authors of the book “Ending Parkinson’s Disease.”
  • OUR VISION (Longest Term Goal): Ending Parkinson’s.
  • OUR MISSION (3 to 5 Years Goal): Unite 50 million voices to prove Parkinson’s matters and to build a sense of real urgency to end Parkinson’s.

Join me and SIGN UP to bring your super power to #EndingPD #WBD2020 https://www.pdavengers.com/get-involved 

Together we CAN make a difference in the lives of those with PD today and in the future.