What’s New in the Parkinson’s World This Month

In the end, this book is an empowering exploration of exquisite women. Facing the battle of our lives with strength, grace and dignity. 26 women fighting fate, facing facts, conquering fear.

Laura Russell, author

There has been some remarkable news in the Parkinson’s world in the last few weeks: (1) The EPA has banned the pesticide Chlorpyrifos, (2) a molecule called “Farnesol” has been identified as a potential treatment for PD, (3) perhaps some cognitive functions improve with age, (4) a new art exhibition features a book on PD and (5) there will be a special screening of the documentary on Robin Williams. That is A LOT happening in the waning days of summer.

 

Banning a Pesticide 

The most important is that the EPA (at long last) banned the pesticide Chlorpyrifos (also known as Dursban and Lorsban).  Chlorpyrifos increases the incidence of Parkinson’s by 250% among the farmers who use it to kill pests.

In its death blow announcement on Wednesday, the US Environmental Protection Agency (EPA) ruled US farmers may no longer use the pesticide on food crops, revoking all “tolerances,” which establishe an acceptable amount of the pesticide on food. Going forward there is no amount that is acceptable.

This is the result of the incredible advocacy campaign that was influenced by the call to action in the book Ending Parkinson’s Disease, and by the efforts of the indefatigable Dr. Ray Dorsey, who never said no when given the chance to address a group of any size.  Dr. Dorsey’s co-authors, Dr. Michael Okun, Dr. Bas Bloem and Dr. Todd Sherer, along with the PD Avengers worked hard to mobilize the Parkinson’s community to push for a ban of three pesticides, Paraquat, Trichloroethylene(TCE) and Chlorpyrifos, which are known to increase the incidence of Parkinson’s Disease.  In March, the White House was flooded with over 30,000 red letters and postcards urging the ban of these pesticides.

However, our work is not done.  It took fourteen years to get one pesticide banned.  We don’t want to wait twenty eight more years for the other two to be banned.  Too many lives are at stake.

For more information on what you can do, click here

 

What is Farnesol?

 

A ground breaking Cure Parkinson’s supported study has identified Farnesol, a molecule commonly found in essential oils and plant-derived foods, as a new potential treatment of Parkinson’s. 

A research team at Johns Hopkins Medicine, led by Professor Ted Dawson, has been investigating a protein that accumulates in the Parkinson’s brain called PARIS. The team has previously reported that a build-up of this protein can cause neurodegeneration, and blocking this accumulation can rescue models of Parkinson’s.

Now, in a Cure Parkinson’s funded project, these same investigators, in collaboration with South Korean scientists, have conducted a large scale drug screening study to identify molecules that block cell death caused by PARIS accumulation. By screening 230,000 drug-like compounds, they identified a molecule called farnesol that seems to do that.

Prof Dawson and his team found that farnesol robustly blocks the detrimental effects of PARIS build-up in cells grown in the lab. They also fed mice a diet high in farnesol and reported that it accessed the brain, reduced the negative effects of PARIS and protected different models of Parkinson’s.

As part of their effort to bring novel disease-modifying therapies to the Parkinson’s community, Cure Parkinson’s is urgently exploring taking farnesol into safety and dose finding evaluations to progress its clinical development.READ THE FULL ARTICLE HERE 

There is a lot of science behind this; if you want to read it, check out Dr. Simon Stott’s Farnesol: The farnesylator of PARIS

Do some cognitive functions improve with age?

Some more good news from Medical News Today. Getting older doesn’t always mean our brains are not functioning well.

For years, most research indicated that older adults experience a decline in brain functioning across the board. However, a new observational study, which appears in Nature, suggests that may not be true.

The study’s authors found that rather than seeing a decline in all cognitive functions, older adults instead demonstrated improvements in some domains such as Executive Function and Orienting. One of the authors of the study, Dr. Michael T. Ullman said “… the results from our large study indicate that critical elements of these abilities actually improve during aging, likely because we simply practice these skills throughout our life.”

An Art Exhibition in Santa Fe

One of our amazing Twitchy Women, Laura Russell, is a photographer and book artist who has Parkinson’s.  Her new flip book Exquisite Warriors is featured in an exhibition at Form and Concept Gallery in Santa Fe, NM.

UNSEEN – an International Juried Exhibition of Book Arts

Laura’s book features 26 women with Parkinson’s, yours truly included, as she explores her journey with Parkinson’s. Included are an “abecedarian” or ABC listing of PD symptoms, and the greatest fears from the women in the book. All gross proceeds from the sale of this deluxe limited-edition artist book will be donated to organizations supporting women with Parkinson’s Disease.

Many of the women featured in the book participate in our Sunday Mornings with Twitchy Woman series of webinars.  Thank you Laura for including me in this terrific group of women.

If you happen to be in Santa Fe on October 9, Laura will be speaking about the book at 2:00 PM that day. If not, you can see her on the curator’s talk/video walk through on opening day.

In September: Robin Williams Documentary

Parkinson's Foundation
In partnership with the Lewy Body Dementia Association, on September 29, the Parkinson’s Foundation will host a special viewing of the film SPARK. This 45-minute documentary about Robin Williams and his battle with Lewy Body Dementia (LBD) provides a deeper dive into the disease and how it impacts loved ones. 
REGISTER NOW

And finally . . . . . we forgot how to travel 

Mr. Twitchy and I decided that it was time to get away for a few days.  We packed our bags, loaded up the car and drove to San Diego for a few days to just relax.  What a noble idea that was!

We got there and soon discovered that we had left a number of things at home.  Nothing crucial, but being home for so long, we forgot how to pack.  When traveling frequently pre-pandemic, we had it down to a science.  His Dopp kit and my cosmetics bag were always completely supplied with what we needed.  Just pick them up and throw them in the suitcase.  Not so anymore.  Our supplies had been raided over the last 18 months and never replenished.  Where’s the dental floss?  Toothpaste? Not in my bag.  Nor in his.  He forgot a jacket.  I forgot a sweatshirt.  We knew we took them out to pack, so where are they?  Sitting on my dresser at home.  Oh well, we may have to go shopping.  It could be worse. 

And then there are the medications. My Aware in Care kit was packed and ready to go with all of my essential meds. But where are those that I only take as needed? At home in the medicine cabinet….

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A Note To My Readers


I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.