Category: Parkinsons Disease

Going on a Road Trip with California Fires and Covid-19

On By skrischerIn Parkinsons Disease1 Comment

Several weeks ago, Mr. Twitchy and I decided that we really needed to get out of Los Angeles for a few days. A change of scenery would do us both good. We scheduled a trip to Lake Tahoe for August, but had to postpone it because of the fires in Northern California. So we left yesterday, September 7, without checking with the hotel about the fires and air quality. We just needed to get out of the 100 degree heat and LA.

A long line at the bakery

We loaded up the car and started on our 7 1/2 hour road trip north. Fortunately there was little northbound traffic, although there were many more cars driving south back to LA after a holiday weekend. We drove straight to Bishop, which is a small city at the foot of the Sierra Mountains and the gateway to the Mammoth Ski Area where we used to take our kids every year. We stopped to get lunch at a well known Dutch bakery. It seemed like everyone else on the road had the same idea. But the long line to get in to the bakery moved quickly, we found pre-made sandwiches and were back on the road within 1/2 hour.

The hazy view from the road

Then we started to smell the smoke. And our eyes were burning. We could not see the fires, but the air was hazy everywhere from the smoke. We began to think that maybe we should have stayed home.

We finally reached our hotel in Incline Village (at the north end of Lake Tahoe) and then discovered the real effect of Covid-19 on travel. We were greeted at the entrance of a well known hotel by a bellman and were informed that there was no valet parking. Not a big deal for us. When we checked in we were told that there was no maid service unless we called for it. Reservations were necessary for breakfast, lunch and dinner at the main restaurant. You can eat indoors in Nevada, but the seating is reduced inside and outside. The pool is open, jacuzzis not. The spa is not open, but the casino is. We were in Nevada after all. And the gym was open. Yay!!! And they even have a lot of Peloton bikes in the gym. A small victory for us. Perhaps the thing that made the least sense is that the restaurant in the hotel that is usually open for breakfast and lunch is closed, but you could bring food in from the small grocery/deli in the hotel or from restaurants outside the hotel and eat there.

Mr. Twitchy at the beach at our hotel

Back to the fires. We wanted to rent bikes today, but the bike shop recommended waiting a day or two for better air quality. The temperature dropped dramatically from yesterday and it was quite windy, but air quality is still not great. At least the pool was open and there were people swimming, even though it was 55 outside. There was no one at the beach as you can see in the photo.

Tomorrow will be warmer and we are hoping that the rest of the week will be better. We got a lot of rest today while catching up on reading, watching the US Open Tennis tournament and making S’mores at a hotel firepit. We are looking forward to renting bikes tomorrow and getting on the bike trails along the lake.

Mr. Twitchy toasting marshmallows for S’mores

The bottom line is that traveling under the rules dictated by the Covid-19 Pandemic is not the same. Do not expect a luxury experience anywhere. The hotels are very limited in providing the services that you would normally expect. Many of the restaurants have limited seating and don’t expect much entertainment beyond watching movies in your room. Hopefully things will start to improve soon so that we can enjoy traveling once again.

We CAN end Parkinson’s Disease in the future

On By skrischerIn Education & Advocacy, Parkinsons DiseaseLeave a comment

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.

The Power of a Smile

On By skrischerIn Inspiration, Parkinsons Disease1 Comment

Smile though your heart is aching
Smile even though it’s breaking
When there are clouds in the sky you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through
For you

Nat King Cole, “Smile”

There have been many songs written about smiling. Why? Because a smile is so powerful in so many ways. The very act of smiling makes us feel better. Think about how you feel when someone smiles at you and you return the smile? Smiling releases endorphans and dopamine in our brains, making us feel happier.

In my yoga class, the instructor is always telling us to smile. I often start to laugh when she says that. So I decided to do a little research into why a smile is so good for us.

But first, try it now. Go. Run to the nearest mirror and smile at yourself.

How did it make you feel? Silly? Did you want to laugh? Congratulations, you just gave yourself a dopamine/endorphan rush. What else did you notice? What happens to your eyes? Were they smiling, too? Maybe you even started laughing at yourself. It’s ok. Your entire body reacts to the smile.

A Dog Smiles, Too

Think about your dog, if you have one. When a dog is happy, it’s whole body smiles as it moves with joy – with it’s tail wagging and tongue sticking out. We can’t help but smile back.

Babies know best!

One of the first emotions a shows is a smile. They smile at us, we smile back. They learn very early that if they smile, they get a reaction from you. Everyone feels better because of that smile. The exhausted parents, the grandparents, siblings and friends. A baby’s first smile is a milestone that we celebrate. According to WebMD.com, between 6 and 8 weeks of life, babies develop a “social smile” — an intentional gesture of warmth meant just for you. It shows us that  brain development is advancing and the baby’s communication skills are on track.

BRF

With the facial masking that is so common with Parkinson’s, smiles don’t always come naturally. We may walk around looking angry when, in fact, we are in a good mood. When my kids were in high school, they told me that I had BRF – B***chy Resting Face. Their friends thought I didn’t like them, which of course was not true.. It turned out that this was an early sign of Parkinson’s for me. I wasn’t aware of it. Eventually I noticed that it was getting more difficult to smile anytime. We were traveling a lot at that time, and when I look back at photos of me, my smile was disappearing. I was getting frustrated and stopped trying to smile for the camera. When I finally started taking my PD meds, the masking went away and my smile came back.

Trying to smile in Sydney

As adults with Parkinson’s. We need to be aware that smiling can become difficult for us. As PD advances, our communication skills may diminish. We need that smile to help us convey how we feel.

The Importance of Smiling

Karyn Hall, PhD, in her blog The Emotionally Sensitive Person  The Importance of Smiling, says:

*When you change your facial expression you mood tends to align with the emotion your face is communicating.

*Smiling is contagious.

*When you give a warm and friendly smile, often others will smile back. You get a moment of feeling connected and accepted, and you spread happiness.

*Smiling can help reduce stress. When you smile, your heart rate slows and other stress indicators go away faster than if you don’t smile. Smiling can lengthen your lifespan.

This is the power of the smile. We need to do everything we can to keep on smiling. When you cannot show emotion, good or bad, it makes it very difficult to be a social person. The last thing you want to do is to isolate yourself because you can no longer communicate with others, both verbally and non-verbally, as you had done before Parkinson’s. And don’t forget that the dopamine hits that we get from smiling are very important for our brains. The Parkinson’s Foundation recommends that you see a speech-language pathologist who can teach you facial exercises that may help with masking, as well as other issues you may be having, including speech and swallowing problems.

Go back to your mirror and practice your smile. You can do it. Laugh a little or a lot while you are at it. It may just make your frown disappear.

Image result for smile

How did it get to be August already?

On By skrischerIn Education & Advocacy, Inspiration, Parkinsons Disease2 Comments

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

On By skrischerIn Education & Advocacy, Inspiration, Parkinsons DiseaseLeave a comment

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