Tag: Sunday Mornings with Twitchy Women

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

Eight little things you can do to improve your life with Parkinson’s

On By skrischerIn Exercise, Inspiration, Living Well, Parkinsons Disease3 Comments

Living with Covid-19 quarantines has challenged our daily routines, and with that, our individual and collective health. And sanity. One of the goals of beginning Sunday Mornings with Twitchy Women three months ago was to help us find ways, frequently little ways, to better meet the challenges of living with Parkinson’s disease. Thanks to our presenters we have been able to do just that. Each of them has shown us that we are resiliant and can adapt to the challenges that confront us. Almost all of these tips can be useful for everyone.

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  • Find new ways to exercise. We all know the importance of daily exercise to fight the disease, and we got to experience several different types of exercise. Many of our favorite exercise classes, such as Jen Parkinson Iljin’s Neuroboxing and Lisa and SteF’s PD-Connect are now available online, either through live Zoom classes or Youtube videos. Not being able to go to the gym is not an excuse to sit around and do nothing. Two useful tips: you don’t have hand weights? Use filled water bottles instead. No yoga strap? Use the sash from your bathrobe.
  • Worried about going back to the gym when it reopens? The Youtube exercise/meditation/mindfullnes videos you have been watching will still be there, as will the recorded exercise classes on many different websites. There is a lot to choose from and this option will not go away soon.
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  • Maximize your Levadopa. Lemon juice helps your body absorb Levadopa better. According to Dr. Laurie K. Mischley, studies have shown that people with PD do not make as much stomach acid as needed for proper digestion and absorption of nutrition from food and meds. Adding either 500 ml powdered Vitamin C or 30 ml Lemon Juice will help make more Levodopa bio-available, making it 25-35% more absorption and a smoother delivery of the Levodopa.
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  • Work on your Omega 3s. Can’t take Fish Oil? Look at Algae oil — not Flax oil — as a substitute. Better yet, get your blood levels of Omega 3 Fatty Acids checked. If normal, you won’t need to take either. As Dr. Mischley pointed out, many people who are vegetarians have normal levels without taking Fish Oil.
  • New ways to mindfulness. Have you tried mindfullness and meditation with no luck? According to Kat Hill, who brought us Sketchbook Journaling, sketching what you see is a mindfullness practice, which reduces the stress response. Gratitude Journaling can also form new neural pathways. And Life Coach Kristie Scott told us about Evolution Cards. These give you a “focusing word” with an insightful lesson and a challenge to inspire positive action followed by words of encouragement. The point is to use your chosen word to start a new evolutionary journey every day.
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  • Taiko Drumming! This is a great way for a person with PD to exercise. It includes large amplitude movements, full extensions, trunk rotation, variation of volume and tempo, sequencing, memory and cognition and vocalizations. Special thanks to Sydney Shiroyama and Naomi Estolas for this fun presentation.
  • Know where to go for PD resources. Kristie Scott also gave us a comprehensive list of resources for people with Parkinson’s.
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  • Be silly; have fun. According to (self-described) “Parkinson’s Diva,” Dr. Maria de Leon, do just about anything that will put a smile on your face; a Tiara and Red High Heel shoes will make you feel a lot better, even if you can’t walk in those shoes!

Sunday Mornings with Twitchy Women are webinars on Zoom for Women with Parkinson’s Disease, held every other Sunday morning at 10 am Pacific Time. To maintain privacy for this group, we ask that care-partners and family members not attend unless an event states that registration is open to all. If you have any questions, please contact twitchywoman18@gmail.com.

Next up: Sunday, June 28 Living well with PD in Covid-19 era 

Movement Disorders Specialist Indu Subramanian, MD, UCLA and the VA, (my wonderful doctor and PMD Alliance superstar!) will talk about living well with PD in the Covid-19 era including the importance of social connections, mindfulness and yoga to alleviate some of the stress we are all feeling during this unsettling time. Watch her recent talk on PMD Alliance with Dr. Ray Chaudhuri about pain and PD. Register here for this program.

To see what else is scheduled, click on Sunday Mornings with Twitchy Women at the top of this page.

Have a great week!

Stay Safe, Stay Well and please Stay Sane!

How Coronavirus is affecting Women with Parkinson’s

On By skrischerIn Exercise, Inspiration, Living Well, Parkinsons Disease3 Comments

“Life isn’t easy”: how coronavirus is affecting women with Parkinson’s An edited version of this post appeared in Parkinson’s Life today.

One of the first things that I noticed after being “sheltered at home” was that not having a daily schedule disrupted my exercise routine.  As a person with Parkinson’s, that had a greater effect on how I felt than anything else.  Some of my symptoms got worse.  I wasn’t sleeping well and within a few weeks, the days started blending together.  Some days I woke up and literally did not know what day it was.  

Eventually I was exercising more than before

Image result for zoom images

As the weeks went on, and through the magic of Zoom, my boxing for Parkinson’s class and my yoga classes were meeting in the virtual world,.  Eventually I was exercising more than I had been and my endurance increased. 

But, though it did help, Zoom is not a complete substitute personal interaction. I miss being with other people, going to the gym, dinners out and going to movies and theater, my manicures, haircuts, shopping, and all of the things that I do with my friends and family.  Classes and meetings on Zoom are great, but it is not the same as being together. 

We have been reading to our grandchildren through video chatting

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There are a few really good things that have happened because of Covid-19.  We have been reading to our grandchildren through video chatting and have even played games with them.  A quick on line search will show you many free resources such as the one shown here. We may not be able to hug them, but we can have some special times with our grandchildren.  We have also had family video chats where our grandchildren in Los Angeles and Chicago have been able to see and talk to each other.  These activities help reduce the anxiety of isolation, of being cooped up at home.

Younger women (and men) who may be working remotely from home now, and not just those with Parkinson’s, now have the additional burden of balancing work and taking care of their family full-time.  It is a lot to bear. When working at home, it is difficult to do their job, while also making sure their children are doing their schoolwork, or are otherwise occupied and cared for. It can be overwhelming.   There is precious little time to take care of themselves, increasing  stress levels that affect how they feel each day. 

A big thing that I and others find missing is the ability to reach out to other women with PD.  With the stay-at-home isolation, we have lost our personal connection to others with PD.  It has been shown that women, more than men, really need the support of their PD peer group.  We go to support groups to make connections with other women.  The support for one another in our community is tremendous.

 Sunday Mornings with Twitchy Women

Here, too, while we can’t get together physically, we can find  find partial substitutes in the virtual world.. In that spirit, we took the non-traditional local support group that I had been running and made it available women with Parkinson’s literally everywhere;  in March we started   Sunday Mornings with Twitchy Women  to reach out to women with Parkisons around the world.  We meet every other Sunday morning at 10:00 Pacific Time for about an hour, with a different speaker/topic each session.  The feedback has been very positive.  It is helping  women fill a need to talk to others with PD AND giving them a respite from some of the stress brought on by the Pandemic.  It’s not the same as getting together physically, but it goes a long way towards making us feel better.

Sunday Mornings with Twitchy Women can be found at https://twitchywoman.com/events/