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.

Gratitude during the Pandemic

Gratitude turns what we have into enough.

Anonymous

It seems like an oxymoron. How can we have gratitude while quarantined because of the Covid Pandemic? Our lives are disrupted in so many ways. What good can come of it?

I took a yoga class the other day with a yoga instructor who talked a lot about gratitude during our practice. Throughout the session, she reminded us to think of something we were grateful for. And to put a smile on our face. When you smile, you can’t help but feel better.

It turns out that once you start thinking about it, there are a lot of positive things that have happened to each of us during the past 4 months. For some people, it meant getting to those tasks that were saved for a rainy day. Others took classes on line that they did not have the time for previously. And then there are those who started baking bread and other goodies during this time. Suddenly we had an abundance of time to do all of those things at home that we wanted to do for so long.

After the yoga class, I went to my sketchbook journal and started writing. By then it wasn’t too hard to find gratitude for many things in my life.

July 8, Day 126 for Mr. Twitchy and me. We started the quarantine early because we were exposed March 1.

4 1/2 months we have lost Time that will never be returned. Has anything good come out of it?

1. Connecting with our grandchildren in Chicago more often, in a more meaningful way – reading to them, playing games with them. And the same for our grandchildren in Los Angeles.

2. Brought together over 160 women from at least 4 countries for Sunday Mornings with Twitchy Women since March 22. Everything has fallen into place so quickly and I have met so many impressive women in the process.

bluelahe - Bullet Journal uploaded by Karen Naomi

3. Learning to play golf – getting out with Mr. Twitchy 2 afternoons a week in the sunshine (getting that much needed Vitamin D)

Looking back in my journal, there were many more expressions of gratitude throughout the 4 1/2 months.

Just 2 weeks ago, I wrote about “a remarkable couple of days” after being nominated in 3 categories (now 5) for the WEGO Health awards and being named one of 9 for Healthline’s Best in Blog 2020, with only 3 being patient bloggers. Yet the entry before that was about the marches and riots, constant helicopters overhead and anarchy in Seattle. Even that entry managed to find gratitude for talking to friends on the phone & Zoom, lifting of some more Quarantine restrictions, etc.

Smiley — Stock Photo © aldorado #13975132

Now I understand why journaling is so important, especially if you have a chronic disease. Keeping a journal captures moments of your life and gives you insight into what has changed over time. It also allows you to see what has been good and what has not been so good, even on the same day. I don’t write every day. Sometimes a couple of weeks will go by, but I am still telling my story. It will always be there for me to go back to when I need it. I will be reminded of what to be grateful for, in spite of everything, and to smile.

If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.

Rabbi Harold Kushner

When Life Gives You Cucumbers and Tomatoes

…and banana bread, chocolate chip cookies and sour dough bread.

It seems that the Coronavirus has given everyone a green thumb this year. Quarantined at home, we all channeled our inner gardeners and planted some vegetables and herbs in our back yards, on our patios, balconies, and in pots anywhere there is some sun. Many of us have also turned to our kitchens thinking we are master chefs and bakers, the end result being Covid-15. What is Covid-15 you ask? It is the 15 pounds people have gained while being quarantined for 3-4 months with nothing to do but garden, bake and eat what they have created.

Here in Southern California, we typically plant veggies in March, as our rainy season is ending. I have had varying success with my vegetable gardens, but this year is different. We planted early, and our rainy season was late, sprinkling our newly planted veggies through the end of April. They thrived and we now have an abundance of tomatoes and cucumbers this year. Last year, every one one of my tomatoes, except the cherry tomatoes, was eaten by birds or other animals.

The shiny CD is keeping the birds away!

What made the difference this time? A friend in Tucson posted several months ago that she hung CD’s from her pomegranate trees to keep the birds away and it worked. Mr. Twitchy had just cleaned out his CD collection the first two weeks of quarantine so I rescued the discards and put hung them on the tomato plants. Beatles, Beach Boys, you name the band, they are now protecting my tomatoes. And it is working!

The result is an abundance of tomatoes, large and small and endless Persian cucumbers. Now the big question is – what to do with all of this????? I have made fresh uncooked tomato sauce, tomato soup, pasta salad with grilled vegetable ratatouille and more. I am in the kitchen hours at a time trying to make something different with the tomatoes. I think I have used every cookbook, appliance and pot that I own in the last few weeks. Some days my kitchen looks like it had been bombed with tomatoes.

Audrey the man-eating cucumber vine

And then there are the cucumbers. I ordered 2 cucumber plants. When I picked them up I saw that the 2 pots had a total of 5 plants. Do you have any idea how many families can be fed by 5 cucumber vines? The raised bed where I planted them looks like Audrey, the man-eating plant from Little Shop of Horrors. They are out of control.

When I asked my daughter if she wanted any, she suggested that I make quick refrigerator pickles with them. She had the same abundance problem and could not take any of mine. So I looked up quick refrigerator pickles and now I am in the pickle business.

Seriously, the pickles are a big hit. And nothing beats a fresh picked tomato in a summer salad. Have a wonderful 4th of July.

WEGO Health Awards

Last year, a surprise nomination led to Twitchy Woman being a finalist for WEGO’s Best in Blog award. Nominations and endorsements are now open for the 2020 WEGO Health Awards. I have been nominated for 3! If you agree and would like to support me please go to this link and endorse/nominate me. Thank you for all of your support of my blog over the last 6 years. I hope we will continue together on this journey with Parkinson’s for many more years to come.

The Other Side of Self-Care: Feeling Worn Out

Originally published by Parkinsonsdisease.net
By Sharon Krischer · June 19, 2020

Put yourself at the top of your to-do list every single day and the rest will fall into place. -Unknown

I met with my movement disorders specialist recently, and she asked me if I thought that we, people with Parkinson’s (PwPs), are spending too much time on self-care at the expense of everything else. It is a valid question that I admit I have also thought about. Many PwPs will say that they are not defined by our Parkinson’s disease (PD). However, these same people spend an awful lot of time just taking care of themselves to help manage their disease. And I am one of them. I often say that since my PD diagnosis, I spend more time taking care of myself than anything else. And I often feel worn out.

Read the rest of the story at Parkinsonsdisease.net

Sunday Mornings with Twitchy Women

This Sunday, June 28 at 10:00 am Pacific Time, Movement Disorders Specialist, Indu Subramanian, MD, will be joining us to talk about Living well with PD in 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. Click here to see her recent talk on PMD Alliance with Dr. Ray Chaudhuri

To register for this meeting, click here

These programs are for Women with Parkinson’s Disease. 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.

Healthline Best Parkinson’s Blogs

This week I was honored once again by Healthline to be on their list of Best Parkinson’s Blogs of 2020