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.
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.
Register now on Zoom to reserve your space. Family members and care givers are encouraged to attend. This is open to everyone.
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)
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
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.
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.
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.
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.
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.
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.
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.