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
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.