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.
Registration on Zoom is now full. You can also join us on Facebook Live Sunday at 10:00 AM PDT
Originally published by Parkinsonsdisease.net on May 26, 2020
In a conversation with Lauren Simmons of PD Buzz in Orange County, California, we discovered that we were both audiologists in our past lives.
We have both gone on to do other things, but we are still audiologists at heart. We talked about how much more difficult communication is when wearing a mask or scarf over our mouths, which can present a real challenge for people with Parkinson’s.
Victoria has been on the Board of Directors of the Iowa Chapter of the APDA since 2013 and convinced Bob to be a part of it as well (he is now the President). Her primary function is to help Support Groups throughout the state (currently 53 groups). She has initiated leader gatherings, presented ideas on how to run better meetings, suggested speakers and even secured $300 worth of books and materials that were distributed to every support group. Victoria’s passion is to make sure every person with PD in the state — not just those in the larger metro areas — is represented. What is even more amazing is that she accomplished all of this while undergoing DBS surgery TWICE (infections complicated the first) over an 8-month period and breaking her ankle in two places after the second, without missing a single meeting (and even saw the musical Hamilton in Des Moines). She still has stiffness in her lower leg but she keeps moving, and participating in the local Delay the Disease classes and the local support group.
As Bob says, with some understatement, “What can I say, she’s a fighter.” And a hero.
Several months ago, I profiled Barry Blaustein, who is in my StoPD boxing class. In a conversation with Alex Montaldo, founder of StoPD, he named Barry as a Parkinson’s Hero because of his involvement with the greater Parkinson’s community. Barry, who has had a long career as a film writer and director, now teaches screen writing at a local university. His background has prepared him well to be an official spokesperson for the Parkinson’s Foundation. He now travels to speak at PD conferences around the country. His inspirational speeches help many with PD learn about the good things about having Parkinson’s. “It’s still awful having it, but if God gives you lemons, you got to make lemonade!”
Barry has spoken on behalf of the Parkinson’s Foundation to members of Congress to get sponsors for legislation that would cover mental health under Medicare. He is very proud of the fact that 2 of the 7 legislators that signed on as sponsors of the bill were people he personally spoke to. Now he is currently writing a one man show about having Parkinson’s. I can’t wait for the premier!
It is now Week 5 under quarantine for most of us. Because we were exposed to COVID-19 two weeks earlier on a trip, Mr. Twitchy and I have actually been home for almost 7 weeks now. And we are definitely getting cabin fever here.
“Two roads diverged in a wood, and I took the one less traveled by. And that has made all the difference.” – Robert Frost
Each person with Parkinson’s has a different story to tell. Some are diagnosed immediately, others take years. Our symptoms and rate of progression will vary. So do our medications. It can be so overwhelming, especially when you have just been diagnosed.
I like to tell people to talk to more than one person with PD because no one’s story will be the same as yours. As in Robert Frost’s famous poem, “The Road Not Taken,” each of us will have to make a choice. We can be passive and give up or do everything that we can to live well with it, recognizing that there is no one right answer for all of us. continue reading here
Keeping busy while under quarantine
How are you coping with the enforced quarantine? Are you going stir crazy yet? Are your children concerned about every move you make? How about your partner or caregiver?
It can be difficult to maintain any sense of motivation while under “house arrest”. Apathy can take over if you are not vigilant. You need to exercise, but those naps that you take while watching tv or reading a book are so wonderful, why bother with exercise. And so the downward spiral begins.
Mr. Twitchy and I are binge watching a lot of tv, but finding it hard to get moving on those projects that we were saving for a rainy day. Well, the rainy day is here and we need to take advantage of it. We have boxes and boxes of photos that I have started going through. Remember when you actually used film and got duplicates photos when you developed it? And all of those scenery shots from who knows where? In the trash! 3 boxes down to 1 1/2. 17 to go. For you multi-taskers out there, go through the photos while binge watching Mad Men or Breaking Bad. You won’t feel that you have totally wasted the last 5 hours watching tv.
Bored? Find a webinar to participate in. There are so many out there. Every Parkinson’s organization is hosting numerous web based activities. Even Twitchy Woman has gotten on board with our very first webinar on Sunday, March 22 at 10:00 am PDT. Kristie Scott, life coach and woman with PD will share what she’s learned so far living with Parkinson’s, and give us some helpful tips on coping with the challenging times we’re in.Learn about Kristie and her Evolution Cards on her website: https://www.evolvewithkristie.com Evolution Cards sold on Amazon and Kristie’s website. (not required for the meeting).
For more information click here. Registration not required but please rsvp to Twitchywoman18@gmail.com so that I can have an idea how many will join the call. I hope that we will continue to have these webinars on a regular basis while we are all stuck at home. If you know someone who would be a great presenter, please contact me.
Need some ideas for activities? Someone posted this on Facebook and there are a lot of great ideas for things to do.
We know that apathy is one of the many non-motor symptoms of PD, and yes, we are all affected by it at some time. I will be the first to admit that there are many days when I would rather stay at home and do nothing.
Dear Readers, I occasionally submit blog posts to other sites such as Parkinsonsdisease.net, which published this post several weeks ago. Explore the site and you will find a lot of really good information about living with Parkinson’s Disease.