How was your week?

The boxing program that I have been with for the past 5 years has been experimenting with other types of activities for People with Parkinson’s. (PwP’s)The latest has been a writing circle with a professor of writing from NYU. StoPD, which is based in New York, is the brainchild of Alex Montaldo, an actor/boxer and his wife Roberta Marongiu , who is a Parkinson’s researcher. They offer boxing classes in Santa Monica, CA as well as various locations in NY. Alex has added acting classes in NY and now a writing circle, both of which aredesigned for PwP’s. Since it is on Zoom, I have been able to participate from my home in Los Angeles.

Last week, we were asked to write about the Pandemic with the prompt “On a scale of 1-10”. I would like to share mine with you this week.

“On a scale of 1-10.”

This past week was a 7.  Why, with the Pandemic raging around us, would I rate the week this high?  Without the Pandemic, it probably would have been a 9 or 10.  We broke the law over and over this past week.  And enjoyed every minute of it.

We celebrated our youngest granddaughter’s second birthday on Wednesday.  We were even allowed into my daughter’s house for 20 minutes and got hugs from both kids.  That rates a 15 in my book. 

Then on Saturday night, we broke the law again.  Yeah, yeah, we are criminals.  We had 6 friends to our house for dinner.  We set up the tables in a big square on our patio so that only 2 sat on each side.  No one touched or hugged anyone else.  And I even threw everyone out of my kitchen when it was time to clean up.  They were just too close.  But the night was gorgeous and we had a fabulous time.

And last night, we broke the law again!  Oh no!  Send out the pandemic police!

We met friends at the beach in Santa Monica to see the plankton do their bioluminescence thing.  Huh?  Bioluminescence, otherwise known as Red Tide, occurs when certain plankten show their true colors – red or brown during the day – glowing blue at night.  Walking past all of those signs that said BEACH CLOSED, we made our way to the shore.  Our friends went on Saturday night after I threw them out of my kitchen and saw the ocean lit up spectacularly, but the plankten just didn’t cooperate much on Sunday night.  The waves after dark were more of a phosphorescent white than usual, with some blue sparkles that disappeared so fast you couldn’t be sure if you really saw them.  After an hour watching the ocean as the temperature dropped, we gave up and went home. 

So the week was pretty good after all. 

What we did see
What we did not see!

Our Last Hero for Parkinson’s Awareness Month and Writing Your Narrative

Don’t stop doing the things you love – PD is Progressive, yes, but you can adjust to the changes, just as you would adjust your sails

Bonnie Huddleston

April has been a busy month for Twitchy Woman, even with the Covid-19 quarantine. Two articles were posted by Parkinsonsdisease.net (the second one is below) and 7 amazing people were profiled as Parkinson’s Heroes. And if that is not enough, Sunday Mornings with Twitchy Women started in March and has had 3 terrific Zoom meetings for women with PD to connect with each other and learn something while under quarantine. The upcoming meetings are posted on the sidebar of this page.

Person in front of sheet of paper with writing on it; pen on desk.
from Parkinsonsdisease.net

Why You Should Write Your Narrative

By Sharon Krischer · April 24, 2020,

Originally published by Parkinsonsdisease.net

An underused tool for wellness is the concept of writing your narrative. When someone is initially diagnosed with a chronic disease, it can be quite a shock. The patient does not know the questions to ask, what to expect in the future, and what type of help he needs. It can take several visits to the doctor to start getting a perspective on how this disease is affecting someone in the long term.

This is especially true for People with Parkinson’s disease (PwP’s). Continue reading at https://parkinsonsdisease.net/living/writing-my-narrative/

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”

Christopher Reeve

Bonnie Huddleston

 Diane Ferguson says that Bonnie Huddleston, of New Orleans, was and continues to be the most influential person with Parkinson’s that she knows. She said “Bonnie was the founding member of our BIG Easy Fleur de Lis, a support group in New Orleans. She is an amazing person who takes time for anyone even if she doesn’t have the time. If it is important  to you, then she takes  that seriously. Bonnie was my mentor and still is!!”

People with Parkinson’s are happy and eager to help and be involved – but they cannot rely on their health to see a project finished

Bonnie and friend

Bonnie and I have been in contact about mentor programs for newly diagnosed patients and other issues for a while now. She has been an outspoken advocate for People with Parkinson’s for many years, but admits that it is often difficult to get things done as a patient advocate. She said: ” I am stunned, actually, by the number of ideas, projects, and important issues that have been stalled for one reason or another.  I am fairly sure that the same reasons are prevalent throughout the PD community. The PWP are happy and eager to help and be involved – but they cannot rely on their health to see a project finished, their caregivers are so overwhelmed with responsibility, that although they can physically commit, they cannot emotionally commit. ” 

The two programs Bonnie plans to get organized and initiated are:


(1) PATIENT MENTOR – this will be on the next Agenda of the Advisory Council as soon as we are out of “lock up”!   I have been meeting new members that like to, for coffee, and doing a lot of phone conversing for others.

(2) PD ADVOCATE TEAM – this is the project close to my heart.  The mis-use, ill-advised, lack of credible knowledge, toward the care of PWP in todays Hospitals and ER departments is both scary and criminal. Three members have saved their “Patient Care Diaries” in hopes that the “Team” will be successful in getting the ear of a decision maker at just one Hospital (to start that’s all we need).  We have recruited a willing Movement Disorders Specialist to work with us. Two months ago, she was promoted to head of Neurology at the VA Hospital in New Orleans!  This in addition to seeing PD patients once a month at two different Hospitals.  We have expanded the delivery of our “Rack Cards” – now a tri-fold PD Brochure – to include Primary Care Physicians who have a good knowledge of Parkinsons
Just as Hurricane Katrina changed our lives forever and took Doctors never to return, so, too, will Corona.  It will be ever more important to share “tips & tricks” for Living Well day to day with each other. AND THAT’S A GOOD THING!

What do I wish I had known at diagnosis?  “Don’t stop doing the things you love – PD is Progressive, yes, but you can adjust to the changes, just as you would adjust your sails – to continue your life and times with FAMILY & FRIENDS!”

To Bonnie Huddleston, Jon Pawelkop, Sue Edge, Eve Fischberg , Candace Mueller, Victoria Miller and Barry Blaustein, thank you for your inspiration and support for all of us with Parkinson’s Disease. You are just a few of the many People with Parkinson’s who are doing amazing things to make living a life with Parkinson’s easier for all of us. As Barry said last week: “I think all of us are heroes.”

The Right Attitude

I think all of us are heroes

Barry Blaustein

Victoria Miller

In his book, The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined, Tim Hague, Sr. shows how we can all learn to persevere in the face of daily struggles – or even life-changing illness. Victoria Miller, one of this week’s Parkinson’s Heroes has that exact “Never give up, never give in” attitude. Her husband, Bob Miller, tells her amazing story. 

Victoria with her grandson David
courtesy of Bob Miller

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.

Barry Blaustein

Barry with his daughter Kasey

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!

On Parkinsonsdisease.net this week

Keeping Your Sanity Under Quarantine

By Sharon Krischer · April 20, 2020

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.

One of the biggest problems we have had is keeping track of time.  When there is nothing to reference what day of the week it is or what time it is, everything becomes a blur.  To read the rest of the article, go to https://parkinsonsdisease.net/living/staying-productive-covid-19/

These Women are Real Life Parkinson’s Heroes in Their Community

When I asked you to send me the stories of real life PD heroes in your community, I received an email from Candace Mueller of Springfield, Illinois about her friend Eve Fischberg. Which was followed by an email from Eve praising Candace’s work in the Springfield Parkinson’s community. From their emails, I got the impression that they are really a power team in Springfield. Here are their stories as told by each other.

Eve Fischberg

From Candace Mueller

Eve and Candace

Eve is the founder and director of Joy of Movement: a unique nonprofit group providing adaptive dance classes at no charge to persons living with Parkinson’s Disease and other chronic neurological disorders along with their significant others or care partners.  My friend Susan White is my dancing partner and we’ve been under Eve’s direction for nearly a year.  We have truly experienced JOY of movement– even when not so graceful.

The Joy of Movement began in 2016 and now offers classes on Tuesdays, Wednesdays and Thursdays at First Presbyterian Church, in downtown Springfield.   Eve started this program in her, quote “retirement” from an impressive profession as an occupational therapist serving people in the greater Springfield community for over four decades. Eve loves music and dance.  She has used dance in her therapy work with children with special needs, people with dementia, and many others throughout her career. She also developed and currently leads a falls risk reduction program called Stepping Up for persons with dementia and their care partners under the auspice of SIU’s Center for Alzheimer’s Disease. 

Dozens of people living with Parkinson’s in the greater Springfield area have greatly benefited from Eve’s professional expertise and her training in Parkinson’s dance instruction by the Mark Morris Dance Group in New York City.  Eve has a special place in her heart for people with Parkinson’s which is evident by her enthusiasm in leading the Joy of Movement classes.

On Wednesday mornings I am blessed to experience an hour of exercise, scientifically proven to benefit me as I develop flexibility and gain confidence in movement, connecting my mind to my body.  As a social activity I also have fun. And I have met wonderful new friends dancing together.

Eve’s name describes her perfectly for me.  The traditional meaning of Eve is “living”—to live or give life–from the Hebrew.  When I watch Eve share with us her joy, it expands my world from a person living with Parkinson’s to a person living with joy. Springfield is fortunate to include Eve Fischberg.

Candace Mueller

From Eve Fischberg

Candace is a Parkinson’s hero herself, having mustered her amazing networking and organizational skills to create the Friends with Parkinson’s group, as well as to forge a relationship with the  Parkinson’s Foundation. (This event has been changed because of the Coronavirus) This will result in the first Care Partner Summit being offered in Springfield–an event which already has attracted a large number of registrants. Thank you,  Candace for your vision and for your generous support, as always.

 Candace was diagnosed with Parkinson’s 9 years ago. In addition to her carbidopa/levadopa medication, exercise has been her second medicine. The Joy of Movement dance class, yoga and chair yoga specifically for Parkinson’s,  Rock Steady Boxing, water aerobics and walking her 1 and half year old yellow lab Layla are a regular part of her exercise regimin.

Her third medicine is a wonderful support group of Friends Living with Parkinson’s who meet monthly in Springfield.  She says that “Eve was/is the key person to encourage me all along the way to establish the Friends group.” 

Springfield is lucky to have these two women who are doing so much for the people with Parkinson’s in their city. They are truly heroes to all who they have helped and inspired.

Superwomen by Jose Luis Garcia-Lopez : comicbooks
by Jose Luis Garcia-Lopez, DC Comics

Sundays with Twitchy Women

This coming Sunday brought to you in your own home through the magic of Zoom! Register today to reserve your space.

How I Learned to be a Fighter

Sunday, April 19 at 10 am PDT, Jennifer Parkinson Iljin, another PD Hero, will discuss her 15 year journey with Young Onset PD as a single mom, creating StrongHer Women & Neuroboxing, embarking on a 115 mile hike across Sicily for the upcoming documentary “Pilgrimage to Enlightenment” and a short Neuroboxing workout.  No boxing gloves required.

Registration required at  https://zoom.us/meeting/register/vJMrf-yrqDoo0Z8VOcPMBgXY4tpeqmFd6w

Raise Parkinson’s Awareness and a PD Hero from Australia

I don’t have any choice whether or not I have Parkinson’s but surrounding that non-choice are a million of choices that I CAN make.

Michael J Fox

This Saturday, Stay Home and Help Raise Awareness for Parkinson’s!

On Saturday, April 11, 2020, at 11 am EDT, 10 am CDT, 8 am PDT, I’m taking part in an attempt to break the world record for the World Record Awareness for Parkinson’s! Please join me!  It is to raise awareness for Parkinson’s Disease that affects more than ten million people in the world today. How great would it be to be a part of a world record?
Let’s face it, we are all staying at home practicing social distancing but that doesn’t mean we can’t all come together from the comfort of our homes and support a great cause and stay active!
Will you help me spread the word and forward on to others so they may join in the fun? There is no fee, all you have to do is click on this link (https://movement-revolution.com/5liveregister) to register and count yourself in!  Mark your calendars!  And then join in a workout altogether on April 11th!  In just 5 minutes, we can change the world!
#5LIVE 

Sue Edge Inspires all in Western Australia

submitted by Amanda Woods

Sue Edge

My Parkinson’s hero is my friend Sue Edge. Since being diagnosed with PD in 2010, Sue has worked tirelessly to raise awareness of Parkinson’s in her home city of Mandurah in Western Australia, and her work has spread to Perth ( the capital) and beyond. After beating the feeling of hopelessness and despair when finally (after 2 years of misdiagnosis) being diagnosed, Sue became an inspiration to both the PD community and also the community at large. She has become a great advocate for PWP, setting up displays and talks to community groups to share her journey and promote awareness and education. She has suddenly learned to paint (apparently PD opens up the creative part of the brain) and has held two exhibitions at The Niche, head office of Parkinson’s WA…donating a substantial amount of money to the Parkinson’s nurses fund. Sue was Parkinson’s fundraiser of the year in 2018.

Sue spent almost a year knocking on the doors of every gym in Mandurah and surrounding areas trying to get someone to implement Boxing for PWP and finally succeeded with a small gym. Now there is a thriving boxing class with participants showing remarkable improvement in their PD.

Sue also has just published a children’s book called ‘Our BobbleHeaded Nanna’ which is a true account of her and her grandchildren’s journey with PD, Pre- and post- diagnosis. She has also started creative workshops for people affected by PD that have helped many PD sufferers and their partners get out of the house, create great pieces of art and have a positive and motivated group of people to share time with. She has become the go-to person for people having problems with their PD, people having problems understanding their partner’s PD, people thinking they might have PD etc., all the while having PD herself. She suffers from very bad ‘offs’ and has to take medication every 2 and a half hours to keep functioning….some times really struggling to keep going. But she still forges ahead …. making a positive difference. In May last year she produced a play about PD called “Kinetics”, which received rave reviews and really promoted awareness. It also won Best Director, Best Actress, Best Actor and Best Overall Production at the Western Australia Annual Finley Awards 2019.

She is the Australian administrator for the Facebook page Start Living Today PD. She also started ‘Shakey Lunches’ for couples who have one partner with PD. Initially started as a way to get care partners together to talk about challenges faced, it has developed into monthly get togethers with 24 people where PD is hardly spoken about, where positive experiences are shared, great fun is had.

Life is not about waiting for the storm to pass ….. it’s about learning to dance in the rain.

Author unknown
Team Edge

Sue lives by two quotes and makes sure that we, her friends, use them as well. She is always spouting these….“Life is not about waiting for the storm to pass ….. it’s about learning to dance in the rain.”  Author unknown.   And a quote by Michael .J. Fox. “ I don’t have any choice whether or not I have Parkinson’s but surrounding that non-choice are a million of choices that I CAN make.”

In conclusion, Sue’s mission is to get the word out that Having PD is NOT a life ending thing …. it is a life CHANGING thing and  people with PD can still make a positive difference.

Sundays with Twitchy Women

How I Learned to be a Fighter

Sunday, April 19 at 10 am PDT, Jennifer Parkinson Iljin, another PD Hero, will discuss her 15 year journey with Young Onset PD as a single mom, creating StrongHer Women & Neuroboxing, Embarking on a 115 mile hike across Sicily for the upcoming documentary “Pilgrimage to Enlightenment” and a short Neuroboxing workout.  No boxing gloves required.

Registration required at  https://zoom.us/meeting/register/vJMrf-yrqDoo0Z8VOcPMBgXY4tpeqmFd6w