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!

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


3 responses to “Raise Parkinson’s Awareness and a PD Hero from Australia”

  1. I see there’s a group for couples who have one partner with PD.  Is there a group for couples where they both have PD? Five years ago I discovered I had Parkinson’s and my SO told me not to worry, he would take care of me.  We had been living together for 8 years at that point and been together for 10 years.  I’d heard of many women whose SO took off once he heard about her disease (not PD) but Larry stayed by my side during testing and confirmation of my PD and was wonderfully supportive.   Then a year and a half later, and seven and a half years after his stroke, he was diagnosed with Parkinson’s.  Interestingly we seem to have opposite side affects from each other so we are able to truly help each other – my walking and flexibility are excellent but I’m having strength issues where Larry has difficulty walking and has balance issues.  We’ve both found our twice weekly Parkinson’s exercise classes to be tremendously helpful both in exercise and in forming new friendships. Still I feel like there are issues that we have that couples with only one partner with PD don’t have.  Do you know of any online groups like this?

    Sent from Yahoo Mail for iPad

  2. Great feature article on an inspirational, productive woman! I’m bummed I missed the 11am 5min exercise 🌍 challenge across our world! I’m friends w Jimmy Choi (on Facebook , lol) and saw it , there too, after it had happened.
    Sometimes I have to force a retreat from too much news and social media—as I get overwhelmed trying to “know it all” and “spread the word”. The perpetual cheerleader 📣. Other times, I retreat and am a dog mom lingering at the farmers market —as if to avoid return to this reality called COVID19.
    Glad y’all are here. Strange times, this Covid.
    See y’all next week for weekly chat? Ive not seen one posted for today (perhaps in observance of Easter, Sharon )?

    1. Amy
      No chat today. Doing it every other week for now. Glad you enjoyed it. I have 3 more meetings scheduled. Don’t forget to register for each one separately

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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.