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.”


2 responses to “Our Last Hero for Parkinson’s Awareness Month and Writing Your Narrative”

  1. Hi Sharon!

    In response to “Why You Should Write Your Narrative,” I thought you might enjoy one of my recent blogs, My blogs are musings about a lot of things — my husband and our relationship, the pandemic, trips in our trailer… They are weekly, and I try to limit them to three to five minutes.

    I wrote one a few weeks ago called “Life with Parkinson’s.” It’s not a complete history of my disease, but seems to have inspired people. Here it is: https://pearlsofpauline.blog/?s=Life+with+Parkinson%27s

    I hope you enjoy it.
    Pauline Urbano Hechler

    1. Pauline, I enjoyed it very much. Please send me an email at twitchywoman18@gmail.com. I want to respond privately

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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.