A Call to Create a Parkinson’s Legacy Council/Division.
There needs to be a Specific Parkinson’s Legacy Council … in memory for all those we lost due to Parkinson’s, and to continue to allow for a seat at the table for those like me who still have a voice and their loved one’s memory still matters.
Hoping someone sees this, listens, hears our call, and takes action by creating and implementing this going forward.
For six years since losing my mother, Sharon, to Parkinson’s Disease after an 18-year battle, I have searched for something I still have not truly found — a dedicated council, division, or support system specifically for those who lost a loved one to Parkinson’s.
We prioritize those living with Parkinson’s first, as we should.
We support caregivers and care partners second, as we should.
But there is also a third group whose voices matter deeply:
the families, caregivers, and advocates whose loved ones lost their battle with Parkinson’s.
Too often, after loss, people quietly disappear from advocacy spaces. Not because they no longer care, but because there is no place designed for them to continue grieving, remembering, healing, and advocating together. Some may just be unaware or unsure how or why to continue to advocate.
No one should ever feel alone after dedicating years or decades caring for someone with Parkinson’s.
I chose to continue fighting in memory of my mother Sharon because I do not believe those who battled this disease for years should ever be forgotten. Their stories, struggles, courage, and voices still matter.
Imagine the awareness, advocacy, research funding, and support we could build if families who lost loved ones still had a place to stand together.
This is my hope:
that someday there will be a true Parkinson’s legacy council, remembrance division, or support network ensuring no caregiver, family member, or loved one ever feels forgotten after loss.
Until then, I will continue advocating onward — for my mother, for every family, and for every empty seat at the table.
Their voices will live on.
We created an In Memory section https://togetherforsharon.com/in-memory/
In memory of all those who lost their battle with Parkinson’s and the caregivers who keep their memory alive forever. Their voices will live on.
See our journey at https://togetherforsharon.com/my-book-a-sons-journey/
A Son’s Journey from Parkinson’s Disease Caregiver to Advocate. This book is, first, a memoir of and praise for my mother, Sharon, who was my best friend through both our lives and explores her journey with PD. The book is a heartfelt recollection of the beginnings of her Parkinson’s disease symptoms and my caregiving to support through her battle with PD.
However, I also want to reach those who are not aware of Parkinson’s throughout the world. Until we ensure that others outside the local or regional Parkinson’s community are made aware, a cure will be further from our grasp. Others, too, may find the book helpful, especially for those suffering from associated diseases.
Even as an advocate, there are times when I struggle https://togetherforsharon.com/product/an-empty-seat-at-the-table/
An Empty Seat at the Table: Losing a Battle to Parkinson’s Disease, but We Still Have a Voice
An Empty Seat at the Table is a behind-the-scenes look at the obstacles faced in my journey and a call for those left behind to continue to use their voices to fight this disease in the name of those lost to PD so they will never be forgotten. It is also a compilation of interviews in memory of loved ones lost to PD and artwork by Parkinson’s artists as a way to visualize the struggles of the loss of our loved ones and the difficulty that we sometimes face advocating in their memory.
Let’s go forward all together….. Those battling today and their families… along side by side with all those who lost a loved one… TOGETHER.
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Want to share a Blog on a PD topic? Reach out to togetherforsharon@gmail.com
TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure
Do you have a story to tell, a journey to share, or a blog you’d like to write?
We are always looking for writers, bloggers, and Parkinson’s advocates who want to team up and raise awareness together.
If you’re interested, please email us at togetherforsharon@gmail.com.
You can also explore our blog here:
https://togetherforsharon.com/parkinsons-blogs/