World Parkinson’s Day / PD Awareness Month, 2021

This is my eighth World Parkinson’s Day and my 7th post on the subject (skipped 2018). You can read my earlier posts by selecting the Archives tab above and then Apr to view the post for that year. If you did that, you would see posts ranging from reporting on the annual Oak Ridge PD walk to ranting about awareness for the other 11 months of the year. In between are posts about cycling in the lobby of the YMCA, the Unite for PD campaign and quotes from other bloggers.

Last year’s post was a review of the book Ending Parkinson’s. The authors of this book have continued to impact Parkinson’s awareness with webinars and the Give a Dime about PD campaign discussed in last month’s post. You can find out more about the authors, the book and the movement to end PD at https://endingpd.org/ The book is now available in paperback from Amazon, Indie Bound and Barnes & Nobel with all of the proceeds going to ending PD. If you cannot afford to purchase a copy, email them at [email protected] and they will send you a copy.

The book has inspired the creation of the PD Avengers group which I have also discussed in an earlier posts. If you haven’t joined PD Avengers, please click on the link to the right and support the quest to END PD. This is not a charity nor are they affiliated with any one organization. The goal is to unite 50 million voices worldwide to build a sense of urgency to END PD. If you are already a member, please promote the group to other PwP’s, family members and friends. We are almost 3000 strong now, let’s double the number by the end of Parkinson’s Awareness month 2021!

“It does not matter how slowly you go as long as you do not stop.” – Confucius

3 Comments

  1. Tom, your communiques always seems to land pretty near where I am at any given time. When considering the 2x a year non-profit fund drives now being 3-4x a year, the limited scope of available treatment and the seeming lack of progress on a Parkinson’s cure, I have found myself very angry lately. After an industry-sponsored series of lectures, I suggested that every presenter be required to share or report one new discovery or new fact that moves toward a cure. Yes, relief of symptoms is important, but when I think about the number of people who struggle, how many years this struggle has gone on, and the bravery of those who have managed Parkinson’s much longer than I have, I do want to avenge.

  2. We’ve spent the last 20 years at many doctors, doing many tests, and being sent home to come back for our next worthless appointment. No one was willing to treat it until we changed doctors. He said when I rolled my husband in he knew it was Parkinsons. His orthostatic hypotension prevented him from doing anything in the mornings. Several meds made him so sleepy he was almost comatose. One helped some. My husband lost the ability to walk or transfer. More and more he was unable to swallow and couldn’t eat or take meds. Couldn’t sit up in the wheelchair. He started seeing things that weren’t there. Then he was briefly a prisoner in a nursing home where he died alone because I wasn’t allowed in.
    I wanted answers. I wanted an autopsy or someone to explain why I lost my husband of 53 years. He lost 20 years of functioning normally. His retirement wasn’t the joyful, adventurous time we’d planned.
    The frustration was overwhelming.
    Why is there no effective treatment for this.

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