Another take on World Parkinson’s Day

This World Parkinson’s Day, we’re calling on those impacted by the disease to stand up, speak out and unite to end Parkinson’s. We can break the stigma around our disease, lead the call to fund medical breakthroughs and together we can put Parkinson’s in the past.”

PD Avengers website 4 -11-2022

I don’t want to sound cynical about World Parkinson’s Day/Month, but we have literally been bombarded with information for the past 11 days about it. Every year we are encouraged to “celebrate” Parkinson’s Awareness Month, but honestly, there is not much to celebrate.

A recent twitter post by a Parkinson’s friend, Sree Sripathy, has stirred much conversation in the PD community.  Sree says:

The response has been overwhelming.  There are many different answers voiced by leaders in our community.  It seems that very few know what we are trying to achieve with PD awareness.  There is no  uniform message that we are trying to convey.  Do we want to educate ourselves?  Our families and friends? Medical professionals?  People without PD?  How can we best advocate for ourselves?  Who needs to be aware of PD anyway?  Why? So many questions…….

I responded:
“guilty as charged. But if it encourages one person to educate one person w/o PD, then we have done our job.”

I am no longer sure if that is the right answer. After all, we need to educate others about PD year round, not just in April. And for the last two years, since the beginning of the pandemic that is exactly what we have been doing. There are lectures and classes year round sponsored by the Parkinson’s Organizations that are available to anyone with an internet connection. In April, not much is different except that there are even more classes, lectures, symposiums, etc., available on Zoom.  We could be online 24 hours a day learning about how we can improve our lives with PD.

This month we also have a new logo -The Spark- to use, courtesy of PD Avengers.  Those not in the inner circle want to know what happened to the Tulip?  Why was it changed?  Do we use both?  

And what are we learning that is new?  Well, not much.   There still is no cure.  Many women and Young Onset people still have a difficult time getting the right diagnosis because they don’t fit the model of a hunched over older white man with a tremor and shuffling gait.  In addition, there are many well meaning neurologists and general practitioners who try to treat PD with their limited knowledge about the disease, instead of referring someone to a Movement Disorders Specialist, delaying needed care.  We need to find effective ways to change this scenario, perhaps starting with bringing more people with Parkinson’s to talk to our medical school students and to hospital staff meetings to dispel this image for those who will be treating us.

Yes, we now know that we have to exercise – a lot.  And our diet should include only organic veggies and fruit to avoid pesticides, lots of fish and grains and exclude meat, poultry, all dairy, canned foods and more.  Dr. Michael Okun, recently remarked when asked about a PD diet: “enjoy your life – eat the things you like.” I agree. Life is too short and we should enjoy the things that we like, especially if that includes chocolate or other treats.

Some of us follow the rules, exercise daily eat right and yet, our condition declines rapidly.  Others don’t exercise at all, eat red meat and many other things on the do not eat list and do great.  Go figure.  It is hard to find a uniform message when we have a disease that is so different for each of us.

With that, I hope you make the most out of World Parkinson’s Day, learn something new and educate someone else. We owe it to each other to make our lives better with Parkinson’s.

For a more upbeat take on World Parkinson’s Day, I encourage you to read my friend Tom’s blog that came out today It Is What It Is.


4 responses to “Another take on World Parkinson’s Day”

  1. rocksteadyfighter Avatar

    Boy Sharon, you are spot on with this one. It is not something to celebrate but maybe it will help raise awareness. I do feel the PD community is all over the place with their messages and maybe it is because we all think something different is the most important to share (Fund research, let people know about exercise, don’t go it alone, educate the docs, change legislation…). Maybe it is because there is so much to do and it is all important.
    Sometimes I just want to throw up my hands and shout, “Will somebody somewhere just please figure this whole Parkinson’s thing out so we can move on with life?” I am so over PD.

  2. DawnElla M. Rust Avatar
    DawnElla M. Rust

    I’m struggling also. Do I get a SI injection for my hip? What about bladder botox? Can’t I just go poop? Is the dehydration connected to my allergies and my full ears? Why does my neck hurt? Can’t I have one day that doesn’t hurt? My body is rolling inside and I can’t sit still to mediate or just be. Is this my new normal for 12 years in with PD or is it my age? I just want to be…

  3. Victoria King Miller Avatar
    Victoria King Miller

    Here’s the thing for me– When RSB first came out, I thought it was the be all/ end all for me. However, after a broken right heel bone, a torn labrum in my right hip, a torn rotator cuff in my right shoulder, and 2 torn menisci in my left knee, guess what….it is NOT the best form of exercise. Sure, it is “cool” to say you are a boxer, but people…really? Is it worth all the injuries? You have got to have a certified physical therapist as your teacher in order to have your modifications take into account all that matters!

    Also, as for a cure for Parkinson’s….ha! The world (and especially the US) is run by big pharma who are the ones to come up with a cure. I don’t believe that it is on the horizon or will come in my lifetime because big pharma makes too much money from us all treating the symptoms of Parkinson’s Disease. After 20 years of this disease, I am still waiting.

  4. I agree that having a day/week/month for awareness is a mixed blessing. Thank you for these thoughts, Sharon.

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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

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