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Wednesday, May 1, 2019

Parkinson's Awareness is Targeting the Wrong People

Today is May 1st and Parkinson's Awareness month is over. Many people around the world have taken time out of their lives to visit their city mayors, county supervisors, state and national government representatives to have April proclaimed officially as Parkinson's Awareness month. 

A few years ago, I was one of those eager people. Then I realized it was a waste of my time. Having politicians create a document does nothing to help those of us who actually have Parkinson's.

Does this help anyone with Parkinsons??

The same applies to writing Letters to the Editor. Who does it actually help?? Oh, if you mention that there is a local Parkinson's support group in your town, one or two people might find out something they didn't know. But if they really wanted to find a support group, all they had to do is Google "Parkinson's support group" and the name of their city. That's how I found my group. If your town doesn't have a group, you can start one yourself or join an online support group. The friendly folks at the Parkinson & Movement Disorder Alliance can help you. 

If you want to really know how to help people with Parkinson's, educate the health care people we have to deal with. Give scholarships to medical school students to choose neurology as a specialty. Then convince the top neurology residents to become Movement Disorder Specialists. Then give these specialists incentives to set up their practice in smaller towns and rural areas.

My blog is called Parkinson's Humor, but there is nothing funny about having to drive 200 miles and deal with big city traffic to see a Doctor who knows about Parkinson's. 

And it's not just the lack of quality neurologists that is a problem. Most primary care providers and non-neurological specialists know zilch about Parkinson's. It is up to you to educate them.   

So instead of visiting politicians and writing letters to the newspaper, I decided to try to get telemedicine for Parkinson's in Yuma, so we don't have to drive 200+ miles.

It took me six years, but I finally managed to get telemedicine in Yuma with a Movement Disorder Specialist based out of Phoenix. I reached out to several MDS' until I finally found one who was willing to give it a try: Maria Ospina MD. Then I did the local leg work, I went and found a local doctor who would allow use of his staff and office space. Now, several local Parkies see her via a computer screen right here in Yuma.    

And that to me is the best Parkinson's Awareness campaign there is. 

Now it's YOUR turn. 


  1. Thank you Bev!! This is the better way to help bring awareness to PD. I did my bit for ten years, talking to PharmD Students about what medications really DO to us and how the words "possible side effect" are so meaningless to docs and can be worse than PD for us. Etc.

  2. Bev����
    You say it so well! Thanks for all you are doing!

    I’ve learned to honor my PD through (perhaps ironically) it has enhanced my creative reach which inspired me to produce the attached 1 minute spoken word art video:

  3. I agree and love what you've done. This last year ive shared my podcast to more non Parkinson's audience. It has raised awareness but It has also spured me on to be more vocal.