Parkinson’s Awareness Month 2015

We are home from our extended beach stay and, while we are missing the beach, it is spring time here in Eastern Tennessee and the flowering trees and bushes are beautiful, the grass is green and the daffodils and tulips are in full bloom.

April is Parkinson’s Awareness Month and there have been many excellent posts by the Parkinson’s bloggers that I follow including one by Corey King who blogs about his journey with early onset Parkinson’s Disease.  His latest post, Acts of Kindness, talks about this being his sixth Parkinson’s Awareness Month and touches on our desire for a cure and how long it will take for FDA approval even if a cure was found today.  And then he says this about awareness:

 “Awareness is valuable when it is followed by action. So, for me, this April and every April to follow until my last April will be Parkinson’s Action Month. If you’re inclined (and I suspect you might be, if you read this blog regularly), be aware, and ACT on your awareness. Walk or run in support of research, and form a team or obtain sponsors. Comfort a friend who needs it, and instead of saying “let me know if you need anything,” ask, “Can I bring you dinner on Thursday? There’s a new exhibit at the McNay – wanna go with me on Saturday?” Learn and be aware; then teach. Then, come together and act.

Money and research is important, but connectedness and community is just as important. Money and research will eventually enable us to find a cure. And our connectedness will help us get through this night, and the next. The American Parkinson’s Disease Association says it very elegantly – their stated mission is to “ease the burden and find the cure.” We may not be close to a cure for PD; on the other hand, there may be one discovered tonight. In the US alone, however, there are more than 1 million people with PD that have to get out of bed tomorrow, and use the gift of life as well as we can. We can’t rely solely on the hope for a cure, but while we anticipate one, perhaps we can rely on each other, and on you.”

 I found Corey’s thoughts on awareness to be right on target and in line with what we have learned in the last two years: we are a community and we need to stay connected and we need to support each other.  So we will continue our efforts to find volunteers for clinical trials, to advocate for patient involvement in the research process, to attend our local support groups and to reach out to other PwP’s via this blog and as Trial Finder Ambassadors because, as Corey states at the end of his post:

… if we can ease the burden, maybe we can make the road to a cure easier to walk.”

You can read Corey’s entire post here at his blog The Crooked Path .

On April 25th PK Hope is Alive support group will hold a local Parkinson’s Unity Walk in support of the national Parkinson’s Unity Walk held the same day in Central Park.  The great thing about this event is 100% of the proceeds go to Parkinson’s research funded by seven major U. S. Parkinson’s organizations.  Mara and I will be walking in the local event and will also provide an information table for the Michael J Fox Foundation Trial Finder, our first event as Fox Trial Finder Ambassadors. And we have been asked to make some opening remarks before the walk starts! If you are in the Eastern Tennessee area we would love it if you can join us and other PwP’s and their families and friends for a relaxing 1.2 mile walk around Bissel Park in Oak Ridge.  More information about the local event can be found here.  If you are unable to attend but would like to support us and Parkinson’s research you can make an online donation here.

We are working to keep up the exercise level we established at the beach and I am completing a review of the various exercise options available for PwP’s and hope to have that done by the next post.  In the meantime don’t forget to sign up for Fox Trial Finder and Fox Insight and help advance Parkinson’s research.

 

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

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