This Job Called Parkinson's

 

A Journey Into Parkinson's with Nancy Mellon

Coordinated by Corinne Bayraktaroglu

“This Job Called Parkinson's”

Quote from Neil

Some days seem to be all about Parkinson's.  Today, I listened in to a 3 hour, 9 am-noon, Parkinson's webinar by the Ohio State University Movement program.  (To be precise, by the time I remembered today, I only listened to the last hour of it. ) But I spent another hour signing up for a free, weekly Zoom Voice Class they told us about. (Sorry, I started this post a couple of weeks  ago. Since then I have already written to you about participating in Pam's wonderful singing class.)

And then I checked out a Parkinson's Sleep Research project that was mentioned.  It's about using light therapy.  Finally, I napped.  I am soo tired these days. Hence the interest in the Sleep Research that is looking for Parkys to work with.

 I'm not sure that “Parkys” is the right thing to call us.  One time in our PD Dance class, Tracy said she tries to remind herself that she is not Parkinson's.  What do you think?  It is cute, but my husband grimaces, when I call his dad cute.  Steven thinks it is demeaning or trivializing to call an old man cute. (But he was cute! And he married a second wife when he was 80, because she thought he was cute.) So should I not say “Parkys?” If you want to- vote in the comments.

Last night, I filled out the Electronic Informed Consent form for the Parkinson's Foundation's PD GENEration Genetic Registry.  Got to do my first wonky online signature!

So I am officially part of 2 research projects now. Steven and I are both part of the Michael J. Fox Foundation's PPMI project too.

Both of these are about collecting massive amounts of information for researchers to use. They both seemed like something I could do pretty easily.  Anyone with or without PD can sign up for them, you don't pay anything or take any medicine for them. For the genetic testing one, they send you a kit to do a swab of your mouth. The more people involved in them the more chance there is for scientists to make a breakthrough with Parkinson's.  If you would like to sign up go to the Parkinson's Foundation web site and/or the Michael J. Fox Foundation web site.

 I am doing fine. I know I am blessed. I can get myself out of bed, get myself dressed, move around, do some chores and write and speak what I want to say. But lately, I am feeling a bit blue.  I think it is  the iffy sleep thing. Last night, Steven and I had a good laugh as I reread some of my gratefulness log and found how many of them mentioned sleep!  And this was 2021!  It has become the first thing I ask my family each morning. “How did you sleep?” Sheesh.

Anywho, on to other thoughts. Here is something that feeds my soul.  Last night, I was rereading “My Grandfather's Blessings” Stories of Strength, Refuge, and Belonging by Rachel Naomi Remen,M.D. I would like to end this post with a quote from her book:

“Strength lies in community.”

 

Welcome to our community,

Nancy & the Snark

Footnotes from Corrine

I don't see someone being called cute is demeaning but  I can get how sometimes some might feel it infantilizes an adult man.  So I don't know if there is a right or wrong answer. Some olders feel being called sweetheart or honey is patronizing, but for me it depends on who is saying it and where. IF there is kindness behind being called cute or sweetheart I'm going to grab it.  You can call me cute any day flowerpot.  

As for  the term Parky's, that is a tough one. If your life becomes consumed by activities and consequently lifestyle choices based on a serious illness then it does become a major part of who you are.  Isn't is just another one of the hats you wear in life,  like wife, mother, grandmother, artist, friend, parky etc etc. The key being that you don't let that be the ONLY hat you wear, but just another aspect of the whole you.  Sorry I'm rambling.