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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Christmas Boogie

Terri Reinhart

Christmas traditions are important.  We have many family traditions that we need to teach our grandson.  It’s our job as grandparents.  I try to discuss this with him, but he’s not too interested.  He just wants to play fetch.  Mattheus doesn’t play catch, he wants me to throw the ball so he can crawl to it as fast as he can, grab the ball with his hand, and bring it back to me, grinning.  Some children grow up to be doctors or lawyers or teachers.  Our grandson is growing up to be a retriever.

Baking is one of my most cherished holiday traditions and I was making my annual Christmas truffles the other night.  Before I could finish them, I needed to make a trip to the grocery store.  I wanted these to be good.  So, off I went to purchase dark chocolate, more cream cheese, and almond extract. 

It was 7 pm and I should have known better.  Attempting to go anywhere and accomplish anything after dinner is not the best idea.  No matter how the rest of the day has gone and no matter how well my meds are working, I do not function in the evenings.  I was determined to have truffles done that night, however, and I wasn’t going to let anything stop me. 

I made it to the store and took myself to the baking aisle.  The choices were overwhelming.  What should I get?  I stared, glassy eyed at several shelves filled with different types of chocolate.  After an hour or so, I decided to get two each of the Hershey’s special dark, premium, ultimate, incredible chocolate chunks and the Ghirardelli’s unique 63.725% cacao, gourmet, we want you to know we are chocolate experts, extra large chocolate chips, just to make sure I wouldn’t run out.  Now I only had to pick up the cream cheese and almond extract and I could go home.  No problem. 

I said No problem. 

I was stuck.  My brain made several attempts to send communication to my feet, but all were returned with the following note from my central nervous system:  “I'm afraid I wasn't able to deliver your message to the following addresses.  This is a permanent error; I've given up. Sorry it didn't work out.” 

A service dog would have been helpful.  There are dogs being trained to help people with Parkinson’s disease when they find themselves in just this situation.  The dog would have come close and put its paw on my foot.  This gives a cue to the foot somehow.  Maybe they act as a canine courier to make sure the messages get delivered.  These dogs are also trained to help counterbalance when their owners start to stumble.  I’ve heard that Great Danes are good for this purpose. 

I didn’t have a dog with me so I had to try a different tactic. 

Music.

Of course!  The store was playing Christmas music.  Using movement methods learned in Yoga class and old high school socials, I started to listen and move to the music.  The hope was that if my upper body was moving, the lower body would soon start to worry that it was missing something and decide to catch up.  Ignoring the other customers in the baking aisle, I started to jive.  Sure enough, the feet suddenly started paying attention.   Great!  I could move as long as I was dancing through the store. 

I danced to the spices and grooved my way over to the dairy section.  On my way to the checkout, I stopped briefly to see what bargains were in the sale bin.  I nearly panicked then because my feet froze once more.  I also realized that the music had stopped.  Someone must have reported an odd customer dancing to “Have Yourself a Merry Little Christmas” and the store decided to take precautions.   I would have to provide my own music and sing as well as dance, if I was to get home before morning. 

I tried several songs before hitting the right one.  “I’m dreaming of a White Christmas” was definitely too slow.  “The Holly and the Ivy” would have been just right, but I couldn’t remember all the words.  I settled for a simple rendition of “Jingle Bells” and went dashing through the store.  I paid for the groceries as I hit the chorus and waved aside help to the car with an “Oh what fun it is to ride in a one horse open sleigh”.

When I finally made it home, I was faced with a new challenge.  The messages being sent to my limbs were obviously getting jumbled en route because I found myself walking places to which I had no intention of going, like straight into the wall.  Then ricocheting off the wall, I sidestepped to the counter, where I bumped and propelled myself backwards into the doorway.  The Great Dane would have been helpful here, if he could have figured out where I was going to go next. 

I’m not planning on getting a dog.  Not in the near future anyway.  Maybe I’ll just have to wait till Mattheus is a little bit older and taller.  He might not mind helping his grandma out a little.  He could come close and step on my foot for me.  If he continues to be as tall for his age as he is now, he would eventually be able to be my counterbalance when I stumble. 

Or else we can just play fetch.