A Day in my Life with Parkinson’s


Yesterday was quite an experience and I thought I would share some aspects of my life with you as I travel down the road with my uninvited partner Parkinson’s.

First lets say I have the most wonderful husband.  Who goes with me to every doctor visit, gives me a back rub almost every night so I can fall asleep, listens to my complaints,  sometimes drives me down to poker, plays golf for a few hours while I play and then comes and waits for me until I’m done. And all while taking care of business, traveling the country singing and much more.  I try valiantly to not be a ball and chain and he supports me in maintaining as much independence as I can handle.  And I think he still thinks I’m kinda hot!!!!

So let’s go back to yesterday.  I wanted to enter a poker tournament (what else!) and see if I could make it to the second day and play for a piece of the $500,000 prize pool.  Now lately I have decided not to drive the freeways anymore.  (Way too stressful even if you don’t have Parkinson’s)  so either Don, Uber or one of my bff’s who has been driving me lately was  the option. Don and Andie were busy so it was Uber.  (By the way, anyone interested in a 1999 Cadillac Eldorado?  I love that car!)

I get down to the casino. I enter the satellite and my day of poker begins.    After three hands are played I get a hand to play, pocket Q’s.  I make a substantial bet and I find myself  being raised and put all in.  This is the fourth hand of the tournament!!!  Ok here we go!  I call.  I may be done after 3 hands….. He smugly turns over KK and I’m packing up,  but by the river I have a straight and he’s packing instead.  In poker no matter how good you are, sometimes you have to get lucky. That was my “one time!”  I am now chip leader, and Mr. Toad’s Wild Ride begins. 

Later I get moved to a table where there are at least 3 guys I have seen on TV on the World Poker Tour or the WSOP.  I write a text to my husband and say “I am now sitting at a table with at least 3 pros.” He texts back to me “You are just as good they are!” I love my husband!  One of the pros I have played with before and he always targets me and tries to get me out.  Let’s say this time he took a chunk of my chips. (Refer back to paragraph 1, where I say “sometimes you have to get lucky” – this time he did!)   So, I survived.  But, I am swimming with Sharks!  Notice the capital S!

After a while my table is broken and we’re all sent to different tables. Play continues.  Now remember, I not only have to watch the players, play my strategy, and keep my cool,  but…I also have to manage my medication, take pills every 2 hours and fifteen minutes exactly, eat every 2 hours ( not only because I am always hungry, but because it helps alleviate my symptoms for some heretofore unknown reason!), and… a whole mess of other stuff to deal with because of my Parkinson’s.

Well an hour or so later, I see the pro that always tries to take me down is now out, and I am still playing!  Chalk one up for the parky poker player!  Then one of the other pros (whom I sure some of you poker people would recognize), is out, and I am still in.  Put another check mark next to the other one, and my day is made. Now I have lasted longer than 2 out of the three pros from the other table.  Maybe I’m one of those sharks!  But with a lower case s and Parkinson’s!

But alas, I am knocked out and I don’t make it to the second day.   I pack up all my paraphernalia.  I travel with so much because of my Parkinson’s. 

Now I am heading out to get an Uber home.  I should add that by the end of a day and taking all the meds that I do, I wind up with a lot of Dyskensia, which can look like swaying, and a bit of unbalanced dancing to put it nicely.  But basically a lot of people think I am drunk because of this (common problem for us PWP – people with Parkinson’s).  I am not.  I don’t drink because of all the meds.  Anyway, I am in front of the Casino calling Uber, standing next to the security guard.  ( I like to wait by security guards).   This man walks up to me and asks me if I need help.  I say no, as I am digging in the black hole that I call my purse, for something.  He says to me “you can’t drive home.”  I am now standing outside the Hustler Casino, explaining to this stranger that I have Parkinson’s, and I am not drunk!  He tells me he is a veteran and he just wants to protect me.  I tell him I have called Uber.  He says he is going to wait over by the bench until I am safely picked up.  I watch him as he goes over to the bench, where he stands and waits.  What a mensch.  At first I thought he might be hitting on me.  But this guy was for real.  He gave me my space, all the while watching me, as I waited for the driver to show up.  After three or four minutes my Uber arrives.  As I drive away I wave to him.  He nods. 

It was a sort of surrealistic end to a crazy day.