Parkinson's: The Yin and Yang of Life

 Snarky Parky & me

A Journey Into Parkinson's with Nancy Mellon

Blog Coordinated by Corrine Bayraktaroglu

The Rest of the Story

Friday at 12:00 noon

Kathunk!- I heard my head hit the rug when I fell backwards . I was not sure how I got on the floor.“I'm fine” I said shakily. Steven was kneeling beside me and Auntie Christine had come running. She was checking my head, “Can I get you an ice pack?” Steven spent the day taking my Blood Pressure, as it rose from very low and shot into very high. For a couple of hours, he tried to get a hold of my 3 Doctors. (Yes, that was a pointed comment. Three! And we couldn't get a hold of anyone. GRRRR)

Friday 4 pm

Steven had finally gotten a hold of a staff person at my Movement Specialist's office. She had said she would get our message to a nurse, who would call us back. Two hours later, at 4, we still hadn't heard from anyone. Steven was frantically finishing up a MyChart message to one of my Dr.s We needed to go. We were due at the Senior Center to help with the set up for the Puzzle Hunt.

By this time, I was feeling, anxious, tottery, still foggy brained, but good enough to go.

• You don' t usually feel anything, that gives you a clue to your high blood pressure, (except maybe fatigued, from all that blood pounding at your veins.)

• When your blood pressure is tanking, (the professional word,) you feel dizzy and unbalanced. With low blood pressure-your head is not getting enough blood. You start to feel like you might faint. (You need to sit down quickly and if that doesn't clear it fast enough, you need to lie down. That usually does the trick.)

On Wednesday and Thursday, Steven and I had collected and boxed all the art prizes (including 4 heavy boxes full of painted rocks! Thank you to everyone who made them!) Steven had found the wooden blocks, the art stands, acrylic pedestals and a wooden shelf by searching in the basement and in the garage. He had lugged up, the large bin of lace, from the basement, so I could go through the lace and choose what I needed. I had wandered my art studio and our home looking for and trying out stuff that I could use to hold the multi media art on different levels, to prop it up and to decorate the prize tables with.

(All the while, we were taking my blood pressure whenever I felt woozy, Since the beginning of April, we had been trying to collect enough information to help us and my Doctors figure out what the snark was doing. We had stacks of papers that we logged in the date, the time, my BP, when it was taken, whether I was standing, sitting or lying down when it was taken, when I had taken my Levodopa/Carbidopa pills and when I had eaten. Yep it is a pain, but it is a complicated issue, that we are going to solve.)

Self Efficacy, Susan!

I finally decided on 2 wooden bowls, a 2 tiered cake rack, push pins and a large piece of black foam board and ….assorted other stuff. We had also carefully packed the Grand Poobah's Crown (made by Zyn, our in-house, bead and textile artist, and packaged by Zyn, beautifully in a large clear box tied with a big, sumptuous, red ribbon.)

Tomorrow,

The Puzzle Hunt

would begin with a Surprise!

(A surprise for the Grand Poobah herself!)

A Crowning Ceremony.

 It was all packed into our car, ready to be taken to the Senior Center.

Let's go! Let's go! Yeah!

Steven is my Art Shlepper.

“Shlepper” is Steven's self proclaimed, job title. It started years ago, when he began shlepping my art to Gallery Shows and to “Art On the Lawn,” Village Artisans, Summer Art Fair.

On Friday, he schlepped about a ton of Puzzle Hunt stuff. (Since Friday's fall, he has hauled me everywhere too. He keeps a firm grip on my arm, worried that I will fall again.)

I wasn't feeling dizzy anymore, just very tired and slow and foggy brained. My BP had decided to go high by then.

At the Senior Center, Caroline, Pam, Maggie and Holly had already set up the front check-in tables, the snack tables (as far as they could, after all we were talking Ice Cream Sundays!.Yum!) and the guests' tables.

When we arrived, they joined in to help set up the prize tables.

Sometime during the set up my phone rang. I heard a phone ringing as background noise, I ignored it. A little while later, (my Guardian Angel tried again) Caroline mentioned “someone's phone was ringing.”Anyone need to check that?” I was busy finishing the tables and Steven was taking pictures of the art and the Trophies. Neither of us were listening.

Friday 5 pm

We were done! YEAH! How spectacularly abundant and awesome the prize tables looked! Thank you to all the Artists that created art for us and donated their creations and to all the businesses who generously gave prizes from their stores and those that donated gift cards!!

As we were saying goodbye, Steven and I both suddenly stopped,

We had the same thought. The phone call,! It could be my Doctor or his nurse calling back!

We rushed out side to check my voice mail.

It was his nurse, she gave us a number to call back.

We did.

It was after 5 pm, We couldn't get through to anyone. It was too late.

We wouldn't be able to talk to any of our Doctors before Monday. Damn, Damn, Damn.

Tomorrow, on Saturday, all of my family would be at the puzzle hunt from 9:30 when it started. I wouldn't be going there until 11:00. I would be... home alone. Dun dun daaah- joking aside, I was nervous about it. Steven promised to call and check in on me. His plan was to peel off from the rest of his team at 11, to come home and drive us, (a whole 3 blocks) to the Puzzle Hunt Ending Ceremonies.

Saturday 9:30 am

It's Puzzle Hunt Day!

I woke up very excited and happy.

But I was off on my meds, which means that it was going to be a hard get up. I would be stiff and slow. But that didn't stop me smiling. I felt good, it was Puzzle Hunt Day,!

I would be seeing a lot of friends, I knew Sue was coming with her family! I had not met them before and was looking forward to it.

From my weekly, journal writing group, my dear friends Heidi and Jenny would be coming.

Jill who is our much-loved, Dance Teacher for the Senior Center's, PD Dance class, might be coming, (I had my fingers crossed,) “Tom The Bomb” was coming. He had graciously accepted to be part of my Grand Daughter Shiloh's “Exploding Bomb”part 2 team. I was also excited, when Judi had said her daughter would be visiting her then and they were both signed up for a team!.

I was hoping that my friend Theresa from The Village Artisans, (A group of more generous artists would be hard to find!) would be able to come. She had taken a bad fall and wasn't walking too much yet.

I was tickled pink that my whole household, (only Kelsey couldn't come because he is a Mailman, and they never stop!) had agreed to spend their Saturday morning puzzling and that my little grand daughters would be thrilled by it all. Especially with the Ice Cream!

And lastly, I was very excited to present the 2 secret trophies that I had made for my friends and fellow puzzle hunt committee members- Caroline and Holly. (They had both said yes, to my goofy idea of having a Parkinson's Puzzle Hunt in the first place. And they both brought talents to the table that made it possible for it to happen.)

I was looking forward to so much!

Saturday 10 am

What I hadn't expected was how much my neck and back hurt when I tried to get up off my bed, Saturday morning.

I tried 3 times with the normal scooting of one leg over to the edge and plunking it to the floor and then the hefting, with both hands clasped around the other leg and the weight shifting, teeter-tottering lunge over to a sitting position. (Yep, it really takes all of that when I get up past my medication time. But it means I slept in!!)

HUH?

It didn't work?

I couldn't lift my head?

(I know it sounds ridiculous, but I didn't think about the Kathunk! to my head, the day before, until later.)

I tried it again and failed again,) moving my neck by inches by yanking on my hair.

Then 1.2.3... with a huge effort, (it was the Puzzle Hunt! Dag NABIT! I WAS NOT GOING TO BE STUCK IN MY BED!) with one hand clutched in my hair and yanking hard, harder, hardest! (OMG, I think I am going to yank out all of my hair!) and the other hand wrapped around my distant leg and pulling, teetering... I sat up!

Saturday 11:30 am

It was a morning of warm laughter, hugs, more hugs, Family and Friends and families of friends. It was a perfect love mash. When I walked in the door at the Senior Center at 11:30, pretty much every one was there already. The place was so alive - humming with cheerful chatter. I was greeted practically at the door with wonderful hugs by Jenny and Heidi. As I looked around, I spotted my kids, Shiloh was waving at me. Then Sue came out of the busy crowd and gave me the most glorious hug. Later on, she corralled her 4 little grandsons and lined them up and I got to meet each one of them, (oh my! 4 little boys! One a set of twins!) and then in line was her son's beautiful, (brave) wife and lastly her son, who shook my hand and smiled at me and said he was glad to meet me. (I really liked him Sue!) Then I saw Theresa, she gave me her big smile, her husband and her grand daughter were with her. She glanced down at the wheel chair, she was sitting in and said “I had to come in a wheel chair, I can walk around home now, but didn't think, I was up to walking the 3 blocks of the hunt.” Thank you Theresa. You are da best!

The puzzle hunters, had mostly finished up their last puzzle and many of the guests had picked out their art memento. Some had already chowed down on their Ice Cream Sundays. I'm sure my little girls had. Tom's Grocery had gifted the puzzle hunt with yummy toppings. (And a full tray of different colored sprinkles! Someone at Tom's knows my little girls!) It was time for the awards ceremony to begin. We were already celebrating friendship and community.

Take care, my friends,

Nancy and the Snark.

P.S. We are still researching my BP challenge. Any tips or ideas would be gratefully received