Parkinson's: Today I Feel 140

 A Journey into Parkinson's with Nancy Mellon

Coordinated by Corrine Bayraktaroglu

Art by Corrine Bayraktaroglu

I wish that was in wisdom years, but mostly it is in body slowness and brain fog.

 It's 9 am. at the Cleveland Clinic, Steven is having heart surgery at ? Not sure when. Need Coffee....not going to happen until Steven is heading in.  He is not supposed to eat or drink.

So here we are, with Bren, our designated driver and cheer leader. He is very good at both.

They took Steven in for prep.  The nurse who came for him said: “give him a hug.”  She looked at Breni; “you too.”  We did a group hug.  Thank you nurse for the reminder of something we can do.

Now it hits, I want to cry. 

It's strange, I feel I cry a lot more these days. I don't think I'm depressed, though it is common with Parkinson's. (The other day, we went to see “Annie Jr.” put on by the Older Kids at The Antioch School where my grand daughter goes to pre-school.  I cried through most of it. It was adorably bad. The kids were so scared, so excited, so pumped to be performing for us.)

 Stress is not good for Parkinson's. Sleep deprivation is not good for Parkinson's. Surprisingly, I am upright and moving when I need to.  But I am very thankful for Brendon being beside me today.  It is a very big, very active, confusing space filled with many people. I am not thinking well.

I am now one week into taking that 4rth Carbidopa/Levodopa pill at 12:30ish to 2:30ish- when ever I wake up the first time.  I think it's starting to help my insomnia.

On the night before this surgery was to take place, we were already at the hotel in Cleveland. At 11:30 Steven had  woken up and gleefully realized he still had time to eat  before his midnight cut off.  Breni was up, on his computer, and I was awake, not being able to get to sleep.  We shared some jokes while Steven relished his smorgasbord of all the assorted snacks we had brought along.

Steven got back to sleep at 12:30.

Nancy got into a light sleep by maybe 2?

Breni maybe 4?  (He is a night owl/day sleeper normally)

Up by 6 am.

Bren and I had a quick breakfast. We all walked back to the hospital. Lots of sign in procedures. Lots of people having procedures, waiting to be led in. Then the families sitting, pacing, reading, checking the board, waiting.  Steven went into prep. We waited. I exercised a bit. Felt silly but stiff.  So stretched some more.

 I know I am juggling my writing between past and present tense.  This was written at different times. I have decided to leave it.

 The Dr.came out to talk to us about 4 hours later.  He was masked, but you could see his kind eyes.  He said it went well. They were able to perform the ablation.  They feel they got everything. It was very good news. 

 Last night I slept well.

 May you sleep well tonight,

Nancy & the Snark

P.S. Steven played The Hunting of the Snark”  by Lewis Carroll for us on the way home.

Footnotes from Corrine:  Phew! Phew! and Phew!  I am not a fan of snarks and their boojum ways. They make me cringe , they make me cry, they make me want to swear to the sky.