Parkinson's: Are you Prepared

 

A Journey Into Parkinson's with Nancy Mellon

 Coordinated by Corrine Bayraktaroglu

 Am I Prepared?

It's not easy to be prepared.  I am still trying to get together my “Aware In Care” bag  for hospital stays.

•        Read the whole brochure- check

•       Mail the Doctor's letter, to my Dr. to sign. check

(After a lot of work trying to send it online, the 'easy' way, her office ended up saying “please mail it.”)

•       Redo medicine list. I did it when I got the bag., many moons ago. Medicine tends to change- both in  timing and what I am taking. Uh-oh- the label on my carbidopa/levodopa  container isn't the way I take it now. 

•       Call the pharmacist- Can he change the label for the times I take my pills? No he can't, even if the same amount is taken but at different times..

•       So I messaged my Dr. through my online account “Can she change it?”  Well see if she can without a visit to talk about why I changed the times Sigh.

•       2 days worth of each of my medicines in their original containers in the bag . Check

•       Decide which hospital is the best choice to go to for a person with Parkinson's.  Call the local hospitals to ask the questions that the bag provided to help me make a decision.. Still need to do.

•       Tell my husband where the bag is. Check

 “You need to be prepared. You will fall.”  that's what Cynthia said today in my PD boxing class.

This being prepared theme seems to be coming up a lot lately.

She was showing us how to get up off the floor.  She talked about first  practicing at a chair or couch.

“Put your hands on the back of the chair and  then put one knee on the chair and then the other.  Then  take one knee off to stand on that foot and then the other knee off.”  We did it again and then again.

Next, she showed us how if we were on our back on the floor, we could put our knees up with our feet on the floor and swing our knees back and forth, until the momentum could help us to turn on our side. Then you sit up. She said if we were not close enough to a chair, we could scoot on our bottoms over to a chair or turn over and crawl to a chair. I understood the reason for this advice, but it was kind of  spooky to think o f needing it. 

She  emphasized “Always have a cell phone with you.”

Then she talked about choking. I had just been talking to a friend who's relative was having trouble swallowing. It's a serious symptom of Parkinson's. My mom had it.  (Remember not everyone gets the same symptoms, we are all on our own journey.)

Cynthia had us practice. “Take a deep breath through your nose, then put your hands in front of your face and Cough 3 times- Hard.”   “Then swallow- Hard.”   We did it over and over and over again.

She often has us swirl our tongue inside our lips to exercise it.  I like this exercise because it's easy to do and helps to unstick my lips from my teeth when I wake up with dry mouth in the middle of the night. TMI.   But this next one is hard.  “Stick out your tongue, then trap it with your teeth and swallow hard.”  I haven't been able to do it yet. You try it.

OK, I think we are done being prepared for the moment.  I want to leave you with 2 fun, new ideas.

The  first one came from Kathy.  She texted me “Just saw a story on CBS mornings about Ping Pong and Parkinson's. It was said to help a lot, even better than some other exercise.” WOW, lets get playing Ping Pong everyone. (I was never good at playing Ping Pong, but then I was never good at exercise either.)  It sounds like much more fun to play!

The second great idea came from Suleika Jaouad from the Isolation Journals:

 In place of resolutions journal your way into the New Year with 5 lists.

•       What in the last year are you proud of?

•       What did this year leave you yearning for?

•       What's causing you anxiety?

•       What resources, skills, and practices can you rely on in the coming year?

•       What are your wildest, most harebrained ideas and dreams?

Dream on my friends,

Nancy and the Snark

Footnotes From Corrine 

This year I hope to continue to embrace hygge in my life, daily gratitude, dadirri, and a sense of humour.  I am trying to live with the fact that what I want doesn't always mesh with reality or circumstances. I therefore plan to work with what is and cherish each day as a blessing.