Parkinson’s & MS
November 22, 2022
It’s baffling that it’s been a year since I started my twenty-three thankful posts last November to combat feeling like I was drowning in “what if’s” and fear. Each thankful still holds true today. The only change has been dropping chiropractor visits (solely because sessions get lumped in with PT visits under insurance and I definitely max those out) and replacing them with neurology appointments.
My therapists continue to amaze me by creating exercises to challenge me physically and mentally like the crossover agility drill from my coaching days, karaoke. It took three months to build enough strength and coordination to graduate from gripping a parallel bar and sliding my feet to moving freely across the gym, followed by an additional two months to conquer not looking at my feet and chatting while moving. Hopefully moving at tempo will come sometime in the future.
On the medical front, I continue my regiment of supplements and the Parkinson’s/MS medication as there is no further advancement - yet. All my doctors are beyond thrilled with my progress: sitting upright through an appointment while communicating clearly enough is light years away from where I started, unable to stand for two minutes or name more than 10 fruits or vegetables. Fatigue and cognitive delays continue to be my main issues, with insomnia, sluggish digestion, and body aches and headaches being my constant companions. I’m still dreaming of the day when I’ll to be visiting Caroline in Kalamazoo, enjoying a happy hour beer with a pain level of zero.
The next monumental challenge I’m facing is returning to teaching. My functioning level at school rivals my starting levels at PT and speech. I have been given the gift of observing in a colleague’s smaller special education math class twice a week for an hour to start chipping away at deficits. As I hang out watching lessons on concepts I’ve taught myself for twenty plus years, I’m in awe of how far I have to go. The tornado of long COVID blew apart the filing system of information in my brain and each lesson requires me to sift through the rubble in an attempt to restore order. The mountain I have to climb to get back to my own classroom is unreal but the love, hugs, and smiles from every single person who sees me makes it easier to face.
My sister recently made me a playlist and “These Are Days” by 10,000 Maniacs was her first pick, a song I’ve heard a million times but never absorbed the lyrics:
These are days you'll remember
You'll know it's true that you
Are touched by something
That will grow in you, in you
As I go out more, it makes my heart happy to thank people in person for the prayers, good vibes, love, and light sent to me and my family. Your hope and love carried us through the darkness when we lost sight of ours. My smile and tight hug (that may be a bit longer than is socially appropriate) are both signs of my gratitude.
To help make sense of the last 22 months of upheaval we’ve lived through, I’ve taken a suggestion many of you have made and started writing about our experience.
Who knows what will become of what I write but I believe one day our story will help others know the antidote for pain and despair is hope and love.
