I have Young Onset Parkinson’s Disease and today is what I would class as an ‘off’day. ‘Off’ is a term we, with Parkinson’s, use to refer to when our medications seem to have little effect or benefit. Symptoms seem to ‘flare up’, but actually the ‘off’ time is active.
It’s just gone 4pm and only half an hour ago, I dragged myself out of the shower I am dressed but need to iron my shirt. I am slow. It’s taken me almost forty minutes to dress and I am sat at this computer, writing this post because I am psyching myself up to iron my shirt. I have felt intense pain today and my movements are just slow and occasionally they are what I call ‘clunky.’ This is where smooth movement of my limbs is replaced by what feels like a jerky, cumbersome form of movement that feels as though it takes great effort. As a result, I feel exhausted and the idea of standing to iron my shirt is just daunting and almost overwhelming.
This will pass.
My next dose of medication was due at 4pm; fifteen minutes ago. I am wondering whether to make the journey downstairs to take my meds and then return to iron my shirt or whether to iron my shirt and then go downstairs and about the rest of my day, taking my meds once I get there. I’ll go with the latter, for there’s an incentive to get my shirt ironed so I can go and take my meds.
Before my shower, I sat for around an hour in a chair on our landing, upstairs in our cottage. I enjoy looking out at the view across our back garden and into the land beyond; with the beautiful oak trees and the Suffolk landscape so beautiful to regard.
That was the scene of a mighty battle; my chair, not the landscape! The time it took me to psych myself up to move and to cope with the pain and the movement difficulty was considerable. I got there; I had my shower and I have dressed.
What is the purpose of this post, I hear you ask? Simply, it is to give insight into an ‘off’ episode and to describe something of the difficulty in achieving simple tasks.
I am now going to iron my shirt and find my way downstairs, where I can then take my almost half an hour late dose of meds. After that, well, I’m hoping the ‘off’ changes to ‘on’ and that I return to my better and more usual state of being.
If you identify with this post, please feel free to comment below and share your thought
An hour later:
My shirt is ironed. I am fully dressed. I recorded a song at Smule.com I need the voice therapy even more today.
I was surprised at how difficult it was to move my face. I actually could only just move my mouth. Singing was challenging, as a result. Aptly, I chose to sing ‘What a Difference a Day Makes.’, famously a Dinah Washington classic. Yesterday my symptoms were far better. Today, not so.
Here’s my music video, at the following link, prior to another singer joining in. I hope you like it. You’ll see my facial difficulty.