I am a Writer for ‘Parkinson’s Road’, global support community.
Morning Has Broken:
My phone alarm goes off at 6.45am, every day; it’s time to take my medication. This week, the sultry, velvet voice of Ella Fitzgerald singing ‘Summertime’, in a duet with the magical Louis Armstrong, has been my favourite way for the start of each new day to be announced.
(Photo: Ella Fitzgerald. Source: dunderbeck1980 on WordPress.com).
Like the First Morning:
The delight of hearing the voices of these legendary performers initially fills my mind with joy and I forget. I forget that I have Parkinson’s. Just for a sweet moment or two, before I move, I feel like the me I was long ago. I smile as I hear Ella’s soulful rendition that summertime is a time of easy living. Well, I’m looking forward to summer, in that case. Then, I try to move my body.
Blackbird Has Spoken, Like the First Bird:
Outside, I can hear the birds singing and chirping their vibrant chatter. It’s just a ‘normal’ day, right? What is ‘normal’, though?
I look ‘normal’. Yet, my muscles are tight and cramping, my hands pained and then begins the almost invisible spasm of arm muscles. My right leg, right shoulder and into the right side of my neck are all tight as if in great tension at the apprehension of a new day. Pain. Sometimes the muscles there are set like concrete. My right foot is sometimes jolted into a cramp as soon as I move it. My face becomes the expressionless observation post from which I witness the sun shining into the bedroom; hope being delivered by natures light.
I am quiet. I am used to this now. I always chuckle to myself, even if I feel overwhelmed by the effort, as I somehow manage to swing myself up and round to a sitting position; working my body into gentle stretching in readiness for reaching for my water and medication. Pain and difficulty. My main task is not to drop my glass of water.
Mission accomplished. I lay down, somewhat ungracefully, trying to ignore the back pain and I manage to return to sleep.
Praise for the Singing:
My alarm goes off again. Ella is back. She croons a beautiful song; ‘Fly Me to the Moon’, to remind me to get out of bed, for ‘normal’ people are already up and about.
Praise for the Morning:
A little later, in my version of a ‘normal morning’, while resembling an aged Chimpanzee stumbling rather awkwardly over craggy rocks, I manage to slowly make my way downstairs. There is no elegance in the morning. Sometimes I ‘just stop’, en-route!
Seriously! I just stop dead in my tracks! Still. Waiting. Not moving. I do not choose to stop. Parkinson’s chooses that. It’s called ‘freezing’ and is a symptom of Parkinson’s. It just happens; mostly in doorways or at steps. This symptom happens a lot. I just pause, imagining how bizarrely comical this must appear or, sometimes, I am just unable to think. I just exist. I cannot make movement happen. Then, suddenly, my ‘freeze frame’ returns to movement and I continue the painful and slightly ridiculous performance to get myself to the kitchen.
Once there, I aim for a glass of water and, by this time, my next dose of medication. Tiring. I let our excited dogs out into the garden and I make my own bathroom pit-stop, as my meds kick-in. I battle the lingering tiredness as I awaken more fully. Our dogs head back to their beds until I can give them their breakfast.
With our bathroom downstairs, I immediately draw a hot bath; the main remedy for my cramping muscles and painful lower back. Bliss. Sometimes I cannot use the bath. So, I shower. Sometimes I cannot shower, so I use the bath. Sometimes I cannot use the bath or shower, so I wash. These are the decisions that must be made. I make them cautiously, for I have learnt several times the pain of falling down in the bathroom.
I will refrain from boring your further with a description of how ridiculous, long and complex the act of getting dressed into my clothes is.
All this effort and difficulty, before I even go about my day.
Praise for Them Springing, Fresh From the World:
Are you aware that Tulips are the international symbol for Parkinson’s Disease Awareness?
Why am I sharing this peek into my morning routine? Well, April is Parkinson’s Awareness Month and April 11th was World Parkinson’s Awareness Day. I can put my pride aside and describe aspects of living with Parkinson’s, in the hope that raising awareness may help educate society abut life with disability and life with Parkinson’s. If that helps even one person to have a better experience in the future, by educating others, then I have achieved something meaningful.
(C) Dean Parsons. April 2018.