LIFE WITH PD
I had written this piece, prior to reading my friends blog,what stands out for me is his comment about our duty to let people know,we have PD .Its difficult for us because drugs give us magical powers.They enable us to live in two worlds those being normality and disability,this adds to our problems in many respects.
The turning point for me began,the day I was able to say,I have Parkinsons Disease,first to myself and then to the world.
Reaching that point took several years,but thats the moment when my health improved and I began living with MyParkinsons.
Myself and my friend were once upon a time YOPAS, younger people with PD,We were diagnosed at a similar time longer than either of us care to admit these days,were Veterans in PD terms
I shared a cab ride home with my friend just a few months ago,he told our driver that he had PD,a defining moment after so long with an illness, yes it was the first time he had told anyone he had PD a defining moment I think it was.I cant remember that moment for myself but its a tragedy that we delay it but a natural response to isolate ourselves and medications facilitates the pretence
Duty cant be forced but hiding it can be a farce The ability to tel comes with time.
I’m Fine my friends blog
Walking down my local high street last Tuesday, on autopilot, lost deep in thought on some earth shattering subject like the scandalous state of potholes versus the whacking great local authority’s pensions bill, both funded by my Council Tax payments, I was oblivious to the world and to the individuals sharing my bit of pavement.
“Hi there! How’s it going?” asked a voice above the traffic noise, words that started my exit from my inner world. A good slap on the shoulder hastened the exit.
“Fine,” my subconscious replied out loud on my behalf.
I became aware of my assailment’s identity as Wee Jim the Painter, who, without the slightest invitation from me to go beyond the initial exchanges of greetings, proceeded to monologue on all the people scrounging from the state. He included such low life like the unemployed (me), the disabled (me), and the English (me). Paranoia was starting to take hold of me.
As I stood there not listening to Wee Jim, I pondered on the word fine. “How’s it going?” or “How are you today?” or similar questions are always answered by me as “Fine!” or, if I’m in playful mood, I drag out the syllables of “Fan-tas-tic!”
Last Tuesday I was far from fan-tas-tic, things were not going well and to reply to Wee Jim’s greeting as “Fine!” was nothing short of a lie. Each limb had aching bones, I was walking slowly with uncertain, clumsy feet, my speech was slurred, I couldn’t get the small change out of my pocket and I craved sleep.
In the newsagent, trying the simple act of buying a newspaper held up the queue of busy people behind me: I lost the battle with my pocket trying to extract a pound coin, then dropped my wallet which emptied some of its content on the floor. The assistant took the opportunity to serve some of her normal, sane customers whilst below I fought with the floor to release my credit card from its wet and dirty grip. Having won that battle, and extracted a twenty pound note from my wallet in preparation for payment, I rose to my normal height.
The assistant ignored me and her eyes went to the next in the queue – which turned out to be the right thing to do if not for the right reason. I had stood up too quickly and was suffering nausea and the world was becoming rather grey. In short I was fainting! (Fainting in public is not advisable – believe me – I’ve been several times. But will leave that for another day).
Fortunately I was able to hang on to the counter and avoid collapsing in a heap. I was now aware of the assistant’s horrified look in my direction, no doubt I was a funny colour. She snatched the paper out of my hand, scanned it, and thrust it back in my hand, along with a fist full of change and the receipt. I left the shop clutching this as I was in no fit state to resume battle with pockets.
So all was fine!
Looking back, I ask why hadn’t I told Wee Jim how things were really going for me? Why not turn to the people held up by me in the newsagent and apologise for holding them up and tell them that I have Parkinson’s? Would it do any good? Possibly.
Wee Jim might gain an understanding of what it’s like to live with PD, challenge his prejudices. His ability to get a point across is strong, pity he’s not on our side. I doubt it. Noel coward defined a boor as any person who, when asked how they were, proceeded to tell you. Wise words.
Strangely, upon reflection, I feel I was at fault in the newsagents. Like many Parkies, I like to look “normal” – I don’t have many of the obvious signs like a tremor. Clumsy and slow – yes. The assistant wasn’t naturally aggressive, probably just stressed out by an awkward customer who was possibly under the influence of drink. In these situations where our PD is taking control, I believe we have a duty to let others know. How can we expect understanding if we don’t let them know we are far from normal?
Hey, I’ve got PD, the sun is shining and today I really feel fine!