Living with Parkinson's

A patient's perspective

Tynemouth resident, Ali Finlayson, worked in Communications until Parkinson's caused his voice to deteriorate. Depression soon set in as Ali struggled to come to terms with the degenerative effects of the disease.  But following his doctor's suggestion that he find a creative outlet Ali has put his considerable talents to good use writing creatively about his experiences. Writing about life with Parkinson's is helping him to understand the condition.

 

"I came to realize that a great deal of the anxiety I was feeling was a fear of the unknown. I did not understand what was happening to me".

 

The account below gives a touching insight into Ali's first experience of 'freezing' -temporary paralysis which often occurs during the later stages of Parkinson's.

A Man Walks out of a bar..

Ali's creative writing essay
Man walks into a bar. The bar is Fitzgerald’s. The man is me. But as the old joke’s introduction crosses my mind, I’m not feeling funny, just relieved – the pub is quiet at this time of night; I’ve made it. Dimly lit, few customers, muted music – I’m happy as I buy my pint, noting the tiny barmaid’s gorgeous eyes in passing, and get comfortably settled at a table to wait for my friends.



They’re not long – Mr H is first through the door. As usual his huge paw dwarfs my hand as he greets me with the expected insult “ …. You daft auld git… “. We’ve known each other a long time, some twenty-five years, and he was my boss for most of them, a relationship grounded in mutual respect and shared sarcastic sense of humour. I’ve had occasion to be grateful for his friendship many times since we met. The others – Mr T and Mr J – soon join us. Mr T is quiet and slow-spoken, dry as dust but sharp as a tick; not much gets past him. He also happens to be a nationally recognised medals expert, with a specialist interest in The Northumberland Fusiliers. Then there’s Mr J – he’s a telecomms guru of awesome expertise from Sahf London, one of nature’s gents and a babe magnet of some reputation. He is rarely without female company, although, like the rest of us he won’t see the right side of sixty again. As I watch and listen to them it strikes me – not for the first time - how lucky I am to still enjoy the company of such good men. I feel safe in their presence, secure in their circle, a circle that understands. Little do I know what lies in store . . . .

 

 

The evening takes its usual “auld gadgie” course – a mix of anecdote and banter, argument and beer, leading as these occasions often do to a mellow pause when we realise it’s the last round and that we will soon be parting. Draining the last dregs we stand and I’m asked as always “You OK, mate ..? “ “Yes I’m fine, just going to the bog, get yourselves away, my lass is picking me up “. I’ve arranged to text my wife for a lift home.

They leave and as the pub door closes on their backs, I suddenly shiver. With some difficulty I shrug my shoulders into my jacket, head for the gents and park my walking stick inside the cubicle door. I take care of business. But as I turn to leave the stall, that’s when it hits me. A sickening shock as my torso locks and my feet glue themselves to the toilet floor. I cannot move. My legs will not work. I stare at the toilet seat, unable to budge. A dreadful invisible tourniquet has me in a terrifying grip – I realise that this must be the infamous freezing that up until now has only been a word on a page of symptoms in a waiting-room leaflet. “No, . . . no, . . . please, . . . not now, “ I plead, with only myself to hear, silently screaming my futile words to any gods who may be listening. As the fear bubbles up inside me I cannot believe what has happened. Within the space of two minutes I have gone from a wonderful, secure circle of friendship to a state of nearly suicidal terror – and for no apparent reason. My prayer brings no answer. I have never felt so alone, so desperate, so scared.

 

Deep breath. Another one. Wedge myself against cubicle walls with outstretched arms. Another breath. What can I do to free up my body ? What if I can’t ? My mind starts to race . . . . will the toilets be searched by staff at closing ? . . . the excruciating embarrassment of discovery . . . how to get home . . . . will I simply be ejected onto the street by tired, irritated bar staff and left to fend for myself ? Several minutes pass as I stand there, rigid, fixed, cross-like, a bizarre caricature gymnast in the stall, trying to suppress my rising panic, my breath rasping in my throat.

 

 

At last I calm down. I stare at my feet and make a supreme effort to move my right leg. It twitches. Another try, same shaky result. I concentrate, and imagine my foot moving round . . . it works; but I dare not trust the flood of relief that I feel; my foot has only shuffled three inches. But it’s a start. I lift my left leg and try to spin on my right foot, managing a stumbling turn of sorts and falling against the lightweight toilet door-frame. I catch myself and stand still, panting from my exertion, tracing the bead of sweat as it trickles down between my shoulder blades. I’m still trapped, already feeling exhausted.

My stick, amazingly, is still upright against the cubicle side. I grab the handle and lean heavily. That’s it; slide the door-lock open, look out; thank God – no last customers. I slide down onto the seat and rest. I have to move, but with that thought the fear is back – I cannot. Ages pass (or so it seems), sweating, in panic. At last I decide to try, if necessary risking a fall . . .


With a supreme effort I stand and take one stamping step out of the cubicle, staggering to lean against a washbasin. Looking up, I’m shocked to see the scared, vulnerable old man who stares back at me from the mirror. The shock momentarily jerks me out of my terror; I manage a turn and two stumbling steps towards the exit doors and the bar beyond. Thoughts of the pub resurrect the excruciating embarrassment of my sorry state, but in case my courage doesn’t last I force myself, plunging headlong through the doors, and hurtle out into Fitzgerald’s, terrified, sweating, alone . . .

I land up against a pillar, panting and gasping and hold on for dear life. Fresh fear grabs me – why have my feet been tied together ? I look down; below the cuff of my cords all I see are my laces, neatly and firmly tied, but still separate. So that’s what the leaflets mean by “ shuffling gait “ Well, you can effing keep that, is my immediate thought. I close my eyes against a sweat trickle and look again – same result.

 

As I open my eyes, I’m conscious of a touch on my arm – the tiny barmaid is there, those gorgeous eyes full of concern. She asks me what’s wrong. I cannot speak; What is it with my body? First my legs stop working, now my mouth. . . I look up – the pub is deserted; sweet relief floods through me and I stagger against her. Dry-mouthed, tongue-stuck, words slurring, I stammer out something about “ .. Parkinson’s . . not drunk, . . .sit down . .. OK in a minute . . . phone wife . . . “.


Completely unfazed, she stands there, just supporting me and waiting, full of patience, for me to relax. When I’m ready, we make my unsteady way across the bar-room floor and she gets me settled in a seat near the front door, with a glass of cold water, which I gulp. She offers to text my wife, but I thank her and manage the task myself. She leaves to cash up. I have the presence of mind to take a tablet, aware that it won’t “ kick in “ for at least half an hour, but grateful for its promise of a return to a normality of sorts. As I rest there, I feel the T-shirt, glued to my back, sweat going cold. I shiver and for a moment or two relive the details of my closing time horror.


My thoughts are interrupted with “ How are you doing, mate ? “ – it’s a young lad who I remember seeing at the bar, talking to the gorgeous eyes earlier in the evening. He turns out to be an off-duty barman and he’s been asked to check that I’m OK. I say I’m fine and thank him for his kindness. We chat; he’s interested in Parkinson’s and my voice by now has steadied and I’m able to tell him what it’s like.

 

I get a text; my wife has arrived and is parked up the street. Immediately, the two young bar-staff are on the case; the gorgeous eyes make sure I’m steady on my feet and haven’t forgotten my stick. I manage a quick hug of thanks and a few inadequate words of gratitude which are dismissed with a smile. Her young colleague says he’s taking my arm to the car. I protest, but only half-heartedly. He insists and I’m glad – by the time I’m at the car, tiredness has hit me and I collapse into the passenger seat. He takes care to fasten my seatbelt. In a tired voice, I mumble some thanks.

I’ll never forget that night of horror, . .. and kindness. And, safe in the car as we drive home, I tell my lass what has happened. She is her usual mix of “tough ” and “ love “, and I’m conscious of some advice along the lines of “ … take your tablets on time … “ as my thoughts drift comfortably off the point. I’m thinking “ I know I will write about this, but what will I do for a title ? “ I come up with and discard several possibilities . . . . then it hits me; it all started as I entered Fitzgerald’s earlier that night and it ended with my ignominious exit from the pub. What better heading than the old bar joke introduction, . . .or, . . maybe not, . . . . ah, got it, . . . .that’ll do, . . . sorted.

 

DiPAR  Diagnosing Parkinson's Through Neuromuscular Function Evaluation