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My mate Alfie Preston - I hope his story will resonate with all your readers
8:31pm Sunday 25th May 2014 in News
MY name is Simon Mack, freelance journalist, writer and poet.
I've written a piece on Alfie Preston, a lovely chap from Acton, who is dying from a terrible condition called Multiple System Atrophy.
I hope you like it and find it worthy of a place within your splendid publication.
I want to raise awareness of this condition among your readers. I hope you can find space for this important cause.
Thanks for reading.
ALFIE PRESTON is a mate of mine.
The father of a close friend, our paths have crossed many a time, most usually through our mutual love of football.
A London lad born and raised, if you could bottle the archetypal cheeky friendly cockney chap then that's Alfie in a nutshell.
The man wouldn't harm a fly, is ever keen to help anyone who might need it, tells many a joke, uses good old cockney rhyming slang like a champ and has a good sincere heart.
I suppose, if I'm being completely honest, he's the Dad I always wished I had but never did, and I suppose that makes this even harder to write than it would be normally.
You see Alfie is dying. He's a 66-year-old retired man with a brain brimming with positivity, vigour and exuberance for life, but the cruel nature of his recent illness has left him virtually paralysed and almost unable to speak.
The name of this wicked condition is Multiple System Atrophy, and the doctors have told him he most probably has only a few months left.
When I first heard that Alfie had become so gravely ill, I was deeply shocked. I'd seen him at his beloved Queens Park Rangers just a few short months prior to hearing the news and he'd been in fine form.
We share a common illness in our psoriasis, and we talked sometimes about our experiences at the hands of the medical profession, but he never let it get him down or hold him back and he has always been an inspiration to me with his positive outlook.
At first, the doctors told him he'd developed Parkinson's disease. An uncontrollable shaking in one of his arms, allied to a fall on the bus, had alerted Alfie and his wife Jean that something was not right.
He had become unsteady at times and fearful of being toppled in crowded situations, which was making his regular pilgrimages to Loftus Road, to see his beloved Super Hoops, all the more tricky.
What has ensued is an horrific, fast-paced progression that has taken away a proud man's dignity.
I recall seeing Alfie soon after the diagnosis. He was walking with a stick and was having real trouble getting about. His spirit and sharp sense of humour was completely intact, but his speech was starting to slur, making it hard to understand him sometimes.
We were at Loftus Road and we popped to the kiosk at the back to get a pie. Being with Alfie, navigating through the , I remember him pausing often.
I couldn't decide at the time if he was afraid of the crowds toppling him or if his legs just wouldn't do what his brain was telling them.
In hindsight it was almost certainly a mixture of both, but it never stopped him smiling or enjoying the match.
The doctors administered almost every potent medication known to treat Parkinson's, with increasingly high dosages, but whatever type or quantity of drug they administered the uncontrollable deterioration in his condition just carried on like a driverless runaway train hurtling downhill.
And so it was that the neurologists who had told him he had Parkinson's just a year or so before sat Alfie down and gave him the diagnosis of Multiple System Atrophy, and the ultimate death sentence than goes with it.
I don't know about you, but I'd never heard of 'MSA' and, when informed initially, I associated it with a variation of some horrendous hospital virus that you hear about on the news.
However a brief gander at Google soon displayed the severity of this condition in the most stark of terms.
MSA is a disorder that affects the degeneration of nerve cells in various areas of the brain.
This results in problems with movement, balance and automatic functions of the body, such as bladder and blood pressure control.
The explanation goes on: "There is no remission from the disease, and the average remaining lifespan of a patient after the onset of symptoms is 7.9 years. Almost 80% of patients are disabled within five years and only 20% of those with the condition live beyond 12 years from the onset of symptoms."
It turns out that, unknown to Alfie and his family, the early signs of MSA had been displayed eight years prior to the onset of his motor symptoms, in the form of a sleeping disorder.
This is a classic early sign of the condition, but because MS' is such an unknown or little understood condition neither Alfie nor the medical profession made the association in the absence of other more obvious symptoms.
Alfie and Jean's ground floor flat in Acton was slowly transformed from a comfy home into a hospital ward. The sofa was replaced with a special bed with hoist and there were various medical contraptions to help the man use the toilet or perform the most basic of tasks with a degree of independence.
You see, we men are programmed to be the providers and the fixers in the household. To feel purpose, we need to be able to contribute, and a man like Alfie, who had proudly worked and contributed as a dedicated father of two for all those years, does not find it at all easy to mentally cope with having to rely on his wife and family for every mortal task.
The man fought and remained positive throughout, but this vicious condition pays little attention to your hopes or desires and, without a known cure or much on offer to stem the tide, the progression has been unrelenting and devastating.
In little over a year, Alfie has gone from being able to walk, communicate, feed himself and have some quality of life to indefinite admission on a geriatric ward in Charing Cross Hospital.
And, of course, while even holding up and reading a newspaper is impossible the man's cognition is still completely intact.
I can only imagine what it must feel like to be faced head-on with this condition while co-habiting a ward with those who are not of such sound mind.
In a further cruel twist to this tragedy, the local NHS trust, in its wisdom, declined to fund Alfie's wishes to be transferred into a nursing home, to try to relax in a place a little more dignified and live out his remaining days.
I suppose, from the outside looking in, you'd imagine that, in the face of such a stark prognosis, the authorities would be only too eager to facilitate your final wishes in any way possible. However, the NHS took the decision to deny Alfie his right to any funding for care.
Unable to accept her father's plight, the cavalry arrived in the shape of Alfie's daughter Nicky, the mother of four of his adored grandchildren. A bright intelligent woman, of whom Alfie is rightly proud, was not willing to see her father's wishes dismissed in such a manner and she set about researching the situation, to fight the trust's decision.
Nicky says: "Of every 60,000 applications for care funding, only 20 applicants are granted what they are entitled to. It's unlawful how NHS trusts go about the assessment process.
"Thousands of people have historically had to sell their homes to pay for their own care when it should have been funded by the NHS."
Nicky estimates she must have clocked up more than 100 hours in research on the subject, so she could take the battle to the local NHS trust and ensure her father got what he was entitled to.
And so it was to be that, after a victorious battle, last Thursday Alfie's dream became a reality when he was moved out of hospital and into a care home, closer to his wife and family and away from the geriatric abyss.
Since then, his beloved QPR, who had been alerted to a loyal fan's plight, sent midfielder Joey Barton to pay Alfie a visit and lift his spirits.
Despite all the trauma of recent times, the man remains bright, positive and thoroughly enjoyable company.
His cherished 11 men in Blue and White hoops did him proud with a play-off victory and a return to the Premier League, and I just know he still has a smile on his face as I write this.
As life tiptoes us by, I'd wager we all meet people or hear stories that convey us emotions good, bad and indifferent, and I suppose we all take to heart the plight of those loved ones closest and dearest to us, above and beyond complete strangers.
However, I ask you to spare a few seconds of thought for my mate Alfie Preston and all those in a similar position right now, in this country and around the world.
These people are good, decent and honest people who have worked, raised a family and been a positive influence on all who have been lucky enough to make their acquaintance.
Yet this counts for nothing when the fickle hand of fate deals you a dark black deathly card just when it was your time to take back a little of life's good for yourself.
Alfie Preston remains an inspiration to me and all those who come into contact with him.
It's understandable, in his current state, he has signed a DNR 'Do Not Resuscitate' agreement, but that doesn't stop him smiling and enjoying the company of his family and friends until the time eventually comes.
His positivity, high spirits and continued level-headed thought processes cut through my comparatively insignificant problems like a red hot-knife through the softest of whatever buttery spread might take your fancy.
It is a privilege to know the man, his story and the inspiring way in which he has dealt with what life has dealt him.
I am humbled by his character and good grace.
This piece is dedicated to Alfie, his wife Jean, his children Dean and Nicky and to all those suffering with the little known condition that is 'MSA'.
You can find out more information on the condition, get involved or even make a donation by visiting the Multiple System Atrophy Trust at: http://www.msatrust.org.uk/