By Pat Stacey
Tuesday January 24 2012
Those of us who have lost a loved one to motor neurone disease know that it's a
bastard of a condition, cruel and merciless.
Unlike even the most serious forms of cancer, it gives no quarter and yields no
hope.
There is currently only one drug available to treat MND and the respite it
provides, when it works, is limited and prolongs life for only a short period.
MND, which attacks and destroys every muscle function in the body, from movement
to speech to swallowing, is progressive and terminal, and that progress is
usually ruthlessly swift.
From the time of diagnosis, life expectancy is three to five years.
RTE sports broadcaster and racing fanatic Colm Murray appeared on The Late Late
Show in December, 2010, and revealed to the public that he'd been diagnosed with
MND the previous March.
The Colm Murray who featured last night in MND: The Inside Track, a documentary
that was part personal story and part exploration the ongoing -- and, of
necessity, frustratingly slow-moving -- efforts to find a cure for the disease,
is a visibly changed man.
His physical deterioration in little over a year is startling, although perhaps
less so to those all too familiar with how MND, with which one person in Ireland
is diagnosed every four days, works.
The crutches he used to help him get about have been replaced by a wheelchair
and his voice is slurred, with every word having to be carefully enunciated.
The effects of the disease have begun to affect his facial muscles, too. That
splendid face, which could speak volumes with a raise of the eyebrows or a wry
smile -- an absolute gift to a television broadcaster -- is no longer as
expressive as it once was.
His brain, however, remains alive and bristling with razor-sharp insight into
the turn his life has taken.
The type of MND Murray has, amyotrophic lateral sclerosis, doesn't affect
cognitive ability.
It's the same form New York Yankees baseball player Lou Gehrig was diagnosed
with in 1939 (before the wider public had heard of MND, it was christened "Lou
Gehrig's disease")
When Gehrig felt he could no longer do his job to his satisfaction, Murray
noted, he "benched himself".
Murray, who has drawn much inspiration form Gehrig's example, has done the same
thing by withdrawing from visual and audio broadcasting -- although as we saw
here, he continues to work in RTE writing scripts, which are typed up by another
person as he dictates them.
It seems crass to describe this deeply affecting film as inspiring, which is the
kind of off-the-peg adjective people in my job reach for when they've nothing
more profound to offer.
Yet it was full of inspiring moments.
He recalled how a visit, organised by a friend, to Willie Mullins' stable
inspired him to emerge from the depression he'd enfolded himself in and get back
in front of the camera for as long as was practicably possible.
Murray is under no illusions about the fate that awaits him.
As consulting neurologist Professor Orla Hardiman, who's been treating the
broadcaster at Beaumont Hospital pointed out, combating MND is a lengthy,
complicated and hugely expensive process, and a cure is most likely a long way
off.
"I'm prepared for what I know will be the worst," said Murray, who chooses to
view the disease as "a hand of cards" life has dealt him. What's important is
how you play the hand.
"A very positive way to play them," he said, "is to get involved in the battle.
To be of help and be of some service."
That service, as he sees it, involves devoting himself to "aiding and abetting
research".
Murray is now one of 800 MND patients involved in an international trial of a
drug called Dexpramipexole.
"I don't have any expectation that some magical miracle cure will come along in
my lifetime," he said.
"What can I do? Fight my own battle as well as I can."
"All power is within you; you can do anything and everything. Believe in that; do not believe that you are weak. Stand up and express the divinity within you." Unknown
MGM
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