Daily Mail, Tuesday, July 30, 2019 Page 47
A
t 52, Simon Brennan was
in near-perfect physical
condition. He’d run the
London Marathon twice,
and last summer pre-
pared for an Iron Man race in
Norway by ‘warming up’ with a
70k triathlon. He cycled, played
tennis and trained at a boot
camp three times a week.
But in October last year, Simon, a
derivatives broker in the City, noticed
an almost imperceptible slur in his
speech: his wife Sophia, 51, says she
couldn’t hear it, but it was obvious to
him. ‘It felt extremely weird,’ he says. ‘I
couldn’t get words out in the way I
wanted. I thought I sounded like an
ageing radio DJ.’
Over Christmas, he’d become anxious
and irritable. ‘Small things, like the kids
(Freddie, 25, Orla, 23, and Juno, 18)
leaving their shoes everywhere would
send him over the edge,’ says Sophia.
On January 2 this year, he walked into
the job he loved and calmly announced
that he didn’t want to do it any more. ‘I
found myself having something like an
out-of-body experience,’ he says. ‘I’ve
never had an anxiety attack in my life,
but I imagine that’s what it feels like. I
think on some level I knew I was ill. I
just had to get out.’
Simon believed initially he was suffering
from stress and his boss suggested a
leave of absence. ‘I fully expected our
GP to confirm that,’ he says. ‘But he
noticed that my face was emotionless,
almost as if I’d had Botox and he wanted
to rule out a neurological cause.’
today, sitting with Sophia in
their beautiful garden overlooking
Hampstead Heath in North London,
where only six months ago he ran and
swam and cycled, Simon is describing
with extraordinary grace and stoicism,
how he is facing one of the most
devastating diagnoses in medicine.
In May, he was told that he has motor
neurone disease (MND), a rare andBy CAROLINE
SCOTT
incurable degeneration of the cells
and nerves in the brain and spinal
cord. As messages fail to reach the
muscles, those affected are pro-
gressively robbed of their ability
to move, speak, swallow and,
finally, breathe.M
OSt people with MND
will die within five
years of the onset of
symptoms. But for
those with Simon’s type of pro-
gressive bulbar palsy, the outlook
is even more bleak.
Progressive bulbar palsy mainly
affects the muscles in the throat,
tongue and face and it causes dif-
ficulties with speech and swallow-
ing. Average survival at diagnosis
is between six months and two
years, but the disease is moving so
fast in Simon that he can track its
progress in almost daily losses.
His speech is slurred and less
clear today than it was a week ago
and the muscles in his throat that
allow him to swallow are weaker.
‘this disease is rampaging
through me now,’ he says. ‘I have
the most aggressive type of MND
and it seems to be taking me out
faster than average.’
It seems inconceivable that at a
time when his own life is falling
apart, Simon is able to think about
other people, yet he talks movingly
about his plans to raise money to
support others with MND.
At the end of June, Simon, his
son Freddie and brothers Mark,
58, and Paul, 56, completed a
270-mile bike ride from Land’s
End to the family home in High-
gate to raise money for My Name’s
Doddie, a charity founded by
rugby player Doddie Weir who was
diagnosed with MND in 2017.
‘I’ve had a good career and I’m
financially comfortable,’ says
Simon. ‘But a diagnosis like this
can break families; converting a
bathroom or buying a special wheel-
chair costs a ton of money and
MND moves so fast, you don’t have
time to wait for disability benefits.’
Around 5,000 people in the UKhave MND; it can occur at any age
but is more common between 50
and 70 and slightly more men than
women are affected.
A combination of genetic,
environmental and lifestyle factors
are thought to be involved,
although there is some evidence
that life-long intense physical
activity is associated with
MND in people who have a
genetic predisposition.
It is the disease that even doc-
tors fear for themselves and for
patients because there is so little
that can be done to treat it.
‘It is a devastating disorder and
it is extremely frustrating that we
don’t have more effective treat-
ments yet,’ says Dr Nikhil Sharma,
a consultant neurologist at the
National Hospital for Neurology
and Neurosurgery in London.
‘there is only one drug we can
offer — riluzole — which can slow
the course of the condition and
give patients an extra few months,
but MND is a highly variable
disease and progression is different
in each patient. One area of inter-est that Dr Sharma is exploring is
the role of the gut microbiome
(bacteria that live in our large
bowel), which has a very profound
effect on our health and wellbeing.
‘MND, Alzheimer’s disease and
Parkinson’s all involve protein
deposits that cause an inflamma-
tory response in the brain,’ says
Dr Sharma. ‘Our research has
found that we can influence the
response of those little inflamma-
tory cells by altering the gut
microbiome with new bacteria.
‘the first trial looking at the con-
nection between gut bacteria and
MND will start this year and we
may have preliminary results two
to three years after that.’
No single test offers a definitive
diagnosis for MND, but on the
basis of his symptoms Simon’s
consultant initially thought he
had myasthenia gravis, a curable
autoimmune disease that causes
chronic fatigue and muscle weak-
ness, particularly in the face.
But despite taking medication,
by the middle of April, Simon was
noticing more symptoms, not
fewer. then one day he came in
from a walk and said to Sophia:
‘I’m smiling at people and laugh-
ing and yawning even when I don’t
want to. It’s really disconcerting.’
As well as affecting the upper
body muscles, the condition canalso affect the expression of emo-
tions and people might laugh or
cry for no apparent reason, a con-
dition called emotional lability.
‘We went to see the consultant
the next day and when Simon
mentioned this, his face changed
completely,’ says Sophia. ‘He
arranged a test called EMG
(electromyography: where small
needles are used to check for
nerve response) and warned us to
“prepare for the worst”.’T
HE test confirmed Simon
had motor neurone
disease. ‘We walked out in
silence, completely numb
with shock,’ says Sophia. ‘there
are just no words to describe that
kind of devastation.’
As Freddie and Juno were about
to take major exams and Orla had
just started her dream job in
publishing, Simon and Sophia
decided to hold off breaking the
news for a month or so.
‘that was the hardest time of
all,’ says Sophia. ‘We didn’t want
to lie to them, but we felt every
day they didn’t know was a good
day, a normal day. the moment
we told them, all normal days
would be gone.’
they kept quiet until examswere over then gathered the chil-
dren at home for Father’s Day.
‘It was the worst day of my life,’
says Simon. ‘I asked Freddie to sit
next to me and hold my hand
because I was nervous about what
I was about to tell them.’
He falters, and Sophia finishes
his sentence, her eyes filling
with tears.
‘they looked at Simon and they
looked at me, and they all started
to cry,’ she says. ‘We didn’t have to
say anything. they just knew.’
It’s likely Simon will remain
mobile as his disease mainly
affects the upper body, but he
feels it is progressing at ‘terrifying
speed’. Swallowing is harder and
he’s sure he will be fed via a tube
by Christmas.
As his disease takes hold, Simon
is experiencing an unexpected
sense of peace. ‘Before MND I was
rushing around, never thinking I
was quite good enough,’ he says.
‘Always feeling less than I wanted
to be. Now I haven’t much time to
live, I’m sure of who I am and I
make the most of every moment.’
His rare moments of self-pity are
over the milestones in his
children’s lives he’ll never see.
One of his lowest moments was
watching a couple playing with
their grandchildren: ‘I cried
because that will never be me,’
he says.
Simon is planning another
fundraiser next year — his target
is to raise £500,000 before he dies.
But first there is a family holiday
in Dorset.
‘the only thing I really want is
more time with my beautiful wife
and children,’ he says. ‘Because in
the end, all that matters is being
with the people you love.’
to help Simon raise funds
to support others with MND, go
to justgiving.com/fundraising/
simon-brennan4thiS week: Coffee and tea steal iron
COFFEE and tea contain high levels of
polyphenols, substances that bind with iron,
preventing its absorption.
Tea can reduce absorption by up to
95 per cent (green tea doesn’t inhibit
absorption by quite as much).
It is thought to be the phenolics —
compounds found in plants — in tea that
are to blame.
Lack of iron causes anaemia, leading to tired-
ness and lowered immunity, as iron helps makered blood cells, which carry oxygen around the
body. A diet high in iron-rich foods such as dark
leafy greens and meat is important for coffee
and tea drinkers.
‘It’s best to avoid caffeine at the
same time as having an iron-
rich meal or supplement,’ says
nutritional biochemist Rachell
Hipkiss. ‘Separate them by at least
two hours.’
Vitamin C, such as that found in a glass of
orange juice, will improve absorption.NUTRIENT STEALERS
Many everyday things rob our
body of important nutrients
In the end,
all that
matters is the
people you love
Super-fit Simon was struck by a
fatal brain disease at just 52. And
his most inspiring message...
Devastating diagnosis: Simon
Brennan with his wife Sophia
Picture: RICHARD CANNON