The inexplicable and increasingly worrying symptoms had been
plaguing me for more than a year when, in December 2007, aged 46, I was
diagnosed with multiple sclerosis (MS).
There had been problems with
my balance to the point where I couldn’t walk without a stick, numbness
throughout my body, slurred speech and, most upsetting of all, a clumsiness in
my hands that left me unable to play the
guitar. After examining my set of scans, a distinguished professor
of neurology looked at me sympathetically and explained that I was among the
worst new cases she had seen.
It was incurable, like all forms of the disease, which
gradually destroys the nervous system. I had the relapsing/remitting type –
characterised by symptomatic flare-ups, followed by periods of latency.
Although effective drugs were available, I could expect to
deteriorate slowly but surely. I was handed a leaflet on how to get a discount
on a good-quality wheelchair.
But I have, so far, defied that devastating prognosis. In
fact, I have not had a single relapse in three-and-a-half years, and hardly any
of my symptoms remain; I have been able to give up my medication, with no ill
effects, and MS is now nothing more than a minor inconvenience in my life. And it is, I believe, largely
thanks to a special diet.
WERE MY CROCS TO BLAME OR WAS I JUST CROSS-EYED?
The first hint of problems to come began while I was on
holiday in Tuscany with my daughter
Molly in August 2006. We had spent the
day at a beach close to the town of Grosetto, and as we made our way back to
the car, I stumbled.
Looking down, I blamed my momentary giddiness on the hideous
yellow and black rubber Crocs flip-flops I had decided to wear that day – but
it still seemed odd.
Molly, who was six at the time, asked me what was wrong.
‘It’s my flip-flops,’ I said. ‘They’re too high off the ground.’
‘It’s not your flip flops,’ she replied. ‘It’s your brain!’
She didn’t realise how true her joke was, and neither did I.
The next day I had to stop the car and call for help because my vision suddenly
became blurred, and that’s when I really knew something was wrong.
I saw a series of flummoxed doctors who told me I had
everything from labyrinthitis – a swelling of the inner ear that causes extreme
dizziness – to something called bilateral internuclear ophthalmoplegia, meaning
being cross-eyed.
Eventually, I was referred by a neurologist for an MRI scan.
They found multiple lesions on my brain but, bizarrely, I
was told that the best course of action would be to do nothing and just ‘wait and see’.
Shortly
after that, things became a lot worse. I started falling over for no
reason, hence my need for a walking stick, as well as numbness that
extended from my toes into my feet, legs, torso, face and fingertips.
I felt a tight invisible ‘hug’ around my chest, and I
couldn’t even cross my legs without lifting one of them up with my hands.
Still the neurologist assured me I was fine and that all my
symptoms were ‘transient’.
But I knew was that there was something seriously wrong.
Some years ago, a trusted friend had told me that if I were
ever to become seriously ill, I should consider going to the Mayo Clinic, in
Rochester, Minnesota, where he himself was successfully treated for a serious
illness.
I was fortunate that I could afford to go there, because in
terms of its research and diagnostic facilities, as well as its treatment of
chronic illnesses, the Mayo Clinic’s reputation is second to none.
GETTING A DIAGNOSIS AND DOING MY OWN RESEARCH
When I arrived I was told that they had examined the scans, which
I had sent, and that they strongly suspected MS. I was immediately put on a
six-day course of high-dose intravenous steroids to reduce inflammation and
many of my symptoms improved, although the drugs made me feel absolutely
furious and completely miserable.
Some 16 days later, after a barrage of exhausting tests,
including a new, and considerably
worse MRI, I was given my diagnosis and prescribed Tysabri, a potent intravenous
immunosuppressant drug, with potentially lethal side effects, that requires
close monitoring of the blood, and is prescribed only to MS patients with
serious symptoms.
My neurologist had said: ‘We don’t know what causes MS and
we don’t know how to cure it.’
Those words – spoken by a true expert – terrified me. And it
was for that reason that I started to do
my own research.
In truth, there are many less well-known treatments for MS
that for whatever reason have not undergone the rigorous clinical trials that
the neurologists require before they are willing to recommend them.
Their caution is appropriate, but I believe that just
because a treatment has not undergone trials and is therefore unproven, that
doesn’t mean it’s not effective.
Being diagnosed with a serious illness focuses the mind in a
way that I don’t believe a doctor can ever fully grasp unless he or she has
that illness. All of a sudden, it’s less about science and statistics, and more
about the sheer visceral fear that your quality of life is going down the drain
and an overwhelming sense of determination to do whatever it takes to stop that
from happening.
I first came across Professor George Jelinek’s website
within a few days of being diagnosed. I bought his book, Overcoming Multiple
Sclerosis, and ended up going to his retreat in the Yarra Valley near Melbourne
in 2008.
It wasn’t too far to go, as I was living in the Far East at
the time. What strikes me about Jelinek today, as it struck me then, is that he
offers the one thing that is in chronically short supply in the lives of people
with MS, and that is hope. Real hope. He’s not a neurologist, but a medical
academic who was diagnosed with MS in 1999. His own mother died of the illness, giving him a proper
understanding of the misery and devastation that it can bring.
He’s not against MS drugs, but argues that to have the best
chance of recovery, people with MS, in addition to taking whatever drugs are
prescribed, need to make changes to their lifestyle, with a focus on cutting
saturated fat from their diet.
He himself adheres strictly to the approach that he
recommends to his patients, and has gone 15 years without a relapse and is
symptom-free.
Jelinek has published several papers in respected mainstream
neurology and other medical journals, and the links to these appear on his
website.
He describes his treatment as ‘a mainstream preventative medicine
approach with modification of lifestyle risk factors thought to be responsible
for MS progression’. The approach is broadly this: a plant-based, wholefood
diet with seafood, regular exercise, regular sun exposure or Vitamin D
supplements, flax (or fish) oil and stress reduction.
His book has sold tens of thousands worldwide, and his
research is showing that those who have adopted his approach are doing
extremely well, and he hopes that this expanding base of evidence that he and his team have put together will
convince clinicians that there is more to treating MS than medications alone.
The evidence for the effectiveness of the diet is already
there.
In his book, Jelinek explains the robustness of the work of
the late Dr Roy Laver Swank, the American
Neurologist who conducted a 35-year-long study into the diet of 150 MS
patients.
Half of these patients ate the standard Western diet, and
half of them ate the low-saturated-fat diet that Swank had devised.
After three years, those on Swank’s diet had experienced 80 per cent fewer relapses than the non-dieters.
After 35 years, a third of the 72 people who stuck to the
Swank diet had died, compared with an 80 per cent death rate among those not
following his diet. Only five per cent of the Swank dieters had noted any
deterioration of their condition.
COMING OFF THE DRUGS AND PLAYING THE GUITAR AGAIN
I came away from the retreat with great confidence that if I
followed the advice, I could stop the illness in its tracks, and eventually
become well. That is exactly what happened.
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