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.Click to read more