This is a story of hope. Jack Osbourne was diagnosed with MS 22 years ago. He tells his story on his experience and how he goes about living life. Its great to see the light in people like him, thank you Jack.
‘You have multiple sclerosis.” I shall never forget hearing those words 20 years ago as a neurologist showed me the images of my brain generated by an MRI scan.
I had had some irritating symptoms that had led me to get a referral: I played a lot of tennis, but was losing to people I used to beat easily because I could no longer hit the ball accurately. Also, my legs began to shake after about half an hour on court. And my stomach muscles felt strangely tight.
It had not occurred to me that I had a serious condition. The GP who referred me to the neurologist said it was probably all psychological: I was stressed, I was tired, I was over-worked, wasn’t I? I agreed, though in truth I didn’t feel that way.
After I had a brain scan, the neurologist called, saying he had some good news and some not-so-good news, which would be better if he gave to me in person.
I arrived at his office. “The good news is, there’s no need for any surgery,” he said. That was a relief, as before he had thought I might have needed an operation to remove a possible tumour on my spinal cord. “The less good news is…” – he hesitated – “… you have multiple sclerosis.”
My world stopped. “There is no cure,” he continued, “but…” I didn’t hear the rest. I was 32 and already thinking about my funeral.
As if reading my mind, he said: “You probably think you’re going to die. But MS hardly ever kills anyone. You may not experience any change in your condition for years.” He advised me to ignore the diagnosis and get on with my life.
It took me several months to realise that the neurologist was right. My life wasn’t over. MS does indeed usually progress slowly.
My wife, who was pregnant with our first child when I was diagnosed, told me not to be so silly when I wondered whether I would live to see our baby. Amy seemed very calm. She had done some reading and had discovered the facts, something that took me much longer to do than it ought.
My parents, too, never indicated that they thought my life was over. My father told me that the most important thing was not to let MS stop me doing what I enjoyed, and there was no reason why it should.
That was very good advice, which I have tried to follow. Amazingly, it is possible to live with MS, and do most of what you enjoy doing.
As the neurologist predicted, in the short term – the following few months – nothing much changed. Initially, I could not walk for more than two hours without resting for 30 minutes. But the length of time, and so the distance that I could walk comfortably, got shorter. I started to use a stick because my balance grew worse. Then I needed two.
About nine years ago, it became clear that if I was going to get around at all, I would have to use a wheelchair. That was a very difficult transition: while my image of myself was not exactly as the human equivalent of the demigod Hercules, it certainly wasn’t of someone in a wheelchair.
I have managed the transition with the help of Amy and our children, Theo and Grace, all of whom are remarkably tolerant that I am unable to help around the house or outside as much as they would like. They are not infinitely tolerant, and I don’t blame them; I find it hard to tolerate myself on occasion. But their generosity and kindness is enormous, and that has made what would have been impossible merely difficult.
MS is a capricious condition and its cause is unknown. There is now pretty solid evidence that it is a disease in which the immune system starts treating nerves as alien invaders and attacks them; gradually it degrades and destroys their ability to transmit the signals on which our ability to move our limbs depends. It probably has a genetic component and an environmental trigger. But what is unknown about the disease still vastly exceeds what is known.
I was prescribed drugs, but my only treatment now is physiotherapy. Every six months, I go for a check-up at the Hospital for Neurology in London, mostly to hear about any new treatments, but also for the consultant to perform standard tests to measure whether the function in my legs has declined.
But I also go there whenever I have a disabling relapse (for instance, when I find it very hard to stand, never mind to walk a few steps, which I have to do to get around the house). It is then that I need steroids – three days of intravenous drips. That happens about once a year – sometimes more, sometimes less.
One of the great things about the human race is that we have evolved to be very adaptable. It is remarkable how quickly we can adapt to, and accept, what we know we cannot change. I have adapted to my limitations – and I adapt to them as they change. Our house has three levels of stairs. It has become very difficult to go up them, so I have to work out how to minimise the number of times that I do. I have to call on my wife or one of my children to get me something I need if it is not in the room where I am sitting. So life is considerably more difficult if they are all away.
I can still drive a car that has been adapted. My upper body strength is undiminished; in fact, my arms are stronger now because I use them so much more. My legs are very feeble, however. But their strength fluctuates considerably day-to-day – I don’t know why. And neither, it seems, does anyone else.
It is impossible to predict the condition’s future course, and that uncertainty is hard to deal with: you desperately want to know how you will be in five years’ time, but no one can tell you. The consultants I see at the Hospital for Neurology, one of the greatest centres in the world for the study of MS, have always been reluctant to make predictions. They admit they don’t understand enough about the development of the disease to know how it will develop in each case.
That is good in one way, because you can’t write yourself off, for it is possible that you might suddenly and unexpectedly improve. On the other hand, you may get much worse. No one knows. And when it’s you whose life is going to be affected, not knowing can be agonising.
The only way I have found to deal with that has been to try to forget about it. The neurologist who diagnosed me was right: getting on with my life was the best way to proceed. Denial turns out to be a reasonably effective means of doing so. It doesn’t always work, because something happens – a fall, a failed attempt to stand up – that makes denial impossible.
One of the other good pieces of advice I have received is to ignore advice. It is surprising how many people turn out to know what needs to be done to cure MS or to ameliorate its symptoms: I have been told that I must give up meat, stop eating cheese and milk, never touch alcohol, undergo special forms of therapy involving barometric oxygen, bee stings, hypnotism, acupunture, ayurvedic medicine, even prayer. One woman recently came up to me in the local park and asked if she could pray for me. I said sure. She asked me if I was Catholic, because she was Catholic. I said I wasn’t. “Are you Protestant?” No. “Jewish?” I said I did not have the gift of faith. “What!” she exclaimed, outraged. “You don’t believe in God? No wonder you are in a wheelchair! What the hell do you expect?”
At present, all of the so-called cures involve considerable discomfort, and do not have any beneficial effects. But there is a great deal of serious research work going on, and it is reasonable to hope that in the next five or 10 years, something will be found that arrests – or even cures – MS.
I had a meeting at the neurology hospital last week. The doctor explained that he is involved in a very large study involving the use of stem cells to repair nerve damage caused by MS. The process has already proved to be successful in animal studies, and it is not wildly optimistic to think it will be successful in people.
So there is hope. Jack Osbourne, the 26-year-old son of Ozzy and Sharon Osbourne who has just been diagnosed, may feel there is none at the moment – but there is. I have survived for 20 years with MS. I have read that people with the disease say it was the best thing that happened to them. It was certainly not the best thing that has happened to me – but it is not a death sentence, and it has not destroyed my life, not by a long shot.
I still work, and I can still enjoy many, many things. I hope Jack will come to realise, and faster than I did, that a diagnosis of MS need not be the end of everything he cares about.