Given the Chance
I was diagnosed with motor neurone disease on September 2nd 2010, which I call D Day, as it’s the medical equivalent of death row. At least that is what it feels like because there is no cure, just one drug riluzole - a drug which might give you an extra three months. And the chances are you won't even be able to eat your last meal at the end due to your shrivelled tongue and weak throat and neck muscles. You may of course also be totally paralysed, blinking your eyes at a computer screen tapping out messages to a world you can no longer fully engage with.
I read somewhere it is the disease most doctors fear so you can fully appreciate that those of us in the MND club might be willing to take a few risks with new drugs that haven't been fully licensed.
We are a small minority, currently only 5000 people are 'afflicted' with it in the UK, so you see why we may not make drug companies very much profit.
I was asked by my neurologist if I would like to participate in a drug trial and jumped at the chance imagining that maybe by some miracle I might be cured. So in spring 2011 I began to visit the Royal Free Hospital every few weeks to have lots of tests in order to determine my fitness. The drug being tested was nova antibody from GSK and I was excited to be part of a worldwide drug trial of 76 people. I would have to have two infusions of either the drug or a placebo four weeks apart with two muscle biopsies taken before each infusion.
Just before I went into hospital to have my first infusion they rang me up and asked if I would be willing to have a higher dose; and I agreed enthusiastically. I was given the infusion in a drug testing unit affiliated to a London hospital and was treated like a celebrity due to the fact that they had been waiting three years for someone like me and psychologically I have to say that this all made me feel uplifted and important . I had ten members of staff standing around my bed during the first infusion watching carefully as I was wired up to the drip. Everything went smoothly and I had no ill effects from the drug but mentally it was brilliant to feel that I might be helping people in the future or that it might in some way benefit me!
The drug trial finished in July and later my neurologist informed me that results were promising and asked me if I'd be willing to go on to the next testing stage which I said I would - though eventually they decided not to test in London.
Two years on and inevitably having deteriorated I would gladly be willing to test out any kind of drug. I am only 57 and I want to live that's why I would totally support any change in the law that would allow me access to medication , and I know many of my MND friends feel exactly the same especially since no new drugs have come onto the market for years.
All we are asking is to be given a chance.
Lindy Jones, Author of The Voice in My Head is Perfect