How my illness started It happened Suddenly in March 2005. I was doing a fitness class at the local gym and after a particularly tough exercise to improve my neck mobility, I found I couldn’t talk normally. My speech was slurred and I sounded drunk. Gradually over the next year, speech disappeared totally. I was referred to a Neurologist for investigation. MRI scans, muscle & nerve tests and a lumber puncture were eliminating other conditions and finally in July 06 they were left with Motor Neurone Disease as the most likely cause. This is the one disease I feared the most because there is no cure and no way of halting it either. It slowly progresses to all the muscles and life expectancy is 2 – 5 years, because of breathing difficulties. At any one time there are approximately 7 people in 100,000 living with the disease. To put it into perspective – while you are at work today 3 people will be diagnosed with MND. All through the investigations I was still working at my job and by relying on mail rather than the telephone, I was able to keep the business development side of my work going. My bosses were very supportive throughout and encouraged me to keep working at home, probably to prevent me feeling useless I guess. Possible causes for MND - I spent 15 months searching for answers. Was I suffering CFS a Post-viral condition, or had the exercise regime damaged a nerve in the neck? In 2004 I suffered a dramatic reaction in my throat when the field opposite our house was being sprayed and the chemical was visibly drifting, Although occasionally thinking it can’t be a good thing, we did not connect it to particular ailments until I heard on ‘Farming Today’ about Georgina Downs campaign against the use of pesticides in the countryside. I then delved into her findings and more and more it seemed that there could be a link with neurological conditions and cancers. Many people living in rural areas where crop spraying occurs, report long term chronic illnesses. Migraines, ME & CFS are common, clusters of cancers, leukaemia and Parkinsons are all collated in her files. Our government are only concerned with the health and safety of the farm operatives and so they are protected by H&S regulations . They are ignoring the fact that homes and schools are regularly and systematically exposed to chemicals sprayed on nearby fields, sometimes over decades. Think of the wider effect this has in our foods - transmitted to milk, meat, vegetables and fruit that we ingest. Pesticides are designed to kill the insect’s neurons so it is logical that damage can occur and yet the residents close to farmland are offered no protection. None of this is born out by hard evidence yet, but in my simple way I compare it to our ignorance of the dangers from smoking and asbestos etc. RECENT HELP - Because I cant speak, I have a laptop and text-to-voice programme with a pleasant English voice we call ‘Audrey’. It is cutting edge technology from the States and has transformed my life. Now I have a gastrostomy that enables me to keep hydrated since drinking water by mouth is now almost impossible I have excellent multi-disciplinary team support from Kings College Hospital and St Catherine’s Hospice in Crawley. Motor Neurone disease 1 year on - written Dec 2007 While everyone around me exclaim that they can’t believe its Christmas already and hasn’t this year simply flown by; I think to myself it is almost as though time stands still for me. I contemplate this. Is it because my life expectancy (in average terms) is now reduced to between 1 –3 years and its nature’s way of coping with a limited lifespan. Or is it because my time is spent resting now that the body is weaker and so time appears to go slowly. A butterfly who only lives 4 days, knows no different whereas I can remember well how days flew past when I was busy doing all the things we working mothers and wives do. (it all changed in February 2005 when I had my first symptom). A year ago I was recovering rather slowly from having a stomach tube fitted. It affected me badly. It is a big physiological step, even though I was told it would be essential to maintain sufficient liquid intake and ultimately food when swallowing is no longer possible. In the space of 3 months I had to come to terms with the fact that I had MND with no cure, aswell as losing my voice totally and the isolation that it presents, in addion to all that, an invasive proceedure to put a plastic tube into my stomach. In hospital a few hours after the operation, it hit me that I am now walking on a tight rope. Since then I have been faced with the progression of the disease with stiffening limbs, loss of dexterity and general mobility problems due to weakness. Fear of what is round the corner is perhaps worse than the event. Within 2 weeks of being relatively dextrous, suddenly I could not open or fasten things, or lift things and couldn’t move normally in bed. So all useful tasks are abandoned in tears of frustration. Strangely, within a fairly short period one become accustomed to the latest disability. So far anyway. OVER VIEW So much I have to be thankful for. Friends who don’t seem to be fed up with me yet and still invite me round. My family are all wonderful in different ways – never appearing to be irritated by my grunts, groans and signals and frustrations. My husband Rob, who was never meant to be a carer, is adjusting amazingly well. He still needs to learn to cook so that when I am not around, he can eat the sort of food he has been accustomed to. NAGGING DOUBTS I love the countryside, walking across an open field with the warmth of the sun on one’s back is a beautiful thing. Searching out the sparsely populated wild flowers – the first sign of Spring and the birdsong particularly late afternoon. Could these fields really have hurt my body’s respiratory and neurological system? Is this the punishment for growing our own produce alongside these same fields that were systematically sprayed over 30 years. Georgina Downs – I discovered her on Farming Today talking about her campaign following a debilitating illness which she attributes solely to the intensive spraying around her home near Chichester. She has taken on the Government & the EU and achieved the 10ft spray free zone around fields. She has collected vast data from people who claim to all have similar symptoms after one or successional sprayings near their homes these include :- Clusters of cancers, ME, Parkinsons etc. There is now medical evidence that Parkinsons Disease is linked to chemicals. I am confident that in the next few years more medical research will connect environmental damage with neurological illnesses. Please look at her website www.pesticidescampaign.co.uk My mother - She died when she was 55 and I was 19. For 5 years at least she was suffering with cancer. After radium treatment on the neck and throat, she was hoarse and within a short time, she could not speak or swallow. It was a tragic way to loose my mother who was a very courageous and kind woman. Now all these years later, I cant but help regard myself as lucky in comparison since I am able to use modern technology to communicate. Is this more than just a bizarre connection ?