I have created this website about Motor Neurone Disease (MND) which is a progressive Terminal illness that affects around 2 in 100,000 people. 5 people die from MND every day. And 50% Die within 14 Months of diagnosis.
The purpose of this site is to raise awareness of this devastating disease and via the blog will post regular updates in order to keep a record of the degradation of myself as time goes on, to enable other people to learn from what I have found out on my journey.
The purpose of this site is to raise awareness of this devastating disease and via the blog will post regular updates in order to keep a record of the degradation of myself as time goes on, to enable other people to learn from what I have found out on my journey.
This is me, with my wife Sharon, Daughter Charlotte aged 12, and Son Louis aged 5. I love them all so much, they are the most important thing in my life.
At the time of this photo (Feb 2011) I am around 4 months on from being formally diagnosed with MND - and to look you would think nothing is wrong! Yes I am quite early on in the progression but as it stands I have almost no use of my left hand, suffer from terrible fatigue and have problems walking any distance as the strength in my legs is fading. I will every so often change this picture to give you an idea of where I am up to and how I am doing.
At the time of this photo (Feb 2011) I am around 4 months on from being formally diagnosed with MND - and to look you would think nothing is wrong! Yes I am quite early on in the progression but as it stands I have almost no use of my left hand, suffer from terrible fatigue and have problems walking any distance as the strength in my legs is fading. I will every so often change this picture to give you an idea of where I am up to and how I am doing.
Fighting MND
My name is John, aged 44 from the South West of England and I was diagnosed with Motor Neurone Disease in October 2010. I have decided to show how my journey goes with this terminal illness. My main reasons for doing this is for me to open people’s eyes to how devastating this is for the sufferer and their families.
My first symptoms were noticed in October 2009, whilst having a routine medical assessment at work it was noticed that I had an abnormal differential in hand strength between my right and left hands. This at the time I put down to doing lots of DIY and being right-handed, later that year I began struggling holding things in my left hand. At this point I decided to visit my local doctor. Luckily on that day the doctor I visited was a very young locum doctor who seemed to have a good knowledge of neurological disorders. She promptly referred me to Musgrove Park hospital in Taunton where the tests began - these consisted of nerve conduction studies called Electromyogram (EMG) tests. These tests concluded that I had a major signal loss to my left hand. The neurologist from this still did not give me any cause concern, he said it might be a trapped nerve or something, but the journey did not end there - I was refered to have an MRI scan, this again did not show any indications. The neurologist at Musgrove Park hospital told me he thought it was either multifocal neuropathy with conduction blockage or MND. It was decided I should attend a week in hospital for immunoglobulin infusion with a drug called Kiovig. Apparently if it was multifocal neuropathy with conduction block the Kiovig drug would have given me strength back in my left hand - but it did not. Following this the neurologist decided to refer me to Professor Kevin Talbert at the John Radcliffe Hospital in Oxfordshire. From speaking with Kevin, telling him what I felt etc and the test he performed, he concluded without any, doubt it was infact Motor Neuron Disease. When he told me this I thought my world was about to end. He asked my what my feelings were regarding my illness, i said "deep down I can't help but think its MND" he replied i'm afraid it is..... well - my wife fell to pieces, all I could think was - what's the life expectancy? After that, we saw Racheal Marsdon, who was very supportive and caring, then we saw an Occupational Therapist, who gave us some ideas of what support I may need in the future.....
The drive home was just a blur - we were planning on having a look around Oxford following the appointment, but we just drove home. Discussions like, how will we manage - with 2 young children and a hefty mortgage. We contemplated moving again - would we have to buy a bungalow? Would my wife (who also worked full time as we have a significant mortgage) have to be my full time carer? The follwing day day I emailed my Manager who was very sympathetic - I never returned to work properly and I retired on 31st March 2011 under our ill health pension rules. So I must thank all the people at British Energy (now EDF Energy) for all their support.
It took us many weeks to come to terms with being given what can only be described as a death sentence, infact - even now some 6 months since formal diagnosis we still find ourselves in tears at the slightest thing.
However I have learnt to get anything out of life you have to remain positive, and I now feel I should treat every day as though it could be my last.
My first symptoms were noticed in October 2009, whilst having a routine medical assessment at work it was noticed that I had an abnormal differential in hand strength between my right and left hands. This at the time I put down to doing lots of DIY and being right-handed, later that year I began struggling holding things in my left hand. At this point I decided to visit my local doctor. Luckily on that day the doctor I visited was a very young locum doctor who seemed to have a good knowledge of neurological disorders. She promptly referred me to Musgrove Park hospital in Taunton where the tests began - these consisted of nerve conduction studies called Electromyogram (EMG) tests. These tests concluded that I had a major signal loss to my left hand. The neurologist from this still did not give me any cause concern, he said it might be a trapped nerve or something, but the journey did not end there - I was refered to have an MRI scan, this again did not show any indications. The neurologist at Musgrove Park hospital told me he thought it was either multifocal neuropathy with conduction blockage or MND. It was decided I should attend a week in hospital for immunoglobulin infusion with a drug called Kiovig. Apparently if it was multifocal neuropathy with conduction block the Kiovig drug would have given me strength back in my left hand - but it did not. Following this the neurologist decided to refer me to Professor Kevin Talbert at the John Radcliffe Hospital in Oxfordshire. From speaking with Kevin, telling him what I felt etc and the test he performed, he concluded without any, doubt it was infact Motor Neuron Disease. When he told me this I thought my world was about to end. He asked my what my feelings were regarding my illness, i said "deep down I can't help but think its MND" he replied i'm afraid it is..... well - my wife fell to pieces, all I could think was - what's the life expectancy? After that, we saw Racheal Marsdon, who was very supportive and caring, then we saw an Occupational Therapist, who gave us some ideas of what support I may need in the future.....
The drive home was just a blur - we were planning on having a look around Oxford following the appointment, but we just drove home. Discussions like, how will we manage - with 2 young children and a hefty mortgage. We contemplated moving again - would we have to buy a bungalow? Would my wife (who also worked full time as we have a significant mortgage) have to be my full time carer? The follwing day day I emailed my Manager who was very sympathetic - I never returned to work properly and I retired on 31st March 2011 under our ill health pension rules. So I must thank all the people at British Energy (now EDF Energy) for all their support.
It took us many weeks to come to terms with being given what can only be described as a death sentence, infact - even now some 6 months since formal diagnosis we still find ourselves in tears at the slightest thing.
However I have learnt to get anything out of life you have to remain positive, and I now feel I should treat every day as though it could be my last.
This is a 3D rendering of my Brain where the data was obtained during my participation in the Biomox study in June 2011.
For more details click here
For more details click here
