I was diagnosed with MND/ALS in March 2010. As a 46 year old Dad with 3 young children this was a devastating piece of news, particularly given the poor prognosis. However, I decided from the outset that I was not going to give in easily, I kept working for 2 years and we had some memorable family holidays. I became wheelchair bound in March 2012 and seriously ill during the Autumn of 2012.
I appeared to be in the typical end of life spiral of MND. I was admitted to Intensive Care in early November 2012 to get a feeding tube fitted and
weaned onto a ventilator. I was then transferred to a local Hospice in December 2012. By this time I wasn't expected to live for more than 6
At this point NHS Scotland put in place a care package to enable me to come home to die. After spending what we all thought was my last Christmas in the Hospice, I came home on 27 December 2012. Amazingly, due to the combination of good care, equipment and physiotherapy my condition has stabilised. Now I have limited mobility but I am still able to talk and eat a good, albeit modified diet. I can use the computer via iTracker, which enables me to control my computer with head movements.
I’ve been able to become an active MND campaigner. In particular I’m seeking to highlight that with good care provision many MND sufferers can
still lead very productive lives. Given what I know now, I’ve prepared a Living With MND Toolkit which distils my journey into 4 pages. The Toolkit covers how I would go about dealing with the diagnosis, finding out information and living with MND.
In terms of living with MND, my Toolkit goes into detail on Ventilation, Feeding Tube/Diet, Technology, Physiotherapy, Medication, Hoist, Wheelchair/WAV, Environment and a Sundry section on ad hoc items. Where possible I've hyperlinked to the sites where you can get more information on the products and services which keep me going.
Living Wiith MND Toolkit