Five months after being given the devastating news and told that my life would be significantly short I gave up work and stopped driving. Shortly afterwards I was also forced to give up cycling after a painful accident when my arms gave way.
It's been said that the care and support you receive is a bit of a postcode lottery but in my two-year journey I've met a lot of kindhearted people.
For me MND has been a top-down experience as it started in my shoulders and moved down my arms during the first year so that my upper limbs are now no more than dead weights. The loss of my arms has been a cruel blow as we depend on them so much to interact with the world around us.
For me it has meant giving up the joy of photography and the pleasure of reading a book. On a more fundamental level it has meant losing the ability to wash and dress myself and even to feed myself. During the second year the disease began to spread into my legs and as the months went by, the distance I was able to walk from my house diminished so that now all I can do is walk small distances around the house. If I leave the house I have to take a wheelchair with me.
Throughout the time I've had the disease, my respiratory system has been in decline so that now I am on the bottom end of okay. Fortunately my speech and swallowing have remained unaffected although I do take frequent pauses when speaking now and I cannot raise my voice as loud. My hands are getting really bad as well and I've lost the ability to even write my own name or to type a sentence on my computer's keyboard. I am now dependent on voice recognition software which was kindly supplied through the MND Association/AbilityNet partnership to control my computer which I'd be lost without.
It's been said that the care and support you receive is a bit of a postcode lottery but in my two-year journey I've met a lot of kindhearted people; from the carers who look after me on a daily basis, and the Remap engineers who devise ingenious solutions to everyday problems, to my helpful OT who has done a great deal to ensure that I get equipment in a timely manner.
I maintain a blog partly so that my family and friends are kept up-to-date, but also to share my experiences and raise awareness of what it is like to live with this devastating disease. You can keep up to date at http://livingwithmnd.wordpress.com/
