Chris, I'm so sorry to hear that.
I've worked with people who study and research this. One of my former colleagues works on this disease with one of the countries top experts, Prof Pamela Shaw, in Sheffield, so the best experts are right on your doorstep
http://www.shef.ac.uk/medicine/staff/shaw.html
These people are constantly working on understanding the several conditions which collectively make up what we call MND, and who knows when the next treatment breakthrough will come?
Keep your chin up mate
Steve