Hello. I am in the UK too. My partner has been diagnosed about 1 year ago. It took about 9 months to get the diagnosis.
Have you been in touch with MNDA (motor neuron disease association)? Their website should be a good starting point, and it will answer may of the questions you may have at this time, in a jargon free and accessible way. You will probably soon find out that no two stories of
MND are the same, and that the severity of symptoms, progression and life expectancy vary between people. There also a different typs of
MND, with different prognosis.
If you have not visited a specialist clinic (
MND clinic) and the diagnosis has been given by a neurologist who does not specialise in
MND, you can ask for a second opinion (we did).
MND specialist will be able to give you a greater insight into the condition. Of course, it depends how much and exactly what the person affected with
MND wishes to know.
Search facility on this forum, as well as reading posts by other folk will begin to answer some of your questions, but feel free to ask anything that concerns you specifically.
All the best, Dani