Hi Robert, you are the first Kiwi with MND (other than my husband Bill, who was diagnosed in October last year) that I have met.
Im not really sure where to start, you will more than likely have "heard it all".
Bill will turn 50 this September, to date he is coping extraordinarly well given the nature of this disease. He is still mobile with the aid of crutches and/or frame. So far his swallowing etc is still excellent but he does use a machine at night to help him sleep. He underwent tests for almost 2 years prior to his diagnosis? We were told then that there was no actual test for MND but rather a process of elimination. Then we were told the average length of time this disease took to run its course 2-4 years but we would probably have to include the length of time it took to diagnose him in that time frame..........even at this point we weren't really sure what we were dealing with.......I've been the one researching MND and passing on the information to Bill when he felt he was ready to hear it however most of the time he's not ready to hear it and I'm not sure what to do about that....He has never been a very talkative person and now he is worse.
Thanks for sharing your story with us.