I didn't go in with Chris to see the doctor, I didn't want him to be overly worried. It seemed like he had been in there for ages. When he came out he sat down and told me what had happened. The doctor had examined him from head to foot. She asked him if he had noticed his muscles twitching in his neck and arms. She referred him to have a spinal MRI, nerve conduction tests and electromyography and possibly a muscle biopsy. Nothing was said to him about it what it could be. Of course when we got home I Googled those tests and found out they were to rule out all kinds of conditions. If those aren't found, the only thing left is MND. There is no specific test to diagnose MND, diagnosis is just a process of elimination. Never have I wanted tests to find something else so much in all of my life. Chris still had no idea what might be wrong with him.
The waiting continued, meanwhile Chris's symptoms had progressed a little more. The muscle twitching (festiculations) were getting more obvious as was the slurring in his speech. I prayed hard that it wasn't MND, but I did not have a good feeling about it.
A year on from that day, how life as changed. Chris cannot walk very far at all and then only with a stick as his balance is very bad. He now gets around in an EPIOC wheelchair. His hands have gotten weaker and his muscles generally are showing obvious signs of wastage. His speech is deteriorating quite fast, as is his swallow and he actually eats very little now. He used to have a lovely singing voice and now that is gone. He would still rather drink his daily shakes rather than have them down the PEG tube, but it takes him so long to drink or eat anything, so the actual process of doing either seems to take up most of the day. He seems to choke on most things these days too, I am pretty sure that is why he doesn't really fancy much to eat. Farm work is restricted to office work only, he can no longer do any kind of physical work on the farm. He can no longer drive a car or any kind of vehicle and he can no longer climb the stairs so we now sleep in the dining room.
This disease has taken so much from him in the past 12 months. I would be lying if I said I wasn't scared of what the next 12 months will bring. We are very fortunate to have a bungalow to move in to, but it is taking up so much of my time at the moment trying to get things ready and organise the move, that I have to leave Chris for a few hours a day. I hate leaving him for so many reasons, time is so precious. Who would have thought that 12 months ago Chris would be leaving the home he was born in because of this damn awful disease.
How we hate it !!!
