I suppose the visits to see the neurologist are just a checking in and catch up really as there isn't any more that they can do. It's a chance to ask questions too. Chris still feels like he is being lazy by using the wheelchair and mobility scooter and that it might be making him worse, but the Doctor told him that you can' t 'exercise' MND better and that all he would do if he made himself walk was to exhaust himself and that using all the tools/ equipment available to him was a good idea. I think that reassured him a bit.
The Doctor also asked him how he was getting on with the Riluzole. Chris said he had no idea if it was making any difference or not ( it only gives him 3 extra months ), but the Doctor said he should keep taking it as long as he had no side effects, so he will.
I also asked if the progression followed a definite line of decline, or if it could suddenly speed up and he said that it generally followed a straight line of decline, steeper of shallower, everyone was different. I think Chris may be luckier than some as I don't think his decline is a steep one. He did tell the Doctor how unsteady he is on his feet now and he said it was because the core muscles are getting weaker and Chris also felt his dropped feet were much weaker and that was also making driving and pressing on the pedals much harder too. I've noticed he has been more willing for me to drive, I guess that is why.
I think we have a breather from appointments for a couple of weeks. People say to just try and get on with life, But MND just takes over and consumes everything. There are always constant reminders of it. I cannot believe that in January Chris just had a bit of a limp and now we are here with a diagnosis of MND. I still pinch myself everyday as even now I just don't want to believe it is true.
