I've had PP MS since about 1986, although looking back I'm sure I had symptoms before then, and I suppose my position represents exactly what most people fear about the future with MS. I can move my left arm and fingers a bit, and my legs will bear my weight for a few seconds, and that's about it. In my darkest hours I remember imagining the future like this, and the cold chill of fear that ran down my spine at the thought – my most basic needs being met by other people; not being able to do the simplest thing for myself; even having an itch that I can't scratch – every possibility seemed terrifying.
Well, the future has arrived and, you know what? You can get through… over the years, bit by bit, you retreat in the face of each defeat: trying to find a new way to do the things that MS says you can't do any more, (for instance, using speech recognition to write this), mourning and accepting the loss of those things that are really out of reach.
BUT! As I've said before: I am sure that my present is NOT your husband's future; understanding of this disease is moving forwards – though not as fast as we'd like – but don't forget that there are many, many diseases of the central nervous system which are being researched and attacked on all fronts and lots of them overlap with MS, sharing some of the same underlying processes. Also the subject of tissue repair is moving forwards apace, which holds the promise of restoring tissue no matter what caused its loss – disease or accident – and raising the possibility of dealing with the damage caused by MS even before the disease itself has been tackled.
The worst case scenario by no means happens to everybody, and it's good to contemplate and face your fears, just never lose sight of the fact that one generation will see the the end of this nightmare – and it might just be this one!