There is a lot of excellent advice here. I do reasonably well following it except for being able to supress the guilt of not contributing more than I do and in being able to laugh more. For a long time I was even snippy with people and this made laughter much more improbable. It can be hard to be in pain and socialize normally especially if you never did a lot of socializing in the first place.

The terror of this disease is just pervasive. There's always the thought in the back of your mind that you didn't really do anything to get here and the slightest slip can cause symptoms to worsen horribly and even permanently.

But we do have to get out there and do as much as humanly possible and stay as active as we can or we'll atrophy away much faster. For me this requires that I find things I enjoy and continue to do the things that I always enjoyed even if I can't do them well. Hobbies are critical even if it's just reading. If holding a book is hard then read books on the net. As the person in the link said; modify. Make the adjustments necessary to continue to lead as normal a life as possible.

For me this is mostly about trying not to dwell on the dangers. Being as careful as possible tends to help this a little.

Learn your triggers and avoid stress.