How things feel

ALS is peculiar. To be sure, pain and constriction, spasms and fasciculations, sluggishness, depression, fear, heightened emotions, fatigue and a diverse host of other symptoms invade, but none of them accurately describe more than a single piece of the puzzle that is Gehrig. Let me try to explain.


Standing, walking:


I feel no pain when standing, though most of the time I need a hand up. Nearly every time I stand, my body- head to toe- locks up for a number of seconds. This action occurs often at night but rarely during the daytime. Once standing, I cannot take a single step without the security of something- or someone- to hold onto. I have very little personal balance. Each step is 6 inches or less and the effort to will myself forward is monumental. I am not too weak- my knees do not buckle- but every step is a master chore. It takes me 5 seconds or more to move each foot. The best way to describe the delay would be to say that I must convince each leg to respond. The only walking that remains practical is transferring from bed to chair. I feel lucky that I can walk at all considering the prognosis offered by the neurologist in Chicago a year ago this week that I wouldn't be walking by Christmas 2011.