Obviously I can only imagine what it is like to give up as much independence as most of the PALS here, but I think that Elaine is wise to use her chair. Save your energy for the fun things. Falls can and will shorten the time you have to do the fun things, as it speeds your deterioration. When my husband started using his chair, he noticed that the decreasing arm strength slowed down. You can use substitute you motorized wheel chair for your legs, but there is little to do to substitute the loss of your arms. But each person must weigh what is most important to them, independent at the risk of exacerbating the disease (in those who are unsteady) and quality and length of time they can sustain the use of their entire body.
I guess it all comes down to each persons definition of quality.
Last night my husband confided in me that his greatest fear is the loss of the use of his hands. Today he leaned his chair back for a rest, but lost the grip on his controller so couldn't sit up again when he wanted to. He is not one to feel sorry for himself, but I could see the loss in his eyes, and it breaks my heart.
