No replies. Nada. Maybe I have worded this wrong. I'm so alone in this.

How about: How do you cope with all the uncertainties of progressive motor neuron syndromes? And the pain, wow, that is a whole other subject. This stuff is like a time bomb. Regardless, I still do everything for myself. I just don't want to give up anything.

How do you deal with family members that don't get it, don't understand, don't have time to deal with this. My daughter wants me to move closer to her and her family, but then says, "Don't expect any help with the packing or moving."

How do you feel when insurance doctors say "We know you have something, we don't know what it is, but we don't think it is going to kill you." Or when one neurologist got something on the EMG, he kept checking the machine like it must be broke, then said, "You have vindicated yourself."

LaVerne