Jeff, well said and great attitude. We take these times to be advocates for this disease and educate. But it is easier for us as Tim has perfect speech and is a teacher through and through. If it falls to the CALS who are already have their hands full, it can be overwhelming. When we are at our local mall, Tim gets a lot of questions and comments, as his PWC is not one that is seen often with its outdoor package. I generally keep on shopping leaving him to talk, which he loves.
I do think though the hardest times are with close relatives that don't seem to get it even when it has been explained to them. His older brother who is a dentist told him that maybe exercise would help him develop the muscles back. I wonder how many "spinal" quadriplegics are told to exercise, and that is just what I say. At least spinal quadriplegics can put electrodes on their muscles and the current makes their muscle tense, all Tim gets is a zap, no twitch. I tried it earlier in the disease, to see if it would help with spasms, or slow down atrophy. I've tried vitamins, minerals, supplements, gluten free diet, coconut oil, green and white teas, no fillings in his mouth, organic no msg's, did hours upon hours of research on medical sites that some of the docs I work with got me onto, and had the elders of our church pray over him. Finally I realized I was spending the short time that we had together doing that rather than living life with him and having adventures.
Sorry I got off on a tangent there.
Paulette
... Al Hamdullihah 
