Friday, February 12, 2010

a pleasure helping others

Julie and I have been sent so many messages of inspiration, encouragement and hope from all over the nation. We worked very hard to get back to most everyone and Julie has even had conversations with a few of the families. We have heard from Michigan, Florida, Pennsylvania, California and so many other ALSA chapters as well as families. We are so grateful to have these connections and to be able to help people who have recently found out that they have ALS, PLS or other similar MND's. Some feedback has come to us which has been less than positive regarding the show and the focus of it. Honestly though, this has been less than 10 letters out of close to 1200. A very small percent indeed, but it was interesting to us that those few writers came from the ALS patients groups that we are in touch with through newsgroups or forums. And, of the people writing from that group, it was sad to notice that they were progressing quickly. I thank God every day for a slower than normal progression, but it's not fair to anyone living with ALS and certainly is much worse when things are going quickly. It has so much to do with attitude and outlook. Some people in those situations are very bitter, mad at the world and quite frankly in shock about why something so awful would happen to them. It appears that the first year or two is spent dumbfounded in the shock and not knowing what to do. It then appears that after two years or more, people become a little bit more either comfortable or understanding of their situation and attitudes seem to change. Either people become more at ease with their own mortality or caught up in an attitude of making the most of the time that they have left. This is all very hard to put into words, and I'm not exactly sure why I felt like writing about it... I suppose it just helps me to put these things into writing and possibly my thoughts may be shared with others. I'm open to any criticism or feedback on this post. In fact, I am interested to find out what others think with regard to post diagnosis the motions and the various phases that patients go through when dealing with ALS.

Wednesday, February 03, 2010

continuing exchanges after the show

Julie and I are still continuing to go through the thousand or more e-mails, thank you notes and donations after the show. This is not a chore, but a pleasure, albeit a time-consuming one. We are also receiving countless recommendations with regard to different supplement regimens, lying disease or other conditions that people are telling us about. I came across an interesting article, here and there are countless others. We have also been made aware of many new websites and also new ALS resources or family stories.