Thelma,
I admire everyone living with this disease.
There are no right or wrong choices to make and everyones personality is different.
In 8 years my focus has shifted dramatically as Gary became more advanced., I spend much of my time focusing on traches, vents, catching secondary infections early.
This might be a bit much for people newly diagnosed with the disease.So, I only tend to post on these things when questions are directly asked though I do go into great deatail ., as fears are often worse than reality.
I don't spend aot of time on tracking experimental medications any longer. As Gary has not tried any in years.
However, I understand why some people would gravatate to a site that focused on tracking experimental treatments.
I think " all " ALS sites provide a valuable service. This one included.
I am glad things are much different than the old days.
That an ALs site now exists so people can track meds with experimental things., with graphs and charts.
That one site has a legitimate AL S researcher to answer research questions and sift through confusing prsss releasing and published med.
That a nurse who speacializes in ALS can help answer medical and practial questions and moderate a board.
To me , the more ALS resources the better.
For me, I mainly read the news articles and human intrest stories posted here.
But, I really don't comment on the stories as every one deals with this disease in a different way. And there is no single right way.
If someone, however has a question I may can help with I try to help with it if I can.
Lisa