Hello dfinch22, it was my Mom who had ALS, she stopped the Rilutek because it was so expensive. But we were willing to pay for it, however, she was noticeably progressing while taking it and I don't think the speed of the progression changed when she stopped. So we made a family decision to stop. She did not want to prolong her life being reliant on her feeding tube and unable to swallow even any do her saliva and worry about choking constantly, but to answer your question, in her case the Rilutek did not seem to make a difference either way. Good luck to you.