Hi, I have been searching the internet for more infor. My mother was diagnosed May 1986. She has lost her hearing in her right ear and now her left ear is to infected for them to do anything. Her eyes are getting worse. She is 61. It is getting scary knowing she was only given 6 months to live in 86' and she has hanging in there. So who ever reads this there is hope. If any body wants to email me please do. You are not alone out there. Take care.