Guest guest Posted May 30, 2010 Report Share Posted May 30, 2010 Are you kidding me!I am so angry right now I feel like my whole world is shaky. In 1997 we were running back and forth to UCD,Sacramento because they thought Fred must have cancer and maybe beginning Alzheimer's.They even saw some of his weird things and thought brain tumor or somekind of cancer.Do you know how much easier life would have been if anyone would have thought of lewy body? Or in 99 and 2000 and 2001 when we were doing the comatose stage and they thought so many different things, including illegal drugs. Fred has probably been drunk 5 times in his whole life and never done drugs of any kind.But of coarse they wouldn't believe us.Then he finally does get diagnosed and I learn so many tricks to dealing with him that our life is SOOO much easier. I'm actually laughing again which I couldn't do for years. And now I hear there is a LIST.I'm too much of a computer idiot[my son kindly calls me a novice]to find it, but if someone can tell me how, I am personally going to take it to every doctor in Klamath.I know there is at least 1 more LBDer in town because he was in the hospital bed next to Fred. Both of them had the exact same behaviors and neither set of Dr.s knew what was wrong with either of them.I'll bet there are more here that are going through hell,too.I still have the wrong idea about lewy I think.I thought like there are different reactions to pills,that there were different reactions to lewy.I have learned so much from everyone who has the same problems,but I have been so grateful we were luckier than most.Is that not true?Are we all going the same places?Since our docs are worthless to me on this,please you so unlucky experts on this nightmare help me again. You do have my undying gratitude, if that helps. Quote Link to comment Share on other sites More sharing options...
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