So we thought my mother had FTD. However, her new neurologist requested that she have cognitive testing again, to see where she was at, since she's at the seven year mark and isn't progressing as quickly as FTD is known to. Today we got the results back, the nueropsychologist believes she has Lewy Body, which I've felt was what she's had for years, but they kept telling me I was wrong and didn't know what I was talking about. Even though she has the tremors, the fluctuations in cognition, the staggered gait, etc. We have to wait until June 7th to see if her neurologist concurs with him. If he doesn't, I'm getting a second opinion (honestly it would be more like the sixth by now.) The first neurologist, who specialized in Dementia and Alzheimer told her it was all in her head, and to seek therapy to get past whatever block she had.
Anyway, I know the basics of Lewy Body from past research, but now I'm going to dive into learning all I can about it. Now, that I'm looking at all the symptoms, I'm wondering if my Aunt has it as well. I need to talk to my cousins (who I haven't spoken to in twenty-two years. I'm 26) and see if she has had an official diagnoses. She's already in AL, cannot speak, and has trouble walking, among many other things. She's young as well 63 (my mother is 53). My grandmother was 65 when she died, she died from pneumonia, but was diagnosed with ALS and Dementia. I'm starting to wonder if she didn't have it too, since she died in 1993.
I've already been to the LBD site. I don't allow my mother to have access to the internet anymore, but she is curious about it and wants to know more. Are there any recommended books that I should get her?