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jeeshh Tillie... I feel as though we are living a parallel life separated by 2 years. Bulbar/FTD so cruel and torturous. Sometimes I am so grateful for finding this sight and other times too much knowledge as to whats coming...unbearable. OK...that must've been a vent...I'm done. Thanks...

Good Evening Sunandsea, Thank you for saying something I've been thinking for weeks now. I'm so amazed at how lonely I am and that can be with Jim sitting in the same room. Hard to know if he might be feeling the same way. Here it is a beautiful summer holiday evening...we would normally have...

Hi Lenore, My husband had c9 done gratis at the UofM as well. Do you know what else they are testing for? Glad to see a fellow Minnesotan... Pam

Welcome Sunny, I too am brand new to the group and already have found new strength from the collective wisdom. My husband is also struggling with ALS/FTD. I have been looking for this site for months as nobody on some of the other sites seems to be dealing with this double-whammy. I feel as...

Tillie, Just read a post that you posted about the duration of your's and Chris' suffering. I think you mentioned 11mos. Is that common for ALS/FTD? I know from what I have read so far that it has a more rapid projectory but jeeeshhh...is it that rapid??? commonly???

Thank You, Thank You....a hundred x's Thank You. I am so sorry that you had to be a trail-blazer through this horrid terrain but thank you once again, for mapping it out for those that will follow . My Jim seems to be rapidly progressing. His diagnosis was in January. He already has his...

Good Morning Becky, Yes, Jim is a Veteran and is being seen at the SCID Clinic at the Minneapolis VA. A fabulous team. We are lucky enough to be in a state that has 4 centers. And we started at Mayo and also had one clinic visit with the U of M. But by far the best match for Jim is at the VA...

Thanks Sue.. Already learning so much. I could get lost for days on these threads.... Thanks, Pam

Hi Laurie, It's a little bit of everything. It used to be just in the morning. I thought it might have something to do with blood sugar. But I have noticed in the last week, it's almost all day. Yesterday, the only time he wasn't chattering was when he was napping and then finally when he had...

Thanks Nikki...I am so sorry for your loss'. I will have many more questions I'm sure. Thank you for reaching out