My husband just died of ALS after a 2 year and 8 month fight to live. Glad to finally read an article about frustration of the lack of attention to ALD-FTD, thank you! However, another issue is rarely touched on that fits a bit with FTD. Just before the ALS symptoms began a very slight personality change started and continued and advanced through diagnosis and the advancement of ALS. I felt like NO ONE was listening to this symptom. I still have no answers to this day, still have not read anything about it. I felt I was screaming in the dark! It is only after his death that my therapist who has dealt with ALS families for decades has told me of similar stories in personality changes. What a moment to finally hear someone say this. It was not typical dementia and its symptoms, but had an element to it. I don't necessarily think it was FTD, but I don't know where it fits. MORE, a lot more needs to be talked about regarding this. It is heart breaking to the caregiver, because in many ways I felt I lost my husband long before his death from ALS.
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