FTD Land

My name's Marlene and I am 41. My mother, age 69, was diagnosed with Frontotemporal Dementia in January 2011. She has Progressive Nonfluent Aphasia. She also shows the cognitive (but not motor) symptoms related to Corticobasal Syndrome, such as apraxia, acalculia, visual-spatial impairment and significant language issues.

Degenerative diseases such as Frontotemporal Dementia and Alzheimer's do not run in my family on any side, so my mother's condition does not appear to be genetic.

My father and I are her caregivers by day and by night and this is our journey.

You know what it is? It's not Alzheimer's. This is the hardest thing to explain to people who only know Alz. FTD is different.

My mother has difficulty finding words although she knows what she wants to say; she's not able to handle the slightest stress and she cannot plan her behavior in many ways. She might get confused, but she surprisingly aware of what's going on around her and much of her memory is intact.

She has strong days and weak days. Sometimes she's frightened, often she's frustrated. Mostly she's worried that she's not doing what she's supposed to be doing.