Primary progressive aphasia is a rare brain disorder which, unlike “standard” aphasia, deteriorates over time and the person slowly loses the ability to communicate.
My mother has been diagnosed with primary progressive aphasia. It apparently started several years ago. It was considered “fluent” aphasia at first but at this point she can barely speak, write or communicate. She has had therapist-led speech therapy, home computer-based speech therapy and drug treatment with Piracetam/Nootropyl but nothing has helped her condition. Brain scans don’t show anything unusual and the neurologists haven’t offered any suggestions for helping her. I’ve done a lot of Google searching but found nothing promising. I feel that I’ve run out of options now and don’t know what to do next.
My father is her primary care-giver and I worry about both of them. When I visit them I try to offer additional suggestions to help her but he feels he’s done enough and told me not to bother him about it anymore. I pre-paid for 50 speech therapy session for her about a year ago at a speech clinic 10 minutes from their house. He never bothered to take her to any sessions. For reasons I’m not able to determine neither he nor my brother care at all that she has almost completely lost her ability to communicate. Trying to deal with my mother’s disability and the rest of the family’s reluctance to help her is having a very bad effect on me.
Does anyone have experience dealing with someone with this problem?
Can you provide any suggestions for helping someone with this disorder?