While we formally meet with Dr. Halperin next Wednesday, we were given the diagnosis today -- Primary Progressive Aphasia (PPA). This is also about the worst case scenario we could have imagined. Primary progressive aphasia (uh-FAY-zhuh ), as the Mayo clinic defines it, is a rare neurological syndrome that impairs language capabilities. People with primary progressive aphasia may have trouble naming objects or may misuse word endings, verb tenses, conjunctions and pronouns.
Symptoms of primary progressive aphasia begin gradually, sometimes before the age of 65, and tend to worsen over time. People with primary progressive aphasia are fighting against a condition in which they will continue to lose their ability to speak, read, write and/or understand what they hear. There is no known cause or effective treatment. We were counseled mostly on coping strategies. However, there are things we can try to help more effectively manage the progression (hormone therapy, acupuncture, speech therapy, and a bit more of a long shot is experimental clinical trial drugs if there are clinical trials being conducted).
Dr. Papka said the majority of Marcia's issue is with language, as we know. Her memory was tested and though she had trouble repeating information, she was able to accurately do yes/no responses. However, she said there was some memory issue on the low end of normal for her age.
She stressed that Marcia should proceed with speech therapy. Marcia does not want to drive to Summit to do this, but would consider if she could find something closer to home. Dr Papka said that is fine as location will only help compliance. However, she does recommend a speech therapist in Summit who specializes in PPA. I do think Marcia needs to focus on quality of care vs convenience, as does Dr Papka, but she also said doing something regularly is most important right now. She also recommended counseling for coping and anxiety and to use her as a resource whenever we need help. Marcia can't really benefit from counseling until she's ready to talk about PPA (my opinion). Dr. Papka also suggested it might be beneficial for me to meet with her separately, and I'm planning to take her up on this. I need to check what my insurance covers to at least understand what's covered and what is not. Bayer also has an "Employee Assistance Program" which might provide some help for Marcia and/or me on the counseling side. Dr Papka also didn't discourage alternate therapy from acupuncture to ob/gyn specializing in per menopause/menopause, as they couldn't hurt.
Marcia is holding up remarkably well, better than me actually. But she's either optimistic about some of the alternatives, or isn't clear about the diagnosis.
I think we share more information with friends and extended family after we meet with the neurologist next week.
How to talk about this with Marcia, friends and especially the kids is something I need some professional help with and have not yet had. I will tell friends what's going on shortly.
Also, her positive thinking about alternative therapies is a good thing and Dr. Papka doesn't think focusing or even talking about possibilities that are less than hopeful would be helpful right now given all she has to process.
I spent a good part of Saturday afternoon reading about PPA clinical trials, of which there are few. Sent emails to authors of these trials asking for information. Today I will be looking for ob gyn with expertise in per menopause and menopause -- looking for hormonal testing and therapy, and acupuncture practitioners. Maybe they have expertise we can use.
Long road ahead of us here. Optimism has to be part of the journey.
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