your stories

I know it's a reach- but one of my future goals is to get into contact with others dealing with Benson's Sydrome. To hear what they have to say, and to let them have a chance of sharing their story.

This page will be the place for those stories.


anonymous messages:
Your blog is very inspiring, Talia, and no--you're certainly not the only one. I'm also watching my dad slip away from me, and the worst part of this disease, is he's completely aware of it, too.

The diagnosis path is the same. First eye exams, then many months of testing, testing, and anxious waiting for results that only seem to demand yet another round of tests. We found ourselves wishing for a brain tumor because that would be something tangible that we could understand. No such "luck"... PCA.

Today, I spend as much time with him as I can. Partially because this is terminal and I want to have this time with him when I can, and also to give my mom a break from her role as caregiver. She gets frustrated and understandably angry with him. She can't help it, it's hard, she's human and I can't even pretend to fathom what it must be like for her on a daily basis.

Also, my grandfather suffered from a similar condition, but nobody knew anything at the time but to label him a 'crazy old man'. I loved my grandfather, and never appreciated him while he was alive. This could be hereditary. Am I next? Are you?

You're certainly not alone. Support is out there for you and your family, though it may be more dementia and Alzheimer's focused. And I'm here... reach out if you'd like. I'll be watching your blog for future updates. Stay strong!


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Hi Talia,
I don't mean to be anonymous; just looking to post. You are very articulate and I figure your Dad probably used to be, too? 
My husband was reassured by the diagnosis of Alzheimer's. It affirmed he wasn't stupid. Instead, he had a disease. It turns out to be the PCA variant, and that explains how he can get so lost, or not "see" something right in front of him. Like your Dad, I think, he has worsened, but also gotten past some of the early, intense frustration. He is now cheerful and funny, and yes, we sometimes dance aound the room when I come home from work.
Your Dad is lucky you are in his life. I'm pleased to have found your blog.