Working with posterior cortex atrophy - a kind of early-onset Alzheimer's

jaycey

I have a form of AZ called PCA (posterior cortex atrophy) which initially affects the visual system. I can no longer read hand writing, or recognize faces, or find information on websites or on printed pages because my brain doesn't take in multiple images at a time. It's very hard for me to find my way in places I don't know well. I have handicap status and, particularly, handicap worker status, which legally gives me the right to have an aid at work but my workplace (in France, where I live) has been extremely resistant and has made everything difficult and time-consuming. They hired somebody after 1 year of arguments, but still refuse to give her access to the websites I have such trouble using (and there are so many of them that we need to use at work). I can still reason perfectly well, which allows me to do my job as researcher and professor, but I'm finding that I process language more slowly (which I'm guessing means that Tau has moved towards the fronto-temporal region) and that is frustrating. After a year of living with this I finally told my team that I have a "neuro-visual disorder" and explained to them that I am absent 1 week per month for treatment (Donanemab/Kisunla is not available in France & so I fly to the US for MRIs and infusions). But with people not aware of the true nature of the illness, and their resistance to understanding and helping, work feels like a very very lonely place (as does lif in general, as I'm not in a couple, nor do I have family nearby). I burst into tears at work the other day, in front of the HR rep, and said that I was suffering from how difficult they make everything for me. They all expressed sympathy, but I doubt that anything will change. It's a workplace that makes a big deal about hiring individuals with handicaps, but when push comes to shove, it's just lip service. You might wonder why I don't retire, but work has been my life, for my whole life, and I love what I do.

I'm really looking forward to hearing from others of you still working.