Hello @lorabuntin, Welcome to Connect. I know it has to be difficult for you as the caregiver and not knowing how to help. It's good that you are advocating for your mother and learning as much as you can about her condition and what might help.

Did you see the post by @qball2019 above that mentions the sites for information on the condition? Here's the link to the post - https://connect.mayoclinic.org/comment/610431/