Please does anyone know about prion disease and how to cope with it in practical way?
I am sorry you haven’t received a response. It could be that nobody on the Community has the knowledge or information you are looking for. I have found details for the National CJD helpline 0800 0853527. Their web site states that they aim to offer practical and emotional support to individuals and families concerned with all forms of CJD. So I am hoping they may be able to answer some of your questions and give you details on how to cope.
Marie Curie Support Line