Managing aspects of progressive conditions

Hello all,

I am on the neuro prac in an outpatients setting and I have an older gentleman who has Progressive Supranuclear Palsy (PSP), my supervisor said it goes under a newer name but I forgot exactly what it is called now (will report back soon). To quote wikipedia PSP is: " frequently misdiagnosed as Parkinson's disease because of the slowed movements and gait difficulty, or as Alzheimer's Disease because of the behavioral changes. It is one of a number of diseases collectively referred to as Parkinson plus syndromes. "

This is a rare and truly tragic condition and unfortunately I have now seen two such patients on two different pracs.

The first patient and their immediate family had just been explained the condition when my first prac had commenced and they were in a great deal of denial about the disease. They where constantly asking me to address the patients RC dysfunction.... despite her history of recent falls (resulting in her torn RC) and her increasing difficulty with transfers. These more important issues were clearly to be the focus of my attention but it was difficult to, sensitively, bridge that chasm of understanding and acceptance as to why these matters were to be addressed in light of the impending deterioration.

Now, on my new prac, I am encountering a yet another, different, stage towards that of acceptance which is fear and anxiety about their condition. This patient is keenly aware of his increasing reduction of voluntary movement...and this loss appears to be moving swiftly. In his case, I find it awkward to tactfully introduce such treatment strategies as bed-mobility because right now he can still move reasonably well. We both know why it must occur but there is an air of silence surrounding the rationale. It is tricky when we are students that waltz in for a month and then leave again to establish the kind of rapport needed to build that kind of honest relationship.

I remember reading about these stages of acceptance in our Umphred text and wondering just how regimented such progressions are. All I know is that each stage requires a different type of communication between PT , pt and care-givers. I am certain we have all been in such positions on prac before and would like to open dialogue on how some of you have managed this side of physiotherapy. Cheers, M