Thank you for the reply EF, I have been meaning to check in much sooner but things have been quite rough. We had what looks like mum's last physio appointment for the time being. The physio has experience in parkinsons, says mum is doing her exercise right but looks to be getting no benefit. As they can only prescribe exercise there's nothing more that can be offered. They suggested CBT, distraction (put music on and dance? !!) and made a point on relaxation to tackle anxiety.
They seemed to suggest mum was anxious, focussing on pain too much, as she paces the floor a lot and can't stay still for long. For me it's surely her pain and discomfort that have her pacing the floor. Any chronic health problem would cause emotional distress. I know focussing on a problem makes it harder to cope but regardless it's still there. I wish more people who don't live with chronic pain would appreciate that.
We won't be seeing the Parkinsons nurse or consultant often as she has not responded well to Sinemet. There's nothing more they can do, we're told it's not MSA but a rare form of parkinsons.
I've had a relaxation tape, do try to break up the day but it's not easy as I've had chronic pain and fatigue myself for 20+ years. We're on our own most of the time and it's getting more difficult so I really don't know what the answer is going forward. Seeing mum looking vulnerable and crying in pain breaks my heart. Her back and legs seem worse lately.