We are adding methadone to help with the pain in Charles' jaws. We will still use the morphine as well. I wasn't aware that PSP patients had this much pain and especially in the face.
Next steps will be watching for pneumonia and then.
Anyone else had this scenario? We won't have a feeding tube so time is fleeting
Cuttercat
This is my first hearing of jaw problems. I'm wishing you through it quickly!!!🙁
I've not heard of this type of pain. Sorry, Cuttercat. It sounds miserable. Wishing the best of whatever may be. Peace, ec
Sorry can't help. Just wish for ease for Charles and you at this difficult time xx
I'm sorry cuttercat to hear this.
My mum has lots of pain also ... we have tried so many different things . The pain is down mums neck , shoulder and arm and after trying everything prescribed the only thing that gives slight ease is volterol .
Thinking of you and we're all in this together ... sending you peace and love x
Meant to say strong paracetamol combined with volterol ... it gives mum some sort of slight relief from constant pain ... at moment anyway .
My wife has just had a Botox injection to relieve pain in her neck, shoulder and left arm caused by tight muscles. Although early days the pain is much reduced and there are signs of improved movement.
Also george has never complained of this, sending you a hug xxx
The horrible symptoms seem never ending don't they CC, I hope they find something to ease his pain and discomfort at a very difficult time for both of you. Ben has very stiff arms, hands, neck and toes and tells me in his way that they are painful, he is such a brick and bares this terrible disease with humble dignity, not sure I could be as stoic as he is. Sending you both my love and support.
Kate xxx
Hi. My hubby gerrys jaw has completely closed now, hence the peg, but he never complained of pain the whole time it was moving. No help but i do hope the morphine and methadone keep the pain under control.
Marie
Hi CC does this mean no food or fluid??? I guess it does. How terrible for you to watch this happen. The mental stress must be awful x
Still drinking and some food intake. It may make it easier to eat for a short time until everything else shuts down. Yes, so hard. Don't know if I can do this!
CC
Ahh. CC. So so sorry. I think my husband is not far behind. I honestly can not think of a more horrible disease. 
You and Charles will be in my prayers.
The pain from cramps in his legs was unbearable for my dad. It happened mostly at night. I haven't seen others on this site that had the same.
Each person is different I guess. I was hoping for now pain but alas.
Thanks,
CC
Sorry I can't help. I have no pain yet.
I have a Advanced Decision refusing a feeding tube.
It must be hard to let go.
I feel for both of you.
Liz
XX
Dad passed away last month from PSP
I have been dreading the day that I would post this message.
