Pain medication

[nannygoon]

Rose only getting paracetamol for pain, but we don't know if she has got pain as she can't communicate.Do PSP patients have much pain? Today she was making moaning noises and gripping and shaking my hand eyes were closed all the time. Pleas reply if you can help me with this. Thank you.

[Hidden]

Dear Nannygoon,

These latest developments in Rose's condition must be terribly distressing for you but, judging from my own experience with my wife, Roisin, they do not necessarily mean that she is in pain. It could be misleading to generalize but in my wife'case, Roisin also moaned but assured me on a number of occasions that she was not in pain. I would ask her and say "if yes, squeeze my hand once; if no, squeeze my hand twice." I would also write "yes" and "no" and ask her to put a tick against the one that applied. A year or so previously, when she could still speak but had already started to moan, I asked why she did it but her answer was that she did not know.

But I never experienced the hand gripping and shaking so I cannot comment on that. Have you asked the staff if Rose has any infection? Have you asked them if her paleness and her behaviour could be caused by side effects of any of her medication? The week before Roisin died she became very pale one morning after her shower and passed out. She was taken by ambulance to hospital where she revived but in her case there was an infection in her lungs which caused her death a week later.

I wish I could write something more helpful to you.

Christopher

[nannygoon in reply to Hidden]

Thank you Christopher, she is well beyond squeezing for reply or using her hand to write. Last week when the staff got her to the toilet to chance her( she is doubly incontinent now) she took a kind of turn and slumped over she recovered from that,but now this today, very pale and blood pressure low. You have been very helpful, just needed to share it with someone who has been through it. Sorry for your loss. I will post again with an update of Rose, but I just have that awful feeling that she won't bounce back this time. Margaret.

[uton in reply to Hidden]

Yes at the moment my husband has the odd tremor and hand gripping, and light beging to affect him.Also the most excruciating headache's for the last eight years.paracetamol only but nothing works.diagnosed with PSP 3-3 -14. After two bad falls, chip of spine in August 14). Then broke hip Nov 14th.followed by heart attack .Then three stints, blood clot then infections home from HSP now very low, but comfortable.

[nannygoon]

Sorry about your husband, what a lot he has been through. Rose is my sister she is 81 diagnosed about 3/4 years ago biggest problem is she can't communicate so we don't know if she is in pain even asking her she can' trespond even by hand squeezing now!.I can only hope if the nursing staff can tell if she has pain and medicate her accordingly. Thank you for your reply and best wishes.

[littlesupermum]

Hi my mum has cbd very stiff and rigid. Often not able to say she had pain but would become very restless and agitated. We eventually realised she was sore. Started on regular panadol and brufen. Now on mst ( slow release morphine) 10mgs twice daily. Big improvement. But everyone different, might be worth trying regular panadol to start