How much pain are PSP patients in? My Dad's face always look like he's but he says he isn't.

[ddspan]

[Kathy]

This is such a difficult question to answer as pain is such a subjective thing. My Mum also often looks like she is in pain and sometimes she says yes and sometimes she says no. Try asking the question differently e.g say "Are you uncomfortable?" or "Do you need to move?"

Not much help, I'm afraid

Love to you and your Dad xx

[hazelb]

Hi ddspan.....as Kathy says, a difficult question. Everyone is different. Frank said he was never in pain. In fact the only painkillers he ever took were for Arthritis in his fingers, Even in his last few days, with a box full of injections ready for use by the District Nurses if needed, he had nothing other than one to calm him a little. I'm not even sure he really needed that but he couldn't tell us so we thought " just in case ". Sorry that's probably not much use to you. I agree with Kathy though about phrasing questions differently....you then may get the right answer.

Take care & try to keep smiling. Love Hazel B xx

[Peter3]

Hi Ddspan,

I agree with the two previous answers. My husband frequently looks as though he is in extreme pain and when asked he usually answers no. Just at the moment he is taking painkillers because of a recent fall in which he bruised his shoulder quite severely. My husband now also has his eyes shut much of the time, but when we speak to him, he usually is awake.

Stay strong and take care.

Love

Peter3

[ddspan]

Thank you all so much for your answers. When we ask Dad he says he is not in pain although his face clearly looks like he's in pain. Of course he takes multiple medications for his illness, but the only pain pill he ever asks for is ibuprofen for his headaches which he has had for many years.

Just knowing that you all took time out to answer my question makes me feel so much better. I've never seen someone with a terminal illness, Dad is the first in our family (so I guess we're lucky), however I never thought a disease could do this to a strong vital person -- it is such a horrific illness and its destruction is so hard to watch. Luckily Dad's mind is still pretty sharp and his personality is very sweet and childlike. U

nfortunately he can't talk,walk, feed himself or do anything without the help of at least 2 people. God Bless you all for your courage and love.

Thanks for your input.

[dllera]

Hi DDspan - unfortunatley - my father had pain. We were on a pain medication management plan. He was also extremely rigid which not all PSP people suffer from. His hands hurt him a lot because they were clenched and we had to get them open all the time.

[Cinderdawg]

My mom has always had pain, I just never saw it associated with PSP until reading this. She has pain management but it just feels, like they just throw meds at her and don't care about how it correlates to the disease. Frustrating not having much info on this disease in general and hard to watch her disintegrate from the outgoing, vibrant woman to a frail shell of a human. I am glad to have this group to get real life info, as difficult as it is to read it does help to know there is support.