DYSTONIAS, SHAKING AND WHAT ELSE?

[Jo75]

Hello, I'm here again.

My poor mum has got peg two months ago but she continues to lose weight. She is in her seven year from PSP diagnosis and the situation is very very very awful for her (and my sisters and I too).

Now we have to manage more frequently that in the past a very strong shaking (she pulls her left leg to the chest and she sweats profusely and )in certain moment during the day: we've already verify that she has not pain, she has not UTI, no fever. What is this? Did anyone esperience also with this symptom?

Thanks to all .

[Heady]

S has just had this, but both legs rising in the spasm. He said he wasn't in pain. As been put down to a UTI and it took several bags of antibiotics and loads of morphin to stop. One suggestion, keep a diary of the times of day it happens and see what is happening before they kick in. It does sound like pain to me, S can never say if he is in any pain, either the pain nerves don't work any more, or he can't articulate the feeling.

Sending big hug

Lots of love

Heady

[Malm1959]

If my mom is not upright in her wheelchair, she slumps over and finds it hard to breathe. I would check that she has good positioning because it is stressful when they are gasping.

[twindles]

Twindles