seizures/ shakes

[daughter_Julie]

Hi , does anyone have any experience of pwpsp having shaking episodes? Dad starts to shake furiously hands, arms, legs everything and he grips either our hands or his own and clenches his teeth. He looks really frightened when this happens (lasts probably about 30seconds) and breaks out in to a cold sweat. It happened a while back for a few days and now its happening again. What on earth could it be and how can we help?

[rainbow33]

My Mom as these shake episodes and it can be quite frightening for her sometimes she thinks she his falling. But as yet my Mom as not been diognosed yet although she did start falling backwards in 2009 untill she fractured her hip in 2010 and then moved in with us. i am fighting for a diognosis at least the i now what i will be dealling with.

Regards

[jimandsharynp in reply to rainbow33]

Rainbow, Be brave and whatever the diagnosis is you can deal with it. I've found it amazing how I've learned to cope and adjust in difficult times.

Jimbo

[Panda69]

Hi Julie

My mum is in the late stages of this terrible illness ...and shakes her left hand a lot.....sometimes it stops when I hold her hand other times my whole arm shakes with her. She also has a tremendously strong grip...I have to prise her hand open to release myself from her. Today she didn't seem able to open her eyes when I visited but shook her hand and gripped hard when she knew I was there. I am hoping that she was just too tired to open her eyes but obviously I know that this could be another dreadful thing to cope with.

My thoughts are with you and all sufferers of PSP.

Anne.

[richardkoe]

hello rainbow... my Mother died from PSP some years ago, and the most frustrating aspect was definitely diagnosis. Have you been in touch with the PSP Association? I understand they have a Help Line to guide you in the right direction. best regards, Richard

[flicka in reply to richardkoe]

Well done Richard you are absolutely right the PP Association was set up to answer these questions AND most importantly to fund research so we can eventually find a cure . Every best wish to you all Victoria

[flicka in reply to flicka]

So sorry everybody missed out the S in PSP Victoria

[JoJo-K]

Hey Julie, my mum was taken poorly the other week, sweating, no temperature but with chest pain. Rushed to hospital who by the morning had ruled out heart attack. They reckon the pain was from an oesophagus spasm. I have read lots that PSP can cause whole body spasms or maybe just a limb. Do you have a PSP nurse who you could speak with or ask for referral back to neurologist, GP's here in the UK are very reluctant to prescribe medication, but I have read muscle relaxants can be prescribed for spasms or the opposite spectrum where the body can become rigid. My mum also in final stages (so neurologist said last October) She is always tired now, and this oesophagus spasm was definitely something she hadn't experienced before. If you google PSP and spasm there is lots to read. Hope this helps. I know how frightening it is when you don't know what is going to happen next, sending you a big hug x

Jo. (UK)

[richardkoe in reply to JoJo-K]

Jo, if you haven't already, definitely reach out to the PSP Association helpline 03000110122 as they have experience and a network of specialist care advisers. hope that helps (I am a trustee of the charity), Richard