Just home it's midnight. FiL had a 3 hour episode of spasams which took over the whole of his body they came and went every 30 seconds. I have never seen any thing like it. Ambulance called all vitals pretty much normal but spasams so violent we had to go in. Whilst waiting to be seen spasams subsided. FiL back to himself. Checked over offered bloods which they didnt think would show much. FiL was knackered so we decided to come home.
Thst was the worst I have seen so far. Wow any thoughts? Xx
I have never seen anything like you are describing. The only thing that comes to mind is an Epileptic seizure, which I am sure has been ruled out.
Ron
Hi
Geoff has these daily now.
They are called Dystonia. Procyclidine and Baclofen were both prescribed but sadly with little effect and so he now has the procyclidine in syrup form and diazepam intramuscular injections when he goes into a sustained Dystonia.
His seizures comprise of rigidity throughout his body from his face right down to his feet.
His hands and feet look like they are in cramp.
His body arches backwards and he sweats profusely.
If these are the same then the above meds might help. Proff Rowe a specialist in PSP has said that it is common to have Dystonia in PSP but not so common to have the sustained seizures that you describe and that Geoff is now having daily.
I hope this helped. But unfortunately we have been told there is not much more they can give Geoff so he is either seizing or sleeping.
Sorry I posted this initially in dadshelper box!
Hi
Geoff has these daily now.
They are called Dystonia. Procyclidine and Baclofen were both prescribed but sadly with little effect and so he now has the procyclidine in syrup form and diazepam intramuscular injections when he goes into a sustained Dystonia.
His seizures comprise of rigidity throughout his body from his face right down to his feet.
His hands and feet look like they are in cramp.
His body arches backwards and he sweats profusely.
If these are the same then the above meds might help. Proff Rowe a specialist in PSP has said that it is common to have Dystonia in PSP but not so common to have the sustained seizures that you describe and that Geoff is now having daily.
I hope this helped. But unfortunately we have been told there is not much more they can give Geoff so he is either seizing or sleeping.
Thank you your information and guidence is really valuable. It just helps to know what we are dealing with and talking about and the best way to describe what is happening when making the assistance call to emergency. I initally called the out of hours service. Who called me back eventually and gave me a proper telling off for not 999 calling. At no point was my FIL unconsious he was talking inbetween he wasnt confused, twice he got up to use the toilet. He wasn't hot or cold even his pulse was not racing. The only reason I really was concerned because it wouldnt stop. An hour after arriving at a&e they subsided and he wanted to go hom to bed.
Hi, I wish I had known about this 8 months ago. My sister had several of these, what I called seizures or episodes. No one knew anything about it's correlation to PSP. She would freeze up her body, every muscle became stiff and cramped, she sweated profusely til she was soaking wet, couldn't talk or engage with anyone. Scared the stuffing out of me and my caregivers. Her hospice was of no help, they didn't know anything about dystonia. We just had to wait until it was over, get her bathed and dressed and help her to relax. She wouldn't have any memory of any of them. Now, she's in last stages and doesn't have them anymore. God, I despise this godawful disease!!!
None of it is good. To see someone you care about out of control and struggling.on reflection today when we talked it through. He said he wasn't in any pain. It just wouldn't stop. He's been back out on his bime today albeit staying local and on the flat. He's a legend in my eyes. Back to business today getting on with getting on. Thank goodness. Xx
That is exactly how Geoff is and he is constantly in and out of Dystonia and he cannot remember either. I am at the point now where I pray he will just go to sleep and not awake, simply because I love him so much and cannot bear this slow awful demise.
So scary, Ben only had a couple of episodes and both linked to UTI, his were more of uncontrollable spasms and not lucid so a bit different to FiL. Whatever it's all s---t and so frightening.
K Xxx
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