My mum is in late stage PSP, probably 6-7th year. She has been bedridden since December. She started having seizures yesterday, I was wondering if this is a common trait, they only last a few minutes. The whole body does not shake, so not what most of us would associate seizures with.
The last 4 weeks have just been free fall, just continuously declining and something new to deal with. I don't know how much more my mum has to take, it's just too much.
This sounds terrifying. I don't think seizures are common with PSP, but they have been reported and discussed here from time to time. The end came very quickly for my love when he began his final decline. It was I suppose a mercy, but it was awful, too. I keep saying that the home hospice service was wonderful, but it seems it's not something you have access to? They gave me an assortment of relaxant medicines and drugs for pain in a kit, and a nurse came by every day to help me manage his comfort. I can't imagine how it could be done without that. Is there nothing like that for you?
ec good to "hear your voice" I agree with you on all points. In fact I am the one who has the seizures! but I digress....
Being from the UK am, you should be able to get some sort of relief for your mum if you call the gp about this new symptom....
I am so sorry, and I sure you already have, but like ec and so do I it was a quick downhill turn in their final decline....It might be good to alert family if you haven't already.
We moved Mum to the Far East so care is very different, in some respects better, some worse. You really appreciate the NHS and what they do and offer.
The problem with telling family is that we don't know how long mum has left. It's just so heart wrenching. I hate saying this but I can't watch mum suffer anymore. May God help us all dealing with this illness.
I know am, I know. I have told this to many people....I don't know what is better, to have a loved one die instantly and not be at all prepared, or to have a loved one progress as ours have done....I do believe the former is better. My mom died without incident and I was ok in a month or two....but each up to the individual...
I must say the Far East sound exotic! where abouts may I ask?
Call the GP seizures can be controlled...
AVB
I completely agree that the former is definitely better. Watching your loved one slowly lose all of their abilities, speech for us being the worst is heartbreaking.
Mum's in Malaysia now and I visit a few times a year during school holidays.
We've started mum on meds to stop the seizures, but it's just one more thing. Don't know how much my poor mum can take.
Thanks Easterncedar. Everything seems to be happening so fast. Moving mum from the UK has left a bit of a whole but the upside is that we have trained nurses looking after mum, not carers. The decline in the last 4 weeks has been shocking. I just pray for ease for my mum, I don't want to lose her but don't want her to carry on suffering.
Medically we know what to do, as we have doctors in the family. It's just there is very little knowledge in the medical profession about PSP. Just sad.
My husband who has PSP began having the same type of seizures last Feb. Fortunately they are now under control with medication but he suffered broken ribs before we got the dosage right. He is not quite as advanced as your mother, but his symptoms are progressing rapidly.
I just happened to notice it yesterday and recorded it to show my husband whose a doctor, he confirmed that it was a seizure. It looked like someone being startled in their sleep. We started to seizure meds immediately.
I'm sorry to hear your husband's symptoms are also progressing rapidly. All the best.
This happened to my huband too. At least it happened once. I am not sure if it ever happened again as he was in a Care Home. He didn't tell them what had happened. I think he was a bit bewildered by it and told me it hadn't lasted long. He also seemed to be conscious through out it. I told the nurse on duty but she never mentioned it happening again. How would they know though as he was in his own room?
Marie x
It's not what you would think of as a seizure, it's a sudden movement in one or all of the limbs and then it passes and then happens again. My mum is sleeping nearly 24 hrs as she is very late stage PSP.
Unfortunately, the nurse could not have known if your husband was alone in a room. I only realised because I'd seen something like this with a relative and I sit with my mum all day.
Dear am 2015, So sorry to hear it's another thing to bare. My Barry has not had seizures so I can't offer advice. Just know I am with you in spirit. 💛🙏 Althea
My son, who died on May 4, 2017, had a seizure on April 25, 2017 (10 days before his death). It was in the late morning. His case mgr (RN with Kaiser Permanente here in Los Angeles) happened to be there. His caretaker was walking him (with the help of a walker) to the kitchen to have his PEG meal. We all saw it. He started shaking, went unconscious for several minutes. His RN asked his caretaker to bring him back to his chair (he liked to sit in a HIGH BACK chair in the TV room). He was revived, according to the RN, after almost turning blue. Oxygen was given and four drops of eye medication (forget name) we use to control drooling. When he was able, he was walked to his bed without being fed and went into (what I called a coma). About 12 hours later he came to (midnight) and asked to be walked to the bathroom.
I'm so sorry on the loss of your son. Thank you so much for telling me about his final days that must have been difficult. I don't have words anymore to express what I feel about what has happened to so many loved ones and their families on this site and now my mum. I just pray for ease.
Hi yes seizures are very much associated with psp my brother started this months back where is whole body becomes ridged comes on suddenly can last for a few or sometimes a lot longer, his Doctor was here at the house yesterday and my brother had a seizure, and that is what he said it was, some have it others don’t , psp is such a dreaded disease.
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