My Dad has PSP (diagnosed 2012), yesterday for the first time he had what our GP diagnosed as a seizure. Is this common/to be expected ?

[poppycat86]

His doctor said he is entering final stage

[gypsywoman1947]

What happened in the seizure please. My husband is extremely agitated, thrashing his legs about, scratching head raw, panting almost as if hyperventilating and then his whole body goes stiff and shakes uncontrollably. Doctor said he doesn't know what it is or the causes. It drives me up the wall , it's constant all day and night. The shaking is about once a day. Haven't heard of any other sufferer of psp with these symptoms. He's ad the ill ness for 6 years.

Love GW

[Kevin_1 in reply to gypsywoman1947]

Hi GW

These sound traumatic for both of you.

Could it be epileptic seizures?

Can you get a telephone consult from your Neurologist. This does not sound like a GP level thing.

In this scenario I would telephone the neurologist's secretary and pass a message.

Warmly

Kevin

xx

[gypsywoman1947 in reply to Kevin_1]

Will do that Kevin Thanks. He's having various relaxant medications for this but nothing is helping

Regards GW

[raincitygirl in reply to gypsywoman1947]

Gosh GW - If your doc has no ideas wouldn't he refer your hubby for a neuro consult? I had a brother with epilepsy and I dont remember any kind of head (or other) scratching. Poor guy - as if psp isn't enough... My hubby has spastic shaking at night when he first falls asleep and no other time. I assumed this is a form of myoclonic jerks.

It doesnt sound like typical psp - I hope you get an answer - even if it continues it seems to help to know what it is.

Anne G.

[aliciamq in reply to gypsywoman1947]

Wow😐Hope Dr finds something soon.

[Esra in reply to gypsywoman1947]

Hi, my mom has the sane symptoms, she is taking Clonazepam drop. After having it, she is getting relax. You need to talk with your neurologist

God helps you

Esra

[raincitygirl in reply to Esra]

Hello in Turkey Esra! Nice to see you pop up

[Kevin_1]

Hi poppycat86

Welcome to the forum.

Sorry you are at this critical time. It is totally possible that the PSP/CBD is triggering a different disorder.

Agreeing with GypsyWoman - I have never heard of seizures as a PSP/CBD symptom.

The term seizure is more descriptive than diagnostic. That is there are many different reasons for them.

Please see my response above to GW.

Wishing your Dad the best, he is fortunate to have you organising his care.

Kevin

[enjoysalud]

I live in Los Angeles, Calif, USA. My son died of PSP May 4, 2017 at the age of 55. Symptoms of Parkinsonism appeared March, 2014. DX with PSP Jan, 2017.

I kept a journal (some times erratic, other times consistent) from Feb, 2015 to close to his death.

He suffered a seizure on Tues, April 25, 2017 (the only one), in the morning close to lunch. He was walking with his walker, his paid attendant right next to him, to the kitchen to be fed (PEG). The HOSPICE RN was there. I looked over to him and saw him start to shake a little, his legs start to give way............I started screaming to the attendant to catch him. Which the attendant did. The hospice nurse asked that he be brought back to the original room. According to the RN he was turning blue. She put back in his nasal oxygen tube. The attendant kept taking his pulse (none) and telling my son to "STAY WITH ME". The pulse came back. The RN asked that we put him to bed. He slept (coma???) for about 9 hours before coming to.... He pooped the next day (April 26th), ate, and had a great day. April 30th, after difficult days and constipation he asked for his feeding to be discontinued.

He died with a bed sore, thrush in his mouth, a PEG from his hospital stay of 7/8 days with 2nd bout of aspiration pneumonia, constipation, incontinence, unable to walk or talk, heavy drooling.

On the search PSP bar, at the top, put in "seizures and PSP", you will find others sharing on seizures.

Good luck, Margarita

[Keiko278 in reply to enjoysalud]

How did it all start? He was so young. I am so sorry.

[enjoysalud in reply to Keiko278]

I'm sorry too.

My son's first visible symptoms started March 2014, the day after a huge R&B concert. My son's first love was his bass, and he had played in a big Art Laboe R&B concert. He woke up the next day with DOUBLE VISION and slurred speech.

His father died of FTD, age 65, DX at UCLA. My father died at the age of 93 from cancer, but in his mid 50's came down with DOUBLE VISION and dystonia of the neck. My dad and my son both had necks that they could not move and caused them pain when they tried.

[Hidden]

Welcome to a group no one wants to belong to,you will find a wealth of first hand knowledge and experience.Rant cry,scream and ask away.You can do a search by going to the top right hand of the page ,under the more tab.

Dee in BC

[Kevin_1]

Prompted by enjoysalud - Thanks

"Among 62 patients with progressive supranuclear palsy (PSP) seen over a 9-year period, we encountered seven who had seizure phenomena. We suggest that PSP patients have seizures more frequently than has been appreciated."

Neurology 1968

[raincitygirl in reply to Kevin_1]

...Now this is one serious research Dude...

Kevin, I hope Liz is with us for a long time...but even if/when...You can never leave us!!

[poppycat86]

Thank You all for responding, neither me nor my mum were there when it happened. Mum had only left him after visiting him about 2 hours earlier when care home staff called. They said he was sat eating dinner, he became unresponsive, his eyes rolled, body stiff for minutes ( they didn't give amount of minutes) then he slowly came round and then vomited. Afraid sometimes staff can be a little vague, though they do a good job of caring. Unfortunately he was discharged by his neurologist because journey to the nearest PSP specialist at Salford Royal was just too much for him and my mum, shame coz she was wonderful. As I am sure many of you experience GP doesn't know much about the condition. In fact only people who go through this with their loved one ever TRULY understand this hateful disease.

[Kevin_1 in reply to poppycat86]

Wishing you all the best.

Damned miserable illness - The diagnosis hangs around the necks of all involved like an Albatross - not just the one diagnosed.

Warmly

Kevin

[Spiralsparkle]

My Mum has CBd and has developed Epilepsy since last year. It seems members on here are experiencing seizures also.

Mum also vomits after a seizure and also vomits at other times when body temperature shoots up suddenly. Another weird symptom of this damn disease.

The home need to record what happens and duration if occurs again, if happens more than once then medication will be needed.