My mother in-law has PSP, and its already in a worst stage, she can't sleep and always murmuring, anybody here has the same experience?

[ErzaTitania]

My mother in-law has PSP, and its already in a worst stage, she can't sleep and always murmuring, anybody here has the same experience?

[Kevin_1]

Hi ErzaTitania

I'm sorry to hear you are caring for someone with PSP. I'ts a miserable illness and it affects all of those involved.

Welcome to the site. It's a good supportive place with plenty of information.

Sleep does tend to fall apart with PSP. Our nurologist prescribed Clonazipam and it helps enormously. It has a long half life so, unlike some other benzodiazepines, it works throughout the night.

I have not come across murmuring with PSP, but everyone is a little different depending on which parts of the brain are being affected. A small dose of Citalopram can help with agitation.

Welcome to the site. It is a friendly, supportive place with plenty of experience and information being shared.

Warmly

Kevin

[ErzaTitania in reply to Kevin_1]

thank you for the information Kevin_1, she does murmur, but her words are not clear anymore and she is always stuck with some lines, like she will just say it over and over again.. yes its true, this illness is a miserable one.. sometimes she seems scared of something and she screams

[Kevin_1 in reply to ErzaTitania]

Yes, repetitive behaviours are fairly common. It's horrid to watch, but as you no doubt are aware, the presentation changes over time.

Wishing you both the best with this illness!

[Hidden]

Welcome.

Larry’s sleep is very irregular. When he is asleep he will verbalize a lot of the time. Verbalizing with a neurological disease isn’t unusual.

[ErzaTitania in reply to Hidden]

Thank you, i joined here to gather some insights and information because here in our country only few are diagnose with PSP.

She eats too little and she is getting skinny already and always choking, wether its food or water or milk. She can't stand or walk anymore.

[Dadshelper]

Welcome to the site! Dad never went through a sleepless period but he napped a lot and then was awake in the middle of the night. I don't ever remember him murmuring in his sleep but his speech became very soft and hard to understand.

Ron

[ErzaTitania in reply to Dadshelper]

Thank you😊

[Tippyleaf]

Dear Erza Titania

My husband with PSP has struggled with sleep since just before diagnosis. I was told it is unusual in PSP. He has sleep apnea too and uses night time CPAP so sedation is always difficult. He has taken Clonazepam for years with minimal effect. Started AntiPsychotic meds’ in December which have helped a little and he now on occasions sleeps for 2 hours at a time. He often ‘ moans’ for hours in addition to shouting in his sleep most nights.

We use night time meditation and aromatherapy oils, no caffeine, no fluids after 6pm . I hope you find something which works for you both - it seems so hit and miss!!

Take care

Love and hugs Tippy xxxx

[ErzaTitania in reply to Tippyleaf]

Thank you TippyLeaf

[rriddle]

Does she also kick and thrash in her sleep?

[ErzaTitania in reply to rriddle]

Yes she does.. it seems like she can't settle herself, or might be that she is not comfortable, she is also keeps trying to reach something even of there is nothing there

[rriddle in reply to ErzaTitania]

I'm wondering if your MIL has Parkinson's, multiple system atrophy, or Lewy body dementia as it sounds like she could have RBD (REM sleep behavior disorder)? Do you have a sleep specialist or neurologist you could speak with about this?

[Dickwin]

Erza, my wife hums to herself quite a bit while awake, and while sleeping, she murmurs quite a bit. She seems unaware of her humming, but when she is doing it, she seems quite happy, so It's rather endearing to me. I will take all the happy moments I can get with her. Welcome to the site. It is a Godsend. The people here are truly awe inspiring, and they have helped me more than they know.

[ErzaTitania in reply to Dickwin]

Yes this site is much of a help, it makes you feel, you are not alone..

Thank you

[LuisRodicioRodicio]

Hi Erza Titania!

I'm sorry PSP has entered your family.

I am not a phisicyan. My studies have a relationship with Physics, Chemistry and the Environment.

By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.

The information I send you by private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have exception made of PSP associations chats, to face this unknown disease.

Hug and luck.

Luis

[ErzaTitania in reply to LuisRodicioRodicio]

Thank you so much, im going read your mail

[demlac]

Hi Ezra, my hubby groans a lot especially at night sometimes goes on for hours , sounds like he is in pain but when I ask him he gives me the No signal.. He loves music so he listens to that through ear phones when he’s in bed seems to calm him a bit... The noises can drive you nuts sometimes!!! All the best x

[ErzaTitania in reply to demlac]

Yes that's true, we sometimes can't sleep because of that