Sleepless Night and Day, the Plight of Progressive Supranuclear Palsy

[Etoile]

I came across this article/abstract. It helped me understand my brother a little more.

I hope it will do the same for you and your loved-one.

Peace and Merry Christmass to all.

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Sleepless Night and Day, the Plight of Progressive Supranuclear Palsy.

Walsh CM, Ruoff L, Walker K, Emery A, Varbel J, Karageorgiou E, Luong PN, Mance I, Heuer HW, Boxer AL, Grinberg LT, Kramer JH, Miller BL, Neylan TC

Author information: ncbi.nlm.nih.gov/pubmed/290...

Abstract

OBJECTIVES:

To elucidate the unique sleep and waking characteristics in progressive supranuclear palsy (PSP), a neurodegenerative disease associated with motor deficits and dementia that largely affects the brainstem and thalamic regions.

METHODS:

(....)

RESULTS:

PSP took significantly longer time to fall asleep (p < .001), slept less during the night (p ≤ .001), and had more wake after sleep onset than controls (p ≤ .001). PSP had less N2 sleep (p < .05) and N3 sleep (p < .05), and REM sleep (p < .001) than controls. During the MSLT, PSP took significantly longer to fall asleep (p < .001), did not have microsleeps when they remained awake throughout the assessment periods, but were subjectively sleepier than controls (p < .05). Gamma power was increased during wake EEG in PSP (p < .01).

CONCLUSIONS:

Sleep/waking regulation and REM sleep regulation are disrupted in PSP, leading to profound sleep deprivation without recuperation. Our findings suggest a diminished homeostatic sleep drive in PSP. This hyperaroused state is unique and is a severely disabling feature of PSP.

PMID: 29029214 DOI: 10.1093/sleep/zsx154

[easterncedar]

Yes. Thanks for postting this. It's very interesting. From what I understand of this abstract, I'd say this was exactly what I saw with my sweetheart. It became obvious at the end that psp was interfering with his sleep cycles. Trying to help him get decent sleep was something his medical team and I struggled with, very unsuccessfully, the last 3 months of his life.

People talk a lot here about how patients are constantly getting up in the night, and often put it down to incontinence issues. I wonder if more attention to the ability to sleep might help. We never found the right medication, and maybe there isn't one, but making the medical team aware of the unique effects of psp early on is definitely something to do!

I would be interested to know what remedies people might try for the sleeplessness. Too late for us, but I am still curious. And you, Etoile? What do you see with your brother?

Thanks again. Merry Christmas to you and yours. Ec

[abilitydesigns in reply to easterncedar]

i play sleep music on youtube for my mom who has PSP. She also has the issue with getting a sound sleep at night.

[Ratcliffe]

I never put the lack of sleep or bad quality sleep down to PSP. David was always a poor sleeper, and for as long as I had known him he got up several times in the night. However, thinking back, this amount of times per night did got up as he developed PSP, so this supports the idea.

As PSP developed, he did sleep less hours per night.

[Tippyleaf]

Interesting thank you for posting - my husband with PSP struggles with sleep night tine CPAP machine helps but the difficulty settling continual waking etc a huge challenge.

Happy Christmas hope as good as it can be for all

Love Tippy

[Hidden]

Larry was always a night person. He would stay up until 2 most nights. Last night he said he didn’t sleep at all. What happens is he gets up early when I get up between 4 and 5. Has breakfast then has no problem going back to sleep. Same for after lunch and dinner. He seems to be doing his sleeping in the day time.

[LuisRodicioRodicio]

My wife also has difficulty sleeping and is very light sleeper but still sleeps approximately 5 to 6 hours.

We give her Lorazepan 1 mg two hours before going to bed.

I think that the intensive gymnastics program helps to have an acceptable sleep given his illness.

Luis