Has anyone with PSP experienced an abrupt ... - PSP Association

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Has anyone with PSP experienced an abrupt change in their sleeping position?

JudyJ profile image
10 Replies

I've consistently been a side-sleeper, fetal position, sometimes on my left, but usually on my right.

Over the past 6-8 weeks, I abruptly changed to sleeping on my back sometime during the night. Not every night, but the majority. The reason I know this is because it wakes me up, some nights a couple of times.

In addition, I find myself sleeping with my mouth open, usually havw very dried out tongue or conversly, have found myself drooling.

I can't say I feel like I'm choking, do admit to some snoring, but something's amiss. Sometimes I wake up make an unusual sound at the back of my throat; like I'm trying to get air, or reposition my tongue but can't.

I've never experienced anything like this, nor have I ever found sleeping on my back comfortable.

This started out-of-the-blue & plan to tell my Neuro next visit, but have any other PSP sufferers experienced this or do you think it may well be unrelated?

Curious as to your thoughts & look foward to your replies.

Judy J

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JudyJ profile image
JudyJ
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10 Replies
shasha profile image
shasha

hello jj - i have found myself with a dry mouth and tongue in the night but not because i am on my back which i cannot stand - i feel like i am drowning and not able to breath if i an ever on my back

JudyJ profile image
JudyJ in reply toshasha

For what it's worth, I understand what you're saying; have experienced a little of that too, but infrequently. If this is another PSP symptom, I hope it takes a long time before it becomes a 'thing' to deal with.

I think this happened to mum for a while as she did tell me that she had disovered why she was soaking wet in the mornings around her neck and that it was dribble. Fot this to happen she must have been turning onto her back and yet she too was a devoted side sleeper. I think some of it was because she couldn't turn herself over properly and had to make do with going from side to back only. As with a few other things mum said we merely thought it was a little strange but didn't realise it was down to the PSP as it hadn't yet been diagnosed then. The same applied to when she said she wanted to see a Dr because she said she couldn't cough. We thought it was an odd thing to say as she was fit and well and didn't have a cough as such but again with hindsight her chest muscles must have been becoming weaker. It never ceases to amaze me how many of these simple little changes are down to PSP.

Dianne x

JudyJ profile image
JudyJ in reply to

Thanks Dianne; it truly is odd and very new. I'll awake on my back with my entire mouth open & dry yet drooling a little from the corners of my mouth. As I said to Sasha, if this is another PSP symptom, it's starting slowly and can take it's time before it's one more 'thing' to have to deal with everyday.

jimandsharynp profile image
jimandsharynp

Turning over in bed can be an issue for PSP patients. I have some silky type nightgowns that I try to use on my wife because the sliperyness give her more abillity to move. Sometimes cotton on cotton or flannel on cotton can cause a challenge it turning in bed. It seems to work and she seems to move/turn easier. Must get a couple more of them as we only have two at the moment.

Jimbo

jimandsharynp profile image
jimandsharynp in reply tojimandsharynp

I should have added that knee length instead of full length also works better.

Jimbo

JudyJ profile image
JudyJ in reply tojimandsharynp

Yes...I have been able to sleep in long nightgowns for years and when much more stable; I'd just get my lower-self all tangled up in the xtra material:)

JudyJ profile image
JudyJ in reply tojimandsharynp

You made an excellent and common sense point and I thank you for that.

I have had much difficulty turning in bed. In fact, it's either in the middle of the night or when I 1st wake-up, I find myself on my back. And, that I can't do anything about it.

Finally figured out to reach above my head and use the slats on my headbord to help pull me up into a sitting position.

The suggestion of silk jams or nighties is a wonderful one; can already see the possibilities in allowing myself to position myself more comfortable during the night.

Thanks again, Jimbo.

Judy

jillannf6 profile image
jillannf6

HI JUDY

I TOO HAVE CHANGED MY SLEEPING POSITION FROM MY SIDE TO MY BACK ADN SNORE LIKE MAD (AND DRIVI MY PARTNER MAD WITH IT)

BUT I DO NTO KNOW WHY? I GUESS I TIS THE PSP.,..

LOL jiLL

:-)

JudyJ profile image
JudyJ in reply tojillannf6

I see my Neuro this Thurs & it's on my list of things to bring up, and only because it started so abruptly and leaves me feeling like I can't reposition my tongue, making odd sounds at the back of my throat, etc. Let you know what he has to say.

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