Night time


#1

Hi All.
I have had the usual disturbed night. I was wondering is it just me or do others go through this every night.
I awake and think to my self I need to get up.
I get myself around to sitting up after about 10 mins of trying.
I am sitting on the edge of the bed and I keep saying to myself 1 2 3. 123. 123.this has gone on for around another 10 mins and I’m still not up.
I now try 567. 567. 567. I’m still sitting there finally after another 10 mins I’m up. I stand there feeling like I’m frozen to the spot.So again the counting starts finally I’ve moved and in front of me are 6 stairs I get up these quite easily.i actually find that I am good on the stairs.( I usually say if life was full of stairs I would be okay it’s flat ground and walking I have a problem with.)
Finally I have been to the TO I LET and I am back sitting on the edge of the bed.I am now thinking how do I get back into bed.This goes on for about 10 mins and finally my brain works and I’m back into bed.
I can’t believe I’m actually telling everyone this me the oh so private person.
Even if 1 person says they do that too will make me feel better.
I have had a back operation but even before this I was just the same .
I have to get physio and to get an outpatient appt for eurology.as i have had CAUDA EQUINA SYNDROME.
As well as Parkinsons . Rheumatoid arthritis.


#2

I can’t believe that I am the only one this happens to.


#3

I do sympathise with your night time troubles. I wake at around 3 am, and while away the hours with my iPad, watching programs I have missed on tv. It means I am tired around midday, and need a nap, but at least I am not so gloomy as I used to be. I am beginning to think that Parkinson’s is all about managing, since there is no way a cure for the problems.


#4

I think I have opened up for.notjing just wish I could delete.


#5

Does absolutely no one with PD have this during the night.


#6

Hi, I do understand your issue I struggle to turn over during the night and take time to get up to goto the toilet, I have not found a solution yet although I have found that taking some of my medication later (late evening) it is still operative during some of the night time making movement slightly easier, I don’t know what medication you are on but their is some tablets for night time but you need to discuss with consultant or PD nurse, Hope this is of some help.


#7

Babswood
I do it! I do it exactly as you describe. I’ve stopped reading just to tell you! I’ll read the rest now.


#8

Do you tell yourself off for counting ;What are you counting for, you nutter?’ I say to myself! I shout at myself all the time!
Turning in bed - I have found a way but sitting up is very hard, I burst into tears because something compels me to prove that I can get up. I stand on the spot for ages - i get so cold . I consider strategies i could use to get going or try to invent more as I stand there.
I do all sorts of mad things!


#9

Hi Lin yes I do the same as you its terrible eh? You would think more people on here would be like that or is it just you and I who can count ha ha


#10

Hi babs i used to be like you not quite as bad but since i started cbd oil i now only wake once always between 4 to 4.30 but i do now manage another hour or so sleep it,s made
such a difference this early bird got fed up of worms
Pete


#11

Cheers Peter thanks for your reply.

Going to ask about the oil when I go to hospital on Tuesday.

Cheers


#12

Hi Babs.
I have some weird nighttime rituals
One of which involves eating a bar of chocolate every night.
Usually when I get up it takes time to get moving as I feel like I have done a marathon.
My muscles and joints ache like hell.
I shuffle to the loo and back.
I then have a go on my phone for an hour or two.
I don’t fret about sleep anymore.
Hope you’re in good spirits
H


#13

Hi Babswood

I don’t have the same problems as you but xometimes at night I do find it difficult to get to the toilet in time. I keep a portable female urinal by the bed for those occasions, and it is a life saver. Especially when I have taken a sleeping tablet and wake up srill half asleep…1

Best wishes

Knine
Audrey


#14

Hi Babs,
I just had to reply even though I am the carer, as I wanted to reassure you that my husband has exactly the same problems in the night as you do. He takes levodopa twice during the night just to improve his mobility when he does get up, which is quite often, but he can take ages and I lie awake worrying he might go to sleep on his feet in the toilet. He has fallen previously.
He also sometimes feels compelled to get up when he doesn’t need the toilet. He can just be restless.
I wish you all the best. Vanessa


#15

Thanks Vanessa for reading my post.

Hoping your husbands situation improved.

It is a nightmare. You always think it’s only you this happens to.


#16

I’m a carer for a friend and she does this almost EXACTLY, in fact several times a night.

Still not sure how to get around it but singing or counting numbers doesn’t really work. She just gets used to standing around and trying to move.

We are learning patience! It doesn’t cause her any pain, it’s just frustrating xx


#17

My husband struggles to get up from the sofa but still seems to get up from the bed ok. However, he used to go to bed by about 10pm and sleep right through until about 7am but now he is waking up and having to get up and watch tv for a while then have a cup of cocoa before he can go back to sleep and he is often awake by 5am.


#18

Hi Babswood,

I’ve just read your post. Yes I suffer from freezing to the spot too, not only at night but during the day. You should never apologise for opening up on the forum. We’re all Parkinson’s sufferers, some more than others and I really feel for you. I hate it when I freeze as I don’t feel in control of myself.
I’ll try and finish this tomorrow. I can hardly type.
Jackie


#19

Hi, have you tried using s bed bar, which can support your weight, as you lift yourself up from lying position?


#21

Hi my husband has been like this for about 6weeks needing to get up and get out of bed, I pull him out and he has to walk around the house and back into bed. About 20 mins later he needs to do all again. My doctor gave him some melatonin he now sleeps a lot better and only gets up about 3-4 times a night. Hope this helps