Difficult to get out of bed


#1

Hi Everyone,

I’m new here and the title of my post is true every which way!!! I’ve been diagnosed for a few years but recently have really found it really really harrd to get in and out of bed because of the stiffness. It’s really hit and miss every day and I’m also getting much more tired and my mobility is starting to get on and off as well - don’t always feel that coordinated. My pace is slowing and Im’ often having to stop myself bumping into things and needing to stop and rest so much more. Do any of you think there’s a medication that can help with this or is my best bet exercise and physio? If that can make an improvement.

With the bed situation, I dread going to sleep and waking up now just because of how hard it gets swinging myself in and out. Are there any beds you recommend that work for you and has anyone had a hospital bed? Can you get these from the NHS from a therapist or medic or do you have to buy one or something similar?

So many questions but it would be great if i could get some advice as were all going through this so now how we all feel.

Thanks Monica Xx


#2

Hello Monica
You begin to wonder if there are many more things that this condition can throw at you, don’t you? If your post describes you then we are
alike Getting in and out of bed is a nightmare. Sometimes I simply stand at the side, trying to analyse how to get into bed. Then, joy of joys, when I do finally get in, I am so uncomfortable, I have to get out again.
The only solutions I have found are to wear silky nightie/pyjamas and use satin bedding, If everything is slinky, silky, you end up slipping out of bed.I have memorised all the movements i need to use to get into bed.
If anyone offers you a solution to your problems, please share, I would love to have a restful night’s sleep!
All the best
Lin
x


#3

Monica what has helped the stiffness some when I first get up, a dose of slow time release sinemet at bedtime. That way I have some dopamine floating around still in the morning. Also when I have to get out of bed during the night seems to help as well. Tom


#4

Hi @monicadavies,

It’s good to see that you’ve received some good advice from Lin. Satin bed sheets and pyjamas are one of our recommended ways to tackling problems getting out of bed along with a few other tips which you can find on our ‘Sleep’ section here - https://www.parkinsons.org.uk/information-and-support/sleep.

We also have PDF sleep guide with more information and support on sleep problems linked with Parkinson’s. You can download it here - https://www.parkinsons.org.uk/sites/default/files/2018-09/B070%20Sleep%20and%20night-time%20problems%20WEB.pdf

Lastly, if you’d like to speak to someone about this, please give our helpline a call on 0808 800 0303 or email us at [email protected].

Best wishes,
Reah


#5

Hello Monika

Is the biggest part of the problem being able to move, or stiffness or pain? I have had disc problems in the past (pre-PD) and recently have started to have pain when first standing up in the morning. I now do a few minutes back loosening exercises(interesting when I have woken because I need the loo!)


#6

Thanks all for the replies. It’s great that you can share experiences honestly on here with this horrible jigsaw puzzle we have, unlike having to deal with the trolling, nastiness and downright bullying you can find on some social media platforms.

Psychologically, I’m starting to dread the process now, of getting in and out of bed simply because I know how hard it’s going to be physically. The unease is affecting my sleep. And, oh what the hell, I haven’t yet stopped myself from going the toilet from the time it’s taken but there have been a couple of near misses and it’s only round the corner I feel.

I have a slow release sinemet at night which works as well as it can i suppose. But although all the elements are connected it’s the stiffness in my legs which is the real issue. They feel like concrete and I can’t move them, even my husband has a job. That’s why i need to look at some adjustable bed, just to get on the floor without all this struggle and pain.

XX


#7

Screenshot_20190210-150412|375x500 This may be a stupid question but do you sit up before trying to swing your legs off the bed or do you try to get your legs off first then bring yourself to sitting? If you do the latter try getting into a sitting position first - getting your torso over your knees is the hardest part of a transfer it may help. You could also try the cheap and cheerful leg lifter (aka dog lead). Unlikely to solve your problem but may make it a little less hassle. If you are going to look to get an adjustable bed, I am sure you know but in case I am assuming wrongly, there are beds that will bring you to a standing position. Not an easy problem to solve with apologies if you are aware/have tried both of these things already.


#8

I find it a nightmare getting in and out of bed I have tried every way possible but don’t have the strength to sit up and swing leaden legs out. I usually end up rolling in such a way that usually has me on my knees on the floor then lean on bed to get myself up.


#9

It just doesn’t get better and every day I just fear how much worse it’s going to be. I’m trying and experiencing everything, but it’s just not easy. And I’ve fallen a couple of times too now in a heap.

I’m just feeling, “Why me?” as we all do but sometimes all I can do is cry and the tears can’t always soothe my heart. Why can’t it just stop?

I really do need some kid of bed where you can cahnge the height to help get my feet on the floor. I think if you loan one you can only get a hospital bed that has to come from a district nurse or occupational therapist. That’s what I’m hearing. And you basically have to be bedridden to get one, i can walk even if unsteadily and slowly. I’m waiting and waiting for a referral but i fear it won’t work. And i have to buy my own but im not made of money and these things cost loads.

Am i right and does anyone have this problem with getting a bed? It would be so great to hear other stories in a similar boat, jsut to help a gal who needs a bit of tlc as much as the bed.