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
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
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
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].
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!)
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.
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.
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.
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.
high monicadavies before I was diagnosed with pd I found that I had forgotten how to turn over in bed, even now I end up sleeping on my back, as for getting out of bed it takes me a while first I push up on my elbows then try and get on my side must admit I have fallen out of bed a few times, but now I moved more into the middle of the bed, sometimes my husband will give me a hand up, this is just how I cope with the problem.
Now I do know that the shop the sells helpful aids also make a electronic bed which helps you to get up, (bit like a reclining chair) i’m sure if you look on PD web site there could be some more information on these beds.
After encountering difficulty manouvering in bed and getting in and out of bed I recently concluded that I needed a new bed. I decided to go for an electric adjustable bed and specified that the mattress must be firm and that the base of the bed should be lower to the ground. Since acquiring the bed I have found that whilst the electronic adjustments are fun to play with the main benefits to me have come from the firmer mattress and the lower base. The mattress gives me much more support when I wish to manouver and raise myself and the lower base makes it much easier to climb in and out of bed.
sorry that i have taken so long to get back to you. Yes maybe a good idea about eletric bed but we have just changed ours to lower base and a differant mattress and it is not helping i think you have just got to live with PD ,
thanks for reply Gerrard
Getting a bed isn’t easy unless you buy (can get ones where you can either put it down almost onto ground or put back up so far that you’re almost standing with sides etc on. Ask care people if you’re eligible for a hospital bed.
If you have someone with you, a strong black coffee 20 minutes before you try to get up will definitely help. Dad then has black coffee through the day with his meds etc to help mobility and speech (see coffee as an aid). Good luck (milky coffee isn’t as effective)
Maybe you also have some back issues too, you should ask your doctor about it too. Doing exercises is a good choice, here’s a good guide on Wikihow about it https://www.wikihow.com/Make-Yourself-Wake-Up.
Someone above suggested buying an adjustable bed, you should consider this option to. Years ago it was impossible to get one for home, such beds were available only for hospitals. Nowadays you can easily get or build one. But be aware that you’ll need different bedsheets, here’s an article about those.
Hi All- I have recently strained my lower back doing gardening. As a result I have some back pain particularly causing difficulty getting out of bed. This seems to be due to pain and twinges and sometimes lower back muscle spasm felt when manoeuvring myself to a sat-up then stood-up position, and also due to body stiffness on waking up. So it seems I am dealing with Parkinson’s type symptoms made worse by the added effects of the back strain. I am PD diagnosed 5 years, taking sinemet, ropinirole and rasagiline for the Parkinson’s and prescribed Naproxen, an anti - inflammatory by my GP, for the back pain. Has anyone got prior experience of this? If so, how did you manage to rehabilitate your back? Solutions or comments welcome!
I have a double problem, but it’s similar to yours. My brother is big, so I had to use 2 mattresses to make him feel comfortable, but it turned out that he’s in pain just like you are on them. He’s not complaining, but I can see that he’s not feeling well. Should we try mattresses for big people? Will ordinary mattresses like these fit, or do you need extra functions in them?
I may be too late but I have an Hydrollic Pillow lift from my local council, thanet, as well as a bath lift. Malcolm
I have been using king-size bed and mattress for a long time in the start it was a great experience to sleep on that bed but after 1 year I feel pain in my back due to stiffness. So one day I searcher over the internet that which bed would be best for me then I saw some reviews when I read that reviews there were amazing and helped me a lot to decide for which bed and mattress I go for. i should also recommend you to have a look at these reviews.
Hello Monica Davies, A Recliner bed could be the answer,I do not know anything about them but someone on the forum will,If you look on Ebay [it is an auction site] right now there are 8 for offer with the start price of under £125,I suspect the most expensive part with a modicom of luck, that would fail would be a transformer box under £20 inc delivery and probably plug in 10 min. Well that whats a recliner chair box cost me about 2 years ago and they are very similar Wish you well. fat finger pete
Hi I’ve changed my mattress twice in the hope that would help. It hasn’t!
I wake every morning with totally excruciating lower back pain to the point where I can barely swing my legs round and stand up… I’ve put it down to lying in one position all night as turning over such a carry on !