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Dilly
4th December 2018, 15:15
Hello everyone,

I recently bought an adjustable bed with an alternating air mattress. I'm finding it very uncomfortable when it's switched on as it digs into my back when it moves. It really is quite painful across my back. Any ideas or suggestions that might help?
Thanks xx

Ellie
4th December 2018, 15:41
Hi Dilly,

Firstly, I am sorry you had to buy both a bed and a mattress - you shouldn't have to...

Is the mattress weight adjustable? Pressure adjustable? Overlay or full system?

If you don't know, perhaps tell us what mattress it is and we can look it up and see what it's meant to do.

Did your Nurse or OT have any input into choosing a particular mattress, as there are different types for differing pressure relief needs.

Love Ellie.

Terry
4th December 2018, 17:07
Hi Dilly,

I have zero experience with air pressure mattresses but they should have been provided for you free if needed.

I know some have a on function that keeps it inflated and I wonder if you got on it in that mode first and then choose a different setting.

Do you need a alternating air mattress, if not a normal one or a memory foam one might be better. Again, you can get a memory foam one free.

Love Terry

Kayleigh
4th December 2018, 18:43
Hello Terry,
It is interesting that the mattress should be provided for free. How would I go about getting one if I need it in future?
Kayleigh x

Terry
4th December 2018, 19:23
Hi Kayleigh;

I think that your district nurse arranges for hospital type beds and suitable mattresses. I would ask your OT or any professional that deals with you if that's right and to get a connection.

Most things can be provided free. Your wheelchair should have been, you needed one because I think that you bought one.

Love Terry

Kayleigh
4th December 2018, 19:47
Hi Santa,

Thanks for the very helpful advice.

In future I am going to check with my OT if I can get any equipment such as the bed/mattress for free before going ahead and buying it.
I was provided with a manual wheelchair and I was told that I could only get an electric one if I couldn't walk with a rollator (which I can, but I bought the electric wheelchair because it is less tiring and gives me more independence). We do not seem to get a list of equipment that will be provided free for us, if needed in future. This makes it difficult to know what I can ask for. I also don't like asking for things in case I am told 'no' because I would find that embarrassing. That is why it is so helpful of you and others on this forum when you let us know about what should be provided, if we ask - thank you!

Kayleigh x

JAY TEE
4th December 2018, 20:00
Dilly, you find the classic Hospital bed very comfortable. I was given one over two years ago by my local council. They also put in ceiling hoist but luckily still able use sit to stand hoist. The also provided very good J2 wheelchair which I sit in all day. Best wishes John

Terry
4th December 2018, 21:17
Hi Kayleigh;

Everyone has different needs and different time lines. We also have different specialists and different local authorities with different priorities.

This means that not everyone gets the same but the Mnda are trying to level things out and there should be able to get many things. Some areas things can take to get, even getting to see the right person to order what you need can take months in some cases. If then they haven't got the budget, then even more time is wasted.

I found the hospice very handy for help and being pointed in the right direction. They also have there own specialists, so they can order stuff, short cutting the system.

Love Terry

Kayleigh
4th December 2018, 21:45
Hi Terry,

Many thanks for that helpful information. I will keep that in mind about the local Hospice being able to advise about equipment as well.

I hope you are having an enjoyable evening.

Love Kayleigh x

davidr
5th December 2018, 13:02
Hi Terry, we have a profile bed given us, the nhs supplied us with a memory mattress, I don't think its suitable for severe cases of mnd, my wife wakes up in pain, I then have to get up and move her about, we do have a bed in the front room supplied by the nhs, its to awkward to get up stairs with it as the stair lift is in the way, hoping downstairs wetroom and bedroom will get started soon and will use it in there.

davidr
5th December 2018, 13:14
Hi terry, we were supplied with a riser recliner from the mnda, not a new one but ok, we had a letter of the mnda saying they are giving the chair to us, Meaning we have to maintain it now, i think to reduce costs, it was delivered, after they left we found a foot missing, i rang them up and said i could put one on if they sent one in the post, they said no and will send someone with one, travel from the midlands to colwyn bay with a foot that i could have fitted, how much did that cost? no wonder the mnda are giving the chairs away, why could they not use local people?

Terry
5th December 2018, 13:21
Hi David;

Some profile beds come apart into small pieces, they are even made in two halves length ways. If you have one of those and want it upstairs then speak to her OT or specialist team.

I don't like memory foam mattresses because you sink down in them and that hollow makes it harder to move and remains a hollow for five or so minutes. Having said that, I have been sleeping on one for many years. I am able to move myself


have to go

Ellie
5th December 2018, 13:28
If a person has very limited or no movement in bed, a memory foam mattress should be avoided, as it increases the risk of pressure sores :(

Ellie
5th December 2018, 13:54
Hi David,

Sorry to hear your wife wakes due to pain. Please tell her community nurse that her mattress is causing her pain - there are alternatives...

I've slept on a good alternating air mattress for several years and it is very comfortable.

I cannot move at all, sleep in one position so am at risk of developing aches, pains and pressure sores but fortunately I have none of these problems because of my air mattress.

My hospital/profile bed came in several parts, which took the 2 delivery men just minutes to assemble. (I also have a stair lift taking up part of the stair width)

Love Ellie.

Dilly
5th December 2018, 16:41
I was offered a free hospital bed, but we decided to buy a double so we wouldn’t be sleeping apart. Maybe I should have done more research as I didn’t realise there are different types of air mattress. Oh well, I’ve made my bed etc.........

Ellie
5th December 2018, 21:04
Dilly, I understand why you bought the bed but you can still ask your nurse for a suitable alternating air mattress - one that's weight adjustable is best as you can set the firmness that best suits you.

You may be able to sell your own mattress if you get a better one provided.

Love Ellie.

MNDConnect
6th December 2018, 12:28
Hi everyone

Sorry for intruding on a non MND Connect thread but I thought it might be worth explaining a bit more about the riser-recliner armchair situation as mentioned by Davidr.

I've had a word with our Support Services Team who would have been the ones who dealt with the missing part on the riser-recliner amrchair. They've explained that it is likely that we would ask the company who supplied the chair on our behalf to replace the missing piece rather than just post out the piece as we would expect the chair to arrive with all pieces attached and would expect the company to rectify this if there is a problem. I've also been assured that the cost of sending someone from Colwyn Bay is actually the same as using someone locally as we pay for the service rather than how far they have to travel.

Regarding our riser-recliner armchair loan service the decision to make these changes was not made lightly and was to some extent due to the termination of our service contract by the current provider as they were no longer able to offer the Association acceptable terms. We carried out an extensive tender service to source an alternative provider, however this was unsuccessful. We therefore had to look at the options available to us, which were to stop the service altogether or to look to alternative ways in which we could offer support.

As an example of costs, our current provider has agreed to deliver two chairs for us that were pre-agreed at a cost of circa 700 (560.84 plus vat). The chairs had already been collected from their previous sites and had been decontaminated, so this cost is purely for delivery.

As a charity I am sure you will appreciate we cannot sustain this level of spend and you will be aware this service is not the only service that we are pleased to offer to people with MND.

Sorry for the long post but I hope that this helps to explain a bit more. If anyone has any questions then please do send us a direct message on here, email us at mndconnect@mndassociation.org or give us a call on 0808 802 6262.

Best Wishes
Rachel
MND Connect Adviser

Dilly
6th December 2018, 13:30
That's a really good idea Ellie, thank you xx

davidr
6th December 2018, 21:22
Thanks for the warning ellie, as soon as the extension is done the nhs bed will be in use, the profile bed we are using at the moment is all one bed and very akward and heavy to lift.

davidr
6th December 2018, 21:34
Thanks for your answer, i can understand why mnda have made the decision, it does seem a lot for just delivery.
david.

Terry
6th December 2018, 22:13
Hi David;

I don't like memory foam mattresses because you sink down in them and that hollow makes it harder to move and remains a hollow for five or so minutes. Having said that, I have been sleeping on one for many years. I am able to move myself around with the aid of good slippery silk sheet and a pair of high good grab rails.

I still have some strength in my hands and arms.

Love Terry

Sueb
6th December 2018, 22:32
Steve has had two different air mattresses neither of which were comfortable. They were set for his weight but he was in pain and kept us both up several times a night. He then had a vicair mattress that had air filled bags inside, a bit like pg tea bags. This was ok for about a week then he was in pain again. The tissue nurse came out and a had look and she recommended a new mattress from invacare which is a soft form premier active 2. It has a low level very quite pump that comes on and off and gently massages the body. It was a new system that came from the invarcare rep then purchased by the Red Cross. It has been very good. He gets neck pain because of a fussed neck which has been made worse with the loss of muscle due to MND. This causes his head to go to the left and by morning his head sometimes needs manipulating so it’s doesn’t hurt. He is being provided with a bed system called Symmetrisleep, that will keep his shoulders from dropping and a pillow that will fit around his head to keep it still. It is coming on Monday so will see if it works.

His hospital bed was provided through our community team as the social worker OT wasn’t able to order this. It seems to be different area to area.

Sue

Ellie
7th December 2018, 14:40
Hi Sue,

I tried that exact same Invacare mattress (brand new) but found when the pump came on on, it was really loud and it vibrated. We tried putting the pump on the floor, cushioning it with towels but it made no difference - is Steve's like this?

I have a good comfy Meditech mattress but recently got a profile bed and my Community Nurse suggested I try the Invacare one as it's "so quiet" - it's silent until the pump activates, then all hell breaks loose :confused:

Please let me know the name of the pillow when Steve gets it, it might suit me.

Love Ellie.

Sueb
7th December 2018, 18:08
Hi Ellie
The pump does make a noise but it is very quiet compared with the air mattress ones, it doesn’t wake you up. Maybe it isn’t working properly.
The system he has coming is from this company. http://www.symmetrisleep.co.uk/ It comes on Monday.

Sue

Ellie
8th December 2018, 15:46
Thnks for that info Sue.

I'm a very light sleeper so am glad my usual mattress is quiet. Equally glad that Steve also found a mattress he is happy with!

I currently use DIY head supports on my pillow to keep my head from lolling to one side - cold heat packs in big soft socks - but I'll look at those V-shaped head cushions.

Hope it works out for Steve.

Love Ellie.

Terry
8th December 2018, 18:16
Hi Ellie;

Don't know if you have the shop or have looked at their web site. They do have a range of neck support pillows and other ideas:-

https://www.dunelm.com/search/neck#facet?scroll=1019&pageSize=wide

Love Terry

Ellie
9th December 2018, 13:14
Thanks so much for taking the time to look at products Terry.

I've tried a few neck cushions - those which gave adequate lateral head support were too bulky under my neck and my head rolled over those which were comfy under my neck.

I just need to keep my head steady, the pillow supports my neck well, so I came up the beanbag solution. It works a treat except they sometimes are positioned incorrectly (by a tired man putting me to bed at midnight and doesn't do the Chuckle Bros "to you, to me" faffing about routine)

I was interested when I saw Sue's post so I'll find out how firm those cushions are.

Love Ellie.

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