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pete
30th November 2012, 16:58
Thought I need to ask the experts, so. What type of profile bed is best for MND and how much would a decent one cost, what mattress is better Foam or Normal I have s pent hours looking and still none the wiser ,so your advice would be great thank you

Pete

Robert
30th November 2012, 17:21
Hallo Pete,see your OT they're supplied by NHS on hire,mine's a profile bed and has 5 functions,up n down etc. I have the air mattress a bit like a park bench until you get used to it.It moves very slightly every now n again to aleviate bed sores.

Gordon has just left he sends his regards.

Best Wishes Bob

john
30th November 2012, 17:37
http://www.youtube.com/watch?v=aVbLNPwi_r0

roy
30th November 2012, 17:44
Hi Pete.
I spent 8 days testing an NHS bed. Found it really good,raise it up making it easier to get out of bed, multipostions to prop yourself up during the day for reading watching the Tv. The mattresses they use a plastic coated (useful if you need a blanket bath) make you stick and sweat so you would need a different type.The model I was testing also had a button I could press any time and came supplied complete with pretty nurses.

Hope you find the model that suits giving you the utmost comfort and joy.

Roy.

Irene
30th November 2012, 17:45
I would see your OT before spending money on one .We bought one in the summer cos us 874 and its not at all suitable for Johns needs now so it was a waste of our savings really x

Terry
30th November 2012, 17:48
Hi Pete;
Robert is right, go to your O T and maybe the district nurse. I have a memory form mattress, but they make it hard to move around and my hips do get sore after 2 hours. I think that Robert’s mattress is the best if you can’t move and roll. What make is your mattress Robert? If you can, get one like Roy's with a button for a pritty nurse.
Silent Night, Holy Night, Love Terry

michelle
30th November 2012, 18:09
Hi Pete

Like Bob, mums was arranged by her OT. It came with the sort of mattress that Roy had, though the call button and pretty nurse weren't supplied. Eventually the district nurse arranged for an air mattress, which she didn't like much, like Bob says it was quite hard but she got used to it.

We did look at buying our own when mum was diagnosed and came across this little beauty, unfortunately I am not independently wealthy or a lottery winner but we can dream.

http://m.youtube.com/watch?feature=related&v=XWPdpCK3pEE

Just thought I'd share with the other poor folk out there, if I ever do win the lottery drop us a line and ill buy you one.

Best wishes

Michelle

mellonius
30th November 2012, 18:43
Had mine 2 weeks supplied by NHS via OT. OK but very difficult after 40 years in a double bed - so narrow, but otherwise no complaints..Using silk filled duvet warm but light for turning. Had wendylett. sheets but abandoned for the moment - too slippery. M

pete
30th November 2012, 19:36
Hi Big Bob,

Thank you for posting, I did speak to my MND nurse ,via the email as you will have guessed ?, asking her a few things and i did mention the bed , but was told that unless i was more or less confined to bed i wouldn't qualify for one ,That surprised me a bit , but i guess it could be down to area's again and money ?, anyway i will see the OT next month so I will try here see what response she gives. Not holding out for much better from her to be honest. And if you see Gordon again will you give him my best and wish him and his good lady a Great Christmas hope is still OK, he seemed to be the fittest of us three !!, when we last met, anyway keep smiling mate and love to the Lady Pat.

All the best
pete

Rachelg
30th November 2012, 19:40
Pete

have a look at this link - it will show you the help I received whilst talking to others with MND. We eventually got Mark a Huntleigh Bed with a Nimbus Professional air mattress. "Like sleeping on a cloud" is what he told me.

http://www.magimedia.co.uk/buildforum/viewtopic.php?t=4855&highlight=beds

pete
30th November 2012, 20:02
Hi John

Just wondering how you knew that was a very old favourite of mine ??

pete

pete
30th November 2012, 20:13
Hi Pete;
Robert is right, go to your O T and maybe the district nurse. I have a memory form mattress, but they make it hard to move around and my hips do get sore after 2 hours. I think that Robert’s mattress is the best if you can’t move and roll. What make is your mattress Robert? If you can, get one like Roy's with a button for a pritty nurse.
Silent Night, Holy Night, Love Terry

Thanks Terry
I have seen that in a post before ,about the foam ones ,just what you don't need any more problems trying to move to get comfortable.

pete

pete
30th November 2012, 20:16
Hi Pete

Like Bob, mums was arranged by her OT. It came with the sort of mattress that Roy had, though the call button and pretty nurse weren't supplied. Eventually the district nurse arranged for an air mattress, which she didn't like much, like Bob says it was quite hard but she got used to it.

We did look at buying our own when mum was diagnosed and came across this little beauty, unfortunately I am not independently wealthy or a lottery winner but we can dream.

http://m.youtube.com/watch?feature=related&v=XWPdpCK3pEE

Just thought I'd share with the other poor folk out there, if I ever do win the lottery drop us a line and ill buy you one.

Best wishes

Michelle

Hi Michelle,

Going to do my best to hold you to that promise ??. Mind you the one on youtube , is very nice

pete
30th November 2012, 20:22
Had mine 2 weeks supplied by NHS via OT. OK but very difficult after 40 years in a double bed - so narrow, but otherwise no complaints..Using silk filled duvet warm but light for turning. Had wendylett. sheets but abandoned for the moment - too slippery. M

Hi Mel

Yes that's my problem after such a long time in a double ,to be confined into a single , but on the plus side at least the wife's going to get a good nights sleep without me coughing all night long. Fingers crossed the OT makes me an offer of one .

regards
pete

pete
30th November 2012, 20:42
Pete

have a look at this link - it will show you the help I received whilst talking to others with MND. We eventually got Mark a Huntleigh Bed with a Nimbus Professional air mattress. "Like sleeping on a cloud" is what he told me.

http://www.magimedia.co.uk/buildforum/viewtopic.php?t=4855&highlight=beds

Hi Rachel,
thanks for that it has helped , i appreciate you taking the time to post , and hope things are getting easier for you .

Best wishes
pete

Joybells
30th November 2012, 21:33
I have a 'Solite' bed supplied through my O.T. I'm only 5ft and this lowers enough for me to sit comfortabley on the side to access my turner.
It's got a horrible plastic covered mattress but my district nurse topped it with an inflatable mattress. I also got 'Sidhill Bed Levers each side that help me turn. It has 5 positions and I sleep at least 4 nights a week without waking - the first time in a year.

Joybells

john
30th November 2012, 22:34
Hi Peter,
I didn't , thought that was what Bob was referring to when he mentioned Gordon(Peter & Gordon).
I thought a lot on here would be to young to know what he meant but obviously there really is a Gordon so I maybe should remove my post.

John




Hi John

Just wondering how you knew that was a very old favourite of mine ??

pete

pete
30th November 2012, 22:49
Hi Peter,
I didn't , thought that was what Bob was referring to when he mentioned Gordon(Peter & Gordon).
I thought a lot on here would be to young to know what he meant but obviously there really is a Gordon so I maybe should remove my post.

John

Hi John,

No please leave it as it is ,I didn't make the connection but just amazed me how you knew that song was well let's say had some great memories for me ,so as odd as it seems you did me a favour ,just spent ages downloading more from that era, when bands actually played instruments and had talent, unlike most of the fabricated junk now.

Cheers
Pete

Chrissy
1st December 2012, 08:06
Hi Pete

Must be the area, my Bob has been offered a bed although he is up all day at the moment, think it's a hospital bed they are offering though and he doesn't think he will get on with it because he sleeps on his side.
Going to look at all the links suggested here though because when I say "he sleeps" it isn't more than 2 hours at a time before his hip pains him.

Chrissy

Chrissy
1st December 2012, 08:17
Hi Peter,
I didn't , thought that was what Bob was referring to when he mentioned Gordon(Peter & Gordon).
I thought a lot on here would be to young to know what he meant but obviously there really is a Gordon so I maybe should remove my post.

John

Hi John

Thank you, just watched Peter and Gordon (because I'm nosey and wanted to see what the link was) thoroughly enjoyed that, love that song,

Chrissy

john
1st December 2012, 09:48
Your welcome Chrissy. It is up there for the wrong reason but what the heck.

john

pete
1st December 2012, 10:38
hi Chrissy,

Yep seems your right, but have to keep smiling , know how the hubby feels give him my best wishes.

Regards
Pete

pete
1st December 2012, 10:42
Hi Joybells

that's another one on the list, thanks for that, and oh man still love that cat piccy ?

Robert
1st December 2012, 13:25
Hi Pete,I got mine when I could no longer sit up and get up. I achieved the sitting position from lying by lifting my legs up towards the ceiling then pushing knees with hands this seesawed me to sitting position,then swung legs around to drop them on floor,then would bounce to get the momentum to stand where Pat stepped forward with my crutches.Our OT witnessed this and a profile bed came immediatly.I rang her the next day and told her it had a fault "Oh what's wrong " I said" The tele don't rise up out of the foot board"Anyway Pete they cannot imagine what we are going through, I reckon I have been a good learning curve for them over the past 18 months or so.

Regs Bob

mellonius
1st December 2012, 13:57
Yes Joybells - I must have same bed and bed lever [on one side]. Have to struggle in and out in night - [can't use the urine bottl!] and have rail on other side to reduce risk of falling out when ! [try] to turn thinking ! am still in a double Mel

Joybells
2nd December 2012, 10:42
Hi Chrissy,
I've had trouble sleeping for more than a few hours and had to call my hubby to turn me as the pain in my legs was like toothache. I still have some strength in my arms and had the idea of rolling my pyjamas legs to knee level, when I want to move my legs to a new position I use my pyjamas rolled up as levers and pick my leg up to move to a more comfortable position, I usually go back to sleep without disturbing my hubby - 4 nights in a row now.

Joybells

roy
2nd December 2012, 12:34
Hi Bob,
thanks for tip about swinging legs up and doing a seasaw motion in bed, never gave that one thought and will give that a try in the morning.

Roy.

Robert
2nd December 2012, 13:20
Sorry, the name on the air mattress is a "galaxy 2000"
Regs Bob

pete
13th December 2012, 16:36
Hi Roberto,

Well having taken the advice from the folks i trust on this forum ,and contacted the OT lady, its been a while but she got back to me and said she wants to visit and discuss making changes to my sleeping arrangements ?, just wondering what changes she is going to suggest as a hospital bed was pretty much ruled out by sharp intake of breath and over the phone evaluation of me by the wife , that pretty much ruled out one of those ,seems i am too fit ??,so awaiting the visit , I cannot see what alternative there can be unless its a hammock ,camping bed ,or a blow up job, Seems the area thing is again an issue , What i do know for sure is if she don't come up with a sensible idea , am off to the bed shop Tuesday morning . Had to cancel the 3 monthly pilgrimage to the prof ,due to unforeseen tummy bug , not nice , seems that the good news is i am expected to be around in another four months ,that's when the next appt is booked for , so it seems you can miss these out as nothing happens when you go,, other than a question session and to see if your still on the books.

roy
13th December 2012, 18:04
Hi Pete,

why on earth cant they issue you with a loan hostpital bed.All the stuff I have been given (with Thanks) is on a loan basis.Just wodered from MNDA is this type of vital equipment means tested.I really do not understand this please MNDA explain.


really appreciate a reply.

Roy.

pete
13th December 2012, 20:09
Hi ya Roy,

Thanks for posting back,I am at a loss to understand it , but as I am far luckier than others ,have no problem with the response, it's the lack of advice as to what to do to get a nights rest ,
I would rather see a more deserving case get the loan beds to be honest ,and there are so many having to deal with more urgent needs ,it's just for them who are supposed to know the answers to the problems that arise as the disease progresses, if you can't get an answer to sleeping problems, it don't bode well when it gets more serious ,and don't want it on the wife's head to have to argue my case ,rather do that now while I still can via the magic box of course, will see Monday what the advice is then ,expect a MEGA rant on the night ?

Regards
Pete

Terry
13th December 2012, 20:59
Hi Pete;
I got the bed so that my carer (wife) did not damage her back. If your carer's back is hurting and can be a problem then put that case. They are good because they tilt and the head rises, this itself might allow you to get out of bed yourself if you can get some Elland high grab rails. It does take the strain out of her back. We and they must look after the carers. Don't push for a posh mattress now. Try to get the bed with a average memory foam one. You can fight for a mattress like Robert's later. Remember, it will give you independence and save your wife's back.
Put your case politely, ask for her advice first and try to steer her.
Good luck, Tell

pete
13th December 2012, 21:10
Hi Tell,
Will do as you say mate , much appreciated , off to have a few winks in the chair.

Cheers
Pete

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