Getting off the loo

Hi KC . I have a sheepskin to rest my feet on coz i was getting pressure sore , maybe try one under your hips. Real on not faux. As Ellie says oximeter on finger records Co2. Be aware of headaches in the morning, sign of high Co2. May need niv. Dude x

[Ellie]

Great news on the carers Elaine - that'll be a relief !

I have used the leccy blanket with my air mattress for years without a problem. It's under the cover but heat gets through. You could try a mattress to see if it hinders your movement, setting it at a higher weight makes it firmer.

Re breathing: pulmonary tests such as spirometry, should ideally be done laying down for ALS people, as this gives a truer result. SATS too vary between sitting & supine position. There's a simple overnight pulse oximetry test which you should do to see what your overnight O2 levels are - really, if you're having breathing issues, a BiPAP will make it more comfortable. Ask your MND Nurse about the SpO2 test.

Sorry to bombard you w/ all this!

Hope you sleep tonight,
Love Ellie.

Well done KC, good progress. The carers will be a great help for you and your family. Dude x

Thank you all for your kind reply. The doctor visited me today and has arranged for me to have a night carer on Friday Saturday and Sunday night this week . She is also looking into a suprapubic catheter and an anti- depressant. I have requested a teatime call from the carers to stand me up so I can go to the loo. The district nurses also called but could not offer me anything to help with the bed situation but my OT is visiting on Monday. I have been looking at those silky sheets and maybe I will try them. I was wary about going down the airflow mattress route as I know many of my patients in hospital find it difficult to move on them as they're squidgy. I have a standard Soft Foam mattress on at the moment but it is so hard. I have put a mattress topper on top to try and soften it and also so I can use my electric blanket as I get very cold. I would not
be able to use an electric blanket with an airflow mattress, how do you keep warm?

I have had a recent respiratory assessment which was fine but I do struggle when I'm lying flat or I get in a stew. Ellie I want a bladder like yours, I'm trying to train mine, but it does it's own thing.

XX

Hi Kc . Cheer up. You need an air mattress that adjusts to your weight, sounds like Terry & Ellie have the RR version. Maybe clip duvet onto actual bedframe angle iron if is like that. Sleepover carer is there for every single thing, toilet, brew, NIV, ironing etc. 2 Carers take me to my room at 7.30pm toilet, wash hands face, teeth, meds and tea. 1 carer goes home. I sit on edge of bed with 6 pillows lined up watching SKY or Corry. 10pm carer puts me to bed. You need an overnight carer. Dude x

[MNDConnect]

Bit fed up today. Tried the hospital bed for the first time last night and I couldn't sleep at all. I was so hoping that it was going to be the answer but it was so uncomfortable. I put a mattress topper on top of the hospital mattress to make it a bit softer but it was so hard I could feel every bone on the mattress. The bed doesn't have a frame that you could clip the duvet to but I had it tucked in one side and half at the bottom but I got an a terrible tangle in the night and really thought the end of come . Dude I did manage to get out twice but it was such a struggle because I cannot move my body in the bed, can only move my legs a couple of inches and have virtually no movement in my arms. I can move slightly to the right but not to the left or up the bed, which is a pain because I can't breathe if I'm lying too flat. Then of course when I get back to bed I have to somehow get my legs in,try not to pin my arms underneath me,straighten my position and get some bedding over me if I can reach it using my teeth.

I'm sure one of you said that you had carers at night, how does this work out for you. I don't know what else I can do now, I'm so desperately tired and weary of fighting everything. I'm sorry to sound so negative when you all seem so positive but I can't see my way out of the hole at the moment. Maybe tomorrow will be a better day

Dear Kernowcluck,

I am writing from MND Connect regarding your post about your hospital bed.

From the description of your difficulties I would suggest that you contact the district nurses from your GP surgery and ask them to come and carry out an assessment for a pressure relieving mattress.
You have also mentioned that you are experiencing difficulties with your breathing when lying flat. Have you had a respiratory assessment? If not your GP or Neurologist will be able to refer you.
It may also be helpful to speak to your OT to see if she can suggest ways to help you move more easily in bed. Have you thought about having silky sheets? These may aid your movement whilst in bed.
Kind regards
Jacqui
MND Connect

[Ellie]

Oh whata shame!

I have an alternating air mattress, set to my weight and circulates air every 1min30. I have it for pressure protection, but it's really comfy too. I am very bony, esp shoulders, back & arms. I wouldn't recommend memory foam as they're hard for a person with limited mobility to move easily.

I don't have overnight carers. I'm put to bed ~11.30, having had 300mls water w/ night meds. Up at 7a.m. for loo. Fluid intake is >1600mls with 5 loo trips per day! I have a bladder routine

Maybe some/all of the adults living with you could work on a rota system to help you once per night?

You need a comfy mattress to be able to sleep, first & foremost. Our lives are tough enough without a proper night of sleep. Tell your OT.
You also mentioned your breathing; do you use BiPAP?

Ellie x.

[Terry]

Dear KC;

I don't think that you are negative just realistic. I'm sorry. I have quite a bit of arm and leg movement but there's no way that I could get up and back to bed afterwards and pull the covers over me. I can get up and back in bed but not with covers.

Other people use pocket spun mattress on the hospital beds, I use the one I was given without the topper. You can get a "Repose" air bed type topper but I've never fancied that.

If you can't turn in bed then you are at risk from bed sores which are a real joy, so I'm told. They have air mattresses that move by air blowing up different pockets and virtually stopping any risk of sores.

Do try to get some rest today as we don't perform well if we are tired.

Hugs, Terry

Bit fed up today. Tried the hospital bed for the first time last night and I couldn't sleep at all. I was so hoping that it was going to be the answer but it was so uncomfortable. I put a mattress topper on top of the hospital mattress to make it a bit softer but it was so hard I could feel every bone on the mattress. The bed doesn't have a frame that you could clip the duvet to but I had it tucked in one side and half at the bottom but I got an a terrible tangle in the night and really thought the end of come . Dude I did manage to get out twice but it was such a struggle because I cannot move my body in the bed, can only move my legs a couple of inches and have virtually no movement in my arms. I can move slightly to the right but not to the left or up the bed, which is a pain because I can't breathe if I'm lying too flat. Then of course when I get back to bed I have to somehow get my legs in,try not to pin my arms underneath me,straighten my position and get some bedding over me if I can reach it using my teeth.

I'm sure one of you said that you had carers at night, how does this work out for you. I don't know what else I can do now, I'm so desperately tired and weary of fighting everything. I'm sorry to sound so negative when you all seem so positive but I can't see my way out of the hole at the moment. Maybe tomorrow will be a better day

KC If you lie on your side on hospital bed and put both legs over edge then by raising backrest on bed, it sits you up. Simples. Dude x

[Terry]

No, I was never a boy scout KC;

I use a thermostatic blow heater for controlling the temperature as well as a fan in summer. Both of them and a light and tape player are on remote switches similar to Dudes and hang on my monkey bar along with a bell switch.

The tent thing is quite funny but it's worked for me four over four years. The hospice have never seen anything like it and I have had offers for late night parties in it from some helpers there but they talked about bringing in biscuits and crisps. I turned them both down as I don't want crumbs in the bed.

Love Terry

Thanks Ellie and dude. Bed has arrived but haven't given it a test drive yet. Yes Ellie I have a commode and Dude I will invest in some of those remote control thingies, I already have one for the TV, works well. I think it's being so stubborn that has kept me going so full but I take your point I will try to ask for more help.

KC These guys are very handy for turning on a fan, lights, suction machine etc. Stubborn and mnd not good bedfellows. You need to ask for help. Dude x

http://www.amazon.co.uk/Energenie-Remote-Control-Sockets-Pack/dp/B004A7XGH8/ref=sr_1_2?ie=UTF8&qid=1459942737&sr=8-2&keywords=remote+electric+socket

[Ellie]

Elaine, if the hospital bed bed works out (fingers crossed!), leave the commode by your bed so no walking into the loo. If you don't have one, ask OT.

I use a lightweight fleece blanket over me and an electric blanket under me - low heat & on a timer.

Hi Dude, my family are great and toilet me before I go to bed but this is usually quite early as they all go to work early so this makes for a long night.Without them I think I would struggle to stay at home so I am very grateful. And yes I am stubborn but I'm a great believer are in doing as much for yourself as possible. I cannot get out of my riser recliner any more because my legs and arms are too weak , It's a bit of a blow but that's just how it is. My hospital bed is being stalked installed as I type so fingers crossed I may be able to sit up and get my legs over the side and be independent throughout the night and I I am going to try to clamp my duvet.

Terry I have this vision of you in your tent, were you ever a boy scout? That might be a good option for the summer as I find it hard to control my temperature at night being unable to throw the duvet off or pull it back on again. Talk about necessity being the mother of invention!

Thank you both xx