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Thread: Non Invasive Ventillation

  1. #11
    Thank you everyone who replied your comments are a great help.xx

    Colin got on a bit better last night managing three hours initially followed by three hours of good sleep without it. He then wanted it on again for another few hours before he got up. I think your right Magic, for him it is just going to take a bit longer to get used to it. As for a signal that is a swift kick to wake me up!! Although if he is going to wear it in the morning I will maybe have to look into something that he can operate which buzzes or rings because with 3 kids in the house I dont have time for long lies! dont think any of us carers will !!
    We are really hoping that it will help him sleep on his back again which is something he just cant do at the moment. He can turn himself in bed however realistically I'm not sure how much longer he will be able to do this. He is also awake when turning so again a less restful sleep. I have wondered whether we would be eligible for a profiling bed and will take this up with the team at the rehabilitation centre he attends every other month.

    Annette, the nasal mask you mentioned with the chin strap maybe something worth mentioning to the respiratory team, they pushed for the full face because of weakness in his mouth muscles but Colin is keen to give it a try so I will call them on Monday.

    Dai, Good to hear you are getting on well with NIV. I think you are right breathing through the nose would deinitely help. We talked about this after reading your post and Colin seems to use all three combinations, mouth, nose and mouth and nose during the night but I think subconciously he reverts to mouth. Will remember your point about the water being cold, though I do remember one of the nurses saying if Colin felt the air cold putting the tube ,which connects machine and mask, under the duvet can warm the air.

    I think you and Terry are right about the settings. It took a few nights for chest pains to kick which seems to be the norm with Colin when he overdoes something i.e walking too far one day can give pain/discomfort in hips or knees a few days later.
    He was diagnosed with ALS as initial symptoms were in his hands and arms however bulbar symptoms then started to present. The dry mouth disappears within a few minutes of sitting up however I will get some of the dry mouth spray and try using it at night. He can be bothered with excess saliva during the day, thick stringy type, pooling at the front of his mouth but its not overly troublesome at moment. Uses a mouthwash in the morning and only yesterday let me brush his teeth, determined to do it himself, however really struggling to get his arms up to do it effectively. Also I think the with the wasting in his tongue getting the brush in the wrong place can lead to gagging.

    Thanks again every one and Dianne if anything else pops into my head about NIV I will PM you. xx


  2. #12
    You definitely should be able to get a profiling bed. The OTs were keen for me to have one as soon as I mentioned that I couldn't sit up in bed to get a sip of water. I've got an air mattress which is good foR preventing pressure sores (not that I had any) but it is a bit harder to move around on it. It was getting difficult anyway so at least the air mattress means it's less important too. And with Colin's breathing, raising the bed so he can lie on his back without being flat should really help.

  3. #13
    Hi Irene it took my hubby a while to get used to it.a little trick rob did was blowing out hard and moving his head which would then set the alarm off but the naughty boy used to do it on purpose sometimes just to get us running in lol.we had a humidifier machine in the room and I put vics vapour rub in it so the air in the room was moister this must be something different to what others used as it is totally independent of the machine.if his nose gets sore on the bridge of his nose you need duoderm extra thin plasters.cut to shape and works wonders.get it on prescription through hospice consultant.they hadn't heard of of it but I did a lot of research finding something suitable and they now routinely recommend xxx

  4. #14
    My Dad has bulbar MND too and is dependent on bipap. He has a full ask (hard by day coz he can't wear his glasses) but there are other masks available. He has one with the soft bits that go up his nose, for example. Maybe a different mask style would cause less anxiety? Also, pressure can be altered I believe - have you got a respiratory nurse who can do that for you? Dad started with it at night time only, but now he uses it most of the time. However, I have since read that it has been suggested that it's good to use it before things worse , more proactive than reactive ... Wish we had known this. I would suggest getting help from respiratory nurse - dads is very good, she works with the resp consultant and visits dad at home regularly. Good luck x

  5. #15
    Alan Livett
    Hi Pepper. You mention in your last post the need for something to help Colin buzz you when he needs help. I spoke to the district nurse about an alarm to get help if I fell when on my own at home. She arranged for me to have a Safe and sound alarm which links to a telephone support service. They also provide alarms which can also page someone in the house. This service is free in Bradford!! Talk with your district nurse - she also arranged for profiling bed for me. Hope this is some use. Alan

  6. #16
    Again, thank you all so much for taking the time to reply, your comments are all really helpful.

    Alan, the safe and sound alarm sounds like a really good idea as with the boys I do have to be out and about. So far everything has been fine however it would be good to have a back up in place especially as his speech is really deteriorating. I will take this up with the OT at the same time as I broach the subject of the profiling bed.

    He has been very anti adaptions so far with the exception of his neeter eater, lite writer is like an elephant in the room, but we are getting there slowly, however I think he is starting to come round to the idea of a profiling bed ( I've got bricks from the garden under the head of our bed at the moment! ) and after almost a year we are off this week to get him a rise recliner chair. Planting seeds for a wheelcair for the car just so that we can get out for longer walks when the weather gets better.......hmm ....might get him on board for summer 2015!!

    Mask stayed on all night last night so looks like we are getting there which is great and he thought he did feel a benefit today. Respiratory team have mentioned the duoderm plasters Caroline so will keep an eye on that side of things. We do use vick on his chest from time to time to try to help nasal breathing but hadn't thought of using it in a seperate humidifier, might give this a go if the humidifier for the BiPAP doesnt work out. I think the Repiratory Team in Glasgow are planning to do another overnight TOSCA test once he gets established with the BiPAP and that will give them a better idea of the right settings for him. One of the nurses who stays locally brings it down to us and sets it up which means Colin doesnt need to go into hospital. We just pop it on when he goes to bed and they pick the machine up in the morning, they really couldnt be more helpful.
    Thanks again everyone. xx

  7. #17
    Hi pepper dont go and buy riser recliner your ot can measure up and put in for one supplied from costs you nothing.!we did eventuality give in and have a hospital bed again you don't sister's bought us a profiling bed but to be honest they are not that good.rob had a fall so it was downstairs in the dining for him in hospital bed and I was upstairs.we'd been together 28 years at that point and never slept alone but when I went to check on him he said it was the best nights sleep he'd ever had !!!! Funny thing was I felt the same but didnt want to upset him lol .one thing that got us through absolutely everything.was a wharped sense of humour.much love.caroline xxx

  8. #18
    Alan Livett
    Hi pepper. I have just written a long post and have hit the wrong button and the whole post had disappeared!!! So frustrating. Anyway I'll try again with a shorter post as its getting late!! Don't go out and buy a riser recliner before you speak to your OT. My OT contacted the MNDA and arranged for me to borrow one. Save your money for something for yourself!!
    Last edited by Alan Livett; 16th February 2014 at 21:50.

  9. #19
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Yes, Alan's right Pepper;

    Get OT around to put a referral into the Mnda as they normally lend them out to us.


  10. #20
    I agree re the riser recliner, we have one on loan from the MNDA just needed the OT to make a referral to them

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