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Ruthie
30th December 2012, 03:01
Hello. My lovely mum has bulbar palsy and we have been coping with all the stages so far. But I'm currently finding night-times terrifying. Mum started falling asleep during the daytime so the specialist nurse suggested minimising climbing the stairs. So a few weeks ago we organised things so mum only goes up the stairs once a day - when going to bed. She's just getting over a chest infection and the doctor said her chest is clear. But even having minimised her exertions, now when she gets into bed, her chest is heaving and heart pounding. She never complains but I'm so frightened, I keep waking up with my heart pounding and keep getting up to check she's ok. I feel so helpless and the specialist nurse is on holiday for another week. Is there anything can be done to help her breathing? Also, she's sleeping really badly because her saliva runs all the time and soaks her shoulder during the night and keeps her off her sleep. Any advice would be appreciated. Thanks, Ruthie.

magic
30th December 2012, 05:56
Ruthie, so sorry you and your Mum are having such a dreadful time. I do not have any experience of the severe saliva problem with Peter but do know from my work and reading the forum that there are measures that may help. Do contact MND Connect (http://www.mndassociation.org/life_with_mnd/mnd_connect.html). They will explain about the use of hyocine patches andmay suggest other agencies that can help in your specialist nurse's absence. Consider contacting the local hospice.
Do let us know how you go on.

Magic

Lisa
30th December 2012, 20:05
I'm sorry to hear you are having such a rough time my mum also suffers with saliva problems and was given hyocine patches which helped for a little while but it had a side affect that it stopped her from weeing. So she was taken off them and has just started another medication today.
Regards

Lisa

Rory
31st December 2012, 12:16
Hi Ruthie
I am a Bulpar Palsey sufferer and I can relate to the problems your mum has. I use a ventilator through the night - it helps dry out the saliva and keeps the lungs active. I have used it for over a year - it takes some getting used to but it has given me a good night sleep for most of the year and relives the saliva and coughing. Nasal spray helps as breathing through the nose is beneficial .
I too minimise use of the stairs and recharge with the ventilator if I am sitting downstairs.
I use a suction machine for excess gunge which also takes some getting used to but after having had two chest infections I find it a valuable gadget to have, I have not been recommended a cough assist machine - so I cannot comment . The saliva problem is hard to get the balance right
Hep this helps

Rory

Sammie
22nd February 2013, 13:21
Thanks for this, this is really interesting as my mum is struggling with breathing at night and excessive saliva.

A ventilator was recommended but its good to find out someones actual experience. I will pass this info onto Mum.

x

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