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SJ13
14th April 2013, 23:20
Hi All,
I've just read the other thread re the cough assist machine but wanted to ask another question about it. Dad has just received one from the palliative care team/ Salt team/physio to go hand in hand with his suction machine.
It is absolutely wonderful and clearing so much gunk from Dad's chest and combined with the suction he is a lot less bubbly and sleeping better. The only problem we are finding is that it is exhausting him tremendously and he is pretty much fit for nothing for the rest of the day which is not what we were expecting. If anything it is reducing his quality of life although it is clearing his chest. Dad is deteriorating in front of our eyes and after a few days of mixed emotions we have stopped his MND medication as that was definitely not helping with his quality of life either. The MND is galloping now and Dad is still waiting for his Rig. He is at present malnourished and slightly dehydrated so when we meet with Rig/nutrition nurse tomorrow I'm going to suggest a picc line or NG tube until 29th when rig is being fitted.
Any advice gratefully received.
Thanks Sarah

berdbrain
17th April 2013, 19:34
I don't know why you haven't had replies about the cough assist being exhausting. I am hoping it is because others find it helpful and do not get exhausted. I suppose that with your Dad being dehydrated and malnourished his energy levels are really low. I am so sorry, and I hope that you got the picc line or NG tube and it has made a difference.
We are still waiting for my sis's cough assist and I am hoping for great things with it.....I hope I am not disappointed.
I hope you have had some improvement this week, you are in my thoughts and prayers
XXXXXXXXXXXXXXXXXDebbieXXXXXXXXXXXXXXx

Jangobie
17th April 2013, 19:39
Hi Debbie and Sarah, Ed uses his cough assist machine most days it does mak him a bit short of breath afterwards because it does pull the gunk up off hi chest. Hope that your Dad get on better with it when he is more settled. Hope today has been a better day for everyone the sunshine does help. Love Diane

SJ13
17th April 2013, 20:27
Hi Debbie and Diane,
Thank you SO much for replying to my post. I was wondering why no one had replied and was feeling a little alone with my worries. We are realising that it is this wicked disease that is just ravaging Dad's body. We think the cough assist came at same time as a further deterioration with the MND. We have managed to get his rig brought forward to this Monday. It can come soon enough. Dad had a bad fall yesterday which has really knocked his confidence and put us all into a blind panic as he is so determined to stay on his feet right up until the end. Problem is that he needs a walking frame and one of us behind him when he is walking in case his legs go. We are hoping he will give in and use his wheelchair soon as we can't pick him up as he is very heavy even though he has lost 2 1/2 stone and is so so thin. Our grieving has been taken to another dimension in the past few days. Thank you again your support and replies brought tears to my eyes. Sarah xxxxxxx

SophieM
17th April 2013, 20:33
Hi Sarah,

I only just saw this thread. I can't really advise or add anything but wanted to say how sorry I am to read about your dad's deterioration, his fall etc. It is such a cruel disease.

I am sending you all my best wishes - thinking of you
xxx

Terry
17th April 2013, 20:39
Sorry too hear of your situation. I hope the RIG works well and he gains weight and strength afterwards. Falling is such a worry for me even though I have not been down for over two years. He needs to stay safe and it's worth getting in touch with the wheelchair services and the O T to get a lifting device so that you don't hurt yourselves. Take each day one at a time.
Love Terry

berdbrain
17th April 2013, 22:55
Oh Sarah, I just popped in again and am so glad that you've had lots of replies...I know that although I don't always reply I read all the posts and think about the people writing them and the situations they are in....I light my candles in church on a Friday and I say a prayer for all MND sufferers and their carers and my heart goes out to you....you are trying everything and copng with it being for your Dad, and he used to do things for you and now it's the other way 'round. life is so cruel....but just know that everybody who posts on this forum or reads these posts is thinking about you....except of course for the odd nutter that John Roy Terry Robert Pete and Rory 'The Crazy Gang' and of course Andrew, see off or take the mickey out of before Andrew manages to delete their puerile post!
sent with love, and keep fighting for your Dad you are doing a wonderful thing,
XXXXXXXXXXXXXXDebbieXXXXXXXXXXXXXXXXXXXXX

Rory
26th April 2013, 00:24
Hi Sarah
Glad you are getting response to your query. I have not used a cough assist machine - only the suction drain cleaner which seems to work for me. Hope the combination works well for dad and he gains some energy. I had the RIG fitted about 18 months ago and started to fully use it last July. I think my weight has stabilised Somewhat and to be honest it is less exhausting eating with an automatic feed.

The " Crazy Gang" are always here if you need a tonic with your gin !

Take care

Rory

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