View Full Version : MND and NIV

3rd March 2015, 12:23
Not been on the forum much in last 6 months but now feel I need the support of my mnd friends.
It's been nearly 12 months since my lovely dad was diagnosed with this awful disease that I really do hate with a passion, it has rapidly taken everything away from my dad including his dignity he last week was struggling with his breathing and now having to use NIV everyday was week today I received the news I been dreading, the mnd has progressed and been told depending how much dad can tolerate using the machine we could have little as weeks seeing dad on the NIV is truly heart breaking, he told me that soon as he has to be on NIV longer than off it then at that point he will give up and let it be what it is heart breaking to hear but I seen my dad suffer so much it's unreal.

So 25th March and it will be a year since we received the news that dad mnd I have made many friends on this forum and lost a few to :( and I know that my time with my dad is limited :( feeling really numb at the minute but dad looks so ppeaceful sat by his side just watching him breathing on NIV, how can life be so cruel to watch the one you love

Jennie x

3rd March 2015, 12:51
Hello Jennie. That is just so sad. Just keep posting on this forum and sharing your feelings with us all. We are all in the same boat, aren't we? -perhaps that is why this is such an extraordinary mix of lovely people, You can share stuff with us that perhaps you cant discuss with your nearest and dearest. Much love to you Joycie x

3rd March 2015, 14:48
Stick with it Jeannie, you will come out the other side, promise.

3rd March 2015, 17:55
Hello Jennie, you have my sympathy, watching someone you love suffer from this b . . . . y awful MND is heartbreaking. And yet we are expected to carry on as normal. So many haven't got a clue what it's like to have to try and act as if it's a normal day.

3rd March 2015, 19:13
Hi jennie,

I really do wish I could say something that really did make it easier for you, but we both know there is very little anyone can say, except we are thinking of you, through these difficult times ,my brother has COPD and spends his days on oxygen almost 24/7 life's incredibly cruel ,make the most of the time you spend with your dad.


4th March 2015, 02:42
It really does help to share with folks who know about MND here on the forum. It's very comforting to know others are going through the same things. (I wish we didn't have to)

(((((((((((((((((((((((((((((hugs))))))))))))))))) )))))))))


4th March 2015, 13:15
So another day sat by dad's side watching him on NIV for hours in hospital, mnd nurse told me yesterday that the NIV isn't helping and dads blood gases are increasing so they are upping the amount of time dad is having to spend on niv to see if it keeps the blood gases down :( just makes you realise that this time sat by dad's bedside is important but also heartbreaking to see but this is as good as it's gets for now and knowing dad is deteriorating makes me feel numb I so tired of this bloody hospital and mnd, funny how one disease can take over your life and take away my dad's.

So apart from feeling numb and angry I am ok, as my life still goes on and I have to be brave and put on a front as I still have to be mum and be there for the kids who ask daily about their grandad and explaining to 2 9 year olds how grandad is doing and how grandad isn't doing so good is hard they know grandad isn't going to get better but the questions keep coming and it's difficult to explain when things easily upset you but I managed to keep it together so far well in front of the kids but I do get upset and end up having a ccycle with my partner who has been my rock.

All your comments and support is over whelming and I do need all the support right now as I am only child and dealing with this on my own is hard

All my love to all on the site xxx Jennie xxx

4th March 2015, 13:27
Jennie, I know from personal experience how hard it is to see a parent so ill in hospital. You can only just stay by his side and be with him. You have all the virtual support you can ever want from us all here on the forum. We are all living alongside this dreadfully cruel disease, all struggling in the face of real adversity. Just keep posting and sharing your feelings with us. We are with you. Virtual hugs to you and Dad. xx Joycie x

13th March 2015, 12:18
Hi all I can't believe it, dad was discharged from hospital on Wednesday afternoon as 1, he desperately wanted to go home and 2, he was stable it was decided by his consultant that dad could go home without niv as he wasn't using it enough and we have to wait for out patients appointment at wythenshaw hospital, dad was over the moon to be going home and I was to as I just wanted my dad to be in his own home and feel comfortable, so all was well dad was home and things gone back to normal apart from while dad was in hospital he decided that he wanted to be fed via peg and just eat desserts for pleasure, so all was well yesterday afternoon noticed dad breathing was just same as when he went in nearly 3 weeks ago, so back to a & e again and they kept dad in I am absolutely fuming that they let dad out without the niv as all they kept saying when he was in hospital was he not using it enough for it to be beneficial, well now to me it proves that dad was using around 3 hours a day in 2/3 intervals but it was obviously doing something, as within 36 of dad not using it he struggling to breathe again, I was at hospital till 9.30pm and I feel totally drained, it's really taking its toll if I honest,

Any advice anyone is anyone in same boat with breathing

Jennie x

13th March 2015, 12:36
When you start with assisted breathing, the time spent on it will only increase until you can be on it 24/7. Not everyone will want to do that so the choice is a personal one.

13th March 2015, 12:48
Hello Jennie
Does your dad do any breathing exercises, I use a power breath to maintain some strength in the diaphragm. I monitor the breathing with a peak flow instrument' the Dr should be able to provide one for you.
My current measurements are in the 400units, but I'm a slower progress or than your father.
Do you attend the Walton centre?

13th March 2015, 14:48
Hi Darryl

No the hospital never said anything about breathing exercises, just he was in hospital for 2 1/2 weeks used the niv but not as much as they wanted to, but as he was stable and no changes they allowed him to go home, just been to hospital to see dad he seems ok just as before and his breathing has stablised without using niv his consultant said he wants to monitor dad over the weekend without using niv to see if things are deterioting or if it's the anxiousness is causing dads breathing to be effected, dad wasn't impressed that he to stay in but I really do think it's for the best to see what is causing it.

Never heard of the Walton Centre where is that Darryl ?

Jennie x

13th March 2015, 16:09
Hello Jennie
The Walton centre is on the outskirts of Liverpool. Prof Caroline Young is one of the heads of department. They have a breathing clinic and a sleep clinic.
Were is you Neuro support centre then? I'm having 3 or 6 monthly reviews there.


13th March 2015, 22:38
Dad is under Salford Royal hospital and goes every 3 mths next appointment is mid April and all the breathing is dealt at Wythenshawe Hospital, they are just monitoring dad at the moment to see what is triggering dad's breathing so probably won't find out anything new till Monday or Tuesday unless anything happens over next few days, just a wait and see fame just like it has been last few days.

Jennie x

14th March 2015, 11:21
Hi Jennie,
Sorry your dad and you are going through all this confusion.
I am far from an expert, but I can give you my take on what has happened to my husband re hospitals.
He is under two hospitals for breathing one diagnosed him (wrongly) I am sure with COPD about 2 years ago even then I was adament they were wrong wrong wrong at that point he had not been diagnosed with MND. He goes there still and they don't seem to have a clue about MND what so ever. Even wanted to put him on oxygen, when he clearly didn't need it. Turned out they had made a mistake in their calculations!!!! .
Hubby also attends The Walton Centre Liverpool for MND and the respiratory team at Aintree (same hospital grounds different name) understand totally MND. They are wonderful, totally supportive. My husband also was admitted there for 5 days in November. He tried to persevere with the Bipap and various masks and did manage an all night once, but he decided he did not want it for various reasons. The consultant tried to encourage him, offered for him to take it home but hubby said a definite no. Now, the consultant and his team were wonderful, they have always left the door open for him if he changes his mind. They are also just a phone call away. Very supportive indeed.
What I am trying to show you with this post is that firstly your Dad and you should be offered total support and the chance to take the Bipap home, if your not getting that input from them question why.
Also with all due respect the question has to be asked to they understand MND and the way it can attack the respiratory muscles at any
stage or are they more expert in the lungs and their function. I am only putting to you what I have witnessed with hubby's treatment.
I hope you get help and answers this time Jennie.
springtime x

16th March 2015, 10:48
Hi all thanks for all your comments :) dad in still in hospital to be monitored his breathing without the niv things seem to be ok but he keeps suffering panic attacks which that is then setting his breathing off so I think if we can keep the panic attacks at bay then his breathing won't hopefully be an issue, after speaking to dad yesterday I asked him what do he think that's sets the panic attacks off and he just couldn't answer me he said he didn't know, he been having about 3 a day which I am worried about, but he just never opens up to anyone how he feels, I am going to speak to his nurse at the hospice and see if we can try getting dad some massages to see if that helps rather than just taking medication, anyone any ideas or going through same thing I could really do with some advice x

Jennie xxxx

24th March 2015, 11:47
Hi all

My dad is now in wythenshaw hospital this week so they can monitor his breathing and also see if dad can tolerate NIV as when dad was admitted few weeks back things wasn't going so well so hopefully this time they will try different masks as this is where they specialise in breathing just a small 8 bed ward all on breathing, I going hospital soon so hopefully have some good news :), I have also noticed since dads breathing has started to be an issue other things are changing to, he seems so much weaker more tired and some days his speech is so bad I struggle to really understand, just wondering if this is maybe linked to the breathing?

Jennie x

24th March 2015, 13:02
Hello Jennie He is in a NHS ward and sometimes they aren't particularly au fait with the individual or collective aspects of MND, even though they are kind. Speech is the worst. If you are struggling to understand him so will the medical staff. When I go in I have three A4 laminates "Yes" "No" and "thank you" and I pick them up and wave them around. It is just a suggestion - might help Dad communicate when you aren't around Hope Dad gets some real help. Love Joycie xx

24th March 2015, 16:00
Hi joyice

Thanks for the advice been to see dad this afternoon and he so weak he didn't sleep well at all last night was very panicky so they increased his lazipam and he was fast asleep when I got there he woke up had smallest amount of lunch which he really struggled with then said a few things not fully sure what that was because his speech so bad cos he was shattered, then went back to sleep, the nurse said he had a stressful night and they was going to try him on niv later, after seeing him today I thought I cant believe how weak and frail he looked just hoping it's just a bad day and that this isn't the start of him going downhill, to be honest the bad days are now more than good days I say good day it's not exactly an good day just ok day, the panic attacks are getting more and more.

When I seen him today made me realise that our time is limited, I just hope that this niv will improve things.

Jennie xxx

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