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ccvsd
12th December 2013, 21:20
Hi all,
Hubby and I saw our MND specialist, nurse and a dietician today. I mentioned that I had noticed my breathing getting weaker and starting to get trouble swallowing.

The specialist said that she would speed up my referral to the breathing specialist to get assessed for a ventilator which will help me breath whilst the muscles are still working. She then added that it might be possible to get a respirator, like Stephen Hawkins has, to help me breath when my muscles have given up.

I said I would like to go for that. Having young children, I want to be around to support them as long as I can. But to be honest, I don't really know what the implications are. I can't find much info about respirators, I was given the impression that they are not usually provided, it might just be my situation which suggests it's use?

As respiration is usually what brings about the end of life for MND sufferers, does this mean I'm going to live forever? Or at least long enough for something like old age to kick in - would be a long wait, 30 or so years! I think we would be bankrupt on carer's fees if I last that long.

Perhaps I'm being hopelessly naive, and would love someone wise and knowledgeable to help enlighten me!

ccinjersey
12th December 2013, 22:13
You seem very much a realist to me CC, and not hopelessly na´ve, just ‘Hopeful’ :) All the very best to you.

CCxx

pete
12th December 2013, 22:36
Hi CC,

Yes I agree totally, but drawing any kind of comparison to Steven hawking is not possible! he is a one off and his type of MND has to be so very different to the normal, What I can say, having just been to the four month prodding and interrogation sessions ,the respiritry specialist found that my breathing hadn't changed since the last visit, but he did mention a nippy ventilator that might be required if I had headaches when waking or found my breathing was uncomfortable when laying flat on my back, to date so far so good ,he usually insists on a overnight oximetry test just to monitor your capacity while sleeping,there are indicators well before a ventilator is issued ,so until you see a respiritry specialist ,I would hold off doing things that are not needed just yet, I know only too well how the teams tend to treat us all the same ,and that we all need the same treatments ,this isn't the case you need to be assessed on your condition not do as others have done because it's the right thing to do for the rest !,

Pete

ccvsd
13th December 2013, 14:53
Hi Pete. You are right about Prof. Hawkins, he is not a typical case - if there is such a thing anyway. The only comparison is really with the equipment he has, in very general terms for a novice like me to appreciate what we are talking about.

I haven't met the respiratory specialist yet so no doubt they will have more info and I'd probably need tests etc before getting any equipment. Everything seems to be deteriorating at such a rate that the specialists are thinking ahead, trying to get things in place early, ready for when I need them.

A ventilator makes a lot of sense, it's relatively straightforward to assist one's natural breathing. I will happily try out this bit of kit if it's deemed suitable. I have a philosophical mind so thoughts of having a respirator to breathe for me in order to help get an extra year or so with my children suddenly became a more deep thought. I realised the implications could be rather more complex than I initially thought and I would like to spend time considering this.

So I'm hoping that others might have been through this process or faced similar decisions.

Ellie
13th December 2013, 15:59
Hi ccvsd,
You’ve raised a very pertinent issue; the vast majority of us are never given the option of having a tracheotomy and ventilation, which would prolong life, albeit with consequences, as you say.
Having watched the (imo, very good) documentary by Stephen Hawking, ‘A brief history of mine’ , C4 last week, he said he would have died from pneumonia, had he not been put into a coma and had his trachy. That was 30 years ago.
Maybe there are physiological reasons why we are routinely just given BiPaps ??

ccvsd
13th December 2013, 16:09
Yes Ellie, this is what I am wondering. Perhaps there is a justifiable reason.

Ellie
13th December 2013, 16:13
Apart from the money .....

ccvsd
13th December 2013, 18:23
Yes, Ellie, quite refreshing to find an alternative reason.

I found this on the NINDS website:

"Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. People need to be fully informed about these considerations and the long-term effects of life without movement before they make decisions about ventilation support."

This is why I'm interested in finding out more. Whilst I want to live as long as I can for my children, I'm thinking I'd like to be here for a couple more years for them, not another 30 in complete paralysis. Complete respect to Prof. Hawkins for how he has managed to contribute to our world and knowledge. I'm not sure I could make such a contribution and, therefore, would life (and the care/expense required to support it) seem relatively pointless?

Also, although a respirator can prolong life beyond what the body would endure without it's continued support, there must be ethical issues in deciding whether to continue with it's use or how long to use it for. Seems like a can of unanswerable worms. Impossible but fascinating.

caz
13th December 2013, 18:52
Hi cc v a vent machine is I think from personal point of view a good thing.hubby reluctantly started using one a couple of hours a day then at night to prevent headaches.a tip I picked up at night time was to also plug a humidifier so the air wasn't too dry .ultimately in the last couple of months he never took it off and as he had als version he could still talk to us with the mask on,without it a bare whisper.if the mask makes your nose sore get duoderm extra thin plasters from your palliative care team and cut to bridge of nose.challenge everything that goes thrown your way and never give up.we did and it made us so much stronger as a family .lots of love.Caroline xx

ccvsd
13th December 2013, 19:33
Thanks for the advice Caroline, I'm going to print it out ready for when we need it.

There are a lot of Caroline's on here, clearly a good place to be!
Caroline
xxx

ccinjersey
13th December 2013, 22:42
Hi CC

A soul searching decision, not an easy one to make. Having younger children would definitely seem to a strong motivator, and a reason to make plans to be here for as long as you possible can. To me it would seem to come down the quality of life you are able to accept or not accept. As I was just recently reminded ‘where there is life there is hope’.

I was reading a bio on Stephen Hawkings. In the article it stated the reason he has lived this long with this illness is because ‘he refuses to die’. When I read that I thought that was not logical, but after reading your post about ventilators, decisions, and choices it now makes perfect sense.

I have to say I admire how you approach this illness head on, and by making necessary plans to stay a few steps ahead of it. God bless you, and give you all the strength and endurance you need.

CC xxx

Cookewitch
15th December 2013, 11:30
From the various forums I go on for MND/ALS it seems that many in the US have trachs but in this country hardly any. It also seems that the carers/patients in the US, as a result of the trachs, live longer but with many more care needs due to the other deteriorations of MND.

As for Stephen Hawking, one of the first things our palliative care consultant told us was 'he's on life support, that's what he wants, he wants to live and has all the gubbings necessary to do that'. I would say there are many of the older patients diagnosed which wouldn't want that.....my dad being one of them.

ccvsd
15th December 2013, 12:36
I know what you mean Cookiewitch. I'm a younger patient who isn't sure about all that. I'm sure I could cope with it, but have issues about levels of care involved and whether it might just be best to slip away and let my family get on with their lives rather than keep me going against the odds.

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