How can you tell?

Weltschmerz

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Hi all,

With enormous thanks to all those on here who have helped so far, I am now posting about a nagging issue I’ve had for a while. How can you tell if a PALS is doing “well”, or if things are moving apace? For context my own PALS was diagnosed in January this year, with very few symptoms for only a few months beforehand. In February stairs became impossible, in March a wheelchair, in May we were onto a hospital bed and an electric wheelchair; then June a respiratory machine, which immediately became 24/7. We work on cough assist every day but secretions began in September and last month saw the arrival of choking and a croaky voice. Next up will presumably be a feeding tube but all in all I wonder: is it always this reactive? How can I tell whether all is “well” despite all of this? By that I mean observe or work on upcoming issues with any chance of mitigation. I’m in my mid-thirties and haven’t even seen many friends or family have illness, so being married to a PALS has been a trial by fire this year...I realise everyone’s experience seems to be different but this seems to have been a particularly brutal onslaught.

Thanks in advance.
 

KimT

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I'm so sorry you are going through this. Your PALS is showing rapid progression. I would get the feeding tube in ASAP if your PALS is using BiPap 24/7. It will be good for your PALS and for you. Using BiPap and a feeding tube will allow your PALS to remain comfortable and to get proper nutrition and avoid choking.
 

Weltschmerz

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Thanks. I think a feeding tube is indeed on the cards; quarterly visit to the ALS clinic coming up next week. Last time (September) they were in two minds about the tube but we have moved on a lot since then. The BiPap has been 24/7 almost since the first week, which is why I feel like we are moving through all of these stages too quickly and too reactively, in a way. Good to know the tube will be so helpful.
 

lgelb

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In considering the BiPAP + feeding tube, while the latter should prevent choking on food and malnutrition, the combination isn't necessarily a long-term recipe for stability given the sequence and progression that you describe.

In all honesty, I would anticipate a rather short journey, and the tube decision is one that should be made separately as with any other intervention.

I am very sorry. Let us know what else we may be able to address, and how we may support you.

Best,
Laurie
 

Weltschmerz

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Wow, thanks very much for the kindness and the honesty. This is such an awful and odd position to find yourself in, less than a year since investigations began.

In terms of BiPap + PEG, our recent appointment wasn’t conclusive: the feeding tube is an option but with likely 7 days required in hospital (with only 2 hours/day to visit), it isn’t necessarily an entirely attractive proposition. I appreciate the honesty because I am also anticipating a rather short journey, as this has been all along. I think if we move to the PEG, I’ll do some research into other threads here that may be able to provide some background or general insight. Thanks again, very much indeed.
 

lgelb

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Is there not a hospital in Belgium, perhaps in Leuven, that can place a tube radiologically (RIG and other variants), requiring at worst a minimal stay? You deserve that option, at least, and that would be the recommended procedure anyway, given the impaired breathing.
 

Weltschmerz

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Leuven is the hospital we go to; and where they said PEG and a 7 day-stay would be required. Apparently a lot of ALS patients don’t want that so just don’t do the surgery. That didn’t seem quite right to me - maybe I’ll raise the question of RIG instead of PEG just to see. In any event the PEG surgery involves both the respiratory team and a surgeon to fit the tube. But we are talking discomfort at about 10 seconds without a mask, and probably real breathing issues at 45 seconds or so I guess. Thanks for the suggestion anyway, good to have food for thought.
 

Weltschmerz

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Well we’ve ended up in the hospital a few days early thanks to some additional issues involving secretions and a lack of food and water. Let’s see if the PEG surgery is brought forward but there has been no suggestion of RIG so far. One element that is new to me is that I’ve noticed my PALS has a droopy/lazy/slower eyelid. Only one but it’s on the side that all this began with so I’m anxious. Some initial research suggests eyes aren’t often affected but given we’ve run the full gambit in a year, I wonder if this is not the usual type or case anyway...
 

lgelb

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I am sorry to hear you are in the hospital. If dehydration/malnutrition are issues, it certainly sounds worthwhile to broach the PEG/RIG.

It is rare but eyelid muscles can be affected, as you say. If blinking is impaired, that can create problems with the tear layer so you will want to keep watch on that, use lubricating gel drops/ointment regularly, and at night, at least, it may be wiser to tape the eye shut if things progress to that point.
 

Weltschmerz

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Thanks. We have not managed to get to the PEG/RIG discussion yet because of the ongoing issues that led to hospitalisation. I don't know if I should start another thread but essentially my PALS is having a lot of anxiety and panic. It’s been a horrendous year and I kept thinking there would be more of this, but there wasn’t. Secretions and saliva accumulating in a throat covered by a mask which her own hands can’t remove seems to have done it. I need to investigate better ways of offering support while remaining calm myself (not easy).
 

lgelb

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This thread is fine...secretions and saliva are typically reduced through drugs, equipment and positioning. It is very scary to feel that lack of control. Sometimes if all else fails, a small dose of a benzodiazepine may help the panic, but unless she is in the home stretch, you don't want to depress breathing too much. It is a balance until the day when the balance doesn't matter any more.

At the end of life, benzos are often used to reduce anxiety and morphine to reduce the work of breathing, creating shallower respiration that ultimately shortens the journey.

Generally, to reduce secretions, we talk about keeping furnace and machine filters clean/replacing on schedule; hydration; warm drinks, papaya/pineapple juice, atropine, a Cough Assist (which you have), suction, a room humidifier if needed, tweaking machine humidification settings, only using distilled water in the machine, lots of considerations. Avoiding irritation and buildup is much easier than addressing it but you end up doing both. Some of us used a baby aspirator to address postnasal drip and also paper towels for "spitting" before bed and other times, if the PALS can do so.

The feeding tube in her case would almost certainly prolong life, but not necessarily quality, and likely neither for long. I would have those conversations now, so as not to be in any way unsure of what to do should her breathing or swallowing deteriorate rapidly.
 

Weltschmerz

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I’m also struggling with what seems like a need to control me now that nothing else in my PALS’ own body can be controlled. Not even really the head now, and it seems as though her mouth is locking up a little. Still, hospital seems to provide a lot of aspiration, which I appreciate. I’ll have to try some of those secretion suggestions when we get home. And the conversations we’ve had in theory but without medical input in terms of outlining quality as a factor. I do know most of the preferences so would feel on some sort of footing there (I think, but who knows...)
 

Weltschmerz

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Well the surgery has been superseded by events because the focus is now on maintaining comfort. With secretions and infection in the lungs and no ability to cough naturally, or with assistance, we have had a tracheotomy discussion but against a backdrop of obvious caution about pursuing it. A small amount of morphine has been given and is working to provide comfort for the moment.

And só a year of instability in 2019 looks like it’s continuing in 2020 albeit in an even more pronounced, acute way.
 

KateEmerson

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Thinking of you and your wife as you go through this very difficult time. Sending you thoughts of wisdom and strength. Kate
 
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