How can you tell?

Weltschmerz

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Joined
Apr 14, 2019
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Reason
CALS
Diagnosis
01/2019
Country
BE
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BE
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

Member
Joined
Apr 14, 2019
Messages
16
Reason
CALS
Diagnosis
01/2019
Country
BE
State
BE
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

Member
Joined
Apr 14, 2019
Messages
16
Reason
CALS
Diagnosis
01/2019
Country
BE
State
BE
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

Member
Joined
Apr 14, 2019
Messages
16
Reason
CALS
Diagnosis
01/2019
Country
BE
State
BE
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.
 
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