Over the last few days I've been having increasing difficulty with swallowing. Everything seems to result in a pool of saliva lodged in my throat which makes me 'growl' trying to clear it. I contacted the SaLT and she came to see me this morning and advised that I should give up on eating for calories and go over to tube feeding to get the bulk of my nutrition needs. She said just eat small amounts for enjoyment and if it's not enjoyable don't bother eating it. So I've had two bottles of Ensure earlier and I'm going to have two more later. Louise has just made me a fruit smoothie, which we thought might go down okay, but even that's making me cough. Also my throat feels 'hot' which is odd.
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Losing my swallow
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Sorry to hear that, Gary, it's just pants to know functions are ebbing away.
Safety should come first so, if that means reducing oral intake, it's something to seriously consider - aspiration can happen very easily, so is to be avoided if you want to steer clear of chest infections and pneumonia.
If you are happy to stick with bolus feeding, great, if not or you maybe want to mix & match, get a pump - might be no harm having one in the house, along with giving sets and some food containers.
Even mild citrus fruit will catch your breath. And... any chance your hot throat is an infected throat??
If saliva is an issue throughout the day, it can be reduced.
Big hug to you.
Love Ellie.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Originally posted by Ellie View PostSorry to hear that, Gary, it's just pants to know functions are ebbing away.
Safety should come first so, if that means reducing oral intake, it's something to seriously consider - aspiration can happen very easily, so is to be avoided if you want to steer clear of chest infections and pneumonia.
If you are happy to stick with bolus feeding, great, if not or you maybe want to mix & match, get a pump - might be no harm having one in the house, along with giving sets and some food containers.
Even mild citrus fruit will catch your breath. And... any chance your hot throat is an infected throat??
If saliva is an issue throughout the day, it can be reduced.
Big hug to you.
Love Ellie.Each day is made easier with a bit of humour.
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If your swallow went suddenly, it's worth getting the GP to look at your throat and take a listen to your lungs while they're at it - better to be sure, so what if it's a 'wasted journey'.
That feeding regimen sounds onerous - a pump in one of our much-loved jetpacks would free both you and Louise up!
And, sorry to be Mistress of Doom & Gloom, but get the ball rolling on NIV. Gary, I know how crap this is for you, we all do, and I hope you get into a plateau mode after the rough few months of relentless progression you've had 😘Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Gary Stephen is getting a new back pack for his pump and grub. The one I converted was big and bulky. He looked more like one of the Ghostbusters.
it's going well and I know he's getting nutrition and he doesn't even notice it's happening.
he's also got a breathing machine and thats been really good for him. He's been sleeping well and I'm sure the nutrition has helped too.
only thing wrong is him singing along to the good, the bad and the ugly which has ended in a coughing fit. Stupid *** 😩
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Originally posted by Ellie View PostIf your swallow went suddenly, it's worth getting the GP to look at your throat and take a listen to your lungs while they're at it - better to be sure, so what if it's a 'wasted journey'.
That feeding regimen sounds onerous - a pump in one of our much-loved jetpacks would free both you and Louise up!
And, sorry to be Mistress of Doom & Gloom, but get the ball rolling on NIV. Gary, I know how crap this is for you, we all do, and I hope you get into a plateau mode after the rough few months of relentless progression you've had 😘Each day is made easier with a bit of humour.
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Originally posted by Ellie View PostIf your swallow went suddenly, it's worth getting the GP to look at your throat and take a listen to your lungs while they're at it - better to be sure, so what if it's a 'wasted journey'.
.........
And, sorry to be Mistress of Doom & Gloom, but get the ball rolling on NIV. Gary, I know how crap this is for you, we all do, and I hope you get into a plateau mode after the rough few months of relentless progression you've had 😘
On a separate note, I've had nausea twice in the last few days. Very unusual for me so maybe it's the hyoscine patch. Who knows?
Each day is made easier with a bit of humour.
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Originally posted by GaryM View PostI've got a phone appointment tomorrow with the breathing consultant. I'm not sure what that will achieve as he'll just be talking to Louise.
Gary, not to put too fine a point on it, but vomiting for anyone with an impaired swallow is a particularly horrific experience, potentially dangerous too, so it's always advisable to have antisickness meds in the house - I keep a bottle of Domperidone in my medicine cupboard.
How ironic if it is the hyoscine causing your nausea - it itself is for preventing travel sickness 😏
I know you're 'only' nauseous, but it's something for everyone to consider (NIV users too)
Love Ellie.
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Originally posted by Ellie View PostBit of an affront 🤔
Gary, not to put too fine a point on it, but vomiting for anyone with an impaired swallow is a particularly horrific experience, potentially dangerous too, so it's always advisable to have antisickness meds in the house - I keep a bottle of Domperidone in my medicine cupboard.
How ironic if it is the hyoscine causing your nausea - it itself is for preventing travel sickness 😏
I know you're 'only' nauseous, but it's something for everyone to consider (NIV users too)
Love Ellie.
I'm not sure what else could be causing the nausea. In both cases I'd just walked from one part of the house to another and felt a bit light headed. Maybe I should check my blood pressure.
Each day is made easier with a bit of humour.
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Yes, she's recommended six bottles a day to start with (1800 cals) via bolus three times a day. We're just trying that for now. She mentioned 2cal, but I'm sticking with 1.5 for now. She's happy to supply a pump and even a rucksack if I want. We've got the bolus feeds down to about an hour now. We're applying for planning permission for the bottle store. 😉Each day is made easier with a bit of humour.
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