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KatieNBoyd

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Hello my friends, The words that you all share and the wisdom that you have spread on these forums has been invaluable.

I have been told by a friend and his pastor that I will be there at the right time for someone else that is going through this terrible disease and be able to help them. For now I have questions that lurk in my mind.

The "why is this happening?" "Why is my PALS so mean to me when I am trying my best to help him?" "What more can I to to help him?"

Your advice of setting limits for myself and he have made things easier.

My question today is a sharp one but continues to play in my head.
For those PALS who chose to not to do a PEG or any Vent/trach, How long did it last (diagnosis to the end)??

My PALS was DX in Oct (155 pounds) today he is maybe 120. He now eats only about 1000 calories a day. Gets up, eats, looks at his computer and returns to bed. Still walking slowly, eating slowly. We do not do the ALS clinics nor will he use his Bipap for more than 3 -4 hours at night (he hates it). He takes Hydocodone for pain only when he can't tolerate it anymore.

Thank you Katie
 

affected

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Hi Katie,

I notice you posted this in the past CALS section as you only want answers from those whose PALS have now won and are free of ALS.

This disease just doesn't run along predictable lines, so while we may answer our experience it doesn't necessarily equate. A good example would be Dave's Julie - she has been seriously malnourished for nearly as long as my Chris lived after diagnosis. How long will she go on this way? We have no clue!

Obviously with the amount of weight loss he has, and the poor volume of calories (that is just how Chris was, both in weight and his intake) he is on a steady decline.

But it's the breathing that really does them in. It's surprising how long a person can linger in an emaciated stated if they are breathing ok.

So my Chris lasted 11 months after diagnosis. He had vague symptoms we never recognised as significant for a couple of years. Then bulbar symptoms for several months that worsened so we went to the first doctor. 6 months until we got the diagnosis.

Not sure if this helps at all or not.
 

Nikki J

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I agree with Tillie that there is no way to predict based on other's experience. My mother began with FTD, ALS came later. No bipap, no feeding tube 10 years from diagnosis to death. Severe swallowing issues for at least 2 years. I can't remember exactly. Sorry I know it would be a smidge easier if you could know what was going to happen
 

KatieNBoyd

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Thank you both. Yes I realize each person is different. His breathing has become labored.
Hugs to you both
 

Atsugi

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Thank you both. Yes I realize each person is different. His breathing has become labored.
Hugs to you both

Your description of him getting around slowly, using the computer, and sleeping a lot actually sound very good to me. It's cat-like behavior, and is much better than many other kinds.

"Labored" breathing. Now that's interesting to me. There are several different kinds of muscle actions that we might describe as "labored" so only a doctor can truly tell what it means. Possibly there is something going on in his lungs that can be fixed.
 

lgelb

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Hi, Katie,
If he is able to use the BiPAP more, he might well have more energy, not to mention less labored breathing. Why does he wake up while on it/hate it? Many issues can be fixed.

As to your own question, nutrition and breathing often tell the tale, but timing can come down to the interest in living and so is more predictable by you than us.

Best,
Laurie
 

KatieNBoyd

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Thank you Mike, Yes it is very cat like.

When I say labored it is my description. His shoulders rise, the triangle between his neck , clavicle, and shoulder meet becomes deep and hollowed as he draws his breath.

He has begun to choke more when he eats and drinks. Also the increased mucus/phlegm makes him gag. He also has generalized all over pain (shoulders, hands, legs) cold feet, but claims to be hot too.

As i stated he does not want to go to any more ALS clinics. But when I came home the other day he informs me he has an appointment on Friday with the Neurologist that made the diagnosis. I can not get him to tell me what he believes the Neurologist can do so we will see. Jon has never been tested for the FTD but living with him and reading up on it as well as mentioning it once to the ALS clinic Dr I am pretty sure he has it too a degree. He cries easily, he becomes disoriented, angry and moody. Believes phone scams and so on.

My question about "how long" was/is just curiosity basically.

The Bipap machine has always bothered him from day one. We were able to get a better more comfortable full mask when we visited Mayo. I know that he sleeps better when he does wear it. But he is bothered by severe bloating/gas. We use ACT lozenges to help with the dry mouth. I think (my opinion it is his stubbornness fighting something that has the potential to help but he does not want it)

Thank you all again for taking the time to respond to me.
Katie
 

lgelb

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If he is swallowing air, the IPAP range, EPAP or both are probably set too high, as is the speed of the air flow when he inhales. It's a pretty easy fix. His cognitive issues could relate at least in part to the poor air exchange while breathing.
 

affected

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Katie my Chris breathed the way you describe for quite a long time, with it becoming more and more pronounced. It's because he is use ancillary muscles to breathe - the diaphragm and intercostal muscles (the ones between the ribs) which are normally used to breathe are becoming very weak so he is using those other muscles to inflate his lungs. It means they breathe with the top of the lungs and breathe shallowly.

If he is retaining CO2 then it can make him more confused, but patterns of behaviour are more likely to be FTD as they are changes in the personality. Things like falling for scams is commonly reported with FTD!
 

Barbie

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my husband lived a long time like that--but it took a long time for him to get to the labored breathing stage. yours hasn't been dx'd for that long ...

it is so tough, I m sorry
 

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As tillie said about chris, my steve used his ancillary muscles for a long time. Essentially at diagnosis until he died. He was able to maintain weight but I dont believe it was all good. I think in part, his liver and kidneys were shutting down and he retained fluid. He was emaciated with a big belly and jaundiced.

I would pm Laurie the machine settings. She has been very helpful to many. If she cant help, I would make sure he sees his pulmo or at least mention it to the neuro. Positioning when sitting and laying down can help a lot. Hugs
 

Aussiemndcarer

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I'm wondering too! Why do our PALS follow such different pathways? This disease throws up so many questions. I'm on here today because it has been a rough day. My PALS had a bad choking or gurgling after eating breakfast of poached eggs and avocado on toast.
( he still insists on toast,even though I want him to eat soft bread). He is sleeping now after a small dose of morphine and his mask on for air. Hopefully he will be ok when he awakes. This has only happened about 4 times now,and each time I wonder is this it? How do you pass when you have respiratory problems? I've been ploughing through the posts to see if anyone has a PaLS with a similar history!
My PALS has played a lot of sport and was always very competitive,so, he is competing with MND/ ALS and assures me he is going to make his next neurological appointment just to prove he can. ( our specialist was very worried about his breathing two visits ago! )
Katie, please know that your PALS loves you. They just get so frustrated at what is happening to them. I'm sending my love to you both for your journey.
 

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Aussie there are several ways they may pass.

If he aspirates he will develop pneumonia. That was the start of the end for Chris, though I can't say it shortened his life by any great amount. He lived 4 weeks after the pneumonia which depleted him a lot, and all the antibiotics saw him develop many horrible fungal infections that we couldn't shift. We tried an oral antifungal systemic treatment which then caused the runs, and that really took the last bit out of him. (he was down to around 100 lbs, so very emaciated)

He had pneumonia again in his last day or so, but he was already actively dying and we did not attempt to treat it, he was total palliative care only at that point and at home very peaceful. He died very peacefully without fear or pain with just me loving him through the end.

For others, they simply stop breathing in their sleep, often without the CALS realising they are that close to death. There are a surprising number of PALS that pass suddenly this way.

For others, the respiratory function declines requiring continual bipap and meds for anxiety until they cannot breathe.

For those that vent, there are still a variety of ways that their breathing is halted.

I've only known one PALS to actually choke. The choking isn't really an obstruction as in usual choking. It is usually small amounts of food/fluid entering the airway and the inability to cough it out, resulting in aspiration. Or food/fluid remaining in the pocket in the throat causing irritation and being unable to perform a full swallow to clear it. The attempts to clear it often result in aspiration.

The one PALS I've known to choke was not able to swallow at all, and had severe FTD. He found an apple one day and attempted to eat it, skin and all. So that is a unique kind of case.

The other highest cause of death for PALS after aspiration pneumonias is head injuries from falling. I've known far too many of these :(
 
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