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aspirate -

ReginaS

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PALS cannot drink liquids that are too thin and ensure (plus) is somehow too thick and bothers him.
He drinks mostly liquids (and occasionally eats some cheese) but yesterday he wanted to try sole (fish). First bite was ok - 2nd bite was very difficult. He coughed and tried to get it out again for at least 30 min. There was some very thick mucus at times. I don't think his cough is very effective.
Tonight we had a milder version of it with smooth soup.

He is also very sensitive to the littlest pieces in liquids...
I am not completely sure what's going on and am wondering if there is anything I can do / get to provide some comfort? He does not want a feeding tube.
 

lgelb

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This sounds like normal progression, i.e. loss of ability to handle food/swallow/cough productively. I know he has BiPAP, but does he have a Cough Assist, suction machine?

Since he doesn't want a tube, the best bets are smooth textured foods, which a high-powered blender like a Ninja or Vitamix can help produce. Pudding consistency can be achieved with puddings, cream soups, soft-cooked/over easy eggs, mashed potatoes w/ butter or sour cream, smooth nut butters, etc.

Thin liquids do typically end up on the problem list. Some do better with soda, others do worse.

Proteins that crumble into inconsistent size/thickness of bites like the fish are likely to cause problems, but can sometimes be ground and become part of smoother foods.

Applesauce, pudding cups, jello, gelato (thicker than ice cream) are some potential quick snacks depending on which muscles can do what.

I do have to say that even with all the respiratory equipment and care with his food, as we've discussed, it's likely that at some point he won't get enough nutrition and begin to go downhill, and/or aspirate something and end up with pneumonia. Communicating now about his wishes in these scenarios/his vision of life from now on in, would therefore be wise.
 
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Firefighter58

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I think a tube is the answer, I have one as many of us here do and I find it works fine with no problems and very little if any maintenance. There is a very wide selection of foods and it doesn’t mater the taste because you can’t taste it anyway. I find tomato juice, buttermilk easy to swallow also the big advantage of a tube is taking all your meds.
Al
 

azgirl

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I would ask him to reconsider tube. It is a blessing for me and my caregivers. Choking is no fun for you or your caregivers to watch.

the tube allows proper hydration and nutrition with little effort. Dying of dehydration is not something I'd choose. Plus dehydration causes so many other issues like constipation, I am grateful I made the decision to get one.

that said, every pals should get to make that choice.
 

ReginaS

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Thanks so much for the responses.

So far he has opted against a feeding tube and would rather reach the end sooner. I hope very much that hospice (which we don't have yet) or palliative care can provide comfort measures when he/we need them.

As of this morning he lost the ability to lift a light plastic cup to his mouth. Unless this changes by tomorrow he cannot drink on his own any longer. His only nutrition is thicker liquids by cup and occasionally some cheese.

Today he probably did not get enough liquids. We were both just sad by this new development. Some changes are easier to take than others. We were hoping that his strength would come back during the day. I went out and bought even lighter plastic cups w. handle at the party store but they did not work either.

I used suction when he aspirated but did not really know what I was doing and it was the 1st time. It helped. We do not have a cough assist and I asked the respiratory therapist about one. Let's see what she says. Our next clinic appointment is mid April.

Otherwise things are great. :) We went into the yard today - I pulled weeds and enjoyed the sunshine and listening to the birds. He makes jokes and we laugh so hard.

Has anybody ever heard of something like a "power straw"? He came up with this idea and we sure could use one. A straw where you could pull a little lever to get some liquid into your mouth. Is anything like that available?
 

lgelb

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Some SCI patients find it easier to use a CamelBak reservoir with a bite valve than straws -- dk if that would work for him. If so, they mount on bed or chair.

He doesn't let you help him drink at all?

Since you had fun outside, you might try to link hydration to that.
 

ReginaS

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We found "Drink E-Z" on the internet. <link removed> It's an automated drinking bottle w. pump technology.

It seems to be a Canadian product.
Has anybody here used it? We ordered one and I hope it will work. it has 3 speeds and supposedly it will work for soups.

I will send an update once we tried it out.
 
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swalker

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I don't know if this will be helpful or not.

I use a straw to drink. I have found that if the straw is too narrow, I have difficulty generating enough suction to draw the liquid up the straw.

If the straw is too wide, I can't suck enough volume out of the straw for the liquid to reach my mouth.

So, I need a straw that is just right. I have found that the straws at McDonalds are the best for me.

I mentioned this to my swallowing therapist, thinking she would just laugh about it with me. Her response surprised me. She said that many of her patients told her the same thing.

We now hord McDonalds straws:).

Steve
 

ReginaS

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Thanks Steve! I laughed reading your post.
Unfortunately any ability to suck on a straw is gone. That's why we need a pump :).

How did you get the wheelchair manufacturer to change the torque? I'm rather curious about this.
 

ReginaS

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We have a drinking bottle with a battery operated pump now. The bottle works. You press a button and water comes out through the straw. No need for suction.

Even though this bottle is also marketed to ALS patients we thought they really need to improve it before it is helpful.
For my pALS the straw is too short. It should be flexible (like a camel back) and thinner in diameter. The water will spray out of the straw right to the back of the throat/mouth which in not good. He cannot even get it to his mouth - he would need to be able to lift the bottle to his mouth. And then position the straw somewhere in his mouth so that it does not squirt the water to the back of his throat. He is not able to do that.

The bottle is also pretty heavy and needs a better base so that he can put it on a tray which rests on his legs/knees - a friend made us one out of wood.

I went to the hardware store and bought some clear tubing and added it to the existing straw - works too but now the tubing is slightly wider than the straw and too much liquid comes out. He would aspirate.

On my next trip to the hardware store I will try and find tubing that will fit inside the bottle straw - and hopefully not leak so that the tubing will get finer/thinner and the amount of liquid that goes into the mouth will be easier to regulate.

To sum it up for his kind of ALS progression in hands / arms and mouth it is probably not the right device.
 

affected

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Totally hearing you Regina - my Chris was bulbar onset.

So the lip seal, ability to suck and swallow were all compromised fast and his hands went quickly to boot. So not being able to hold and position a cup and then suck was huge.

I created him a device that he was able to use until he stopped taking anything by mouth, even though he could only just move one finger.

I used a microphone stand and we made a cup holder that had a line attached and he could tip the cup with that one finger looped into the line. He had full control, and could sip thickened coffee on his own.

I can understand the straw issue as just touching inside his mouth with a toothbrush would cause him to salivate wildly, gag, and then clamp his jaw shut.
 

jonico

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Hi Regina,

Your posts are both sad and very heart warming. It's wonderful to hear that even though your pALS would rather the end come sooner, everything else is great. I'm hopeful he will gravitate more toward prolonged laughter in the yard.

There was a discussion, with plenty of angst, about pros and cons of getting a feeding tube at our very first pALS group meeting at the ALS Center. One gentleman who was pretty far along typed on his device while the others spoke. When there was a lull in the conversation, with a big smile on his face he chimed in with "Don't fear the feeding tube". My wife wasn't close to needing one, but the phrase was indelibly imprinted on my mind.

My wife had aspiration pneumonia twice before getting the feeding tube...not a pleasant experience. The feeding tube has been a godsend. As a matter of fact, friends who see the way I eat now that my wife can't cook for me have recommended I get one.

We all get so much pleasure out of eating good food, and hate the idea of losing that pleasurable part of life. I've seen pALS fight the feeding tube primarily for that reason even after all the tastiest foods have been eliminated from their diet.

I am really hoping he will come around!
 

ReginaS

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You guys are great!!

PALS had to endure a few sessions when someone wanted to convince him of the feeding tube. One time he had changed his mind for about a week and then came back to no feeding tube.
I think he made up his mind though things can always change. His ALS is progressing on the faster side. He was not even diagnosed as bulbar onset. But it all came at the same time: hands and arms, right then left, feet and legs, same order, bulbar difficulties right away. Only breathing was fine and that's no longer the case either. Most of the time he is without trilogy though he is using it more.

The headrest which he got yesterday did not convince him either. We have reached the point where many things that help also are inconvenient in other ways. He is the sweetest person and he is not going to fight/struggle against this disease. Not sure if these are the right words. For him they probably are but I am respecting anybody's path with this disease no matter what kind of decisions they will make.

I am really fine with whatever he chooses. Really. In the later afternoons we often go outside now, he holds his face to the sun and I pull weeds. This time last year he bought the new house, 1 level and we were hoping that we would have 3-5 years. And maybe even more :). Now I am planting/moving a few plants so that I have a few later on that I planted knowing he watched me do it. :)

I will look into that sippy cup setup. We will try anything that might help.
 

jonico

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Beautiful note Regina. You both have a wonderful outlook on life. Thanks for sharing.
 

affected

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Regina this is a little video I did the first time he used the device I made.

As he progressed he couldn't lean forward and could only move one finger.

https://youtu.be/v8TaKS_GcV8
 
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