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mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi all, as some of you know my mom has bulbar als, diagnosed 18months ago now. She had refused peg and trach, and her speech isnt too bad. We have had problems with choking and seemed to have it, to an extent under control. She is on a soft food diet etc. But something has changed. Yesterday afternoon she complained that something was stuck in her throat, she thought a mushroom! Anyway, as her cough is too weak we couldnt get it up so concentrated on getting it down, coke and fizzy drinks through a straw, bread etc, all to try push it down. Rang the doc he told me not to worry if its not causing her breathing trouble, and it may be only small. This morning however it was still there, and she choked badly on her porridge, (which never happens) It caused her to be out of breath for a much longer timescale than normal, it was pretty scary.
I rang the nurse, told her we thought we had got it out (as there was food in the bipap this morning, a piece of cake!) She thought maybe that the throat may have been swollen after it being lodged there, she also said that it may just be the disease, and her swallow is just getting worse.

My question is, if this is the case then what happens next? She is too far gone for peg, and if her swallow is closing up, or not allowing food down, how does she eat?
Also, does anyone have any self help ideas of getting food particles down that seem to lodge in the throat?
Any thoughts welcome....
 
mndireland,
I guess only her doctors would know if it is too late for a peg. My mom diagnosed july 08 with bulbar onset and with symptoms for a year before, she just had her peg put in November 08, she can only eat popsicles and can barely get down a little bit of thin cream soup with no chunks. My mom uses a suction machine to help her when things are caught in the back of her throat or to remove the food from other areas of her mouth that she can no longer do with her tongue but if something is stuck that far back I don't know if suction will work. Did you try the heimlich? My mom also said a few months ago that she had a feeling that something was stuck in her throat and that was when she could still eat but choked a lot.

Tfisher
 
So sorry about your mom's situation. That must have been scary indeed.

There is a cough assist machine that will help her force out enough air to clear her throat. That might be a solution.

My only other thought is for her to eat very small amounts as frequently as possible. Avoid all solids completely. When I eat yogurt or pudding, it tends to keep sliding up into my mouth again, and will take several swallows to make it stay down, but eventually it will stay down. And one thing I don't have trouble eating is ice cream. You can find some amazingly high-calorie ice cream (like 400 calories a 1/2 cup!). It's worth a try.

Good luck. I hope you find a solution quickly.
 
Like Beth said, the thickness/texture of yogurt or pudding is good. I've had success with getting something solid that is stuck at the top to go down by drinking some yogurt (I buy the whole milk version that comes in a bottle) It seems like when I try something thin, such as water or diet coke, with no substance to the thickness of it, that it does very little to move what is stuck. I think that the consistency helps make the esophagus contract to help get it moving, (does that even make sense?) I don't know what effect various thickness have on the larynx, but getting some action under what is the problem seems to work quicker than washing it down from the top., and the thicker liquids are what give the esophagus something to contract with, whereas thin stuff just kind of splashes around.
 
Hi;

I eat pretty much everything solid now with yogurt. It helps to lubricate the throat and makes food go down if there is something stuck. It has happened to me a lot where I will have a piece of something lodged in my throat and the yogurt works every time. If you have swallowing issues it's important to stay away from thin liquids because of the really high risk of aspiration leading to pneumonia.

Barry
 
Barry....

I thought you washed your crumpets down with beer! 8)

.... seriously, I agree, yogurt seems to do the trick ~ this is for solid food that is lodged in the larynx, probably actually above the trachea,with the person still able breathe around it. Anything that blocks the passage of air would benefit from the Heimlich maneuver....
 
Thanks Barry and Rose, The food doesnt seem to be causing her to stop breathing but is uncomfortable for hours sometimes as she can feel it. Also when she tries to eat something on top of it can cause breathing issues. I sometimes give her yogurts when she has to take anti biotics etc and they are too large i put the powder in the yogurt, so ill try the yogurt as desserts maybe these days!
 
mndireland,

Perhaps you can get her to eat some yogurt along with the rest of her meal, a few bites of this, then a little yogurt....

Your country has such wonderful yogurt, when I used to go to Dublin regularly, I would bring a canvas bag with me for the express purpose of bringing some yogurts, cheeses, and cream for coffee that could be bought there, back to the States with me. We used to stay at the Jury's Doyle Hotel, ( there is a pen right here on my desk from there). I heard it is no longer a hotel, but turned into condominiums now....
 
Rose ... you just reminded me that the most delicious yogurt I've ever eaten was in Wales! Maybe in the UK and Ireland they don't dump all the hormones and chemicals in animal feed that we do in the US, but if I could have figured out how to bring some back, I would have.

I hope yogurt works for your mom, mndIreland. I use lemon flavor, because a lot of the yogurt here is filled with lumps and chunks of fruit, which makes it twice as hard to swallow. Vanilla should be OK too. Good luck! Blessings to you and your mom.
 
You know, I haven't found any beer flavoured yogurt yet. Maybe I'll experiment with making my own...:razz:
 
Beth...

Re: the yogurt, If there is a whole foods grocery near enough to you, ask your niece (because its heavy) to look for Traderspoint Creamery Yogurt there. It comes in 1 qt glass bottles, is organic and made from whole milk. I buy the banana-mango flavor mostly, I think different regions may have other choices for what is offered, but the store closest to me only carries the b-m, raspberry (not fond of raspberry) and vanilla, which is also quite good IMO. It is not imported, but is European/UK style yogurt.
 
Barry

every so often I'd get someone on the plane who ordered tomato juice with their beer, I think its only about a shot of the juice that is added to a glass of beer, so it might not make it thick enough to stop the aspiration, it never has looked at all appetizing to me, but people that like it, think its great! I think they call it a Red Rooster, and if one uses the bloody mary mix instead of tomato, its called a Ruddy Mary..... don't know about that combo with your afternoon crumpets, but not too sure about beer and crumpets anyhow :wink:
 
Great tip, Rose. I'll check it out. Sounds delish. Also, Barry, found the Resource 2.0 and am ordering it. 500 calories per 8 oz. Can't beat that!

Thanks ...
 
Well that turned into an interesting thread!
Rose, the Jurys hotels are still around but there are quite a few so depends on the address of that one? Not sure!

We had a speech therapist out, and she said we are lucky mum hasnt choked to death (dont know if shes exagerating slightly) but we have to be more careful. She also gave us a tip that I thought I should share with you all. After taking a bite to eat or especially after takeing a sip of a drink, while its still in the mouth, hold your face firmly down to your chin while swallowing. This helps the liquid go into the right tube and not into the airway. We've been doing it since yesterday and mum says it is much easier! This will also lessen the chance of pneumonia as fluids will not go directly onto the lungs.

My new problem is that my mums sore on her nose, caused by the bi pap, has now cut right down to the bone, through all the plasters and padding ive been putting on. NOw its developed into an ulser, with another one starting by the look of it. She is on anti biotics now, but the ulser is really sore and painful, and she is in agony everytime I put the mask on, its awful! I know probably not going to get any helpful tips here but thought id have a moan about it anyway!
 
I'm glad the speech therapist was able to help with this. I feel badly that no one on here had mentioned the chin tucking maneuver to you before. That's the problem in just assuming that everyone has the same base of information given to them.

I don't know what to suggest for the mask, you'll remember what I went through trying to get a mask that fit correctly, I've heard some have put a little K-Y Jelly on the surface of the mask, which allows a better seal, perhaps something like this could allow here to wear the mask looser?

She shouldn't keep wearing something that is going to cause continued problems, Is it time where she could get a new one? If so, there are online supply stores, the one I used had a measurement calculator for facial dimensions. It was easy to take the measurements and after I inputted them, it gave suggestions of masks that would fit me. (there's a picture of me wearing it in the album on my profile page)

Mine (the one that fits) when I first got it, I had redness on the bridge of my nose for the first few nights and a "dent" but I changed the tension on the straps put more on the lower ones, less on the top ones, and it seems to have fixed it. Last night something wasn't quite right though, and I had air blowing into the corner of my left eye all night, so my one eye is not so happy today.

About the Jury's, I don't remember the address, it was downtown, right at where several roads converged in a triangle kind of crossover pattern... there was a pizza place near, and lots of shopping along the sidewalks, also a Thai restaurant... (I know that really narrows it down, doesn't it LOL), but it wasn't over by Ha'penny bridge, we'd walk there, as we walked about everywhere, but it was not close at all. We used to love staying there, For a while they had a cabaret in the hotel most evenings, so I've been to a traditional Irish cabaret :)

Anyway, your mum is lucky to have you! I hope you can get the mask problem sorted out.
 
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