Food not appealing

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Zephyr

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Hi everyone, my husband has had bulbar onset since June 2020. He is 1 week from a g tube, and all of a sudden he doesn't like the blended food I have been feeding him for months.

I switch things up, but I am noticing he is leaving half, and doesn't look like he is enjoying. He says things just don't taste good right now. I freak out over his calories being too low. Is this normal?
 

affected

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bulbar symptoms can affect perception of taste indeed

Can you try to get more calories into the meals by adding cream (dairy or coconut), nut pastes, coconut oil, chocolate? Obviously depending on what is in the blended food already will influence what calorie boosting you might add.
 

Zephyr

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I have been making heavy soups with butter, whole milk, some cream. They are piling the weight on me.

I asked him if he feels sick, he said no, food just doesn't taste good. (Except Ice cream) It seems he only wants fruit smoothies and ice cream.

I am glad he's finally getting a tube. I go secretly sob in the garage, I feel like I'm doing something wrong. He used to love eating, it breaks my heart.
 

rmt

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I'm so sorry. I used to go sob in the bedroom as my PALS tried to eat (and continually choked). You are doing the best you can. Give yourself some grace. I'm sending hugs your way.
 

affected

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Oh I felt terribly guilt over food with my bulbar onset husband, it's just so cruel.
My Chris owned his own cafe, so his life revolved around food, talking and laughing - all taken straight up.

See if you can add some nut butters with the icecream and smoothies and let him enjoy what he finds goes down the best. It isn't your fault in any way, this disease just takes and takes. It is not anything you are doing or not doing, no matter how you can find yourself thinking this at times.
 

ReginaS

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My PALS often remarked that food did not taste the same any longer and had lost its taste. He missed the taste of a good cup of coffee quite a bit.
 

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@ReginaS {{{{{{{{{{{hugs}}}}}}}}}} so good to see you 💚
 

ReginaS

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Thank you Tillie! You sent me such a nice greeting - it warms my heart.

Back to the thread. My PALS also thought that the composition of his saliva had changed. There was also lots of white stuff on his tongue that I cleaned off every night/morning. Eventually he took medication for thrush - just to try - but we did not think it helped. The whole chemistry in his mouth had changed.... I wondered if it had something to do with the tongue getting paralyzed but that was probably only part of the story.

I think it's real when a PALS says that their taste has changed.
 

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Definitely real that their taste changes, as well as heat/cold tolerance.
My Chris was a chef and owned his own cafe. He had an 'iron mouth' we used to say as he could taste something out of a boiling pot, and be holding 3 conversations while doing so!

Not only did he find he could not tolerate spicy foods as his swallowing progressed, but he couldn't tolerate hot food or drinks.
Since bulbar includes the actual tongue atrophying I often wonder that since that is where the taste buds are, of course changes in the tongue and salivary glands and all the mouth structures must impact on it all.
 

Firefighter58

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As I have said in other posts, try buttermilk with a bit of salt, it doesn't appeal to everyone but you don't know until you try it. I have it every day.
 

Dot Nichols

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My husband really didn't want the tube surgery. We were doing fine with blended foods, but the swallow study convinced him and just like you said, he lost his desire to eat anything, saying it didn't taste good. When he smells food cooking, he wants to try it, but just won't. I think the brain is amazing and must change those cravings when it needs to.

The tube feeding is easy. We started, using the syringes, but found them extremely difficult to clean. Now we gravity feed. I would love to know how others are doing with bothersome acid reflux. Is that normal, or do we need to try a different food?
 
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