Old 06-12-2016, 10:01 PM #1 (permalink)
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Default Food options

Howdy all,

I was diagnosed about 6 months ago, but have been having speech troubles since January 2015. It's a slow progressing form, and though I seem to have mostly bulbar issues, my doc says it's not bulbar onset. (I have a touch of weakness in my hands, but otherwise am 'fine'.)

Anyway, I'm having more and more trouble eating. I can swallow fine. I'm careful about it, but have only choked on some water once when someone made me laugh at just the wrong moment. The challenge is eating is soooo slow. I had a hamburger (a big one) at the baseball game the other night. Took me about 6 innings to eat it. Food gets stuck on the roof of my mouth and it takes forever to get it off, etc. Standard stuff, I'm assuming. I'm trying to maintain my weight, but it's a real battle because I don't think I'm getting enough calories. I drink 2-3 Ensure Plus shakes daily, so that helps. I cough all the time when I'm eating, so that makes it even more fun. Bagels are a pain. I can deal with burgers and bratwursts and such if I take it very slow. Cookies are ok! I'm just at my wits end about what to do. I had an omelette today and it still took 45 minutes to eat. I tell people that I don't get full, I get bored.

What do people eat or take to maintain weight and get enough caloric intake?

Thanks. Sorry for a bit of a ramble!

j
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Old 06-12-2016, 10:11 PM #2 (permalink)
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Default Re: Food options

Steve has the same struggles with food. He does start out his day with a ton of calories and the late morning is when he feels like eating the most. He has three eggs fried in coconut oil, ground sausage and a shake made with high calorie insure, icecream, coconut oil and whatever else he wants in there. He gets over a 1,000 calories. The rest of the day he has a harder time eating.

Smoothies and shakes seem to be the easiest for him and you can stick as much high calorie foods in there as you can think of. We use chocolate syrup, peanut butter and other things but try to mix it up so he isn't having the same thing every morning. He dietician said it really doesn't matter what you eat and enjoy the fact that you can eat whatever you want or can eat.
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Old 06-13-2016, 01:18 AM #3 (permalink)
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Default Re: Food options

I can't see how someone who presents with bulbar issues is not bulbar onset, but regardless, you have bulbar issues to work out.

The big problem is the mix of textures in things like a hamburger, and as you said the problem is moving food around your mouth while you eat is the problem as it gets stuck to the roof of your mouth.

Now this was a little funny in a weird kind of way. When Chris had his first barium swallow they gave him a small cracker biscuit with a lump of barium paste on top - kind of like a cracker and dip. He put it in his mouth and whoops it stuck to the roof of his mouth and he had a really hard time getting it off. Made great video of just what his tongue issues were. But I couldn't believe how angry he was as we left. He kept saying to me - what kind of idiot gives someone a dry cracker with that barium crap on top???

I just could not explain to him that the purpose was to see how he coped with the two different textures together, and that he also was given a barium drink the texture of water, and some soft fruits. They were watching how he handled the different textures.

He was just convinced they had deliberately tried to embarrass him by giving him something no one could eat...

So you may have to rethink the kinds of food you eat most of the time.
Softer foods that you can take in by fork, rather than biting into a hamburger. I don't mean mush, but not so many changes in texture.
Then make them as high calorie as you can - cook with coconut oil, add gravies with cream (or coconut cream), lots of butter or anything that helps the texture and ups the calories.

You could also make smoothies with your ensure and add cream, ice cream, chocolate, peanut butter, caramel anything else high calorie, doesn't matter if it's high fat or high sugar.

Hope that helps.
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Old 06-13-2016, 05:05 AM #4 (permalink)
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Default Re: Food options

I am sorry you are dealing with this and you have received good advice

I am having a hard time reconciling the statements I swallow fine and I cough all the time while eating. The coughing makes me think there is a swallow issue and if there is, aside from the critical weight issues, there is a risk of aspiration and pneumonia.

Have you reported this to your doctor? Is a feeding tube in your plans? If it is, you might consider sooner than later. You can still eat what you want/ can but can use it for meds and to supplement food and water if you are tired and need more calories or fluid
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Old 06-13-2016, 05:18 AM #5 (permalink)
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Default Re: Food options

Good point Nikki and the reporting of food getting stuck to the roof of the mouth struck me - this is a sure sign the tongue is atrophying as the tongue is used constantly when chewing to move the food around the mouth to create the bolus.

This is a second part of what makes swallowing so difficult and dangerous. Often the focus is on the throat and how the swallow reflex is working. But the loss of control of food inside the mouth means that a good food bolus is not formed and as a result often swallowing starts a little early as food just migrates without permission to the back of the tongue. The food being swallowed is also not a nice round ball of chewed up food, but bits of half chewed food.

This is where modifying the texture of foods and using smoothies with heaps of calories can really help you keep eating by mouth safely a lot longer.

If you are going to have a peg, I recommend you get things started now. Have it done while you are still fairly strong, have some weight on you, and before your breathing declines a lot. You can still eat by mouth. A good strategy is to just eat half a meal, since it takes so long, and have the other half pureed and put down the peg. You get to enjoy eating, but get a full meal of calories in without totally wearing yourself out.
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Old 06-13-2016, 10:51 AM #6 (permalink)
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Default Re: Food options

Thanks all.

The coughing is odd as it often happens when as I put food in my mouth, not while I'm swallowing. Maybe it's saliva starting to run down my throat, or part of the overactive gag reflex. I don't know. I've discussed it with my doctor and he didn't seem alarmed by it. We haven't discussed a peg yet, but I'll probably bring it up at my next appointment at the end of July.

The bulbar onset question is one I had when diagnosed. However, I have full body fasciculations and have had them for almost 3 1/2 years. I just never thought anything of them until the speech issue arose. That's essentially why my doctor doesn't think it's bulbar onset.

What is this barium swallow test?
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Old 06-13-2016, 03:04 PM #7 (permalink)
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Default Re: Food options

I'm wondering if your doctor knows much about ALS?

The twitching on it's own for years means nothing if you don't have clinic weakness and atrophy happening.

The barium swallow is a test where you ingest different substances while they use video xray to observe how all the internal structures in your mouth and throat work. I'm very surprised your speech pathologist or doctor haven't ordered one for you.

I'm also wondering why your doctor hasn't started discussing the peg with you. Do you attend a clinic, or are you planning to?
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Old 06-13-2016, 11:11 PM #8 (permalink)
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Default Re: Food options

I have an ALS specialist at Mt. Sinai in NYC, so I trust he knows what he's doing. It's really only in the last month that eating has become much more of a chore. I'll ask him about the barium swallow when I see him in July. Again, no peg discussions because I've been relatively maintaining weight (within 5 or so lbs.).

I should also add that my breathing is fine. I scored 98% on my last breath test. I don't know if that makes a difference regarding eating or not.
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Old 06-23-2016, 06:37 PM #9 (permalink)
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Default Re: Food options

I had been maintaining my weight and eating well but one of the first things my dr recommended was 2 prepare for a tube. I got mine 6 month ago and have still not used it. Get it while you're strong ,I cannot stress that enough
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Old 06-24-2016, 08:08 AM #10 (permalink)
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Default Re: Food options

I also have chewing problems, but swallowing is pretty good. My chewing problem is caused by the weakness on the left side of my tongue. -- the tongue can't move the food around while I chew. My main food sources are mashed potatoes (heavy cream and lots of butter), cream of wheat, pudding, and Progresso soups I put in the blender to make them drinkable. Most importantly, however, is the fact that I drink 4 Boost Very High Calorie drinks per day. This Boost has 560 calories in 8 oz. I can only find it on Amazon -- not in my drug stores. This Boost helps me maintain my weight and even gain some.
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