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JamieL

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Hi all-

I have been on the forums since February and just in passing read something Barbie mentioned about Benecal, or Benecalorie. I just felt this was important enough to make it's own, current, topic "just in case" is helpful for anyone.

My mom has bulbar onset ALS and so swallowing/speaking are her main issues. She is very opposed to getting a PEG, at least for now. Extreme weight loss was her main symptom that people were noticing. She has ZERO appetite and chokes easily so it's kind of an ordeal to eat so I think she just avoids it. :( My dad has been making these shakes for her. He's improved his formula over the months and is pretty obsessive about it! We got him them an awesome blender, "the ninja," so he makes up a batch in the morning and brings her small glasses throughout the day. Our goal has been as much calories and protein as we can get in it so it's got greek yogurt, peanut butter, ice cream, etc. in it. Weight-wise she has been holding her own. She went to the ALS clinic (first "true" clinic visit) on May 10. She is about 5'6 and was 110 pounds. :( Not good.

So no change in weight- no loss, so we were sort of happy. Then I ordered the Benecalorie online after Barbie mentioned it. It is a 1.5oz little container of flavorless fluid and has 350 calories and 7 grams of protein! For someone who is viewing her shakes as an ordeal, volume MATTERS. So to get that much bang for your buck is huge. My dad has been adding one to her glass every other serving (so 2 per day). She started this on May 22. I talked to her last night and she sounded SO much better. Laughing, energetic (almost), and said she felt so much better. I asked why she thought that was and she giggled and said "well I've gained 8 pounds since taking that stuff you ordered for me." :eek: EIGHT pounds for a 72 year old PALS in less than a month?!

Soooo I'm pleased. I realize this isn't a cure, blah blah, but this is about "tips, tricks and gadgets" right? If you or your PALS needs to gain weight and is still able to eat, or just want to supplement/maintain, I wanted to mention this product.

THANK YOU BARBIE!
 

Tokahfang

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I will second the greatness of Benecal, it is a lifesaver. And you don't even have to get fancy, a little milk will hide the taste well enough.
 

pearshoot

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it takes a lot of calories to even maintain. select your supplement carefully, read the ingrediants carefully, avoid sugar, sugar, sugar water, and the frequent word silica (its sand, they make glass out of it), high in vitamin and mineral %. not familiar with benecalorie but it meets this go for it
 

JamieL

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We already have to be careful because she had 3/4 of her pancreas removed in November. Obviously unrelated to ALS, just more fun and games. :-/ Anyway, it is hard to create a diet for someone who needs to gain weight when the very heart of a "diabetic diet" is one that is "healthy." So when the ALS doc said (jokingly... sort of) to let her eat cheesecake every night if she wants it, we were like yeah... not so much. Plus she is Bulbar onset so it's even harder. Her dietitian (for the pancreas/diabetic issues) said Benecalorie was fine.
 

lgelb

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My husband is diabetic as well, Jamie, and I know some of the other PALS here are. We loosened the diet considerably after the ALS diagnosed 4y ago but kept his meds the same. He has no mobility, so obviously his activity has declined. His A1c has not been affected as yet, which could be altered metabolism (not as yet fully understood in ALS). Obviously, your mom is in a different category, but don't count the [low sugar] cheesecake out as long as you monitor. There is a growing body of literature relative to the role of various fats in neural function. And probably few PALS are going to die of MIs.
 

JamieL

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Thanks for the info. That is very helpful!

Her surgery was in November and she's had her sugars tested several times. Always normal. It's so ironic and strange to take her to EVERY OTHER APPOINTMENT (cardiologist, GI, surgical follow-up, etc.) and here things like "perfect!" and "looks good!" and "I can't believe how pristine your heart is... not just for a 72 year old woman, but just in general!" Yeah, well thanks. Except for this minor little ALS thing, she should be turning cartwheels I guess. :-/
 
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