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taliaric

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I have lost 25 pounds and still losing since my symptoms started in the spring and I recently read a research study that in ALS this can be caused by metabolic problems. Is this also true for PLS?

I have dysphagia, but I am getting enough calories and I don't have enough weakness to think muscle loss. So, I am wondering why I continue to eat and lose weight and what I can do to try to stay at a normal weight. I had some pounds to lose to start with, but now I am a normal weight and would like to stay there.

Thanks!
 
You might try drinking Boost or Ensure.
 
Boost plus has more calories than plain Boost. Good that you are trying to keep from losing!
 
Breathing problems burn calories at a terrific rate. Even early breathing problems such as shortness of breath with exertion are a possible problem.
 
I drink regular Boost, so I will give the Boost plus a try.

That is interesting about the breathing. I hadn't thought of that connection.

Thanks everyone.

Jen
 
The only thing I can add here is that I lost about 15-20 lbs from my diagnosed date, but I started with lower limb onset and the weight didn't happen instantly. It is now both legs, minor hand/arms, some choking if I don't take my time, and speech is really starting to be a problem. Other than that I can eat everything slowly if it's cut up nice and small, it just takes me twice as long as my wife (she is cleaned up by the time I'm done). I figured my weight loss was from the energy it takes to move around during the day and the calories I burn? I started about six years ago some where around 170 lbs, and now I average between 147-150 lbs every three months when I go to the clinic. Ohh...and I do drink Boost, but not a lot, I only keep an open bottle for taking pills (or sometimes applesauce).

I just read about the breathing...They did prescribe a BiPAP for me and I really, really tried to use and accept it for two months. But I did give up on it...it was personal decision that I was not ready to commit and give in to needing one (stubborn).
 
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I have lost ~18 pounds since my diagnosis in December of 2012.
I am scheduled for a Nutritional consult next week, but the VA SI clinic suggested that if I do not stop losing weight I should strongly consider the feeding tube...
 
Greg,

They mentioned a feeding tube to me in relation to my dysphagia at my last appointment. I am curious if they suggested a feeding tube to you with or without dysphagia issues. I am actually able to eat even with the dysphagia, so I wasn't thinking that might still be on the table, but your post made me wonder.

P.S. My husband went to Colorado College!

Thanks,

Jen
 
My feeding tube suggestion is solely to address weight loss.
I have limb onset so speech/swallowing issues are still in the future (please).

Re: CC, cool! :)
 
Breathing problems burn calories at a terrific rate. Even early breathing problems such as shortness of breath with exertion are a possible problem.

In addition to that, the process of swallowing interferes with breathing. So if you have breathing issues you'll burn even more calories. You can not swallow and breath at the same time.
 
My husband presented with breathing problems and a 25lb weight loss. He has been maintaining by eating full calorie food even though he is also diabetic. He has a high calorie snack at night or sometimes two. Greek yogurt with fruit, ice cream like a klondike bar, things like that. He did get a peg. His breathing was declining so quickly they had to put one in before he was outside the safe breathing window for surgery.
 
Greek yogurt has lots of protean without empty calories ......with honey it's very good
 
GREGK Get jevity from VA....lots of calories...little sugar...use jevity 1.5 with feeding tube...I do 3 cans daily but mix in milk and chocolate syrup as I am not on feeding tube.....it taste terrible if you drink it straight
 
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