About keeping weight up

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BrianD

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PALS
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08/2009
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Colorado Springs
So I get loud and clear that keeping weight up is important. But how much "extra" weight are we talking about?

My neuro suggested that generally means trying to stay above your ideal weight, with a few pounds to spare. She didn't say a specific BMI number, but this would be something in the BMI range around 25.
Also was suggested that losing a little weight for me (my BMI just under 30) would make it easier since then wouldn't have that 20ish extra pounds to try and lug around later when things start getting more difficult.

But I don't recall a single post on here encouraging to ever lose any weight.... so definitely curious if anyone else has received similar guidance from their doc.

Personally, I'd be a little leery myself on trying to lose the weight and adding any stress to my routine. (I'm not a big fan of dieting of course!)

Brian
 
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Hey, Brian~ Our ALS doc stressed the idea of NOT losing weight to my PALS. Greg was still walking when we began seeing this doc, though he is now wheelchair bound and has a PEG. During this entire ordeal, he has been encouraged to keep his weight UP. (And like a good supporter I've been keeping mine up, too.)
 
Brian, a very good question. I have always been a skinny guy and between the time I first noticed symptoms in the summer of 2007 to when I finally got my peg in Feb 2009 I lost about 40 lbs (160 down to 120 and I am 5'11"). Part of that loss was from not being able to eat (bulbar onset) but part of it was something else because I have only been able to put back 20 pounds despite a high calorie, high fat, high protein diet. So I suspect that you will lose weight no matter what you do but as far as losing weight intentionally, I don't know. Obviously nobody has ever told me to! :smile::smile:
 
Barry, do you have any muscle loss due to atrophy? If so, that may explain why you are not able to put 20 pounds back.

Brian, I always only heard the advice about keeping the weight up. But of course, I understood this to mean within a healthy range, to avoid heading towards heart disease, diabetes etc. and associated complications.
 
Brian, EAT! ENJOY! :]
 
I agree - Eat and Enjoy!
 
i'm new to all this, so i don't know if i'm doing this right so here goes. my father in-law was diagnosed with als in april, he just got a peg tube last week. we are trying to crush his suppliments and put them through the tube, but its not working very well. is there a liquid that is better than others. any help would be great
 
Hey 521bfd! Welcome to the best heart place on the internet! Does "bfd" mean something tongue in cheek?! lolol I actually know where Travelers Rest is in South Carolina :] My husband is a native Charlestonian and was also a big time BASS fisherman on all those lakes. So about your question-some medications should not be crushed and then you have to get them in a liquid. Most can be crushed with a morter and pestle or between 2 spoons. Add that powder to warm water to dissolve it into a liquid-draw it up into a syringe and gently push it into the PEG and then flush with at least 60 cc of water to make certain that it isn't in the tube. I use lukewarm water. You don't say what supplements he is currently on so it is hard to know if they should be crushed. Does that help?
 
Danijela, I have never been a muscular guy so I don't know about muscle loss. The only atrophy that is noticeable is my right hand but I certainly have trouble lifting things or getting up from the ground if I sit down or crouch down. So maybe you are right about muscle loss.
 
Brian one thing I have learned with ALS is that for any piece of information, somewhere you can find someone seemingly qualified who says the opposite. My local neuro is pretty neutral on the weight issue, while at the ALS clinic the speech therapist and nutritionist really emphasize keeping weight up and not trying to lose.

I have heard many stories like the ones here where people lose a lot of weight as their ALS progresses. Loss of weight is one of the main indicators for getting a PEG (feeding tube). When I was first diagnosed I asked here what caused the weight loss. It seemed to be a combination of faster metabolism, loss of appetite, and difficulty eating due to weakened chewing muscles and poor swallowing.

I don't know to what extent staying overweight is helpful vs not becoming underweight. I do know from my earlier battles with my weight and dieting that when you try to lose weight, the body often consumes muscle before it consumes fat. You'd think it would be the other way around but often it is not. You have to really exercise vigorously to prevent the loss of muscle. Given the situation in ALS where the muscles aren't getting nerve impulses and we can't be very active, I would imagine this would be even worse. Losing weight seems likely to accelerate muscle loss. However that is just my own speculation and I don't know of studies that look at this specifically.

Going from a BMI of 30 down to 25 is really a large weight loss. It seems risky to me with ALS. If you are able to attend an ALS clinic, I'd suggest asking the team there for input and get some other perspectives.
 
Hal...

Yep... I wasn't going to do a thing until my first ALS clinic which is current early March.
Was trying to get a feel for if anyone else ever received this "losing" advice (from a qualified ALS medical professional... not the bozo that Capt. Al had recently at his VA visit)

And to me also seemed risky / stressful to the body.

Thanks for your input as always!

Brian
 
My docs have all said keep the weight up. I did lose about 20 odd pounds at the start. Didn't know why though.

AL.
 
Hi Brian,
I have never been told to either loose weight or put it on, probably due to my current situation.

When i started to have issues with walking etc, I had a BMI of app 38 (i suffer from "ducks disease, bum is too close to the ground:lol:)
so i made an effort to loose some weight over the next 24 months, which i did (app 20Kg)
This brought my BMI back to app 33, which i have maintained for the last 18 months, since before my final diagnosed. (I had a diagnosed of Parkinsons for app 12 months before MND)

Now i dont know if this loss is a combination of muscle loss and fat loss, I guess so though.

One main advantage I have though is i am still eating, a bit slower than 3 years ago, but still eating, "normal" meals.

So, why I am still over weight (according to the BMI charts etc), my current aim is to maintain my current weight.

I hope this is not too confusing for you Brian

cheers
Peter
 
Brian,

Approximately 50% of PALS have increased metabolism, so for some, its not as easy to maintain or keep weight on.
 
Brian, my MIL was diagnosed with Bulbar onset. She was told to eat whatever she wanted as long as she could. It only took a short while for her to not beable to eat. She went from 175 to her current weight of 121. Her doctors are OK with that. They say as long as she don't lose any more.
 
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