Don’t lose weight has been the advice.

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dldugan

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The ALS Clinic and some places on this forum indicates not to lose weight.

One of the first symptoms I noticed was that I was losing a little weight, but was gaining around the middle. It seemed to me that this was the result of atrophy and I conveyed those thoughts to my first neurologist and to my PCP for nearly 2 years. It was like they weren’t listening. In hindsight it is probably a good thing that I wasn’t diagnosed for 2 years. For that time I was was not aware I was living with a terminal illness and life was moving happily forward.

Now after being diagnosed I am eating less and still gaining around the waist. But atrophy is keeping my weight about the same. As my strength is declining I am burning less calories.

I am of the opinion that it would be better to ignore the advice and lose some weight around the waist. The problem is, how much should I lose?
 

Nikki J

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No ! Don’t! Unless you are significantly obese. The Buddha belly is part of ALS. It doesn’t go away unless you are emaciated

A bmi closest to 31 was correlated with longer survival in one study. I wouldn’t necessarily say gain weight on purpose ( though I did and it has worked for me)
 

dldugan

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Seems illogical that one would want to have more belly to move around and lift as leg, arm, and trunk muscles atrophy.
 

Nikki J

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No one wants the belly. But if you try to lose weight you will lose muscle faster. And the time will come when you start having trouble keeping weight on

My sister had a belly at 105 lbs. she didn’t at 80 but she was dangerously emaciated
 

GregK

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my ginormous buddha belly isn't fat, it's total lack of muscle tone.

Losing it would NOT be losing weight from fat, it would be weight from further muscle loss and organs that I still find useful.
 

dldugan

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Since my limbs and gluts are smaller and my weight is the same, my stomach area has to be heavier.
 

Lkaibel

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It took my husband almost two years to lose walking, and one way we did that was keep weight on for sure.
 

KarenNWendyn

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I am also gaining weight with minimal exercise, so it has to be fat as I’m sure not gaining muscle. My doctor told me to think of it as survival, so that’s what I’m trying to do. It’s a totally different concept than what we’re all hard-wired to think.

Not liking the Buddha belly either. :(
 

blitzc

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I've never had a belly either until I started gaining the weight back which had been lost early at diagnosis. Now the same weight but skinny legs, back, shoulders, and arms.

With my belly and chest increasing, I also wonder about menopause approaching.

Both PCP and neurologist have told me to embrace it!

Cathy
 

Nikki J

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At the MNDA there was research that showed losing 5 percent of body weight correlates with significant decrease in longevity
 

wishmobbing

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My boyfriend was always skinny. He ate whatever fatty foods he liked best and never had more than a gin and tonic belly one summer long. He lost muscle and with it weight. Never built up a cushion. He hated the high caloric drinks. As is was all about quality of life he kept eating only what and when he wanted. He lost weight dramatically near the end and had a fast progression overall, just about 20 month from first noticable symptoms to the end.
Nothing to jump to conclusions in this one instance but it fits in the picture of longer survival with higher BMI. If the body has no provisions for exhausting times it's burning through muscle quickly.
 

Kristina1

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Im similar to how Nikki said about her sister. I only weigh 105, and have to actively supplement to even maintain that weight. But I have a belly "pouch". It's not fat, just significant loss of muscle tone. Normally your abs kind of hold everything in around your middle. But when those muscles are gone you get this little belly.
 

Eldavia

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My husband with ALS was a fitness fanatic.. fought his whole life to be fit and slim.. he too was told to keep the weight up.. eat what ever he wanted. Ice cream at every meal, what ever his heart desired, not in his nature as he was a very disciplined eater. it was really hard for him to see the belly begin as he lost weight anyway... it was mostly muscle mass for him to lose... He ate high protein/cals to try to keep his weight on. I had not been on this site much and had not heard the term Budda Belly but it makes sense in hindsight. Some of it was posture too as he used what ever muscles he could to keep walking and he often leaned backwards a bit to keep himself upright.. You need to keep the weight on to help fight this disease and other diseases too. No Christmas goody guilt this year.
 

chally

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would love to see a time lapse video of my abs going south

Sil calls it a “ dicky do”. It’s when your belly sticks out farther than your dicky do!

Good enough for Budda, good enough for me
 
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