Keep your weight up

[Tomswife]

When we (Tom) had our first appointment with the ALS clinic at NY Presbyterian, the neurologist who met with Tom gave him important advice. The neurologist is renowned for his work in the ALS field.
He said...."don't lose weight, don't lose weight, don't lose weight". He said it three times, just like that. My husband Tom is overweight. But when you have ALS, they dont want you to lose any weight. The people who can keep their weight up do the best.
Don't lose weight.
Take care.

 

[lgelb]

To qualify that a little, the "sweet spot" for BMI in ALS is thought to be 30-35, not super-obese. Here's a BMI calculator.

And how you feel is really the best guide for what and how much you eat. It's not that you should eat for a number, but for the reality that ALS affects metabolism, but metabolism is still an individual thing.

So just like pre-ALS, not scarfing a box of cookies or quart of ice cream in one setting is just common sense to keep your pancreas from releasing too much insulin, as it would be for anyone.

 

[affected]

Yes the BMI is good to know, but even if the person had a higher BMI than that, with ALS, I wouldn't recommend losing weight, particularly not with any speed.
Thanks for the reminder Tomswife!

 

[wtlpc22]

Hello - I am sorry for your diagnosis.
1. Did you get a second opinion? yes
2 Did the person with ALS Serve in the military, or reserve more than 90 days?
3 What is his FVC-1 Score?
4 There is a small window of time to get a g-tube placement.
5 Get a walker with a seat to prevent falls.

The barium swallowing test - start eating softer foods. My best purchase was a single-serve blender. Ice cream, banana WHEY Protein. Anything he likes smoothies.

When you are healthy your body wants protein. People hAD a nighttime snack they eat food but are still hungry. They should have had a chicken cheese sandwich. The body will use fat first then protein.ALS the fight is to keep fat on.. This is to preserve protein for muscle.

When I was diagnosed at age 45 I was running 5ks. 6' 210.BMI 28% I ballooned to 250...BMI 35% Now 145 BMI 19%
IT IS LIKE THE MOVIE MARCH OF THE PENGUINS.

 

[affected]

G-Tube can be placed even with very low lung function as they are now nearly always placed via RIG and you can use your bipap during the procedure. There was a time they were nearly all placed endoscopically and so FVC played a big role.

 

[John445]

Hi: I was diagnosed several months ago, going to clinics, dealing with the shock, etc., etc. One thing that has changed recently is an overwhelming need to eat. I was a healthy eater before hand and a bit overweight (really just a bit), but now I am eating six times a day, regular meals and something for snacks. Initially my weight did a drop but how is holding with only a 7 pound drop over the last year. John