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amysgarden

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CALS
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US
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WA
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Oak Harbor
My husband was recently diagnosed with ALS. He was built like a somewhat overweight linebacker- 6'5 and 360ish lbs. Over the last 18months I noticed that he was losing muscle mass and gaining a bigger belly. He was eating pretty poorly (pizza, junk food) as I was working a lot. But he didn't gain any weight with this horrible diet. Then, beginning this year his weight dropped. A few pounds from trying for 6 weeks between appointments to see if he just ate better would he feel better- No, no improvement. Now he continues to lose weight, about 2 lbs a week. Now at 340lbs.

He is still overweight, and losing weight will help him stand easier and it will help me take care of him more easily. But I am not sure any of this weight loss is good, I am convinced he is just losing muscle.

With the diagnosis, he is back to junk food- who can blame him? He loves it and soon enough he may not be able to eat so why take that away?

Is it reasonable (or safe) to try and lose some body fat with ALS? He hates eating healthy, hates vegetables. I am loathe to force anything with someone with such a short life expectancy.

Amy
 
I understand everything you are saying. In general we are advised to eat high calorie high carb high quality food and told not to lose weight. Your husband is a big guy. It is probably going to be hard/ impossible for you to take care of him without using lifts anyway unless you are superwoman. There is some research that correlates a bmi close to 31 with slower progression and I have seen the range of 30-35 mentioned. Ask his doctor. What I would say is let him eat the things he loves. Maybe try to get him to eat some nonjunk too. Aside from the swallowing problems ahead he may find his tastes change. Mine have
 
I am uncomfortable with my weight. Before I knew what was happening to me I was Triathloning, when the disease presented in my breathing I had to stop alll training and gained nearly 40 lbs over the year and a half it took to diagnose me. I asked my doc about weight loss and they said 2-4 lbs a month would be ok. Just to make sure i was in control of the loss and that it was not just "falling off".

So my thoughts would be to be comfortable and enjoy your days.
 
>losing weight will help him stand easier and it will help me take care of him more easily

just don't fall!
 
Amysgarden that is my pals case. He is losing muscle and gainig a belly. I am not sure tho that his belly is really getting bigger. I think with the loss of muscle around his body it just appears to be bigger.
 
My mother in law (yes her again) is always on at me to 'get that weight off'.
Ok...so my husband doesn't even know this...I'm 6ft and 220lbs (thanks mr Google for translating that...we work in kg), so I'm not little, but neither do I think I'm disgusting.
I too, Pete, would like to lose a bit. When I fell the other day I was very concerned about Wayne trying to help me up so the idea of losing weight is not really for me, but to help those around me...help me.
I never think of people as fat, skinny etc, more of how they are inside. I can tell Pete you are just gorgeous. I bet your beloved thinks you are too. If you would be more comfortable with a little less pudding, please do follow your doctors advice and go slow.
God bless, Janelle x
 
I'm sort of in the same boat, 6' 1" 260 lbs. I keep thinking I would feel better if I lost say 50lbs. Id still be a little over weight but I can't see how carrying less weight would hurt. Every time I bring it up to my doctors the only answer is DO NOT LOOSE WEIGHT. So I guess all we can do is enjoy the unrestricted diet.
Vincent
 
>Every time I bring it up to my doctors the only answer is DO NOT LOOSE WEIGHT

Ditto that!
 
Vincent, YAY for getting rid if the word 'diet' from our vocabulary!
BTW...you're gorgeous too!:)
God bless, Janelle x
 
My husband's doc tells him a BMI of 30-35 is the "sweet spot" and wants him staying in that range. He's currently at 35 point something and, like Pete's doc, she told him if he wants to lose any more, it needs to be done extremely slowly, no more than 1/2 lb./week, and just till he gets to the 30-35 range.

He used to do a lot of weightlifting and had a huge, strong upper body, but like Gooseberry, I've noticed a general shift in his body shape/proportion. One change we've recently noticed is that to keep the weight loss that slow, he's had to add a big strawberry shake each day. That's one change he doesn't mind. :)
 
I started this journey being overweight. I was 6' 3" and weighed just under 240 lbs with a BMI of around 30.

Weight loss was an early symptom for me. Over a 2.5 year period I lost over 70 pounds. Even before my diagnosis my doctors encouraged me to stop loosing weight. Easier said than done!

I have lost a lot of muscle. I spend a lot of time eating and generally eat pretty healthy food. The doctors have told me to eat anything I can tolerate. I sure enjoy the ice cream!

Since I stopped working I have been able to maintain my weight. I think all the effort I used to put into working now goes into eating.

Steve
 
>Since I stopped working I have been able to maintain my weight. I think all the effort I used to put into working now goes into eating.

Steve I think since I had to give up work (July last year) I'm pretty sure all my effort goes into shopping!

God bless, Janelle x
 
Dayum......Amy you just described me. Your husband is my body double, and has the same eating dynamics!
I also hate veggies and fruits even more. I eat a bunch of sweets and junk food. I used to walk around at 365lbs, am currently hovering around 325.
I weighed 265 when I graduated from high school, starting lifting weights and eating.
I know it would be a lot better for me to loose some weight......but have no discipline as far as eating goes, and I enjoy eating bacon cheese burgers and cake & icecream.
My clinic doc is encouraging me to eat what I want, and not loose weight, but I think we both know it would be a lot easier for me at a lighter weight.
 
But Mark, the plus side is you'll probably live longer with ALS with that extra weight! Enjoy your junk food ( and throw in a few of those fruits and veggies!). Sure wish my hubby had been able to maintain a healthy ( or extra pounds!) weight. Know he would have remained here longer. Aushwitz look/ALS are not a good combo!
 
Stay big, Mark! ;^)

There's more of ya to love!
 
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