A big, fat problem?

[Jeff Long]

Okay, dumb question #483... recent diagnosis has me in scramble mode to do all I can to "get affairs in order" for my family before I am unable. Red tape and fill-out-this-form Hell aside, all is going pretty well. God bless the VA rep who is assisting us, too!
At a local ALS support group meeting my bride was told that I should NOT try to lose weight ahead of what's coming. A few decades ago she married an agile 170-pound Marine made of twisted steel and sex appeal but, alas, he's been replaced by a 240-pound PALS who is made of rusted steel and corn meal! She and my daughters couldn't lift or move me with a written plan and a 10-man working party!
Didn't get a firm answer either way from the neuro, but will certainly ask at the ALS clinic when I go in mid-December.

Any advice or experience would be appreciated. Until then, I'll cut the Krispy Kreme consumption a little!

 

[michael0314]

I am no doctor so please dont take my word for it ask someone who knows more than me, but in the meantime this is my understanding if you short yourself calories now your body will break down muscle accelerating the disease. I have had ciecumstances that I did not eat right or enough and I was considerably weaker. People who are somewhat......rustier steel, fair the disease better. If your too overweight all the health risks that were there before your ALS diagnosis are still there so it is a two way street.

Ps there are no dumb questions, you can get answers to most using the serch tool

 

[tmasters]

Not a dumb question at all. It does seem a little strange, but the advice you were given in support group is spot on!

Unless a PALS is morbidly obese, he should try to maintain his weight. Often in later stages of the disease this becomes difficult to do, especially when the swallowing muscles become affected. Many PALS at this stage end up losing too much weight and the body becomes starved for nutrition as it feeds on itself.

Studies have shown a correlation between weight and longevity in PALS. So, enjoy your favorite foods!

-Tom

 

[Jeff Long]

Tom, thanks! I think I'll have a chocolate shake with a side of longevity!
Warning, oxymoron ahead: Except for ALS, I am healthy even at my current weight. I could have used a few more miles on the treadmill, but I'm not blocking any sunshine from coming down. Thanks again.

 

[Okie2]

I was told try not to lose weight, eat as much and anything you want. Which was great news for me but the wife was not so thrilled. We have worked this out fairly well, I get a shake every day with protein powder and ice cream and fresh fruit. Hers is a weight watchers thing. I feel guilty sometimes that I can have what I want, but I get over that pretty quick when the food tastes so good. I will enjoy what I want as long as I can swallow it.
Good luck. Sorry to see you here but welcome.

 

[susanf]

Hi Jeff,
I was told not to lose weight either but i'm 114 (normal weight) now so I can't afford to lose. Like Okie, I make a shake each morning and add a scoop of almond butter along with the protein powder. I also mix creatin powder in my tea.
Sorry about your diagnosis. Stick with this site, you'll get all your questions answered. My ALS clinic has nice folks working there but not to swift on info.

 

[Al]

I was told, everything in moderation. Don't over eat but no dieting.

AL

PS. I've stayed between 211-220 for 8 years.

 

[SixthKid]

Hi Jeff~

I just wanted to say I really like your sense of humor in your posts. I am sorry that you have to be here for sure!

Some of your comments crack me up

I hope that doesn't offend you or anybody because I know there's absolutely nothing funny about this disease. I think we all need a sense of humor just to get through life regardless.

As far as reading comments about weight~my Dad was boasting the other day about how much weight he's lost. We all sat there saying to ourselves.... mmmmmm that's really not a good thing.

I gotta start feeding him more chocolate cake

 

[Jeff Long]

SixthKid,
I'm glad you like my dose of levity! Like you, I don't mean to offend anyone and I agree this ALS stinks like Gramma's boiled cabbage soup, but I figure if someone is upset with my tone they'll fire away at me. Or ignore my posts! I've got my Big Boy Panties on, so I can take it.
Can you let me know when the chocolate cake is ready?!

 

[Jeff Long]

Susanf,
114?!? I have a LEG than weighs 114! I'll toast you when I blend my next shake! And thanks for your input; folks here have amazed me since I first found this site.

 

[notgivnup]

Oh Ya!...I am loving it too...geeeeez....... dont lose any weight!...........I have waited all my life to finally here those words...Now I have a ligitamate excuse to put on a few pounds and be proud of it!......One super size Chocolate shake and chocolate cake please.............(besides sitting in the wheelchair I dont have to say, "does this make my butt look bigger"...LOL)

 

[LizT]

LOL! Loving the humor in this thread! Welcome to the family, Jeff. Sorry youre here, but please PLEASE continue to bring your humor to the table! This sort of thing makes my day!

 

[Miss]

Don't worry about trying to lose weight! The VA will provide equipment so even the most petite of your girls will be able to lift you all by themselves!

 

[brooksea]

Jeff, keep up the humor!

It wouldn't matter if you weighed 160, as my husband now weighs (he used to weigh over 200). When you are dead weight it's just impossible for a woman to lift someone without assistance, unless said woman is perhaps a "weight lifter."

Don't worry about being made of corn meal, in fact, add some cat heads and potato gravy! Once your swallowing starts going, it becomes very, very difficult to get the food down and keep the weight on.

 

[Al]

Jeff if you put your cursor on the +1 there is a drop down with an explanation. It's a Google thing.

AL.