Weight loss.

[Vincent]

I have been sort of ticking along with what can only be termed as having ALS light. Foot drop on the left side in 2011, right side in 2014. Breathing was last tested at about 54% 6 months ago with some playing with increased bipap pressures of late. But all in all I still walk short distances, still drive. I use a power chair ocassionaly for longer walks but my upper limbs still do what they do. Over the past month or so from a size 52 jacket to a 48. I can't quantify weight, people with a 52 inch chest don't tend to own scales. Now, I know losing weight is bad, but is this something I need to make my clinic aware of? The last time i complained to a doctor about weird symptoms i wound up diagnosed with ALS.
Vincent

 

[Nikki J]

Do you know why you are losing? Swallow trouble? Too fatigued to eat? Eating the same but increased metabolic needs? Sometimes it can be a sign of decreased respiratory function. So yes call your clinic and get checked. Is a feeding tube in your plans?

 

[gooseberry]

It could also be muscle wasting in your back and chest. I would call.

 

[bigmark1954]

You need to go on my diet.....I can still eat carefully, and eat the wrong stuff often.
I have an insatiable sweet tooth, always have had.

Here's my diet: Lots of Moosetracks ice cream, cakes, doughnuts, cookies, and bacon cheeseburgers, French fries and onion rings.

 

[Lorali]

Oh my gosh BigMark . . . Thanks for the laugh! Sounds like a great diet

 

[tripete]

I have lost 16 lbs in 6 months but my pants are still way to tight (and because my left hand doesn't do so good its a pain in the a$$ to button them), I am still obese by the BMI guide, SO BRING ON THE WEIGHT LOSS!

In one of the Schwarzenegger Conan the Barbarian movies the heroin keeps saying to Arnold "What do you want to live forever?"

 

[Atsugi]

"is [losing weight] something I need to make my clinic aware of? The last time i complained to a doctor about weird symptoms i wound up diagnosed with ALS."

Vincent, thanks for the laugh. And I agree with Nikki. Since you're in this for a long haul, I would try to stay way ahead of it as long as possible. Hope it's a fixable, maybe temporary, problem.

 

[bigmark1954]

Back in the day I used to stop on my way to Sturgis I would eat one of these badboys....ohh and on the way back I'd eat me a nuther one.

It would prolly kill me to eat one now.

 

[swalker]

You need to go on my diet.....I can still eat carefully, and eat the wrong stuff often.
I have an insatiable sweet tooth, always have had.

Here's my diet: Lots of Moosetracks ice cream, cakes, doughnuts, cookies, and bacon cheeseburgers, French fries and onion rings.

Mmmmm. Moosetracks Ice Cream. My favorite is made by Wilcoxson's, which is only available around Montana. It makes the trip to Yellowstone worthwhile all by itself

Steve

 

[Vincent]

Thanks for the replies. I have been having more breathing issues, changes of settings and switch over to a full face mask on my bipap. My diet seems of late to be the Tommy Lasorda diet. I eat till my arms get tired (upper limbs are fine). So taking the consensus here I got in touch with the clinic. Hope I don't wind up getting diagnosed with something bad.
Vincent

 

[affected]

Vince, interestingly as the breathing declines the body uses up more calories for the smallest of tasks. So your calorie need may be increasing, but you can only eat until your arms tire. This may mean you are not taking in enough anymore.

One strategy is to up the amount of calories in each mouthful. Another may be to add high calorie smoothies so that you can eat a meal, then maybe an hour later drink a good smoothie to increase your calorie intake again.

Do talk go to your clinic with you - yep you may not like the news, but it's better to get those extra calories in as soon as your needs increase than start to slide when more calories could have really been helping.

Do let us know xx

 

[gooseberry]

Thin Smoothies with a large diameter straw really help

 

[Vincent]

Tommy Lasorda was a baseball manager off prodigious girth. Eating till your arms get tiredh as nothing to do with ALS and is more about having an insatiable appetite. A 52 inch chest is testimony to this. The weight loss is not a bad thing. Having said that I will be in touch with my clinic in regards with this. But as others have said, the weight loss is nice.
Vincent

 

[gooseberry]

Weight loss in als usually comes from muscle wasting, breathing changes, or indifference to eating. As Steve lost more of his core muscles, his belly grew while the rest of him was shrinking. Smoothies really help vince and stuff called benecal. It is in about 4 oz cups and has about 300 calories each. You can stir it in to many things although they do get thicker in consistancy.

Steve did the bigmark diet! Basically he ate what sounded good to him. This meant ice cream each night , a lot of beef, mac and cheef, etc. This was fine for him until the last couple of months. Then eating was a chore. If you do the bigmark diet, you can always add an egg and seasoning to your beef so it is softer, eat filet, etc.

 

[Statius@]

Vince, your posts in this thread have made me laugh or smile more than once. That's always appreciated. I lived in LA during part of Lasorda's tenure and went to more than a few Dodger games. He was a larger than life figure, in all senses. Hope you don't get any more bad news.