What causes weight loss?

[halfin]

Hello, everyone! I was just diagnosed with ALS last week. I am still trying to get my head around all this. My main symptom at this time is slurred speech, but it's not too bad. Also I have been choking a little more often while eating, I have to be a bit careful; and I often have to cough a little after drinking water.

I wanted to ask about weight loss. I have been doing Weight Watchers for the last 2 1/2 years. I lost 40 pounds and have kept it off with difficulty. It seems strange to imagine having to keep from losing weight rather than struggling to keep from gaining weight.

What causes weight loss in PALS? Is it fear of coughing and choking that makes people stop eating so much, even though they are hungry? Or does your appetite go away, maybe as your muscles start to atrophy? Or maybe just general depression takes away the pleasure of eating?

I really like to eat and I wonder what is ahead for me on this difficult path. Thanks for any information and experience you can offer.

 

[Tich1]

Hi haffin , welcome to you first of all . Sorry you had to come here but you will find this forum a great support and a good fountain of knowledge . I will make a point though of saying do ask your care workers and your neurologist as many questions as you wish .
I lost weight with a combination of loss of ability to swallow , and through dehydration , but also muscle wastage . I remained hungry though I must say even when I was unable to get any food down . I am sure some of the members who have been on the forum longer will be able to answer you better . Nice to meet you
x

 

[Tich1]

....erm...sorry , I typed your name wrong ...halfin

 

[BarryG]

Hi Hal, Tich1 is correct, weight loss in ALS is a combination of a number of factors but the main ones are difficulty in chewing and swallowing leading to reduced caloric intake and reduced muscle mass due to atrophy. I went from about 160 lbs to 116 lbs in one year (I am 5'11" so even 160 lbs is not heavy) so by the time I got my peg I was ready for it. I definitely had a good appetite but I just couldn't force the food down my throat and the sheer effort involved with trying to eat makes it so that you burn more calories trying to eat than you get out of it. Someone once said that it takes more energy to eat celery than you get out of it and the sad fact is that with bulbar ALS that is true for almost all foods not just celery. The good news is that modern technology makes it possible to get nutrition without having to ""eat". I have gained 14 lbs since February and am feeling like I have a lot more energy so the peg tube is the way to go.

Barry

 

[joelc]

Hi Halfin! Sorry you have to be here.
Everyones story is different and you will find that ALS affects everyone differently as it progresses differently for everyone.

In my case I was still very mobile when it started to affect my breathing. Since this happened early for me I got a PEG because of my deteriorating respiratory problem. I could still eat without any problems. Even eating normally and supplementing through my PEG I lost 80 pounds in a year. I attribute it to the fact I was having to work so hard just to breathe I was expending more calories than I could take in. I also believe that our bodies are fighting ALS so are using a lot of calories as our immune system is working overtime. I stopped loosing weight when I got my trache and vent and could stop fighting to breathe.

Like I said, everyones experience is different and there is no way to tell what will happen and what rate of progression you might experience.

You have come to the right place for help and support!

 

[brooksea]

Sorry about your diagnosed!

In addition to what has already been said, I would like to add that my husband's neurologist explained to us that even while a person with ALS is sleeping or simply sitting in their recliner, it is as if their body is running a marathon due to hypermetabolism. I don't know that this affects every pALS or just some.

Keep as much weight on as you possibly can and eat as much as you want of fried foods and cream sauces. Stuff that is bad for non-pALS is good for pALS! :grin:

As for choking on water, you may want to switch to thicker drinks or use a product like Thickit to make swallowing liquids easier.

Good luck!

 

[BethU]

Hi, Halfin ... I've been on a diet since I was 12, so my brain is still sending mixed messages ... oh, goody, I lost another pound, DAMN IT, I lost another pound!

All together since my bulbar symptoms started, I've lost 26 pounds (and three inches in height ... don't know if that's ALS related or not ... my head is set forward now because of weak muscles, so it could be part of it). When I was diagnosed, the neuros told me to forget diets, forget cholesterol, eat anything and everything I could, just keep my weight up. So I've been fighting to keep from losing, and since I got my PEG, the loss has slowed WAY down.

With me, it's a combination of things: loss of appetite at first, and difficulty chewing and swallowing. Then strange food cravings and aversions, limiting my diet to only one or two foods at a time. Then the fact that muscle weighs more than fat, so when you lose muscle, you have to replace it with a lot more fat, volume wise. As CJ says, ALS is thought to alter metabolism in some way. Then the fact that as ALS has progressed, twitching has appeared. It's very small and subtle muscle movements in various parts of the body, but it goes on constantly, 24/7, hundreds of times an hour. This is serious exercise and burns calories! (I think the rule is to lose weight, you do rapid exercises, to build muscle, you do slow. So the rapid constant muscle twitching is definitely working to consume calories.)

Finally, when muscle fibers start dying, adjacent fibers (or neurons or whatever they are) pick up the slack, and work twice as hard to respond to brain commands, so this is extra work that we are not even aware our bodies are doing.

If you like to eat, go to it ! I take almost everything in by PEG now, but I give my taste buds little treats, even just a lick of something. It's not THEIR fault I got ALS, and they've served me so well over the years, so I'm not going to abandon them now! :lol:

 

[Tich1]

Hee , love that last paragraph of yours Beth hun , I too like to lick or struggle a spoonful of a tasty treat

 

[GlenBrittle]

Stress will get you in the first weeks.
I lost 15 lbs in the first two weeks.

Since then , I eat much healthier , but allow my self the 20% pig out rule.
I am able to keep a constant 240 or more (and I'm not telling how much)

My appetite ranges from a normal human portion , to watch your fingers , if its on the table , its fair game.

80% good healthy food , and 20% ewwy gooey greasy clog your arteries junk ! I love my food.

Enjoy

Glen

 

[rose]

halfin, Welcome to the forum

I have nothing original to add, you've already gotten good advise. I did want to say that eating has become such a drag for me, its like the payout is not worth the effort, and this is common for many...Combined with the super metabolism that CJ mentioned, is as good a reason as any that many lose weight. It is weird, that in today's society, especially for women, there is so much emphasis placed on being thin, and then after the diagnosis, our doctors don't want us to lose! Even high cholesterol seems to keep the progression for PALS slower, so eat eat while you want to! Eat the decadent stuff with no guilt! Have that second glass of wine (or so) ... and as carbonation seems to make it easier to swallow, a nice high calorie beer or soft drink is a good idea too,

Good luck to you

 

[GlenBrittle]

It is weird, that in today's society, especially for women, there is so much emphasis placed on being thin, and then after the diagnosis, our doctors don't want us to lose!

Give me a healthy woman with some curves over a purposely skinny one any time.

Wheelie Wabbit

 

[hopingforcure]

My hubby is like you, he loves curvy women, says he want 's to know he is sleepin with a women when he rolls over. Always been a curvy girl, hope that is the last stuff to go.

 

[Al]

Cool pirate hat Rose. Curvy women have more to grab hold of in a thunderstorm!

AL.

 

[joelc]

Hey Al, you still have that much use of your hands? I am definitely jealous! LOL

 

[rose]

Al.. we've been contemplating how to remove a dead limb high up in a huge tree in the back yard, then we had such a sudden storm blow in last night, it came crashing down, thankfully away from the house rather than onto the deck. Problem solved