Weight loss and people with ALS can be because
1. As you already point out - swollowing difficulties
2. Appetite lessens due to lack of activity
3. Arms are weak and feeding just becomes plain difficult (personal experience)
I am sure more knowledgable people can add to this
i think most people with bulbar problems struggle with weight loss,either from swallowing,chewing or choking problems.
i only started with weight loss just over a year ago when the bulbar symptoms got worse.
i had slight swallowing problems but the main problem was my jaw and chewing muscles.
i lost alot of weight in a matter of months as i could not chew.
thankfully the spasms have calmed down some and i can eat a bit better,also put a bit of weight back on.
there is weakness still there but i think i have learnt to adapt.
you are always told to chew your food,i eat smaller bits and maybe chew it a couple of times but it tends to get swallowed in chunks which is a problem as it can get stuck or i choke.
i am writing slow today,everyone got in before me so i hope my response was ok.
about the uvula,mine curls up to the right.
apparently it turns away from the weaker side(or is that towards?)
How about just feeling plain crappy? If you've ever had a bad flu, you've probably lost some weight because you just didn't feel like eating. Then, again, there are some terrifically overweight people that eat constantly because they felt crappy and eating makes them feel better; so, they eat all of the time to avoid feeling crappy again.
Take me for instance. Right now, I feel, well, crappy. So, to help me feel better, I am going to open a pack of cinnamon poptarts, stick them in the toaster and smother them with butter when they pop up. I will also feed another addiction of mine at the same time, coffee! Nothing goes with butter-smothered poptarts like coffee.
Jules, I can't extend my tongue. I think the uvula is over to the side a little, don't think it matters that much though.
Brenda, I know, its weird in our society to be told to not lose weight if we can help it. What happened to the axiom of it being impossible to be too thin or too rich?
I've figured out a way to help from choking on a thin broth type soup that has pieces in it, like vegetable soup. I let the rice/veggies/ whatever go down under my tongue, and then swallow the broth off of the top of it first. It seems to help a lot, because its a coordination thing swallowing the different textures and consistencies at the same time.
I also feel like I must look like a goat when I try to chew bread (no beard though, nanny goat)
Kimphoon, how can you possibly drink coffee this late in the day! I'd be up all night if I did that. I'm still doing the hot chocolate thing that Brenda got me started on. I had to buy a second box at the store the other night.
Rose, I don't sleep all that well anyway so I drink coffee almost right up until bedtime. At my last appointment, the neuro asked how much coffee I drank during the day. When I said 4 cups, his response was something like it wasn't enough to cause my sort of problems.
I didn't think drinking coffee could cause PLS.
(I guess I should have told him about the other 4 cups in the evening....)
I've always been skinny but in the last year I've gone from 160 lbs to 140 lbs and I'm about 6' tall. My main problem now is that I can't run around in the shower to get wet anymore! But seriously, I have lost weight because, as everyone else has said, eating is just so much work that I get tired out. I don't think anyone realizes what is involved with eating until something like this happens. Chewing and even moving the food around in your mouth to be chewed with a tongue that doesn't work anymore is difficult and then there's the swallowing problem as well. Sometimes I feel like one of those bobble-head dolls with my head flopping around trying to get the food to fall into between my teeth so I can chew it. Not good for your social life. Baaa right back at you Rose;-)
My diet has certainly changed, I don't even try mixed consistency foods anymore especially chunky soups. The one thing that I have been doing every day for the past couple of weeks is to make a smoothie with Carnation Instant Breakfast, a whole banana and a tablespoon of creamy peanut butter. I know that this may not be to everyone's taste but it works for me and I haven't lost any weight since I started them.:smile:
We were told that one reason there can be rapid weight loss (besides the difficulty in eating) is due to hypermetabolism in pALS. That is why it is important to keep the fat on or else the body feeds on the muscle.
Even when pALS are sleeping, their bodies are "running a marathon."
My husband is struggling with this issue right now. They (ALS Clinic) have upped his appointment to this month due to rapid weight loss.
We do the carnation/ice cream thing every day, but he's still losing weight.
my lower face is very sunk in,more noticable on the left side,also sunken areas round the sides of the chin on the right side.
theres some pain with spasms and stiffness,in general the facial muscles are weaker.
as someone has said the jaw and chewing muscles get fatigued .
if i had a steak it would have to go down in chunks,there is no way i could chew that.
these days i eat softer foods that dont need much work to eat,plus plenty of puddings for calories.