eating/wieght loss

[hboyajian]

Caroline, I'm sorry this is such a difficult time for you. Every new change that ALS causes can be tough to adjust to. To be honest, when I first saw my dad's feeding tube it was a shock, as I hadn't realized how big it would be. But most of the people in his support group that he spoke with had healed up quickly from the surgery, and had renewed energy from better nutrition, and hydration and they were not having to spend so many of their waking moments laboriously chewing tiny bits of food just to get enough down to stay alive. The doctor said it could add year to your life if you have compromised swallowing. That's more than Rilutek is supposed to give you. Also, if you are having any breathing difficulties, get approved for a bi-pap to use at least while sleeping if it is possible (I know insurance companies can be sticklers on their rules about it). There was a study mentioned a while ago to see if earlier use of bi-pap can increase ALS life span. Maybe if you or others bring this up, doctors will begin to prescribe them sooner. It could make a difference too.

I hope I'm not being too overbearing about this. Please forgive me if I am. Holly

 

[olly]

update

still no improvement on eating problems, lost another couple of pound's.
been keeping diary on food i eat, basically anything that needs chewing is a problem.
with swallowing it's bread,biscuits(dry ,stodgey stuff) , stringey things like homemade colslaw and spagettii,stuff like that.
iv'e always been a healthy eater so trying to eat more fatning stuff is difficult.
also doc says my bp is still very low and am i increasing my sodium/salt as neuro said, if this thing does'nt kill me i'll be dieing from heart desease.
also i have now gone from 4 to 5 pillows,and seam to sleep better,my son said i'll soon be sleeping sitting up at this rate.
only 2wks to go to mnd clinic, hopefully they will figure something out.

 

[MamaSara6]

Olly, my mom needed everything blended up for her. My sister did a great job of keeping her fed. She enjoyed chili, and chicken fingers blended up with lots of gravy, baked potatoes w/ barbecue. She also enjoyed eating all the soft, yummy things that she'd been trying to avoid for years to lose weight! Even though she got a PEG in March, she was able to keep eating until the last week. The PEG really just came in handy for medications and extra fluids.

 

[Steve100]

Hi Caroline

My Mother is eating things like rice pudding and porridge at the moment, have you tried those? They're pretty good for you

Take care

Steve

 

[olly]

hi steve

i hate rice pudding, but i do like porridge, the proper stuff made with milk.
i had not thought of that thanks steve i'll try it. iv'e been trying to persivere with the chewing but from tomorrow i'm going on soft food diet as it is now so distressing i can't be dealing with it. i noticed in the mirror today i'm looking gaunt in the face so i'm going to have to sort that out or my anti ageing creams won't work lol.
all the best
caroline

 

[CindyM]

Hi Caroline- most PALS say that the sooner they accept assistive things, the more they enjoy a better quality of life. It's not worth the effort to wear out your jaw, LOL. I'd get a blender and start grinding up my favorite meals!