Wednesday, February 16, 2005

Food and Drink Tips for NF2 patients

Hi. It seems to be a common occurance that people with NF2 have swallowing difficulties and facial palsy after treatment. As a result, this can make eating and drinking challenging. Here are a few of the things I have learned that are helpful.


With facial palsy it becomes difficult to drink out of water bottles and glasses with a large circumference. Usually I drink 4 glasses of water while eating at indian restaurants. My husband and I went to a buffet and I barely drank one glass of water! The glass was too wide and everytime I tried to take a sip it would embarassingly dribble down the right side of my chin and onto my clothes (good thing I only drink water).

So what is the solution? Ask for a straw. Even sucking through a straw can be challenging so I find that I need to suck on the straw using the left side of my mouth (the unaffected side). Also, I find if I drink out of a standard size water bottle (or like a 20 oz soda bottle) I have to again use the left side of my mouth because I cannot create a tight seal around the bottle openning and the water leaks out of the right side. I find that I need to take small sips of water and I cannot chug down large gulps like I used to. This week I have had both water and soup come out through my nostrils because I tried to swallow too much at one time.

Ok, how about those Nalgene water bottles from REI that all the outdoor enthusiasts use?
I use mine very often and was frustrated that I might have to discontinue the use. Well low and behold we found a solution at REI! For $5 you can buy a new top for the bottle that has a little flip top mechanism that allows you to suck the water out in small proportions. The top is similiar to some shampoo or calamine lotion bottles I have seen.


Crunchy dry things like chips, pretzels and crackers are hard to swallow. I did not realize the cause until I spoke with a neurosurgeon. For whatever reason, there is a decrease in saliva production which makes it difficult to consume large portions or food or drink or things that are dry. There are several times where I choked or had to regurgitate and try to swallow again (sorry if that sounds gross but it is the truth). As a result here are some foods that I find easier:

cream of wheat
soup (chicken noodle, chicken rice, chowder, hot and sour, miso and any thai soup)
ice cream and yogurt (if you can stand the sugar as your taste may change)
apple sauce and cottage cheese
mashed potatoes or mashed squash
soft steamed cauliflower or brocoli with velveeta cheese

Difficult foods to eat when affected by facial palsy are: Slices of pizza, sandwiches, fruits such as apples and nectarines, large burgers, and anything that requires you to open your mouth wide and take a large bite. Solutions: cut into small bite size chunks, chew on one side of the mouth, forgoe these items if you are going out to eat. It takes a very long time to eat when dining out. I have literaly chewed the right side of my mouth to shreds and as a result acquired huge sores due to accidentally chewing my lip on the side with the palsy.


On steroids I cooked marvelous meals and was very motivated. However, off of them I am often tired and unmotivated. So on days I feel good I try to cook intestesting things. For the sick days I stock up on frozen meals, premade meals from Costco, or easy to prepare meals like hamburger or tuna helper.

Acidic foods will upset the stomach and may make you more nauseous. Antiacid tablets, Gavistron and Zantac are helpful.

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