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Crooked Creek

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May 14, 2007
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Brampton
Can't eat chicken, meat, toast, hot cereal, hot soup etc... What do you suggest?

In latter stages of ALS ... can't speak very well, chokes a lot on everything (food/drink), uses suction machine for several hours at a time, is on bi-pap machine 24/7.

Won't be over eating Christmas dinner this year. ;)
 

patricia1

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Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Hi I do well with yogurt rice pudding choc pudding icecream malts creamed spinach Stay away from mixed tectures, as cereal and milk soups that are not creamed macaroni with veg. ect. hope that helps pat1
 

AngelManFL

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11/2007
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FL
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Tampa Bay Area
Hi, my only source of food for the past four months has been a really good protien shake. I can't chew any solid food or like pat1 stated, trouble with anything textured and for me I have real trouble with anything hot or warm also. I make my shakes with vanilla ice cream added and a banana to make it even thicker. For me - the thicker the better - I will absolutely choke my brains out on all liquids. There is a great product you can pick up over the counter at any pharmacy or drug store called 'Thick-It' or something similar - I was really hesitant at first but it doesn't change the taste AT ALL! I was really surprised, you can add it to water, milk, OJ or Gatorade(my favorite), I just get the bottle water and single bottle Gatorade, add it to your liking and it truly does not change the taste - just makes it thick enough to swallow easier. I would certainly ask your Dr about it first, but it really works for me. I am also able to enjoy drinking again and it definitely increased my fluid intake. For me, everything has to be at least like an thick eggnog thickness or it will go right into lungs!

Hope this helps, I'm sure others with more experience will help with more suggestions also.
 

AngelManFL

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11/2007
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P.S. at Thanksgiving Dinner I brought a pre-made shake and had pudding for dessert! Still enjoyed the company of my family. I too have almost no voice left...
 

CindyM

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I have heard of some PALS having success with pureed foods. You use a food processor and some liquid to make them the consistency of baby food. You might be a little past this stage from the sounds of you description, but I pass this along in case it helps.
 

Mary Helen Barr

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Mar 6, 2006
Messages
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My father liked instant mashed potatoes with gravy. You can add milk to the potatoes to make them "creamier" if they get too thick.
 

swmn

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Apr 7, 2007
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146
Reason
CALS
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Wi
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marshfield
Pumpkin pie -w/o the crust - you can change the recipe to make it more loose like pudding by adding milk -just bake in a 9" square panyou get the eggs, and the value of the pumpkin!
Another choice is Yams / sweet potatoes or squash - mashed with the addition of a hint of brown sugar.

Cream of rice, or possibly oatmeal... I make my friend Smoothies 2 X a week using fresh fruit including Bananas and a good amount of yogurt then just blend with Ice. They are wonderful and he loves them.
 

l2c

Active member
Joined
Sep 11, 2007
Messages
44
Reason
CALS
Diagnosis
n/a
Country
US
State
Florida
City
Fort Myers
My PAL Husband has a PEG now and finds that it is so much easier than trying to chew and swallow even softer food. He still has an occasional pudding cup, some ice cream or pured food but not too often. Sometimes he likes scrambled egg with cheese but not as much as he used to. I am releived that he is getting sufficient calories and vitamins through the canned liquid.
 

paula-jane

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Lost a loved one
Country
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Ontario
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Oakville
Hi everyone,

We have been cooking every meal for my mum since the beginning of her struggle with ALS. She is not able to speak, and she is no longer able to chew... she can open her mouth wide enough to stick a toothbrush in and even that gets stuck sometimes, but, she somehow manages to get the food to the back of her mouth with her tongue. It takes time and patience to feed her. Concentration on her part and the part of the caregiver is VERY important. We thicken her liquids with Quick Thick (she will choke without it) and thin her food with stock (to keep the flavour) We have a meat grinder, so she enjoys a wide variety of meats mixed with pureed vegetables (steamed first and then reduced with water/stock) Everything goes into the food processor and gets whizzed around. We usually let the food cool in the pot first and check to see what the consistency is at that point. We then thin the food again if needed. Most of her food is prepared in bulk so that we can bring it to her and freeze some of it to be reheated during the week. For example, We used ground turkey, cranberry jam, carrots, potatoes and the spices that would go into stuffing for flavour. Tossed everything into the food processor and then thinned this with gravy and vegetable stock. Pureed risotto tastes a lot like a pasta dish. Pureed bacon (believe it or not it can be pureed) adds so much flavour to meals. Most meals don't look like food... but, they taste good. Soups are okay with her as long as they are not too thin or thick or have too much texture and cream. I know it seems time consuming and it was for us at first, but, we managed to incorporate that into our lives and it's just routine now. I hope there are some ideas here to help.
Paula
 

CindyM

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I can vouch for the pureed food and its taste. My Mom has forgotten how to chew so the nursing home purees her food. Some evenings when I go to help feed her it all smells so wonderful that you forget what it looks like! especially after a busy day when i missed my own lunch, LOL!
 

awransburg

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Joined
Oct 16, 2006
Messages
12
Reason
PALS
Country
US
State
CA
City
San Diego
Edible foods

Cream of wheat works well for me. I make it with whole milk instead of water and then add a pat of butter and brown sugar and a little milk. Delicious! Cream soups are OK too and even a grilled cheese sandwich with no crust and made with soft bread -- no whole grain. Thick and creamy yogurt and puddings, too.
I survived on these for a long time and now have the PEG.
 

CindyM

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On days when I am too tired to chew I make a fruit smoothie with about a quarter pound of tofu. I throw the whole thing into a blender. The soy provides protein and the fruit masks the blandness of the tofu. If you use frozen strawberries and a bannana or pear, it is really tasty.
 

ilgal

Active member
Joined
Jul 28, 2007
Messages
83
Reason
PALS
Diagnosis
00/2001
Country
US
State
IL
City
Somewhere
SInce you're talking about swallowing here, I'll add my questions to this thread.

I seem to rapidly losing ability to speak but really not having lots of trouble with choking/swallowing. Sometimes a drink seems to "go down the wrong pipe" and I cough a bit, but other "normal" people do that too. Is that the beginning of choking and is it likely to get worse? Will it get so bad that I won't be able to drink?

As far as swallowing, I've become an extremely slow eater. It just takes a long time to chew. And bready type foods stick to the roof of my mouth. Is that going to get worse?

Can any of you who have or care for folks with speech onset tell me how likely it is to still be able to walk and move pretty well when the speech is gone? Is it possible to walk right up til the end?

Thanks.
 

kmgy

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Dec 22, 2007
Messages
40
Reason
Loved one DX
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US
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pa
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somewhere in
Hi ilgal,

Yep, my father walked right up until the end. he had no difficulty walking whatsoever.; he only tired very easily because of his breathing.
His began with speech and swallowing. He ate a few bites of food the day before he passed, chewing and swallowing were very difficult, but he could do it really slowly. a few of his fingers on his one hand were affected as well, and not usable, other than that it was his breathing that finally got the best of him. The bipap just did not help him any longer.
he was diagnosed in july 04, and passed in december 04.

kmgy
 

ilgal

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Jul 28, 2007
Messages
83
Reason
PALS
Diagnosis
00/2001
Country
US
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IL
City
Somewhere
Kmgy,
That is so quick! Was he having symptoms for a long time before diagnosis? I am sorry for your loss. Thanks for responding.
ilgal
 
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