Don't Give up

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wrjosh88

New member
Joined
Aug 20, 2008
Messages
6
Diagnosis
11/2006
Country
US
State
Virginia
City
Fairfax Station
The Night Is darkest just before the dawn, and I promise the dawn is coming...It might sound far fetched but for the past week I have had this feeling in the pit of my stomach that a cure is coming. I don't want to read anymore stories about a losing battle, I want to read stories about how your loved one swallowed some real food today. We have to keep fighting and keep believing that a cure is coming!
 
You are so right, we must never give up. And I am happy to report that I ate chocolate chip cookies with my 7 yr old tonight and never got choked!

Keep the faith strong,
brenda
 
Good for you!
I also let freddie lick the outside of my "famous" fried chicken...we are southern.....lol.... he has a trach so that was a biggie for him.......
So keep eating the cookies..............
netty
 
way to go southern girl!

the only problem in continuing to eat the cookies, they might just go to my hips! hahahaha


Oh well, more of me for my family to love-

The new picture is great, I will get some of mine on here as soon as I figure out how to do it!

Keep the faith,
brenda
 
I also let freddie lick the outside of my "famous" fried chicken...we are southern.....lol.... he has a trach so that was a biggie for him.......
So keep eating the cookies..............
netty

Oh, man, does that chicken sound good. I'll be right over! This forum is making me hungry. Netty, I'm going to see if I can make a Southern fried chicken smoothie, to go with my salsa shake and my chocolate chip cookie ... cookie!:) :) :)

BethU
 
I am still eating chocolate cake, carrot cake and Red Velvet. Along with drinking lots of Dr. Pepper. Over a year after docs said I needed a feeding tube. Will never give up !
 
I am still eating chocolate cake, carrot cake and Red Velvet. Along with drinking lots of Dr. Pepper. Over a year after docs said I needed a feeding tube. Will never give up !

That's so great! I tell you, this forum is doing wonders for my appetite!

My drink of choice is Diet Coke, and I can still eat solid foods, too. But my problem is that I have so little appetite, most foods repulse me. When I was diagnosed, I had lost 24 pounds in 2 years because I just had no interest in food, and could only eat a few bites at a time. It takes me 3 days to finish a Burger King Whopper ... literally. Pretty soggy by the time I've reheated it the third time.

So am shoveling all the nutrition/calories I can into the smallest amount that I have to get down. I go through periods of only being able to tolerate one or two foods. First few months of the year, it was cheesecake. Then potato salad! (For breakfast, too) Then lemon merangue pie. Now it's chocolate milkshakes filled with protein powder, liquid vitamins, Ensure, etc. Plus 8+ slices of toast and margerine a day.

Whatever, it's working. I've gained 7 1/2 lbs since my diagnosed in May, and that's what the neuro said to do. Gain the weight back! She said keeping your weight up or gaining has been proven to slow progression better than Rilutek.

When I get my feeding tube, if I live long enough, I plan to launch it with a shot of Bacardi Dark, washed down with Coke. :)

BethU
.
 
Finally a Subject I can get into.... FOOD

All jokes aside, it is weird that I have lost the urge to eat many foods. Yet my sense of smell seems to be greatly increased? Weird Huh?
I do not eat near as much as I use to, and yet I am very picky about what I crave. Aby-normal genes coming up again.
 
All jokes aside, it is weird that I have lost the urge to eat many foods. Yet my sense of smell seems to be greatly increased? Weird Huh?
I do not eat near as much as I use to, and yet I am very picky about what I crave. Aby-normal genes coming up again.

Sounds like me, Cap Al. I also had that intensified sense of smell (couldn't stand to smell some spices for a while), and just lack interest in most foods, even ones that I "normally" love. I guess that's why I go overboard on the few that appeal to me at any one time.

Like ... potato salad for breakfast? But a couple months ago, it was all I could stand to eat. Now, I can't stand it!

BethU
 
Hey Beth. That should be Coke you're drinking, not Diet Coke.

AL.
 
That diet coke isnt going to help with weight gain and now there are studys that artificial sugars cause neuro problems.
 
Hey Beth. That should be Coke you're drinking, not Diet Coke.

AL.

Yeah, Al, but there's something magical about that can full o' chemicals and completely artificial diet flavors. :)

Pat: I'm sure you're right about the ill effects. It's a wonder I have a neuron left firing anywhere in my brain. But I've gained almost 7 pounds in two months, so I guess the "Diet" part is false advertising!

BethU
 
Well I guess if you drank 12 or 14 cans a day the diet thing would be out the window. My wife prefers it too. Can't stand it myself.

AL.
 
That's probably because you have taste buds.

BethU
(2 cans a day)
 
Yes Buds Light tastes good too. LOL.

AL.
 
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