ALS/MND Support Group Forums - View Single Post

ronney525 · 12-21-2005, 11:02 AM

hi. i have been reading all these posts. i too have a feeding tube. put in june 05. i agree the nurses and doctors have very little useful or practical info. i think part of this is their belief that als is a one way street. so in their opinion...why put a lot into it. maybe i am cynical, but thtat has been my experiences.
anyhow,from the beginning of the "tube" ii decided i wanted to make my own foods. this has worked out very well for me. i have gained 10 pounds. the first days after the tube was put in i could only take maybe 3-4 ounces of the boost formulas. ii believe this was due to lack of food for a while that my stomach had shrunk. now i take 8-14 ounces at a time. plus i continue to eat yogurts and puddings (lots of them) the conventional way !!
i also use a powdered formula from twinlab called gainers fuel 1000...
in 2 scoops u get 1000calories plus many vitamins and supplements (& no cornstarch!)
my way of fixing my meals is to prepare whatever i am eating.... blend it, then strain it. add liquid to correct consistency.
for instance in the miornings i put 1-2 eggs(slightly cooked) 1/2 banana or avocado, pwdered protein, fuel 1000 and my vitamins....and it goes in the tube with no problem and i feel i am having a more proactive hand in my health.
of course homemade food is not for everyone...and each person must make their decisions based on many factors. i only advocate this because it feels right, it feels healthier,and it is quite simple to do. if anyone wants any fiurther info just e-mail me. i am happy to share.
thank you all & best wishes
oh yes...when i got my tube i was down to 103 pounds.... i started this als journey 2 years ago at 145 !!! now i am holding pretty steady at 114.

12-21-2005, 11:02 AM	#10 (permalink)
ronney525 New Member (Say Hi) Registered Member Join Date: 2005 Posts: 51	hi. i have been reading all these posts. i too have a feeding tube. put in june 05. i agree the nurses and doctors have very little useful or practical info. i think part of this is their belief that als is a one way street. so in their opinion...why put a lot into it. maybe i am cynical, but thtat has been my experiences. anyhow,from the beginning of the "tube" ii decided i wanted to make my own foods. this has worked out very well for me. i have gained 10 pounds. the first days after the tube was put in i could only take maybe 3-4 ounces of the boost formulas. ii believe this was due to lack of food for a while that my stomach had shrunk. now i take 8-14 ounces at a time. plus i continue to eat yogurts and puddings (lots of them) the conventional way !! i also use a powdered formula from twinlab called gainers fuel 1000... in 2 scoops u get 1000calories plus many vitamins and supplements (& no cornstarch!) my way of fixing my meals is to prepare whatever i am eating.... blend it, then strain it. add liquid to correct consistency. for instance in the miornings i put 1-2 eggs(slightly cooked) 1/2 banana or avocado, pwdered protein, fuel 1000 and my vitamins....and it goes in the tube with no problem and i feel i am having a more proactive hand in my health. of course homemade food is not for everyone...and each person must make their decisions based on many factors. i only advocate this because it feels right, it feels healthier,and it is quite simple to do. if anyone wants any fiurther info just e-mail me. i am happy to share. thank you all & best wishes oh yes...when i got my tube i was down to 103 pounds.... i started this als journey 2 years ago at 145 !!! now i am holding pretty steady at 114.