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Active member
Jul 6, 2005
Loved one DX
east amherst
hi everyone, my brother was diagnosed with bulbar als about 5 months ago though his symptoms started in april (familial form). anyway, he is 46 and determined to continue to stay positive and fight it, which is wonderful. he is very active every day ar work however, he refuses to think about a peg tube because he said that is giving in to the disease and besides 'how much weight could i gain?' he is only 115 lbs. i said to him that he needs to look at a feeding tube in a positive way, not a negative way. that if he wants to contiue the fight he needs energy. does anyone have a feeding tube and if so, how much has it helped you? have you gained weight and how much? i need to have some responses for him when we discuss this again.
by the way, he is presently on the eric is winning approach and has just been detoxified for major heavy metals. we will know the results in about 10 days. he's been going for ozone therapy and iv chelation as well as nutritional iv for a couple of months now. we shall see...thanks again.
Hi janicebuf,
I have bulbar ALS, and think getting a peg tube was one of the best decisions I have made regarding management of my ALS. I got it before I really needed it, then when I really started to lose weight fast, and was just not able to eat enough to keep it steady, I started using the tube for feeding. It was a great relief to have something to stop the weight loss and give me more energy. I did not gain any weight with the feeding tube, but have managed to hold my own for a year now.
I realize that every situation is different, and you might feel like you are giving in to the desease by getting a peg, but it has helped me to control the disease, I think.
It will be interesting to see how the detox and chelation and other things he is trying work. Keep us informed, and keep positive!
Everything that he does is a small concession. Losing weight and energy is not good for the battle. The problem with PEGS is that people thnk that it's the end of the line for "real food" and it doesn't have to be. My wife had one and continued to eat stuff she liked (although modified in its cosnsitency) and also managed to have a glass or two or... of her favorite wine. Sometimes she wore some of it... but that's a small concession. The peg can allow him to boost his caloric intake.
Hope that this helps.

hi. i got my "feeder" about 7 months ago. i was down to 103 pounds, now i am holding steady around 115. it was a hard emotional decision to make, but once i got past that i have had no regrets. one medical professional impressed upon me the possible catastrophic consequences if i might choke and aspirate into my lungs with the possibility of pneumonia.....that put the food issue into focus quickly. i make all of my own foods, and i still can eat yogurts and such the conventional way.
now the tube is just a part of me, and how i eat.
sounds like your brother has chosen to fight, i too do many so-called altrnative things, but in the meanwhile you must also adapt to the changes to allow you to keep fighting.
"just do it" ! it's only scary and odd at the beginning...good luck
Thank you.

you are all so wonderful and kind and i thank you so much for that. i have forwarded every reply about my brothers feeding tube dilema to him. i hope he makes the right decision and chooses to get it. i will let you know. again, my heartfelt thanks! janice
Hope I'm not thread stealing here -- But going through this Feeding tube process with my mother --- She similarly does not want the tube but is warming up to the benefits. Her concerns:

1) How long are you in the hospital ? (She absolutly dreads going in) We (caregivers) are stressing the benifits - biggest being pill consumption

2) Procedure is fairly easy/simple?

Thank you----- janicebuf for letting me add here
mine was outpatient....home after a few hours.
i was sore, but they gave me pain meds which i used for about a week
small piece of advice, take some antibiotics a few days before procedure. i did not ( because my dr. did not think i necessary) and ended up w/ an annoying infection. any incision into the dtomach is considered "non" sterile...therefore exposed to contaminants.... so taking antibiotics is somewhat preventative.....p.s. remember to take some yougurt to avoid yeast and thrush.
other than that, i don't know why i waited as long as i did...
hardest part is the decision !
Mine was day surgery, I was also home in a few hours. I was given some pain medication, but only needed it for the first night. I did not have antibiotics and thankfully did not get an infection, but it sounds like a good precaution to take them. The feeding tube was a good decision for me also.
Something that my dad's doctor told him to try was to drink 8 bottles of Ensure a day. My dad has been doing this for a couple of days, and has put a couple of pounds back on. If you are trying to avoid getting a feeding tube, drinking the 8 cans of Ensure (which equal to about 2200 callories) might be something to look into. I know that if my dad cannot handle drinking all of that fluid, then the feeding tube would come next. I just wanted to throw the Ensure idea out there for all people who are trying to gain some weight, and are trying to put off the feeding tube as far as possible. But, if the feeding tube is the way you decide to go, I have heard many good things about them.
Henry also had a feeding tube inserted about a year before he died. It was a really fast procedure, and as someone said the unkown is the most scary part. He stayed overnight to do a sleep study, and was home the following day. We had no complications. However, after about 7 months the tube started to clog up. They did not tell us that when we had it put in. I guess it happens all the time. He had a new tube inserted about a month before he died. He was in and out in about an hour. Henry did not gain any weight with the tube in, however, he managed to maintain his weight with the feeding tube. It really was a good thing for us to do for him. We fed him during the night and he ate regular food during the day. Remember, when you start to have trouble flushing the tube or getting the machine to start, you may have the start of clogging. I wish that they would have been honest with us and told us that they do not last forever, we thought that they did. This problem may not occur with everyone, but I guess when you are putting that thick isosource through that small tube it does gum up. We never regretted the feeding tube. It was a positive thing that helps you with your basic nutrition and keeps your body strong longer. Good luck to all that have taken this course.

Stay Strong, Carol
in response to drinking 8 cans of ensure....for weight gain you might want to try one of those body builder formulas. the one i use( in my tube w/ my breakfast foods) is from twin lab, and just 2 scoops equals 1000, essentially it would be easier to gain weight w/ something like this. .i personally think better ingredients than the commercial advertized drinks.
anyhow i use this as an added boost to my regular tube foods.
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