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monica

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Joined
Aug 27, 2014
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Reason
PALS
Country
US
State
oregon
City
central point
I have just been diagnosed with ALS. I already have trouble swallowing and have a feeding tube. Am still able to walk but get weak rather quickly. Does anyone have any tips on how to secure the feeding tube when not using.
Also wondering how quickly this desease progresses. Since I am 73 years old, I'm thinking it could progress quite quickly.
Any help is appreciated.
 
Welcome.
Everyone's progression is very different.
To my knowledge, there's no reason it will be faster with a 73-year old, unless your breathing is already compromised by something else.
Are you a veteran? It makes a difference.

Scroll down the first page of the forum. There are plenty of threads about PEG tubes.
 
Hi Monica. Sorry to see you here!

You can also use the Search feature (menu bar, top of page) to find less recent discussions about PEG and feeding.
Use the keyword 'feeding'. (PEG is too short)
 
Sorry for your diagnosis. My mom was 74 at onset and lived 10 years. You can't predict. Look forward to getting to know you!
 
A feeding tube is already secured by the balloon or bumper insider the stomach and the bumper or flange plate outside. The combination keeps the tube from being sucked in or pulled out. The tubing doesn't need to taped down to the skin or held in place by a binder. If it is the length of it that bothers you, you can get a shorter tube or even a "button" tube put in anytime after the first six weeks. If the tube is so stiff that it pokes your shirt out, ask your doctor for a softer tube.
 
Diane,did I read this correctly! You were diagnosed in 1985 - so have had ALS for 29 years? If so, wow!
 
My husband just lets the tube dangle but always wears an undershirt to keep it secure. I like Diane's suggestions if you're uncomfortable with it.
 
I use a safety pin and pin the end of it to the inside of my clothes.
 
Diane,did I read this correctly! You were diagnosed in 1985 - so have had ALS for 29 years? If so, wow!

Yes, I was diagnosed with possible ALS in 1985, but of course I had symptoms for a couple of years before. I am not not certain when I was "upgraded" to "probable ALS, but by the early 90's it was flat out ALS. I have had three second opinions over the years; Dr. Harati in Houston (kind of the Dr. Appel of that time), the neuromuscular specialists at Ohio State University, and by the ALS specialists at Ann Arbor. Diagnosis was confirmed each time. The only thing different about me is the slow progression. And before you ask, no, I haven't done anything to account for it beyond taking advantage of BiPAP and then a vent (10 years ago). I haven't taken any medications, experimental drugs, vitamins, herbs, or other concoctions to slow the ALS. Nor have I tried any special diet, acupuncture, wet cell, chelation, brain implant, dental filling removal, therapeutic touch, meditation, yoga, prayer, massage, exercise regime, or other “treatments.”
 
Monica, Sorry you have to be here but it's a good place to be for support, answers and a listening ear. (or ears) ;-)

Lynne
 
This post is very good


__________________
abdul rehman
 
Thank you for your imput. My tube is quite long but since I do "bolus" feeding I don't mind the length. I usually just tuck the tube under my clothes. I hope I can continue ballroom dancing and feel the tube might need to be secured better.
 
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