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day1

New member
Joined
Oct 1, 2009
Messages
7
Reason
Loved one DX
Country
UK
State
norfolk
City
norwich
Hi
My mum was diagnosed last week, she has had slurred speech and difficulty breathing for 18mnths, i'm kind of preparing for things to progress and have been reading a lot about feeding tubes, can someone help explain how they work, what they do etc so i can research them better? Thanks
 
I'm sorry to read about your mom. There are numerous threads on feeding tubes on the forum. Try searching peg feeding tube.
Laurel
 
All I can tell you is that though the rest of the family wanted it I was not in favor when my Dad had to go through with it. However they were living with it and I was 3 hours away. I did visit him and asked if it was bad and at that point he couldn't talk but nodded his head. He did it so my mother and 2 sisters could have more time to adjust to what was coming. When he was diagnosed he also had diabetes and was taking insulin when they decided on the feeding tube. To me it would have been kinder to let the diabetes take him. He lasted another month with the feeding tube which lets them give a liquid supplement straight into the stomach for food. You and your mother will have to make the choice. As for me I don't want ever have to suffer like that. Death is a part of life and we all must accept it. My father did though die with dignity and now my youngest sister is going through this as well though her ALS is starting from legs up, not the head down like my father.
 
Hi, Day1 ...

I'm so sorry about your mum's diagnosed. You will find a lot of information and support on this forum.

Do a search for "feeding tube" on this site, and you'll get a ton of posts. Basically, the PEG is a small (1/4-inch diameter or thereabouts) tube that goes directly to the stomach and protrudes from the abdomen. With it, you can take in liquids, food supplements, pulverized and liquified "real food," medications, etc., etc. It bypasses the throat, thus eliminating the dangers of choking and allowing patients to get enough nourishment and liquid to maintain their strength and weight.

It is a very valuable aid in fighting this disease and most of us who have them are really grateful.

Good luck to you and your mum.
 
Hello,

My husband is getting his PEG feeding tube tomorrow. He was diagnosed 7/2009 but has had bulbar symptoms since Aug. 2008, and his speech is unintelligible now. Swallowing has been a big problem and I am hoping he can regain a little weight by using the feeding tube. His arms and legs were not affected at first but his walking is getting wobbly now.

Wish us luck. Alma
 
Alma - best of luck tomorrow with the PEG tube. Have had mine a year now and I am more than grateful. It is easy to use and as my swallowing has deteriorated I just don't have to worry about getting nutrition. It just isn't a big deal to live with but is a livesaver.
Dan
 
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