PSP Association
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PEG or not

Hi Coleen

Please be advised thatonce a peg is cant be removed and if his suffering is so severe,he may stay alive only because of the PEG,which is not what he wants and I think,should have.It is very very hard but my husband said he would not have a PEG fitted, if it came to it, I repected his wishes,however hard it is.

Strength for the weeks to is a truly dreadful disease.

7 Replies

Hi Pinda

Thanks for your comments. Yes it is truly a dreadful disease, but I have drawn such strength from the support on this site. I don't know what I would have done if I had not found it. Kind regards and take care.


I have too,over the last year,it has been such a comfort.People outside of this rare illness ,do not know what it is all about,the medical proffession have let us down big time,because there is so little they can we have each other.


I read a very good agument in the national paper some time ago from a lady who's Father had the peg. She wished with all her heart she had not agreed to having it done as she stated her Father was in a home and just sat in his chair all day with no quality of life whatsoever, the only thing keeping him alive was the feeding through the peg, apparently he had been like it for two years and she said it just made her heart break to see him, but once fitted the Dr would not remove it, so we have had a family discussion and my husband last year said he did not want any resus or any intervention and has signed medical papers to that effect. its hard to let go but sometime you have to think what they are going through and Ronnie often says to me he wishes he was dead and that I would be better off without him. We have shed many a tear I can tell you.


I heard the same argument from a nurse whose sister had MS and had been given a PEG by the hospital where she lived. The woman said that after watching her sister lying there week after week, not moving, she'd never advise anyone else in a similar situation to get a PEG fitted. My Mum doesn't want one either - for her, food is one of her few pleasures in life and if she can't eat then there's not a lot of point in being kept alive 'artificially'.

I'm glad you've discussed it with Ronnie and come to a decision about it, however hard that is. *hugs*



i agree

it is a difficult decicison to make but it si irrevereisble once it is done

i have stated htat when the item c ome s i do not want a peg fitted

lol jill


there r a fe wohter blogs abotu htis


YES From personal experiance I can say it is a dedful disease should not come to anyone even if he is your enemy


Try Ryles tube


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