PSP Peg

Has anyone else had experience of having a PEG fitted yet and if so, how are you getting on with it, is it beneficial? the consultant has said mum needs it fitted sooner rather than later as it dangerous if left.

She is starting to experience difficulty swallowing and choking, but it's not that bad yet but he says once it starts it progresses quickly so we need to take action. Any comments ?

16 Replies

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  • My Husband has said no to anything that keeps him alive such as that or any other machinery. I too do not want him or me to live that way. PSP is terminal. I'll do everything for Rog but I won't go against his wishes. This will do nothing for his quality of life.

  • Both Roger & I do not believe in artificial ways to keep him alive. That is all a peg is,he will live with his food pureed etc.

    GAD42

  • We had the PEG conversation ages ago shortly after receiving diagnosis and C will not have one fitted. With regard to choking, C started experiencing this last November and while it has worsened he still eats normal, albeit 'wet' food. He has had one bad choking episode at day care when they had to do Heimlich manoeuvre. Otherwise he is doing fine. I have recently started feeding him (last week) as it means I can control amount he takes in at any one time, and insist he 'chews well' before swallowing. Also find he needs to sit up straight, he tends to slouch, and that cuts choking episodes too. So dinner table echoes to 'sit up' and 'chew well' - whatever happened to the lively debates of yesteryear? I did read somewhere that PEG should only be fitted when patient displays weight loss due to difficulties in eating, so may be that applies in your case.

    Good luck.

    P

  • Thank you

  • It is a very personal decision. If the patient recovers from the op, then the patient should gain weight and stabilise. Around the time my mum and I had to make this decision there was an article in the PSP magazine about a woman who had had a PEG fitted a couple of years previously, and she was glad she had made that choice. Mum wanted to live. We loved our time together, and got out every day.

    The operation is done under local anaesthetic. The surgeon would not allow me to stay with her while it was performed, because he said it would be too traumatic for me. Unfortunately whilst still in hospital, she contracted C Difficile. We stayed in hospital for the next 3 weeks while they dealt with that. Sadly, within a couple of weeks of getting home she contracted pneumonia and died.

    I wish it hadn't gone that way. I can see that if the op had been successful, life would have improved somewhat for both of us. Before the PEG, I found I was feeding her for about 8 hours of every day, having to wait, watching carefully for her to swallow before offering her the next spoonful. By contrast it would only take a couple of minutes to get the perfectly balanced liquid nutrition and her medicines down the tube.

    It is easy for an able bodied person to say "Don't prolong my life" but of course it depends totally on the quality of your relationships, and your experience of life. Not every person with special needs has family and friends with special abilities. I hope your mum is one of the lucky ones. Don't leave it too late. Good luck x

  • Sorry to hear of your Mum's passing and I hope you are doing ok. Your comments are very helpful, thank you so much. At the moment she eats very well has a healthy appetite and we are careful but the choking has started so the consultant thinks it's better to fit sooner rather than later. She will still be able to eat orally but that way, it is already in place safely. Mum is not keen at the moment but admits she thinks it will be for the best in the long run. Appreciate your thoughts and wish you well.

  • My wife, Roisin, opted for a PEG when she could no longer swallow even liquids in sufficient quantaties and her weight dropped to 41kgs. It was her decision. She was fed at night while she slept and the PEG was also used to give her medicines and water. It greatly improved her quality of life because it restored her weight and strength, mealtime 'torture' ended (for both of us), and so it freed time for other things. And it meant that she did not in effect starve to death. It gave us fifteen more months together.

    Incidentally, in the event of a miracle or a cure for PSP, the PEG is reversible.

    Christopher

  • That's very positive and how we feel about things. We want Mum to be as comfortable as possible and to enjoy the time we have. Thank you so much. Best wishes

  • EVERYONE ON THIS SITE KNOWS WHAT I THINK ABOUT PEGS HAVING HAD EXPERIANCE OF A LADY IN THE NEXT BED TO ME IN HOSP IN LIMOGES WHO CRIED OUT ALLNIGHT FO HER DEAD HUSBAND AND WHO HAD TO BE WASHED AND CKEANED LIKE A BABY --

    SO I HA VE MADE IT VERY CLEAR O MY HUSBAND AND CARER THAT I DEF DONT WANT TO BE KEPT ALIVE JUST FOR THE SAKE OF IT ..,,,,

    SHARON

  • There is an excellent video on the USA site CurePSP.org It isn't pro or con but just gives the facts for you to decide. Give it a try. Jimbo

  • Thanks Jimbo, we'll have a look that's great.

  • Thank you everyone for your comments.

  • My husband needed to have a peg inserted as he was severely dehydrated and was no longer able to swallow puréed food and thickened liquids. He opted for the operation Ashe continues to have a great desire to live even thouugh quality of life is greatly diminished. He is hooked up to the feeding machine 3 times a day for 2 1/2 hrs. A day. Sometimes his hands have to be tied as his compulsiveness leads him to pull on the tube. He has pulled out the peg several times since having it installed in April and we go back to the hospital to have a new one inserted. It limits his freedom to leave the house as he needs to keep to a strict schedule and be there when the caregivers are present. So far we have managed . Bob can no longer walk, stand , or even turn over in bed.he is 24/7 care. He no longer has volume to his voice.he can't speak even though the words are there. I am not sure how he sees. He listens to the TV but sometimes turns his head towards the screen. He likes to stand even though he has to be held and will still try to take a few steps. It is a sad thing for me to watch but he has determination and everyone is happy when he smiles.

  • Thank you

  • Hi JB569

    My wife did not want any artificial feeding last year but then choke was infrequent. Then after New Year this year she very quickly lost swallow reflex and eating even puréed foods became a struggle, any meal took an hour and she became exhausted very quickly. It took 6 weeks to get a speech therapist to check her out for aspiration luckily nil but she was not happy so got an emergency appointment for us with dietician and nutricianists. They weighed M and between new year and first week in March M went from 11st to less than 8. They suggested a nasal gastric tube to feed M to increase weight so RIG/PEG could be inserted. NGT great success, M no longer choked was able to relax and enjoy time. I opted for a bolus form of feeding, I feed M using a syringe to put feed down the tube not a machine, it provides us both with some personal relaxed time together, only down side is the 3 hrly routine can be a bit restricting. It means we can go out again, I tend to feed M in the car or at friendly cafe so we can go out again. M is no longer choking she has stabilised her weight and it has given her a better standard of living. She is very happy with the arrangement. Most importantly in March she changed her mind and agreed with the need for a form of assisted feeding after a lot of information. From my experience PEG should be considered early rather than in an emergency as weight lose due to choking and coughing can lead very quickly to major complications. it is a big decision but can improve standard of living. Best wishes Tim

  • That's very informative, thank you so much for sharing. Best wishes

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