PSP and having a PEG

dear everyone considering a PEG. My husband has had one for 14 months now-first one was shocking-he was in pain-but think it was badly placed he accidently pulled it out in his sleep after about 7 months, we rushed to hospital and he got a new one- hasn't looked back-we go on a cruise every couple of months as you can do that in a wheel chair in a disabled cabin-costs a bit more but who cares, can't take it with you, we watch grand children play sport every weekend, go to shows and the theatre, see friends and go for walks.He can't walk or talk, but enjoys the life he has-though he is very frustrated. he has had PSP for 10 years and would be dead without the PEG. We also go out to restraunts but I feel guilty eating nice food in front of him! He is now 71. PS keeping fit is really important-he goes with his career to the gym every wednesday for gentle excercise, and excercises at home most days.

14 Replies

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  • i do not want a peg when the time comes as it would only prolong my existence but it us a personal decision and i am glad that your husband is able to enjoy all yr hols and trips out

    lol jill

  • Jill , I feel the same way about myself. But B will be going to see the dr for PEG next week. Are you able to swallow? and how long have you had PSP?

  • dxd ln dec 2010 and I can still swallow

    ll jilll

    xxxx

  • Thank you for the positive outlook on the PEG. B has really slipped to hardly any swallowing of food without choking. It is deteriorating quite quickly and it's scary for both B and me. It's good to hear your husband can still enjoy such things as the kids sporting events.

    AVB

  • hi avb nd bruce

    i hav eha dpsp for 5 yrs since dxd but a coup[le of yrs long er than that and ,muy swallowing is s till pretty good the problem iwht muy fodo is that i r4ally enjOY IT and cannot wait once it is presented tpo ,me to start eating - oi tend to eat ptp quickly and tputut too much food into mu4=y mouth a tnauy 1 time and i tend to eat far too quickly too

    apart fm nbeign v frustrated with the PSP i am GOOD - I HABRV TO N=BE

    THAMKS FOR ASKLONG

  • Jill, Colin has been diagnosed for 5 years as well. It's so good you can still communicate. Colin never did like computers.

    Keep enjoying your food Jill......Christmas dinner soon.

    X

  • Always cheering to read your posts, Jill. Like Colin, Chris can't master technology. But he also enjoys his food. I have to hold him back !!

    He also says he wouldn't want a peg.

    love, Jean x

  • How nice to read such a positive post about the stage I dread.

    Chris says he wouldn't want a peg but we will see when / if the time comes.

    I had been thinking of a cruise. We have always had active holidays but I realise we can't do that. A cruise may be the answer.

    Where do you start from ?

    love, Jean x

  • Hi nice to hear positive news about PEG feeding which is also our experience. M now is back to a stable weight chokes only once/ twice a day from saliva drool not being swallowed compared to what seemed like 12 hrs before the PEG.

    May I put a fable to bed - having a PEG does not mean the user cannot eat.

    M has majority of her nutrition via the tube but at least twice a day I share either some of my meal or a couple of chocolates not much a teaspoon but it means she gets taste, she likes curry sauce, chocolate, salty beef stew, anything with a strong taste but not too much. Though I noted that before the PEG she said food was bland may be loss of taste is another PSP symptom.

    Anyway a PEG is an aid not a solution to living with PSP. It is the decision that must be made by the PSP sufferer and their loved one not the medical professionals.

    Best wishes Tim

  • Thank you for your very positive post about PEG feeding. S has been referred, as he will not drink. It's a really struggle, I have to constantly be nagging him, which, as soon as he starts drinking, his health improves so much, that he starts to resent me interfering, then refuses to drink and goes down hill! The last few weeks have been a roller coaster, one minute up, because of the difference a bit of fluid makes, then crashing, as he gets frustrated and very unpleasant, with me forcing him to drink. His speech is so much better when drinking, I just can't understand why, with such obvious improvements that he won't pour as much fluid down his throat as is humanly possible! I just feel like giving up, but I can't, can I!!!

    Lots of love

    Heady

  • Kim's PEG definitely extended her life for at least an extra 18 months, and not all of those 18 months were bad. She continued to eat some for the first 6 or so months, but then swallowing continued to worsen. Then, like Tim does, I gave her only chocolate kisses a few times a day. She also began to love her nectar thick water. Every time our local grocer would put "Thick It" on sale, I would stop up. I now have about 80 jugs on hand, but she can no longer even swallow this anymore.

    I always worried that Kim would tug too hard on the tube and possibly dislodge it, but she never has. I always try to keep it squeaky clean by giving it good water flushes and I also bought a small brush on a long wire that allows you to clean it thoroughly. Found it on the Amazon.

    I also feel guilty eating in front of her, so I generally go to another room and eat. We haven't been to a restaurant in months (and we used to eat out all the time). But one good thing about this, I started on a low-carb diet about a year ago and have since lost over 80 pounds. Prior to the tube, whatever Kim wasn't able to eat, I generally would eat for her, as I hated to see food go to waste. I was always a member of the "clean plate club". And I was always reminded by my parents of the people in poverty who had nothing to eat. Kim and I also loved watching "The Food Network" on cable TV. I no longer put that on, as I'm sure it's too hard for her to watch all the delicious food they prepare on those shows.

    Now that I have signed Kim up with hospice, they continue to support our decision to receive tube feedings, although they recommend I reduce the amount of feed she gets, since her metabolism has gone down. The hospice nurse told me yesterday that the stomach is often the first thing to start shutting down on a dying patient, not necessarily the heart, lungs, or kidneys. I was rather shocked to hear that. But it makes some sense.

    The PEG decision isn't easy, but it was a fairly easy one for us, since Kim was only 53 when the tube was inserted. Kim's aunt who had Parkinson's (had DBS several years ago - Dead Brain Stimulation) recently passed due to aspiration pneumonia. She was 83 and family felt it was not the right decision for her to have a PEG.

    Love and hugs to all.

    Ketchupman

  • My husband has had a peg since April. He was on a puree diet and thickened liquids but he became seriously dehydrated. No longer able to swallow. He wanted the tube because he wants to live.It has been a life saver but it is difficult at times. Every feeding takes 2 1/2 hrs and Bob has a compulsion to pull the tubes out. We have had several tubes replaced and every time it's a trip to the hospital. Sometimes the tube is pulled out accidentally. I have only recently given him a few drops of water as I am very much afraid of aspiration. He coughs a lot and is congested and unable to bring up the mucous. I am trying to find a solution. Any Suggestions?

  • Dear Valbri, feeding used to take hours with us as well-then on one trip to hospital-the time my husband accidently pulled the peg out in his sleep, a young -dietition gave us a different feed, it is 2 calories per ml, so we need a lot less-5 x 200 ml jars a day to make the 2000 calories, and sometimes a bit less. I also take the chill off it, plus we got a different type of peg. Now it takes about 15 minutes per feed. Can't tell you how much better this is for both of us.

  • My Dad had originally decided against a PEG but when he could no longer eat and he wasn't ready to go - he decided on a PEG. We started with supplementing with the PEG and still giving food by mouth (although he could not eat a lot) and eventually it was all PEG. We did give him water in the mouth and still used dry mouth products - For my dad the PEG was helpful - it curbed his hunger until it was his time. The PEG is certainly not a medical decision but a personal one and we must respect the decisions our loved ones make.

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