My wife has been on a PEG for 14 months and I personally just LOVE IT. It has kept her with me much longer than if we didn't have one inserted. She was losing weight fast, due to not eating. Within the first 45 days of use, she gained over 15 pounds and has been steady ever since. We are in the US and our insurance carrier provides the feed and the supplies via a Home Health company. The feed is called Jevity 1.5. Each can provides 355 calories. Hospitals also use this product. Her nutrionist calculated that she needs 5 cans a day, but we have only been doing 4 cans via an IV bag and IV machine (designed specifically for feeding tubes) and she gets it slowly throughout the night while she sleeps. Much easier than pouring it in using the bolus method. I don't believe this feed causes her to get too much excess mucous.
We also have a suction machine, but only have to use it on occasion, which is usually after we allow her to eat something by mouth (a big no-no for my wife, but her mom or myself will sometimes give in because we want her to enjoy some food while we're eating). We have a couple of different Yonkers (funny name, but that's what they call the piece that you insert in the mouth). One is a solid tube that's on a slight angle, making it easier to get the tip to the back of the throat. Unfortunately she does like to bite down on it, which probably isn't good for her teeth. And a couple of times I probably wasn't gentle enough and it irritated the roof of her mouth, causing it to bleed. The other Yonker that I use is a flexible tube (kinda like what they use in fish aquariums). She can bite down on this one and not cause any issues and it has never caused an issue with the roof of her mouth. I can also go much deeper down the throat. In the hospital, they use this type to do NT suction, which my wife hated. They would run the tube into her nose and get it to do down the throat and closer to the lungs. But it would get a lot of gunk out and she always felt better afterwards.
The suction machine we have is a little bigger than a shoe box. I'd really like to find a smaller handheld one that we could discretely use out in public or while in the car. We're still on the go a lot and not bedridden ... yet.
I'm going to post this on another post that deals with this issue as well.
Take care everyone and keep praying for a cure. May God bless you!
I can see now that PSP or one of its variants affects people differently
My dad stopped sitting up, drinking, eating, talking all around the same time - we did not realize till a week after the PEG - he can only answer in yes or no now, his cognition is so poor
I mixed up actually - extra sputum (the yellow gunk is manageable, i just put my finger inside his mouth and quickly draw it out) the excessive saliva became a problem this week - I had to rush him to the hospital twice, as mentioned in my other post - the second time, the suctioning reminded me of stories of suspects getting water boarded, it was unimaginably difficult for me to even stand near (but I did, just to realize what he is going through and not try and run away from it, I am not sure if I explained correctly)
I saw his neuro again, he gave another 2 meds, one to help reduce saliva, the other is sinemet plus 25/100 (quarter pill 1 a day) - sinemet should help him with his muscle stiffness and swallow / speech - he stopped this med earlier because it was giving him very painful leg cramps
His nutritionist told us to reduce the feed amount to 250 food + 50 water to keep saliva low as well - let's see how it goes - his mouth is dry today - I hope it's not dry enough to cause him discomfort....
This disease is too hard to balance one way or the other... Specially at this late stage
Hi my wife has had a RIG(PEG) for 6 months best thing that could have happened, like Ketchupman, I think it has made her life easier and after losing 35lb or 25% of her weight in 2 months when she lost her swallow reflex. She now has 4 feeds a day comprising of 6 bottles of "Ensure"mainly fibre, feed on prescription from GP, average feed is 550 ml per feed (330ml ensure 150 ml water and meds) it is milk based but does not affect M swallow. She has excess saliva but very little sputum. Her PEG has enabled us to stabilise her weight at 50kg or BMI 19.
We have tried a suction devise but M has a fast and hard bite reflex, bad for tubes, fingers or toothbrushes that get near her mouth. So I have found that easiest way to remove saliva which cause choking fits is either to sit her forward and catch the drool or if that does not work put her in recovery position on her bed for 15 min (longest she can take) to allow saliva/ sputum to drain out onto a towel.
If your dad is losing weight you need a nutritionist to check his requirements and monitor weight. Weight loss in PSP patients can be dangerous as weakens body allows other more dangerous conditions.
Sorry Abirke for not relying sooner been out seeing sons and grandchild.
Recovery position is a first aid position to allow patients, usually unconscience, to remain safe and able to breath. Sammy90210 has sent a picture. I find it allows M to relax but I have to watch her as unlike an unconscience body M tries to roll or straighten legs. Hence why I have her on her bed and usually a pillow between the bent knee and other leg. Used to use the floor but difficult to get up from.
My dad tries to do that too - sometimes it's because his sleeve is stuck on the shoulder and I need to losen it - or his legs are too close together and they are putting pressure in the crotch area - or one leg is hovering in the air - PSP patients also have muscle stiffness or cramps so sometimes u need to move them a bit up or down till they are comfortable
Tim, Is this new for M, and you ? to have M in recovery position or should I ask,, Is she starting to spend more time in bed? I know B has begun a 12 hr sleep cycle recently. It used to be 8-9 hours but has eked up to 11-12hrs. It's making exercise at gym a little more difficult. I don't want to get him up sooner as his tiredness may cause more falls. is this normal? should I go ahead and get him up? Do you wake M? I feel a little loopy myself this morning so forgive the wierd qs
Contributing my side, these my dad sleeps almost 24 hrs straight and then the next day half an hour to hour awake and asleep - it only started a few days ago - I actually think it's a good thing because it indicates he is at peace and rest - his neuro also said that sleep is good since it suppreses the disease as well - the patient is relatively better when he wakes sup cognitively and keeps getting more PSP-like the more he stays awake
Actually I think my dad was awake today because he wanted to pass some stool and felt constipated - after he passed a bit he relaxed - I give him a stool softener twice a day (cremafin 2 tablespoons) the day after he passes some stool - I forgot this second dose so maybe that's what happened - today is day 3 since his last stool so in case he doesn't till tomorrow morning I will give him a suppository
Hi AVB I have been putting into recovery position only for about 6 wks after an experiment that seemed to work.
Margaret sleep pattern is still mixed up. On a good day she will go to bed at 2030, sleep to 0230 ( toilet trip), 0500 ( another toilet trip), wakes about 0730, usually gets naps between 1100 to 1130, and then 1600 to 1730 and 1930 to 2000. I try to not let her go to bed other than at night but bad days forget about night sleep often up hourly with moaning in between, then restless during the day pulling herself off her chair.
She cannot walk except in my grip, so gym out if there was a local one, so I exercise her by making her walk with me around the house, though this is getting difficult as her left leg is beginning to drag.
Know what you mean about mornings often autopilot until coffee kicks in.
Thank you both Sammy and Tim. What we do, what we do....I hope morning constitution gets back to normal, Sammy. And Tim, this was a very revealing testimony . Do you give M anything for sleep? B has Zolpidem, but we just doubled the dosage to 12.5 mgs as he was taking 75 mgs of Benadryl (Diphenhydramine). along with the 6.26mgs of Z. I cannot tell if B sleeps during the day . He is well positioned in his chair for long naps but with his sunglasses on and the droop in his eyelid i cannot tell ......He seems to be listening to his books but maybe he's dreaming them instead.....His midnight loo runs.... he has been doing very well with, independently and infrequently, with few falls. But things like PeG tubes and comfortable positions are good to know now...though with my ever decreasing memory...We'll have this conversation again.....haha.
Well Tim and Sammy and everyone else, God Bless Us All a Good... 24 hrs. (Whatever part of the day you are in !...hahahaa)
They have prescribed John with glycopperate. For his dreadful drooling all other meds have given him hallucinations. That has certainly help the mucus in his chest and throat His drool is still ongoing .
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psp peg tube dilema...advice + experiences please?
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