My husband was referred to the hospital in November as staff at the hospice want him to have a PEG fitted. The specialist we saw said he wouldn't do it because of the risk involved and because my husband, "Certainly doesn't look malnourished". He has now been given an appointment for a video X-ray of his swallow. It says he will be given a drink of barium, some yoghurt and a barium sandwich. It also says, " If there are certain things you know to be difficult, please bring these with you". If I do that I will have a big bag with me.
We have a list of instructions which must be followed and I'm not sure my husband will be able to follow them ie. holding the food in his mouth until the doctor says 1,2,3 swallow. For the sandwich, chew it as long as you need to and when you are ready wave to the doctor. He will then count to 3 and say swallow.
Has anyone else had to do this and how did they get on. I can't see my husband following any of these instructions.
Nanna B
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Ho NannaB. Hubby had two of these. There were no problems and the radiologist let me look at the screen. The x-Ray shows clearly what food goes down into the stomach and what goes down the wrong way. afterwards the barium is a bit sticky around the mouth, take some wet ones and tissues. I let hubby bite on the tissue afterwards it helped clearing the stuff out of his mouth. It's not really a problem, just a bit messy. You will find you need an extra toiletbrush! Barium is very heave and impossible to flush down without help. You will find out what I'm not very good at describing.
Thanks Maddy. That's reassuring and thanks for the advice. You have reminded me about the barium. He has had several barium enemas in the past but I forgot what the results were. It's on the 20th Jan so I will keep you posted.
I will think of you Jan 20th.It is easy to feel responsible for our PSP sufferers like you do young children but if he gets the instructions wrong that is their problem and will appreciate the fact you have this problem day and night.The Camel and I had to get him up again 6am today and its really hard to get him to sit and wait while it inflates so I was shouting which makes him giggle.Happy new year to you and your family.P
You are correct P. It will be their responsibility. Thanks for reminding me. It made me smile thinking of you with the camel but I don't suppose you smiled at 6am. What's the difference between an Elk and a Camel ? ( sounds like a silly question ). The camel is completely flat so I have to stand behind my husband as it inflates or he falls off the back. Does the camel have a back rest. The only falls we have now is when my husband slips from his chair but the last time I had to dial 999 as I couldn't get him on the elk. The ambulance men were grateful for it though as they weren't NHS and didn't have an elk on board the ambulance.
We are very fortunate in that we have a night sitter. Our usual one was sick last night so they sent a 12 year old boy ( he is actually a gap year student but I don't think he has started shaving yet). He has been once before. I was woken at 6 am as well with a crash. I shot out of bed and downstairs to find him taking the hoist into my husbands bedroom. Colin was hanging out of the bed, nearly on the floor, having manoeuvred over the rails and clinging onto them. He wanted to use the commode. He was also laughing. The lad had brought both the commode and wet room rise and lift commode into the bedroom where he was now trying to position the hoist. As the electric wheelchair is also kept in there, there was no room to move. I don't know what would have happened if I hadn't taken charge....well I do, Colin would have ended up on the floor.
Oh well hey ho! Just another day in the mad house.
NannaB. Not to worry about Colin following instructions correctly. We found the staff were very patient and used to deal with patients having difficulty following instructions.
Yes the camel has a back rest so you inflate that first but once sitting he has plans of his own for getting up which usually means falling off and I have to start all over again.Sunday morning I couldn't get him onto the camel and a paramedic came and was so pleased with he camel she wasn't that big but together we did it then the cat got into the space in the camel all it needed was for the pigmy shrew the cat brought in earlier to reappear. I often use Beryl Reids saying to myself "all part of life's rich pattern"After so many falls close together I asked the dr to call and he suspects an infection so hopefully we will get back to the fall once a week not once a day when tablets work.
I do have good friends and family but have asked for a few hours care for Des so he gets used to someone else doing things for him.Perhaps too it will show him I am not the only person not to be able to fry an egg while making the bed and answering the phone.
Did you find the shrew? We have guinea pigs, less trouble. While reading your post I heard Colin "wailing". I can see him in the monitor so knew he was ok. He was crying to Eidelwise ( can't spell it) as the Sound of Music is on again. We have just come back from the hospice so he missed the beginning. Not sure what he will be like by the end. I hope you get someone else to help. Colin didn't want anyone to start with as we had family and friends willing to sit if I wanted to go out but now he has more trouble with continence he prefers people who aren't friends to help him. He copes with femail sitters helping but I know I wouldn't want old friends or family members helping with personal things so he wouldn't either.
I hope the falls become less frequent. Unfortunately the only way Colin's falls improved was when he became less mobile. Let's hope antibiotics work wonders.
I hope you get a bit of a lie in in the morning and a peaceful night.
Emptied a bookcase expecting to find shrew but not there problem is Des pulled the gas fire away from the wall on one of his falls and I have had fire removed and blocked the chimney as best I can but not shrew proof only cat resistant.Our local Handihelp are coming on the 7th they might find it.They will completely block the hole for me and I have ordered a slimline electric fire to go in its place.I frequently rescue shrews the cat doesn't hurt them much just frightens them, so wondering if its one I have rescued in the past.
Des had a good night has had some breakfast and gone back to bed so I have breathing space.Thanks Des. Px
What you said reminded me of something. When our youngest son was about seven we found we had mice in a side loft, next to his bedroom. We decided to use humane traps as neither my husband or I fancied the other sort and were worried poison would kill them somewhere we couldn't get to. Every morning for about a week my son and I would walk to the local woods 5 minutes away, before school and watch the little creatures shoot off into the undergrowth. He would carefully carry the trap and we could see the mice, quite calm and washing themselves. One morning my son said, "You know what's happening don't you mum?" I said, "you are going to say it's the same mouse every day aren't you?"
He replied, "Of course it's not the same mouse, the first one said to all his friends, get down to number 32, they give you a lovely breakfast and then give you a lift home".
I hope you enjoy your short break. Colin won't go back to bed once up. Last year, our grandsons had just left so my next job was to take down the fire guard. Before I could do it I heard a crash and found Colin on the floor in front of a very bent fire guard. The fire wasn't on (living flame) but if the guard wasn't there he would have crashed into the mantle piece. I had to get another fireguard as bits had broken away from the original so now it is up permanently.
My guy did it early on with no trouble, but he was still swallowing pretty well and following directions, too. It was helpful; the speech therapist coached him and gave him some exercises and he stopped choking.
hi easterncedar I did not know that mr C had a peg fitted how long ago was that
MATE \\ I AM CURIUOS ABOUT THE PEG AS I HAVE OFTEN SAID I DO NOT WANT ONE FITTED SO ANY INFORMATION YOU CAN GIVE ME I WILL BE OBLIGED TO YOU\\ I HAD A FALL THIS MORNING AND CRACKED MY HEAD ON A BOOKCASE NOW WHO SAID IT WOULD KNOCK SOME SENSE INTO YOU BECAUSE I DONT FEEL ANY DIFFERERENT THAN MY NORMAL SELF YES I KNOW WHAT YOU ARE GOING TO SAY MATE\\\\\ I AM GLAD THAT YOU HAD A GOOD CHRISTMAS WITH FAMILY AROUND YOU
BUT ISNT IT NICE WHEN THEY GO HOME PEACERFUL I MEAN \\ NAH I WOULDNT BE WITHOUT THEM FOR QUIDS MATE A VERY HAPPY NEW YEAR TO MR C AND YOUR GOOD SELF SEE YER TAKE CARE OF YOURSELVES PETER JONES QUEENSLAND AUSTRALIA STILL A PSP SUFFERER
Oh no, Mr. Jones, we aren't at the PEG stage yet, but Mr. C did have lots of bad choking and explosive coughing very early after diagnosis. He went to a speech therapist who gave him the barium swallow test and then some exercises to do. He stopped choking altogether for about a year, then went back for another test and a refresher course on how to swallow safely, and he's been really good ever since. He says he has to be more aware, but he can feel how the throat is working and it helps. So I'm a big fan of the speech therapist. We used to have coffee sprayed all over the room at regular intervals. I didn't know he could beat that, but so far, that is not a problem anymore. Eating is fine, walking, not so much.
Sorry about your head. I think you tall blokes have a much worse time, so many more things to hit as you go down, and more time on the way to build momentum! Happy new year,Mr. Jones. Keep up the fight. We have taken to growling at psp. It makes us laugh. Love and peace, Easterncedar
Peter Jones, you never fail to make me smile and laugh! I am glad you are "still a PSP sufferer". Not the suffering part mind you but that you are still on this site. Your attitude inspires me. Think maybe you should get a crash helmet My husband actually has one but refuses to wear it even around the house where he usually falls.
hi gold cap well im glad I ,make you smile and laugh
I think we can be to down in the dumps and pretty miserable we might as well have a laugh while we are here matey otherwise we make everybody else miserable around us to then that's no good having two of you miserable is it or more if you still have a family with you mate \\\ I think my face looks miserable enough but I can still crack a smile if I have to I don't know about a crash helmet mate ive been hurt in so many different places I think I need a complete suit
one like the michilin man had that advertised tyres
I think I would be safe then but it only hurts for a little while the worst discomfort I had was when I done a rib in cause you could not laugh or even blow your nose not your nose mate I mean mine anyway I got over it with a smile but not at the time I can tell you
well mrs gold cap I will say goodnight to you and thank you for your comments best wishes to you and yours
and I am glad that you did not wish the psp on me mate
Hi Goldcap, Peter Jones replied to you but it came as a reply to me so just in case you didn't get it, you should know it's there now.......if that makes sense.
Hi Peter Jones, Queensland Australia, Colin hasn't had a PEG fitted yet. The hospice thinks he needs one as he chokes when they feed him but he rarely chokes at home as I liquidise all his food. I do everything separately so it looks and tastes nice. We went to the specialist at the hospital who looked at him and said C didn't need one as he wasn't malnourished and hadn't had any chest infections. The hospice still thinks he should have a PEG while he is well to avoid infections. The X-ray he is to have will show if the food is going down the right way. I'll let you know the result.
You are correct Peter Jones, it is nice to have family round but so peaceful when they go home. I hope you didn't hurt your head too badly. You didn't have your crash helmet on then? New Years resolution........stay upright. If it was only that easy.
hi nanna b and me old mate colin how yer doin matey ok I hope
and them flies haven't been worryin yer well mate I went to the dr yesterday just for a check up reckons im not doing to bad for an old fellow so how have you been matey thats more to the point I hope you have been behaving yourself and not playing up especially when they come to your place with their ukes and start playing I bet you have a right old time don't you \\ well mate just thought I would drop you a quick line just to see how you are going
so thumbs up matey take care and don't forget to tap your feet in time with the music even if they aren't in time \\ not you nanna b just the others see yer later mates peter jones queensland Australia psp sufferer
Hi Peter Jones, no flies on us, it's too cold for them they are wrapped up in their duvets somewhere. Colin is on steroids again and they have a good effect on him. The Colitis is improved and some of the PSP symptoms as well. I nearly had an accident yesterday. I was chatting away to him in the car as I always do, as he sat in his wheelchair in the back. I glanced into the rear view mirror expecting to see a bowed head and closed eyes. Instead there was a very wide eyed face staring at me. For a second it freaked me out. Colin thought it was very funny and laughed. We were on our way to the hospice. When I collected him the staff said he had been awake nearly all day and when two staff members took him for a walk using his walker, they had a job to stop him from running.
I'm looking like Rudolf at the moment. I'm having treatment for abnormal, sun damaged cells on my nose ( we do get sun here as well). I have to put cream on 3 days running which removes the damaged skin. With my busy social life I have had to time the treatment. It was uke night on Thursday and I am going out next Wednesday so have started the treatment now. I should have done it around Hallowean. If I'd opened the door to trick and treaters looking as I do now, they would have turned and run.
It's Valentines day today. I've recycled cards we sent each other 3 years ago when Colin could still write. I read him the message he wrote to me then and his thumbs went up. He said, "Same now".
Stay upright Peter Jones. Don't give your wife too many shocks.
hi nanna b howes it going ok that's great news about our mate colin didnt give him any fly ointment did you mate I am really glad and happy for him to be doing well \\ sorry to, hear about your nose matey I did not think you got that much sun to worry about sunscreen
I think that you have had some shocking weather over there so ive been told but out here is no picnic at times theres either a drought or if it rains theres floods or theres as bush fire but =for all that its still a great country I love it \\\ well mater I don't know about flies in duvets but no doubt they will be there \\ I worked out on a property some years ago now we used to start at 4 am in the morning to beat the heat and the flies because ity looked like you had a black waistcoat on when the came around for the sweat on your body\\ and at meal times we all sat down in the bunkhouse and the owner used to say everybody ready and we would all say yes of course then out came hes big fly spray machine and he would pump away then the jilleroos used to rush in with the meals before the flies came around again which they did in there millions buity he uised to kilpl all hes own meat there and the steaks used to hang over the plate about 4 inches each end it used to be a massive feed no wonder the flies enjoyed it matey it was paradise for them and afterwards you could go for a ride on the property on the flies backs I think the property was about half the sise of England mate it went for miles ands miles true story mate excerpt for the bit about the flies giving you a ride around the property best wishes to you both thumbs up colin see yer take care mates peter jones queensland australia that was in part of queensland it was dry as an old boot psp sufferer\\\\\
Did you have one of those hats with corks hanging from it to keep the flies off your face? I hate flies ugh! Last year a mouse died in our loft. We only found out when I went upstairs to my bathroom to find a swarm of flies buzzing to get out of the closed window. I got rid of them all but an hour later there were dozens more. I saw one flying out through a gap in the loft hatch so as my darling hubby could no longer climb a ladder I had to deal with it.
My nose is now a very huge ugly weeping blister...nearly as horrible as flies. One more cream treatment today so hopefully it will soon be beautiful again. OK, it never was beautiful but it should be better than it is now. The doc said it was probably damaged 50 years ago, befor global warming. I remember as a child, every summer my brothers and I always got burnt red raw. I don't know if sun screen was available then but our parents never put any on us. We just got covered in calamine lotion afterwards. After a few days of being burnt, we used to peel our dead skin off. Gross isn't it.
You have just got thumbs up from Colin. He, had a bad night coughing last night which meant I did also so it's going to be a nap by the fire this afternoon. Can't wait.
hi nanna b for the 2nd time around well matey I cannot locate your last em matey so I will just waffle on for a little while matey ok with you ----------------that's good mate because i was going to anyway well I remember you ask me about our roof asnd was it damaged in some way well matey the answer is no its fine we had just had it painted from terra cotta to charcoal grey mate and we liked the roof so we had our driveway done as well now the house looks like its brand new again and when I told you there were some blokes standing around they were all looking up at ours and saying how good it looked with the house so we had a spend up instead of going on another little holiday we though we would get the house done up so there you go nanna b and what about me old mate colin how s he going along today I expect he is getting ready for the next uke class at your house and having a smootch with all the young ladies that play their ukelales no flies on this colin bloke matey is there not with saddles anyway anyway mate I will say goodnight to you I do not want to lose this again my one finger typing would not stand it so see yer mrs nanna b and colin take care mate peter jones queensland australia psp sufferer
Nanna B. We have taken to re reading old cards as well! I love his response-good man. But you know what they say, behind every good man is an even better woman!
hiu mrs nanna and colin im sorry that you bad a night the other night mate im still trying to break mine now I go to bed at 11 pm I sleep around to 3-- 3=30 then I watch tv until approx. 4..30 depends whether there is any movies on or programs of interest
or not if not I try to go back to sleep unti 6==30 --- 7am when I get up I open up the plantation shutters in the other part of the house hen I get the breakfast ready or if my wife is up first she starts it and I finish it yesterday I finished up on the floor of the kitchen for 20 mins because I could not get up I hurt my arm and its still painful now cause the floor is tiled and they are blooming hard until i dragged a dining room chair over and managed to get up with the aid of it BUT I HAD GOT A BOTTLE OF CREAM OUT OF THE FRIDGE WHICH WAS ALL OVER THE FLOOR AND WINDOWS\\\\\\ SLIDING ONES \\\ ALL MY OWN WORK I THOUGHT I HAD BETTER TRY AND CLEAN IT UP OR ELSE I WILL BE FOR IT BECAUSE YOU KNOW WHY THEM ANTS ALL DRESSED UP IN THERE MOTOR CYCLE GEAR WOULD BE IN THERE LIKE A SHOT MATE MY WIFE IS STILL ASLEEP SO I DECIDED NOT TO TELL HER MY ADVENTURE OR MISADVENTURE I SHOULD SAY UNTIL LATERN THAT DAY WHEN I WENT OVER AGAIN IN THE KICHEN \ AND I HIT THE SAME ARM WELL I CAN TELL YOU I WAS DEVASATED SWHE HAD TO GET MY NEIGHBOUR OVER THIS TIME TO GET ME UP OFF OF THE FLOOR SO THEN I THOUGHT I MIGHT GET A BIT OF SYMPATHY HERE SO I TOLD HER THAT THIS WAS THE 2ND TIME I HAD FALLEN AND THE CREAM WENT ALL OVER THE PLACE SHE SAID TO ME ITS AN GOOD JOB YOU CLEANED UP OR ELSE WE WOULD HAVE HAD ANTS ALL OVER THE PLACE NOT
WHAT I WAS EXPECTING I THOUGHT SOMETHING ALONG THEM LINES OF '' HAVE YOU HURT YOURSELF'' LET ME HAVE A LOOK AT YOU I WAS VERY DISAPOINTED COLIN I CAN TELL YOU MATE
BUT I AM GLAD IN ONE WAY WHEN THE TIME COMES FOR ME TO
GO I HAVE A FEELING THAT SHE WILL BE OK BUT IVE STILL GOT A LOT OF CREAM TO GO ALL OVER THEN PLACE YET SO WEBARE GOING TO BE AROUND FOR A LONG TIME YET AINT WE COLIN THUMBS UP TO THAT MATE well mates I was onlyn going to type a short em to you tonight but hey it was my left arm that hurts not my typing finger right hand so here we are and now im going to say goodnight to you colin you behave yourself and you nanna b by the way it reminds me of a time I went to get a bottle of milk out or jug out of the fridge same thing happened to me I thjink that fridge will have to go soon its very unlucky for me see yer peter jones queensland Australia psp sufferer
Yes, my father has had swallowing eval. and I also thought at time that he would no be able to do it but he did fine and staff were very helpful. I would bring the foods he has the most difficulty with. My father was recommended to use Thick in his drinks and to pace him self. My father is fed by us and still has coughing issues , it's due to this awful PSP
Thanks Mconnie. My husband is coped well with the X-ray and nothing went down the wrong way so he doesn't have to be fitted with a PEG yet. I liquidize all meat and mash all veg and he is coping well, thank goodness.
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