jhon

[laila123]

hi does anybody have any suport when it comes to the choking i had to go to the hospital just sent him home said they could do nothing i feel like people dont care and all i get is nothing we can do

[Patriciapmr]

Hi, it is very frustrating when people say things like that but there are things that can be done to help.

Have you seen a speech and language therapist? Keith had a swallow test done yesterday and they have given him a thickener to put in his drinks which seems to help and given him lots of advice like eating smaller mouthfuls, chopping his food before he starts eating, making sure meat is tender and in plenty of sauce to make it easier to swallow.

They will also advise you on specific foods to avoid.

I'm afraid hospitals aren't much use in this situation because they know very little or nothing at all about this condition, sad but a fact of life! Seek help from the right professionals and hopefully things will improve.

Hope things get better for you....

Lots of love....Pat xx

[laila123 in reply to Patriciapmr]

every time i go they say whats psp so i put in information front of his file they make me cry at times why dont they go and look it up

[easterncedar]

The speech and language therapist was marvelous for us. She did a swallow test, then gave him some exercises. Basically the exercises made him more mindful, so he swallows more carefully. He says he understands what is happening now when he swallows. It hasn't eliminated the choking, but made a dramatic improvement, even though we are not very good at keeping up with exercises. I hope your guy is still at a stage where this might help. Good luck, Easterncedar

[NannaB]

Hi, I agree with what both Pat and Easterncedar have said. My husband gradually choked more often so now I liquidize all meat in gravy and mash or put all veg through a ricer. It's a bit of a chore as I do them all separately so he gets the different tastes but he rarely chokes now. All liquids are thickened. The speech therapist will definitely be able to give good advice.

X

[Patriciapmr in reply to NannaB]

Hi NannaB,

Hope you are ok, Keith wants to know if you can put that thickener in beer? Ha!

Love Pat....xx

[NannaB in reply to Patriciapmr]

Tell him to try it and let me know. I may try it in Guiness, thick froth! It makes wine very interesting. Unfortunately Colin is going through another colitis episode so no alcohol for him I'm sorry to say......OK for me though; without the thickener.

X

[jzygirl in reply to Patriciapmr]

Yes you can and if you get resource thickenUp clear you can do wine as well. If its a fizzy drink you still keep the bubbles. I have tried it in wine no change of taste just very strange haveing thick wine. Janexx

[jillannf6]

I HA VE A SALT COMIGN TO SEE ME ON TUESDAY A/M OS WILL LE T YOU KNOW WHAT SHE SUGGESTS R E C HOKING WHICH HAPPENS NOT WHEN I AM EATING BUT BEFORE I EAT OR MDIDDLE OF NIGHT (ABOTU 4 A,M) AND IT TKA ES AGES TO CLEA R UP

BUT IT DOESNT OVERLY OWRRY ME AT ALL\

;LLIEK TH EBRUISES I GET - T HEY LOOK WORSO ETHAN THEY ARE SO IS HTHE CHOKIGN IT SOUNDS WORSE THAN TI REALLY IS FOR ANYONE ELSE LISTENIGN!

LOL JILL

[laila123 in reply to jillannf6]

jhon now on liqid but they have told me if it happens they cant do anything i feel so hurt for him he is like a child

[Hidden]

Hi Leila, when my wife, Roisin, was no longer able to take solid food in any form, I made her highly enriched milk shakes three times a day which she drank from a special mug with an opening on the top quarter of one side to fit her nose because she was unable to raise her chin high enough to drink normally. Eventually Roisin had to start using large width straws available in our local supermarket. But her weight continued to fall and so her nutritionist (attached to the local hospital and at the request of her neurologist) prescribed purpose made liquid nourishment which I collected in cartons of bottles every month.

This stemmed the weight loss but did not reverse it enough and in time even the act of swallowing from a straw became too much for her. At that stage Roisin decided to have a PEG fitted, this is a tube inserted into her stomach; each night in her case the tube was connected to a pump beside our bed and over a period of nine hours she received all the liquid food she needed. During the day I would use syringes to deliver water and her medication through the same tube. Her weight and her strength

soon recovered.

You will find two schools of thought about the PEG on this site. My wife's experience was entirely positive, so far as I could tell. It prolonged her life which was how she wanted it. Even though she could no longer talk or write or read or walk, she was blessed with the absence of pain and was still very much an active part of her family and friends right to the end. Incidentally, Roisin died of a lung infection which began shortly after her annual flu injection - as you may know this year the flu vaccine has turned out to be only 3% successful.

I hope this helps to define the picture a little more for you.

Christopher

[Valbri in reply to Hidden]

My husband has followed the same path.he now has a peg but is still in the hospital. It has been stressful. In emergency he was given a nose tube for feeding, hydrating, and medication while waiting to have peg placed in the stomach. Being in impulsive he pulled six nose tubes before finally getting a peg placed. That was also pulled after a week. He has a temporary

Tube in his stomach and is ready to go home. I hope the new peg will be placed before he comes home. There have been many delays and setbacks. Been in hospital for six weeks now. He was in hospital previously for six weeks with broken collar bone(fell) followed by pneumonia, then gastroenteritis. Has been home for only two weeks since jan 15. It will be five years since he was diagnosed with PSP. No Help from neurologist. I have been following this sight for sometime. Thanks to everyone

Who has participated. I have gained so much information and help knowing that others are experiencing the same problems caring for their loved one with PSP.

[Hidden in reply to Valbri]

Dear Valbri,

It is a terribly difficult situation for both of you particularly because it sounds as though your husband, who has obviously had an especially bad time recently, may not actually want a PEG. Roisin definitely did want one and was able to say so. But even then there were occasions when I worried that in her frustration and occasional periods of depression she would try to pull the peg out; and there were many occasions when I had to persuade her not to finger the valve at the end of the tube in case she opened it. I am wondering if your husband is able to speak and would be willing to discuss his feelings about it with a psychologist. Or at least you could, in the hope that you would be given advice based on similar situations.

Christopher

[Valbri in reply to Hidden]

Bob definitely wanted the tube. Whatever it took to keep him alive. He doesn't talk much

No volume in his voice and very slow to get the words out. He is impulsive and his hands wander and if they come across the tube he will pull it. The same with the tube for the oxygen. He pulled the wire for the earphones for the TV. He can't stand to have a wet or dirty diaper and will try to take it off himself which brings him in contact with the tubing and hence the possibility of pulling it. Also the tube hangs down way too far. The caps can fall between his legs.he is a small man and they put in a standard size. should be adjusted to his size. He is only 71 and wants to live.

[cabbagecottage]

All sound advice and yes u can put it into alcohol better than not being able to have a drink lol

I thicken gravies and sauces with it .i will have same as John . I must get a ricer Nanna .

[nannygoon]

It is such a shame when you get told that!! Don't give up take advice from other posts get speech and language to do swallow test, my sister who passed away three weeks ago lost the ability to swallow but did not choke but speech and language said she was high risk of choking so was put on pureed diet and thickener in her drinks, it is a hard road for you but you will get through it as I did and my sister Rose is at peace now. Take care thinking of you.

[dllera]

Hi - speech therapy is great but unfortunately - choking comes with the territory. Thickner is great and a must but if your loved one can still chew - grab some papaya enzymes (chewable) or if chewing is tough - get some papaya juice (can also be papaya and pineapple juice blend) and give it right before they eat as that helps dry up the salvia. Watch for rationing in the mouth - most PSP people will try to keep the food in front and have to take multiple swallows before more food enters the mouth. One trick we found was to take a wet washcloth and wipe the mouth and my dad would swallow. I think its from all the years of wiping with a napkin so it was kind of an automatic thing. Hope this helps