I'm naive on swallowing

Dear all

Please may I have your advice/comments on problems with swallowing

We seem to be at this stage (my most frightening one I suppose apart from the falls)

We had a speech and language therapist come a couple of months ago (quite a pointless visit as far as I was concerned) she said she would ask for a dietitian, it's never materialised

Mum is now blending dads food but today he has been sick twice! He is having difficulty controlling his temperature (normal in Psp I believe) and keeps getting v v hot even though it's about -2 in Surrey!

I'm gonna call his clinical nurse specialist at the hospice tomorrow but apart from thickeners I really don't know if there's any answers and I'm scared!!

37 Replies

oldestnewest
  • You are identifying two symptoms not necessarily connected to each other. Is he choking on his food? he may have aspired some which has led to aspiration pneuomonia and thus the fever. Or He may just have a random fever like my husband did the other night it got up to 38.6C I gave gave him some aspirin and extra fluids and put him to bed...he was fine in the morning.

    At any rate if it doesn't break with aspirin etc by morning get him to the Dr. and of course if it goes above 38*C call doc. now. H

    Have ya'll discussed PEG tub? it seems like we have discussed this so I'm sure your'e familiar with it....Does your mum have a place on this site yet?

    ((HUGS))

    AVB

  • Thx AVB

    My mum regularly reads posts and reads all my posts and replies . She also knows a lot about everyone on here because I'm ever so slightly obsessive with this forum and she regularly crys with me reading various posts equally she's finds it very reassuring that we all in the same boat!

    Yes dad has been coughing and spluttering a lot with food, and now only able to tolerate blended foods! But last night threw up a fortisip (this is a nutritious drink) and previously to that coughed and spluttered up a load of white gooey stuff....

    Aspirin is a good idea, I'm assuming that helps reduce the temperature?

    Re the peg, Dad has decided against this and I agree with this, my view is that it would be prolonging his already shit life! (No offence to anyone)

    I'm gonna call the hospice shortly and speak to dads specialist because they are a million times better than their gp

    X

  • Paracetamol reduces temperature. If it does not, you need a doctor. I hope he is feeling better today?

  • Hi Satt2015, agree with AVB though paracetamol (not aspirin) as it less harmful to stomach and lowers temp. Careful though do not over-use in 24 hr period as paracetamol will damage the liver if overdosed read the dosage on the package.

    If temp hits 39C call the Dr. as it indicates an infection. The PEG is a solution to swallowing issues but you both need to discuss its pros and cons and agree again discuss with hospice or dr or district nurse. PEG allows adequate nutrition and fluid intake but can prolong life later. If thickened and purée foods are not working then PEG is really the next step.

    Best wishes. Tim

  • Thanks Tim, see my reply to AVB! God I hate Psp!! X

  • I can't advise, but from what they have said at the hospital, F has reached that stage, that's why he's got aspiration pneumonia. He's reached the stage where I need to have a serious talk to him about peg feeding, I'd not really discussed it with him that much yet. Yes the most scary bit I've had to deal with yet! We'd seen the SALT person a few months ago, she'd prescribed thickener, which at that point he didn't need, but she said to have it on stand by. She never mention dietitian, although we'd seen one a few months prior, who advised I made my food more tasty(bloody cheek) so be warned!!

    Lots of love

    Debbie xx

  • Sorry Debbie you've made me laugh about making the food more tasty! (Agree, absolute bloody cheek)!!

    How is F now and how are you bearing up? X

  • Yeah a bloody cheek, when most of our friends/ family all think I'm a good cook, and I'm quite adventurous, after all I like my food to taste nice I've got to eat it too!

    I was rather upset yesterday, he seemed to have gone downhill, the day before he'd been sitting in his chair, he could even push himself to standing, quite bright and holding a conversation, yesterday he was in bed barely coherent, so it was a it of a shock. They said I could go in lunch time to give him his lunch, so I guess that means he won't have had breakfast!

    Bloody PS bloody P, (polite)

    Lots of Love

    Debbie xxx

  • It's sooo hard Debbie

    Thinking of you both x

  • She probably didn't mean to offend but I know my husband's taste changed a lot. He developed a very sweet tooth, opposite to prior to PSP when he would opt for cheese and biscuits rather than a sweet pud. When he could still eat and speak he started to ask for ketchup on everything. Once he was on liquidised and puréed food I gave him sweet potatoes and carrots with the meat and kept them all separated on the plate. I put quite a bit of butter in mashed potatoes. I thought I gave him tasty meals before but he was far more enthusiastic about eating once I'd sweetened everything up a bit. Once he had the PEG, he could still manage to swallow small quantities smooth sweet yoghurt and chocolate puddings.

    X

  • You've given me a brilliant idea, I'll put chocolate sauce on his dinner instead of gravy (haha) sad thing is he'd probably actually like that!!

    I actually done that once many years ago, unbeknown to me my daughter who was about 3 at the time had mixed the drinking chocolate powder in with the Bisto!!!! The children enjoyed their dinner!!!

    Lots of Love

    Debbie xxxx

  • more tasty food huh.."well Miss dietician....I'll get a French Chef, now i would like for you to eat this delicacy without swallowing... .....please tell me if making it tastier was my problem......!!!"! "

    I'm sorry but I am angry and laughing at the same time...obvious miss nutritionist did not finish her course work or else she would have learned Anatomy and Physiology of Eating 101!

    AVB

  • I'd have lumped the dietitian!!!! Cheeky indeed!!! Hugs X

  • Hi. I concur. This is a most distressing time. My sister, whose husband suffers with PSP, and has done now for at least 8 years, contracted aspiration pneumonia twice but lived through two very serious episodes. He has had a PEG for nearly six years; a bit challenging at first with the details of operating the device, but that is quickly overcome and now my sister has become a real expert at operating it. My reservation is that PEG feeding seems able to prolong life beyond the point at which there is any real sign of "engagement" with the sufferer. It has been impossible for some time now to know whether my brother-in-law knows what is going on around him, or gets any pleasure at all from his existence. Who knows what he might be experiencing, though I feel one would know if he was in pain or real discomfort - or I would certainly hope so. While there seems to be lots of conversation about whether or not to have a PEG fitted, no-one, at that time, when the sufferer may be able to give an opinion, talks about the point at which it should be removed. And the act of removal is far more "final" and potentially distressing than the act of having it fitted in the first place. But also, a PEG only really deals with one symptom of this disease. It doesn't stop the saliva/mucus issues, the constipation, and so on and so on. It also does not stop the potential for aspiration pneumonia with coughing fits capable of bringing up the liquid food which can itself be aspirated.

  • Hi, Melvyn. It's been a while since I've seen you here. How are you?

  • I'm well thanks. It is my brother-in-law who is the sufferer. I live in North London, my sister in Acton. I spent quite a lot of 2016 living over there for reasons not connected to my brother's condition, but normally I am the onlooker, encourager, helper and occasional 999 service when she has an emergency. Victor has clearly had this disease for 8 years or so and probably longer. I don't often contribute to Health Unlocked these days as I am probably less invoved at Acton than I was as my sister has mastered most of the problems that the condition has thrown up in Victor's case, and she gets a lot of help from Local Authority carers supplemented to cares she pays herself. But I do put in my two pennorth from time to time over PEG issues as I worry about all its implications which seem to be ignored in the quite understandable efforts to extend life in the short term. How are you? I know you have been a regular contributor to this website, and always seem able to give what sounds to be very sensible advice offered in a positive and cheerful way. Am I right to recall that it is your wife who is the "patient"?

  • Thanks, Melvyn, for the kind words. I remembered that you were helping with your brother-in-law. I had lost track of the time. 6 years of PEG feeding is hard to imagine. My father in law, who had throat cancer, survived a short time with one, and it was time worth having, but he didn't thrive, and weakened rapidly. I will eventually have to make the call for my sweetheart, and your experience is something to weigh. Quality of life versus life at any cost...?

    For now we are doing well enough. We got more than a foot of snow here in town yesterday, and there is closer to 2 at my guy's place in the western hills, where we will go for the long weekend tomorrow. Friends have shoveled the path in for us, so all I have to do is get him up the stairs and start the fire. We will admire the white world from the cozy loft and be peaceful. Not a bad prospect. He is tough, and so we carry on.

    Happy New Year.

    Ec

  • Wow!! I didn't realise one could still aspirate with a peg!! Thx u for the info!! X

  • Yes, that's my perception as a lay-person. Victor's coughing fits can be so violent that the liquid feed does come up and clearly gets taken down his windpipe. Very distressing for all concerned. My sister has a course of relevant antibiotics that she can use if she fears an infection has been triggered. Melvyn

  • Thx you Melvyn for the information! It's unbelievable how much I learn from everyone on here!! X

  • This sounds very similar to our situation. We had a SALT visit about 4 months ago. She reinforced previous advice about tucking his chin down when swallowing and recommended blending food and thickening drinks.

    We didn't feel he was ready for puréed meals yet but when I eventually tried it I was amazed to see him finish in the same time it took me. He usually takes at least 30-40 minutes for a main meal. I still don't blend everything though, but he does like how easy it is to eat. He says he gets tired chewing

    Regarding drinks, I have just started thickening them but find I have to add an awful lot to reduce the choking and he doesn't like it. So we've gone back to the "chinny-dip" and if I am on hand to remind him every swallow he chokes no more than he did with thickened liquids. Trouble is it's taking ages to get the sequence into his head - take a sip, hold it in your mouth, dip your chin THEN swallow. Such a job to remember sequences. Anyway, hoping it will stick eventually and so far results better than thickening.

    We're in Tasmania at the moment and were using Aptamil baby food thickener which causes Coca Cola to fizz hugely while preparing so it's flat as well as thick and he hates it. This thickener includes maltodextrin which I suspect is the cause. Does anyone know if the NHS prescribed one has this as a constituent?

    Good luck with it all Satt2015.

  • i AG RE E AJMANDA WIHT WHAT JHAS BEEN SAID

    lol jill]

    xxxx

  • we met with a dietitian in November, when we were at the specialist appointment. She actually made my mother in law very nervous asking the silliest questions. You all know the ones "make sure she gets enough nutirents, make sure you swallow correctly....." blah blah blah blah, that whole day was a waste of time..

    As for the thickners, my dad, who has had numerous strokes, has been on them for quite some time, the trick is to keep the drinks cool once they get warm they taste like garbage.

    As for the temp and vomiting, well everyone else that have much more experience than me sound just about right, please keep us up t date and I hope he feels better

    Paola

  • This may be of help. I asked my husband when swallowing is not a problem. He said if he concentrates and doesn't take in too much he has no or little problem. I realize we are only into our fifth year, but I try to not have too many disruptions while he is eating. He still eats regular food and thickened liquids. We have just moved in with my 97-year old mother, so it is more challenging than when we lived alone. A whole new world of opportunity awaits!.

  • Thx you I agree concentration is one of the key things

    Wow you got your hands full!!!! X

  • ability to concentrate seems to evaporate pretty early into the disease though?! If we got a penny for every time we told my mum to 'concentrate' we'd be very rich! X

  • I AGREE WITH YO\

    LOL JILL

    XXXX

  • We are currently going through the dilemma of what to do if/when A's PEG tube clogs up permanently. He has had it almost a year and it is flowing slowly now. But a shot of Coke helps clear it up. Makes me wonder what Coke does to our stomachs! I feel getting it replaced would prolong his life but at the expense of a lesser quality of life. By having it removed he would be in control of things. He can eat pureed or finely chopped food. Thickened liquids would be an issue because he doesn't like much except juices thickened. This issue was not even mentioned or thought about when he was in the hospital with pneumonia. All the medical staff encouraged us to have it done. He was so sick and i was so worried about him we just went ahead and had it done. It has added to his quality of life up to now but I question that is the case now. Just wanted to put my 2 cents in on the topic.

    Martha

  • hey Martha

    Its funny that yo say the staff atthe hospital encouraged you to insert a PEG tube. Our specialist advised us no to as this would just prolong the inevitable and her suffering. I see many people have had one inserted and are fine with it while others are dead set against it.

    When the decission is made I think we have to resepct it, but when the time comes that decission may be questioned.

    I wish someone would give us all the answers we need, just wave a magic wand. But, if it was that simple I would actually wish all these horrid diseases would just go away.

  • Oh how wonderful a magic wand would be. But too much to hope for. We just hang on and do the best we can.

  • Hi Richanne. My husband gets Nutilis Clear Food Thickener on prescription. As far as I can tell from the tin it does not contain maltodextrin. So far we are fortunate and only need to thicken water to allow him to take his pills without coughing.

  • Thanks for that. Ill look into it when we get back if the chinny-dip stops working.

  • Sorry Satt cant advise as we are not at that stage yet. I hope you find out why your dad has a high temperature and his swallow improves. Love Nanny857xx

  • Thx nanny, it's all a mine field isn't it? Hugs x

  • It certainly is. Thankfully we have this forum and all the wonderful people (friends) to come to for advice and support who help get us through whatever PSP throws at us. Nanny857xx

  • We've been thickening drinks for nearly 5 months now. We don't thicken plain water as mum would not drink it but thicken different flavoured squash as it disguises the taste. We only thicken plain water when mum brushes her teeth because she would cough on it, just started recently, never thought we'd need to do that. Sorry can't help you further with the food allergy as we are not at that stage yet. It does however take a good 40 minutes to feed mum her evening meal and a couple of glasses of squash.

  • Again thx you for your response x

You may also like...