Can anyone give me any advice? When my husband woke this morning he said he felt like he couldn't breath properly, is this something to do with swallowing difficulties, I've noticed lately that he's coughing and spluttering a lot when he eats or drinks, it's scary!
Pat....xx
Hi Pat,
It definitely sounds like a progression of the illness. See if a swallowing test can be performed. that can tell you how should he be eating his food.
In solidarity,
Jess
Thanks Jess,
I appreciate your advice, I'll check about the swallowing test you mentioned....
Love...Pat xx
Go to the doctor, as the 'spluttering' can be him aspirating, which means food or drink going in to his lungs.
My husband got lots of chest infections caused by this, but didn't seem to look as Ill as he turned out to be when examined. Last weekend he was admitted to hospital with aspirating pneumonia and he has been put on a 'fork mashable' diet by the speech therapist.
Good luck, I'm sure your GP will refer you to a speech and language therapist, SALT.
hi mate look you go to your gp it sounds like he is aspirating
to me mate any food going into your lungs it will breed a bug in there and you will have allsorts of trouble I have been in hospital once with it so do not take any chances with it]] aspirating pneumonia]] so do not think you will be ok if you don't go because its a killer I am not trying to frighten you just common sense please let me know how he gets on will you mate Peter Jones queensland australia
psp sufferer if he keeps coughing after easting food and drinking and maybe hes chest will be a bit tight as well mates all the best to you take care
Thanks Peter, I will make him an appointment with his doctor, I'll let you know how we get on....
Love....Pat xx
thanks pat I hope it is nothing but you cant be to careful can you peter jones queensland Australia psp sufferer
regards to your husband ------
Hi Peter,
Took your good advice and got the doctor up to check Keith's chest, he was here in five minutes! Thought his chest sounded ok but wanted to make sure with hospital checks, he also wanted to have his heart checked as well. Ambulance was here in another ten minutes and we were on our way to hospital at 1pm! All the appropriate teste have been done, Chest X-Ray, E.C.G, blood tests and scans and everything was fine, we also went to our local hospice yesterday and they have given me lots of help and advice and are getting Keith's swallow test organised. It's been a long day but I feel so relieved that all the tests were fine so it's been worth it, going to get an early night now!
Thanks again for taking the time to advise me!
Love....Pat xx
hi patriciapmr thanks for your=reply
I am glad that everything was fine when he was checked out mate thats a relief isn't it and he has organised a swallow test for you thats great mate I am very happy for you that you got things rolling along so take care all the best to you and your husband peter jones queensland Australia psp sufferer
Thanks, we are due a visit from the therapist any time now, I'll ring them tomorrow and try to speed it up!
Love Pat xx
Thanks, we are due a visit from the therapist any time now, I'll ring them tomorrow and try to speed it up....
Love Pat xx
Pat, yes a swallow test would be good as they can test your husbands eating on specific products to give you specific detailed information on what you husband could have in his diets and the must nots to avoid. It certainly was an eye opener for me. It has also almost stopped the spluttering my husband had. Mind you one of the ways that worked too was to get him to take much smaller portions of food into his mouth than he had before. Also for the drinking see if you can get the One-Way Drinking Straws, we got ours from the lady that did the swallow test, they are a set of two - different lengths - and can be used in hot and cold drinks. Essentially once my husband has made the initial suck on the straw the valve at the bottom ensures there is always fluid (as long as some in the glass/mug) almost to the top of the straw, this saves the effort needed to suck again and also stops the possible gulping of drinks and digesting too much air too. Best of luck, hope you get it sorted, I know the scary feeling of when this happens.
Thanks GillJan, I'll enquire about those straws on our next visit which is due anytime now. I do watch Keith eating and he's always trying to get too much food in his mouth, sometimes three times as much as a normal portion, he also gulps his drinks and has trouble getting them down and starts spluttering and coughing, so I'm sure those straws would help him. Thanks for the advice....
Love Pat xx
Patricia that's exactly what Malc did. I am so relieved to have found the solution as the choking is such a frightening event. Have you had a swallow test done, they also give you a list of foods to keep away from, such as pineapple, lettuce and others that are more understandable. Hope you get the help you need.
Hi GillJan,
Thanks for the advice, we have had our first visit to our local hospice today and they are arranging for a swallow test to be done a.s.a.p. This illness is completely mind boggling isn't it, so much to think about and do, it's starting to do my head in a bit!
Love....Pat xx
It certainly does do your head in at times. We are lucky at present as having doubled his medication Malc's walking has stabilised somewhat and for the first time in 2 years he walked unaided around our friends garden last weekend, proud or what! Do you have Social Services involved - if so have you asked them about the sitting service. Here I get a Weds afternoon off and the sitter is here 2-5pm in case Malc needs anything and to give me peace of mind to go out and do something for me. It is means tested but I was really surprised at what was on offer, we do pay for the 3 hours but if I extend this we do not pay any more each week regardless of the care and time. It felt really weird the 1st week being able to do something on my own, this week was better and it does recharge the energy - even if you have it all when you get back I do feel more relaxed for a while at least.
I know what you mean, we went to our local hospice on Thursday and they are sorting out lots of help for me including a sitter for a few hours each week, help towards the cost of a cleaner and they will come and pick Keith up on a Thursday at 11am and bring him home at 3.45pm to go to their day centre so it will give me some time to do things for myself. I know I'll feel lost at first but hopefully I will adjust and enjoy the free time I will have, the guilt just keeps on creeping in though!
Can I ask you which medication your husband is taking to help with his balance and walking? I would love more than anything to see Keith walking about on his own, I keep trying to imagine how I would feel if he was able to wander off up the road on his own, how I wish we could have those normal days back again, it's true what they say, you don't miss what you've got till its gone!
Yes Social Services have a lot if involvement in Keith's care, I didn't realise so much help was out there, but I do find you do have to push for it yourself, unfortunately it doesn't jump out at you!
Good to hear from you, take care....
Love Pat....xx
Hi Pat, Glad to hear that Keith is going to the hospice once a week! S was going to our local one, for twelve weeks. It was brilliant. He enjoyed it and I got a few very precious hours off! When we get home, I have to ask for him to be referred again, so he can go back there. Also, Marie Curie offer a Be-friending service, someone, like minded, comes and sits for a couple of hours, just for a chat, or they can take the patient out, anything, so at least, us Carers can get out for a while!
Also interested in this magic medication!!!
Lots of love
Heady
Hi Heady,
Yes I am looking forward to a few hours on my own although I probably won't know what to do with myself on the day, it will be very strange as its ages since I was on my own! Maybe I'll go out for lunch with a friend, or get my hair cut it hasn't been done since before Christmas and is starting to look like rats tails, or maybe I'll put my headphones on, sit in the garden and chill out with a large vodka and coke! You can bet your life it will be pouring down with rain on Thursday knowing my luck!
I am apprehensive about it all though as Keith commented when we left last week that the people there were all old, they were probably a similar age to him he's just not old old if you know what I mean!
Hopefully he will be ok and I will adjust to time to myself, wish me luck!
Hope you are both ok,
Lots of love....Pat xx
Hi Pat, I thought S would hate going to the Hospice, but he said he really enjoyed it! Certainly, there was never a problem getting him up and out early in the morning. ( S can't do mornings anymore!). Once Keith starts chatting about Sport or Politics, or whatever turns him on, he will be fine! (S loved the attention of the younger, pretty nurses)
One thing for you though, plan your day, what ever you want to do, be it, that chat with your V & C, or a shopping trip. DONT, what ever you do, just let it take its course, but before you know it, it will be time for him to come home, and you will still not have showered!!!! I know from bitter experience, it seemed such a waste, I was cross for days! Plan something for YOURSELF, unless there is something urgent needs doing in the house, forget it for the day. No housework, no chores, no supermarket trip, unless you are planning some special. This first day, must be lovely for you!!! NOTHING ELSE!!!
ENJOY!
Lots of love
Heady
Malc is currently on Sinemet and they doubled his med of this to 6 x 25mg/100mg tabs a day taken at the same 3 times each day (its really for Parkinsons). It didn't really do anything till they upped the dose and although I don't think he will improve more it seems to have kept him stable without anymore decline in balance.
I was lucky in that the PSP advisor took over getting me everything I needed. I had done it all on my own for 18mths and reached rock bottom New Year Week. I had no idea how much was avail and we were entitled to. Understand what you feel about the time on your own, it was rather weird the first time I had my 3 hours, it sounds so silly to say that I had trouble in knowing what I would do - the second time was easier so this week should be fine too. Keep yourself well and look forward to your future reports.
Thanks for the information, I will check that out with Keith's doctor, I feel like I'm clutching at straws at the minute, I'll try anything to help him!
Love....Pat xx
'I'll try anything' has rather become my motto at present. When Malc has a difficulty to deal with, we try to work it through to find ways he can cope with as little hands-on help as possible, but keeping him, me and the dog safe.
Sinement has been doubled again and, fingers crossed, his balance has stabilised and at the moment it is slightly improved and this has given him renewed confidence, we know things, can change rapidly but are seizing the moment.
My biggest gripe at the moment is his two new phrases - 'I can't do (whatever)' and in response to my 'why?' I get 'I don't know why.' Also his complete lack of patience, we had a clinic to attend Friday and although I told him what time the transport was scheduled for - he still had his coat and shoes on ready an hour before!! When I ask why he always says because it takes me time to get ready these days, which is true in some small ways, but once he is ready, he then proceeds to hoover about the flat door which makes me feel pushed. I can get him to take his coat off for a while, but if I leave the room - yes you've guessed it - he gets it all back on and its my fault cos he believes I have gone into the other room to put my coat on!!
I really love him to pieces but feel really awful that, at times, I do not like him!
Whoops, that's a rant and a half, but do feel better having somewhere to let go!
The Speech and Language therapist helped my guy enormously with his coughing and choking. He learned to swallow more consciously, and has gone months with no coughing or choking at all after the visits. It needed a refresher after about 18 months, but it helped the second time, too. Good luck.
Thanks we are due a visit from the speech and language therapist, I will ring them tomorrow....Pat xx
Hi, one trick I have just learnt, when someone is choking. Lift the arms high in the air, then get them to cough. S has real trouble coughing, just has no idea of what action to do. Not good, when he had his chest infection recently. Someone showed me the arm lifting. Yesterday, he has a small choke, so I got him to lift his arms, then I said cough and he could do it brilliantly. It cleared, what ever the problem was. Obviously, it will only work on small chokes, if it works at all next time, but it's worth trying.
Lots of love
Heady
Thanks Heady! xx
Hi pat I have found Brian has the odd time where he says he can't breath properly and if I get him to blow his nose it seems to sort the problem. Not sure if its a blocked nose or its a placebo effect. Janex
Thanks Jane, I'll get plenty of tissues in and try that, in fact I'll try anything just to help him!
Love Pat....xx
Breathing Difficulties and PSP
Trouble going toilet 
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