Poor B! he love(s)d the American "delicacy". But recently choking has denied him this fair as well as other foodstuffs.
Has anyone (PSPer) who is still eating, found that reducing the size of the meal has reduced the amount of the choking? I have found that B no longer can eat regular sized meals without disaster....I cannot convince him to eat the other half in a while ie 6 meals a day as opposed to 3. But I feel this may be a remedy if only for a moment....
I have read a few ideas on what ya'll do to help your mate with choking, Sorry if you must repeat it for me But I ask, What are
Remedies to prevent or stop choking...
Thank you all,
AVB
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abirke
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The amount of food doesn't make a difference to C's choking but the consistency does. He still eats almost a full size meal but mashed or liquidized. Originally he would cram food into his mouth which would make him choke. He then went on to food cut into small pieces by me and it made a difference for a while but not for long. One day he asked me to feed him and that was again better for a while. It now takes well over an hour to feed him a main course so I give him half and then microwave the rest so it isn't cold. He always clears the plate and rarely chokes. He chokes more on saliva and mucous than on food.
Yes, NannaB I also cut it up to small bite sizes but some consistency is still more than can be easily swallowed. Bruce also puts several bites in at once and I must monitor quantity. It invariably chokes him when he has more than enough in a meal. He also can not open his mouth very wide...and I see his chewing as slow and inefficient.I do also feed him. sometimes its just several different spoons with food each with a ready mouthful so that he can be alittle more independent ; or I just feed him... reminiscent of our own kids....
What to do for Holidays! Someone siad that grandpa will be a monster? I think maybe I will just enlist the help of the grandson....maybe they can feed each other? But the loud hawking will turn off the most hardy of eater....
It will be interesting on holiday. Others are very willing to feed C if they are here at mealtimes, to give me a break so hopefully you'll get the same. Just warn them about noise. Speaking of others helping, I had the boys overnight on Saturday. Their Mum was collecting them on Sunday morning as they had something on in the afternoon. They wanted to go to the park but it was raining and I said we would go if it stopped.A while later, the youngest, who will be 6 on Sunday, ran downstairs and told me the rain had stopped so could we go. I said yes and he replied, "We better go quick before it starts again". I told him it wouldn't be quick as grandad had to be helped to get ready and be hoisted into the wheelchair and I had to go to the toilet and clean my teeth. I ran upstairs to sort myself out. When I came down S was just buckling up Cs sandal. He had taken off his slippers and put one on already. He was being so lovely, talking to his grandad telling him we were going to the park, getting no response at all but chatting away happily. It bought a tear to my eye, a happy tear.
I find John the same , when he is alert responsive enough he will eat quite a lot ..
Normally has breakfast , porridge sometimes scrambled egg, .
Then he switched off for hours apart from commoding . And the next tablet . He mostly then isn't responsive enough to eat again until about 3.30 when he has dinner . The effort of that makes him tired and he switches off agin , he isn't responsive to eat much after that . Maybe on occasion .
The dietician has recommended I just hive yogurts , mousse etc in between .troubke is they are dairy products . Doesn't help the mucus does it .
I do find it hard to keep him hydrated as he should be .
Yesss to all of it....We are just now Going through the same thing!
AVB I have his own private table next to his chair and a thermal, lidded cup right next to him......I still have to remind him to use it!!!! takes more initiative with his taped books than he does his water!
What thickener are you using . We use thick and easy but the dietician visited lady week and is actor ranging for us to have a better one , will let you know what when it comes .
I hope it is the called resource thicken up. It is so good that if you thicken up a fizzy drink it keeps the bubbles. And the drink doesn't solidify if you leave it. Janexx
I can make a drink and take it out with us and it is still the same thickness a few hours later.When we 1st got our supply we played with it even tried it in wine and fizzy drink it is very strange because the drink doesn't change taste but is just thicker. I did a very thick wine (yoghurt thickness) tasted ok but difficult to get my head round. Brian has it in his bear when we go out for a drink.
Huh, I haven't tried thickener in anything but water I have offered it in juice or coffee but he says he doesn't need it.....it's our first can of Resource Thicken Up.....I have nothing to compare it to so.....but I am sort of curious to see how the fizz holds its bubbles with an 'intruder'
cabbagecottge, Right now not using anything but they recommended something called nectar consistency. I have a few packages but he is doing ok with swallowing thank goodness
The choking is also an issue here. We are trying to postpone pureed food as long as possible as C chews well and loves eating. As has been said previously we find when he starts to choke he needs to put his arms straight up in the air and do deep breathing. When it was very hot in the summer I worried he would get dehydrated as drinking water was such a problem. Now he mainly drinks 'ayran' (yogurt with water and salt) a traditional Turkish drink that is thick and which has yet to make him choke. he has not yet started to lose weight so we must be doing something right.
I confess I buy it ready made but if you Google 'Turkish ayran recipe' I'm sure you'll find lots. I don't know why the salt either but it works. It's an excellent drink, very thirst quenching and nutritious. Different brands here seem to have different thickness and people add more salt. You could just experiment in your blender with yogurt, water and salt and see what you think. Let me know how you get on.
I look forward to hearing about his reaction. By the way if he has a sweet tooth you could make lassi (Indian drink) which is yogurt, water and fruit spritzed in blender. India's yogurt drink is sweet, Turkey's is sour. They are both thick and nutritious.
Arayan (sp) is not salty....sorry haven't gone to store yet to buy the ingredients but I thought for sure the drink would be salty.....how is his mucus or saliva production on the drink?
It is salty and he seems to drink ayran much easier than any other drink as it is thick. C first started coughing and choking at the beginning of this year and is worse now. We feed him but he still eats same food as us. The choking gets worse as the day goes by which is probably related to tiredness, as mentioned in Heady's posts.
Perhaps it's tiredness that is making him choke, rather than the food it's self! I watch S struggling, he won't let me help, it must be such hard work. Having to think every move. You could try splitting his meals, as NannaB suggested, but give him a small time out, between "courses"!!!! Or even serve up, small different courses a each meal!
Yess Heady I agree... I am trying to be very aware of how much he puts in his mouth . Even though I cut it up, he may put in more than one bite at a time. He has difficulty opening his mouth, and though he says he does not, It seems as though he has difficulty chewing. But we worked very hard on swallowing and resting...breathing deep (with no food in mouth of course) and then a bit of liquid and then next bite. He choked after his meal which was about half size as usual. So I can see that a full meal makes him tired.....we have tried smoothies for supplement, but he choked on that too....I drank it and could not find any matter that would choke me........of course water doesn't choke me either!
Hit and Miss Eh?
AVB
Check out vitalstim. Only available in hospitals though I think. And very expensive, but I'll probably end up getting the training and buying one anyway. Not needed now for us but later perhaps. Good luck.
Thanks. I watched those videos interesting takes me back to bein a special ed teacher. Though I never used vitastim....It looks like these ladies were speech paths.
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Coughing and mucus build up remedy!!!!
A little help with food please
You are never prepared for it 😢
How many years did you have symptoms for before you where diagnosed with psp please
Firstly, I must say thank you to this community for all the advise and words of wisdom.
My dad was diagnosed with psp for seven years and I
