This is a list of exercises B has to do 3x daily. the easiest is the "Beee" going from low voice shooting up to high voice. Hardest is sticking tip of tongue between front teeth and swallowing!!!
1.stick out tongue as far as you can count to three rest repeat 10x
2stick tongue out as far as you can press tongue against spoon to develop resistance count to 5, 10x
3 stick out tongue hold with teeth and swallow for 5x
4 "BEE" low voice to up up the scale...(You can feel voice box move up!) Make it loud ,10x
5 say "Guh" with a hard G sound such as in '"girl" . Say it hard and loud with short pauses in between 10x
6 Tongue pull back as far as possible.no air coming out of throat. sort of like Guh but no vocalization can be made.
7 Effortful Swallow Bear down again this time swallow like theres peanut butter stuck back there 10x
8 lay flat; lift head chin to chest, swallow. do this for a minute +. B does it when getting in or out of bed.
Well children these are all our swallow exercises. Amazingly, they go quite fast! and I have hope that they will help Bruce understand the dynamics of swallowing so as to put it in his conscious brain. I have 'taught' him how to relax when he is choking, telling him he will not die but he must relax and not aspirate.
He is getting better at this. Gasping for air when his mouth is full is more out of panic than necessity....So we must both not panic!!! I have tried the raising the hands over the head and surprisingly it works...I thought that was a myth.....thanks to whom ever brought that one up to topic.
AVB
Well it's noon now......and my phone alarm is telling us it's time to do the above....I feel so retro...using my phone for more than calling my kids how to do....something...
Keep Swallowing,
Written by
abirke
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I do not quite understand how those exercises keep him from choking. If the reason they are choking is because the flapper is not closing correctly, which is what we are told, then what do the exercises do?
No I am not a Dr....I just play one on___ unless of course you want to buy these tried... exercises (notice I left out "....and true"),,,Then for 19.99 a month I will focus on one particular exercise and assess the progress when you send me the patients progress chart....and maybe there's some snake oil out there we have not yet tried I could supply you with for an additional 49.99....That's American dollars....hahahahaha
I believe that When you strengthen the throat muscles, you help the epiglottis to completely close...but I will ask sp path that exact question....how does this help the epiglottis.... ?He did a swallow test and his epiglottis remained opened the whole time......
Unfortunately too late for C but I'm sure they will be useful for many. C did do similar exercises until about a year ago. One he found difficult was similar to the Bee one. It was more to help with his speech rather than swallowing. Take a deep breath and then slowly release the air by saying/singing Ahhhh. We had to time how long he could continue before his breath ran out. I used to do it with him and my Ahhhhs were a lot longer than his. If you try this, don't do it whilst driving. I did and nearly passed out as I was trying to be sooper dooper long. Not a good idea.
The last exercise was one my guy used to do regularly, and it helped his swallowing. Also swallowing with his hand on his throat so he could feel it happen. He had his assessment with the SALT today, and he swallowed the juice, the canned fruit, the applesauce and a bite of the granola bar perfectly. When he is mindful of his swallowing he rarely has trouble.
Exactly ! when they concentrate on anything, they can do it. Bruce is very good at swallowing when he is conscious of what and how much is in his mouth!
Exactly. I notice C does not choke on the rare occasions he eats or drinks in public. Clearly he is embarrassed at the prospect and thus focuses hard on NOT choking. But try to get him to do that at home!
My guy often chokes when we have company, which always upsets them. He gets distracted, and off he goes. I project matronly calm and control as hard as I can to prevent general panic, pat his back and tut-tut. All a matter of routine, don't worry, folks! So far I haven't had to try the heimlich on him!
Well, to be fair, concentration can only do so much and only for a while. If it were a cure-all I suppose we could have our dears hypnotized and fix it! Concentration is hard work, and it becomes increasingly hard day by day until it becomes impossible. All these exercises just slow the deterioration down and may keep the patient eating safely longer, may prevent aspiration events for some time. So for those who couldn't get their patient to do the exercises, or who never saw a SALT, it shouldn't be an occasion for blame or regret. Everyone's progression through this is unique.
Thank you for that easterncedar. That is kind of my boat. He will not cooperate on most all levels of this disease. I am very nice, say everything in a loving manner, tell him I am just trying to help him, and yet he still gets angry. So I am learning to roll with the flow. Ugh.
Stay strong Jmhk. I am not always loving when he laughs at me ....or when I am melancholy about something other than PSP and his consolation, "I want to eat etc..." It hurts....
S was given loads of similar exercises at the beginning, but they told him he HAD to do them at least three times a day, or it was a waste of time, so he didn't bother!!! I hate that sentence "I told you so!" But it's very hard to not scream it at him now. Hey ho! We are all guilty of not doing as we as we should! Hope you have better luck with B!
Sounds like my husband has taken the same attitude as your S. Speech therapist came last May/June and was to come back in Sept.
W has done his exercises just once and that was because I left them beside him and reminded him his review was due. Speech therapist hasn't appeared even though we left a message on her answering machine saying review overdue. Thankfully our neurologist has said he will follow it up. Nanny x
Don't feel too bad Heady. We did the exercises throughout the day but as the months went on they became harder and harder until he couldn't do them any more. I have wondered if it was worth putting him through it. They say if you don't use it, you lose it but he lost it anyway. The nature of PSP I suppose, but he may have lost it earlier without the exercises. He hasn't done the exercises for over a year now but he can still swallow, providing the food is liquidized.
I wish I knew the answer! All the things, exercises for this, that and the other, that I make S do, it's sooooo tiring. If I knew for sure that they were making a difference, I am very capable of nagging, dragging him along to do. But I am beginning to wonder! we have so many appointments, it's a struggle to fit them all in. This morning, is his day to go to his exercises at the Gym. But as it's the third appointment (11.30 am) already and he has the Osteopath this afternoon, we have cancelled! Still eating his breakfast! Got lunch to fit in yet! plus the district nurse is calling in at some stage! I am on my knees!!!
Colin's still has his sore on his bottom but it is very slowly healing. Now though, one side of his scrotum has become raw suddenly. I've phoned the DN but haven't heard back yet. By the shape of the tear, I wonder if the night carer has not positioned the tube of the convene properly and it has rubbed. He is back in bed now til late lunch.
Poor chap doesn't need this. None of us do.
Going up to finish rooms off for my brother, wife and their daughter. I always wanted to run a B&B. My grandmother and great grandmother did and our son has the Inn so I think it's in the genes but I've decided I don't like washing sheets and remaking the beds regularly for different people, as much as I love them visiting.
You obviously have a very tiring day. Try not to over do it too much (easier said than done I think).
Sounds as if you got a house full, as well this weekend. You have just reminded me, that's another job to do, make the beds. My son, wife and granddaughter are coming for the weekend!
Life is getting a "bit" much for me at the moment, with all these appointments. Trying sooooo hard to keep the diary empty, or at least down to a manageable state. But there always seems I have to fit in another emergency meeting. We have finally got the DN involved. Apparently she should have visiting once a month, since September. Came yesterday and had to immediately treated S for his bowels, so much for me not needing them. I was correct, they are there to help with skin and bowel problems. Ours were just refusing!!! Why do people have to add to our misery? as if life isn't hard enough! Or in your case,not doing their job properly.
Well, I have squeezed in an hours kip, now I had better get S his lunch and get ready for this afternoons mad existence!!!
We are in the same emotional boat today. (Everyday, everyone) but today If they cannot take this disease away, I don't want the help....especially the thought of my husband be unintentionally abused by an impatient inexperienced insolent care giver who only know they have to do this all day long with 3 other patients and they have their own emotional shit to add to the lot in front of them. I'm sorry for you NannaB
Maybe get some salve for his scrotum and don't touch it for a while so it can heal. and can you get him off his bum to let the sore heal?
He isn't supposed to sit for longer than 2 hours so I have to keep putting him back to bed on his side. Getting him in bed is easier than getting him up but thankfully my back has stopped hurting....elbows feel weird though.
I'm sorry. My elbows and mid back constantly ache too.. B is having difficulty getting out on his own too. And like ive noted before, when he sees the object (chair, bed door opening) he falls toward it as if it is going to catch him......it ussually does some on the mid back or shoulder!!!!
Have you tried pressure relieving pillows for when he sits...I went to google which seemed to have lots of pillows for that reason...Maybe he would not have to be transferred from bed to chair constantly...
He has one the OT provided but it isn't much good. They are going to get him a better one so we'll see. I'm also getting him a new chair for Christmas. He won't get it til after though as it is being made for him with, I think, a built in pressure cushion. I'm awaiting the chap to come and measure him. The SS won't provide another one as he now has to be hoisted so you don't need a riser chair if you use a hoist. I said what about lying back but that doesn't count. I'd get anything to avoid these awful sores. I think the year on steroids thinned his skin.
I know, right! B does not get up until 11am. waking him before that time and it will take him longer and with more dysfunction so I let him sleep....However, he seems relatively stable for Sunday morning church.....hmmm...But what I wanted to say is that by the time he eats, goes to the bathroom and his cigarette breaks, it's about 12:15pm...The morning is gone......And then he starts getting tired-er around 3 pm . That is a 3 hour window to do anything . If we don't go to gym by 2, he absolutely refuses.
Speech is at 1 pm until January! time Flexibility is a thing of the past. I am afraid when we get our 'time back', he will really not want to go to the gym, since he may already be getting that IDC feeling and is losing body mass due to inability to eat....Dr has been trying to get a hold of us. I think it's to suggest the PEG. B's quality of life, where it is now may increase, physically, but will his emotional state increase or at least not be depleted. If it were me no PEG...it's time to go. In another post yesterday , I said fight the good fight, and I was talking about depression...not nature....man knows how to keep the body alive when in nature it would die it's inevitable death. Nothing wrong with death if you are ready.....I know B is ready for sudden death but to be able make that choice...poor B....poor all the PSPers that can make a choice to PEG it and last a few more paltry years . Not paltry, miserable years.....Oh God I have got to get myself ready....to support either choice. Forgive me to those who have made the PEG choice...I am sure you have found quality of life with it, i do hope so.
Speech path is pretty cute....sort of a southern belle, a lot of hair with modern coiffure and lots of well placed make-up! And she's pretty smart tho she liked most of my ideas, "OH wow that's a good idea!!! I'm going to do that..." Maybe more flattery since I am in office while she tries to do her job and shut me up...I didn't interfere it was only after and I just told her what we did at home...Tho yes I could tell her how to do her job...ahahahah couldn't we all? hahaha. 6 years of college so you can push a button and say "guh"? I'm joking...(.she said jealously)...hahah
i think I mentioned before that in the beginning everyone kept telling John don't give up you must keep moving walking exercising etc etc etc .
He swam daily or at least in his lunchtime when at work and continued when he retired . That is until it wasn't possible /safe for him to do so . Was never afraid to walk . I could never keep up with him .
When he started struggling wenwouodngo out walking together until in the end he would als,soy be crawling . Two men had to carry him home one day . His legs gave out completely . It neatly killed me while supporting him . I don't think it helped in any way at all , it was inevitable .
He would insist in walking to the GP to get his INR done and we would crawl to his appointments with consultant . I have a bad back neck and shoulders as a result ,
If we had the time back over I certainly wouldn't have. Struggles as we did .
Nanna , push to get the ceiling hoist or hoists , will make yr life so much easier . When you do get it is when the mirror with light will come into its own .
I am still using the dressing as a preventative method for the sore bottom . tHe D Nurse agrees and had supplied extra for me .to use .
Let us know how the new chair turns out . jOhn had one custom built luckily through social services a few years ago now .
You are right you don't need the riser then but make sure unless it's too late to get one where the back moves independently . That way it makes it easier when putting the sling on when you need to commode .
I wonder if they mean you will be able to place an air cushion under the cushion part . ..Johns has been made where you can remove the one on there to put an air cushion instead .
Let me know when you get the hoist and i will explain how I make it easier for me to handle myself . .
Can Colin move at all . bH that I mean can he raise his back of th chair pull himself forward so that you can slip the sling behind his back . . Although John moved very little he still has some strength ,in his arms , that is if he isn't in a frozen mode . ..
He has been dreadful today . Head down and switch which affects his swallow breathing , his mouth jaw distorted . Asleep or switched off most of the time , difficult to get the response to give his meds safely or eat .
It's no company is it . My regular carers. Rang me to say that one had a sit to go to and the other didn't have anyone available to be with her . They oils be sending two others , she named them and I was happy .. Did they arrive NO .. I am sure it wasn't their fault , just bad organisation . Often when they come there isn't a lot to do because I had already commoded him .
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