Swallowing

Recently my husband is finding swallowing very difficult. I am using Thick and Easy for the liquids and he has a soft diet. He also seems to now produce large amounts of saliva which soaks his clothes. I am particularly concerned about the small amounts of fluid he is getting each day. Any suggestions on how to improve the situation. (My husband was diagnosed in 2013 with PSP but was initially diagnosed with Parkinson'sin 2008).

89 Replies

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  • My guy is getting a botox injection in one salivary gland next week for excess saliva. I am not greatly optimistic, but the neurologist thinks it's worth a try. Lots of folks here have dealt with this. There are drugs, including atropine, that may be appropriate. His GP was reluctant to do anything along those lines, because of side effects. if you do a search on this site for saliva, you will end up with lots of information. Good luck. Easterncedar

  • Hi Easterncedar, does your guy have a PEG fitted? My hubby can't have botox because he hasn't got a PEG. I'd be interested to hear how he gets on and if it makes a difference. I hope it does.

    X

  • Hi

    My husband is due to go into hospital next week and hopefully will have a 'rig' fitted to help with fluid and food intake. However, I am not certain this will take place as they tried in April and failed to get the nasal gastric tube in place despite trying for over 2 hours with my husband getting increasingly distraught. Apparently this needs to be inserted so they can see where the stomach is, prior to fitting the rig.

  • Hi AMJ4 - Is your husband having the rig fitted directly into his stomach? My mum had a stomach rig but didn't need a nasal gastric tube before peg was fitted.

    Mum had scopoderm patches to ease secretions (but long term these cause blisters on the skin). You can get scopoderm injections. Thinking long term you may need a suction machine, as the secretions can lead to aspiration pneumonia if not controlled.

    Take care

  • As far as I know he does need the NG tube inserted by a nurse before he can have the rig fitted directly into his stomach. The medics all think it is a good idea for him to have the rig, so I have agreed as i have power of attorney for his health and welfare.

    Oh dear, the disease keeps on springing up new surprises. I hadn't appreciated the dangers of the saliva.

  • Hubby had an x-Ray to find the correct location to fit the PEG?

  • That sounds very sensible.

    I have asked if my husband could have the NG tube put in radiologically instead of by hand following the previous traumatic experience, but have been told that I can't. I guess they will do an x-ray to check the tube is in his stomach rather than his lung as it was when they put in the NG tube in February to help feed him. It also took 2 doctors and the following day the Sister to fit the bridle to secure the tube in place! What worries me is that he just cannot swallow when the nurse asks him to swallow and she does not understand why he can't no matter how many times I attempt to explain the reason. Exasperating and very distressing. Anne

  • Hmm..I don't understand that. I wonder what the connection is? No, my guy has not yet got a PEG. He doesn't choke much so far and is fairly robust overall. We are talking about having it done while he is in such good shape, but it is hard to want it.

  • The way the replies line up it seems as if I'm questioning AMJ4's situation, but I was wondering about NannaB's hubby who can't have botox because he doesn't have a PEG. I am very curious about the reason for that. Nothing was said about that by the neurologist who is arranging this. at the same time my guy is to get botox for one eye that keeps closing.

  • I don't want to worry you Easterncedar but the doctor at the hospice said it was because the injection could cause paralisis in the mouth which would mean he was unable to swallow. The PEG would enable him to feed. I had read on the net that it shouldn't be given unless a PEG was fitted but no reason was given. I asked the doctor and that was her explanation. You know what these side effects are like though, even if they are very rare they are mentioned. If you took notice of all the side effects listed in a packet of tablets, no one would take any medication. I'm sure if you ask the doctor about it he will say there is nothing to worry about.

    X

  • Hi NannaB

    I think I'll wait until my husband has had the rig and then see about the drooling. He is much better today,drinking and eating quite well and hardly any drooling.

    That's how it is with PSP, one day up another down. As you say make the most of the good days. Anne:)

  • Thank you for your good wishes. My husband can't have atropine as he also has a heart condition. I'll ask the GP about botox.

  • H AMJ4 ,

    My sister has PSP, diagnosed in 2012 after the typical misdiagnoses. Elavil which she is taking as a mood elevator has a side effect of causing 'dry mouth', which for PSP sufferers can be very helpful in dealing with the buildup of saliva. It can be taken in the morning , evening, or both as desired or necessary and might be worth trying . I've read other posts on the site re: the use of a patch placed behind the ear and also the use of atropine drops. Elavil seems to be the most benign ( fewest adverse effects ) of possibilities that I've seen. There may be other options available also. hope that this helps !

    Warm regards,

    Elise

  • Thank you, Elise for your helpful comments. I'll ask the GP about Elavil as I know not to use atropine. I'll also ask about the patch behind the ear.

  • The only thing the speech person could help us with is this," small, short, quick sips." For whatever reasons, no straws ( would think that would be an easier way to manage amount) and nothing from a bottle like sodas....I can see that....the flow is much greater when it comes from a soda bottle .....We don't use thickeners but do try to maintain flow with short quick sips.......B's swallowing is difficult but he still eats most things....maybe not as much spicy......What I cannot seem to instil upon him is the amount per bite....way too much...those are my only thoughts on subject

    Goodluck AVB

  • Thank you for your reply. I do try to give little sips at regular intervals and sometimes he can swallow and at other times he holds the liquid for ages in his mouth before swallowing or the liquid just trickles out. My husband also bites a lot on his food which is always soft. I can hear his teeth grinding, but at least I feel he still has the muscles to chew! I'll keep on persevering.

  • I use thick and easy for my husband and make drinks the consistency of runny syrup, thin enough to draw through a straw without too much effort. The speech therapist told me not to use a straw but I've ignored that advice as he rarely coughs if the consistency is correct. Rubicon, a mango juice drink, is the correct consistency and I don't have to thicken it. As my husband uses a convene, it is easy to check his urine output and he still manages to produce a lot of urine so presume his intake is adequate. I put drinks in a glass mug with a metal screw top that has holes in. Kilner makes them but now you can get them in garden centres and pound shops in the UK. The straw stays in place as it fits in one of the holes in the lid. I give my husband a mug of tea before breakfast at about 8 am. Breakfast and medication it can take over an hour so before cleaning his teeth he has a packet cappucino as they only require a little thickener. He has Rubicon or thickened fruit juice at about 12 noon, tea or cappucino at approx 3 pm ( he signs what he wants). He also has a drink at about 5 pm before our evening meal and another before he goes to bed. I don't give him milky drinks anymore, unless we are drinking in a restaurent, as it makes his saliva very thick and mucasy. I know cappucino is milky but the packet mixes don't have the same affect. I tend to give drinks before meals as I found he was too tired to drink afterwards apart from at breakfast time.

    We have tried many things for the excess saliva but it is still a problem. To save clothing a bit, I have bought from the Internet adult bandanas. Clever people would be able to make them but I don't like needlework so bought mine. He wears about 4 a day but they do stop his shirts getting wet.

    Hope your day is good.

    Nanna B

  • Thank you for your detailed response and helpful suggestions Nanna B. I'll certainly make sure I give my husband a drink before any meals, to maximise his fluid intake. I'll look out for the mango drink too. My husband has 'ensure' milk drinks, which I am trying to change to the fruit juice type to help lessen the thickness of the saliva, although it usually is quite clear and thin. I had't thought about a cappucino drink, worth a try. I have bought some adult bandanas, which work quite well, although due to D's chin being almost on his chest it is difficult to stop the saliva/fluids dripping onto his clothes.

  • He really enjoyed the cappucino and drank almost all of it, 200ml. Made a change from coffee with pro-cal.

  • Wow NannaB, You have put alot of effort into making things good for you and your husband. We all have . B does not produce alot of saliva but we do go through alot of paper napkins. We had bbq yesterday and if you have ever tried to wipe bbq chicken off your fingers with a paper towel, you know most of disintegrates upon first usage. So I gave him a moist wash cloth.....MUCH better.....may use this much more often as he goes through so many paper towels per meal!

    Well I haven't had my morning coffee yet so I'm off!

    Is today the "party?"

  • Baby wipes work great and are more inexpensive that adult wipes. Use for incontinent cleanup as well.

  • Yes I get through several packets of baby wipes each week. Should have shares in them!

  • Whoops! Reading this very late at night, no, very early in the morning so party over I'm sorry to say. I do hate it when paper towels stick to your fingers after eating BBQ chicken. If you can't get to water you are picking little bits of greasy paper off your fingers for ages aren't you. Yuk! I now go everywhere with unperfumed baby wipes. I don't know how much I spend on man sized tissues, toilet rolls, kitchen towels and baby wipes, I just know it's lots.

    X

  • Well just think, we are keeping someone employed by the exorbitant toweling we must purchase!;)

  • Yes, I agree. I also buy J cloth type cloths but the very cheap ones and throw them in the washing machine. They last a couple of washes and don't leave the bits like tissues do. For catching food and drink, not blowing noses!

    X

  • I hadn't thought about washing the J cloths. another handy tip and saving money too!

  • the bandanas are good and look nice , especially if still able to go out .

    I will try the packet drinks Nanna any particular make ? anyhpthing to make life easier . by the way our assessment is ongoing , Has a call yesterday to say will be coming on 18th August !!

    I will also be very interested in hearing how you get on with Botox . It's the one big thing that affects John . he is unable to grasp tissues easily and bring it to his mouth to wipe . I am up and down all down . it worried him so .

    he cannot tolerate the Hyoscine in any form by mouth or patches . he has dreadful reaction to it . that's not to say every will get that . we have tried everything else though other than the Botox.

    Nanna I use a mug with a lid which I can place a straw through the spout . have you tried to the larger straws bigger holes . I cut them to the most suitable length . I get them In the RANGE . Do you have THE RANGE ! I hVa eat be careful but it doesn't need as much effort as the smaller straw . .

    depends how John is he manages better somedays than other .

    AM14 . I to worry if he is getting enough fluid , the same goes for food . they are also coming to measure John to see how much weight he has list they cannot weight him because he is hoisted . Not sure how that works . something to do with Body Mass !

    Nanna I asked about the weighing Rampsbut they don't seem to have them .

    I find John will drink more if I flavour the water . The sense of taste goes same with ability to smell . I give him stronger tasting food as well .. Bought some Complanand I give him one on days when he isn't eating . EE try anything don't we , Can learn Al lot from Nnana B ...

  • Thank you Cabbagecottage for you reply. I was told by the speech and language therapist not to use a straw, but I have been given the ok by the GP to use a 5ml syringe to give my husband fluids, 1 ml at a time, when he struggles to sip. However this only works when he can swallow, otherwise that too dribbles out. My husband seems to prefer drinks which are quite sweet now, although prior to his illness he had no sugar in his tea or coffee.

    I agree, Nanna B is a fountain of knowledge.

  • sorry to preach then SMJ4 , Lol. U know I wasn't.

    Yours appears a bit more advanced than John . Although he has dats like test day when he had very little . I make the most of the days when he is more able .

    I am sure you have also done so .

    just Reading Gerkos post that is just what is happening to John the mouth Jane tongue becoming distorted . Dyskinesia , dystonia or side effects who knows really .

    I will remember the syringe . it's not all the swallow is it so complex .

    john never added salt sugar or anything very strong but for quite a while before diagnosis he would say I hadn't added any salt . I would put it in while cooking but add some as I put it on his plate .

    I certainly can get him to take more when tastier .

    it's such a worry isn't it trying to do the best you can for them

  • I agree it is very difficult at times and some medics don't seem to agree with others which makes it even worse e.g use of a straw. We can only do the very best we can for our loved ones as we are the ones with them 24/7.

  • You are right , Most of the consultants Gps and nurses have told me that I know more than them . that's true in Johns case anyhow

    the consultant also told me to get in touch with as many others as I can , that way will find the best way around it .

    of course they should at least know more about the medications than us but not the affect it might have .

  • AMEN...we are their best doctors! We must try it even if the whole world (two somebodies and a therpaist) says no

    I think I will give this site to B's neurologist....maybe he will get some insight....

    AVB

  • I like the idea of flavored waters....can you get them that they are not packed w sugar or diet sweeteners?

  • Hi Cabbagecottage, I actually use three different width of straw, depending on what my husband is drinking. He doesn't like tea very thick so I give him a very fine straw so he can't drawer very much up at a time, for Rubicon mango juice I give him the normal straw and for Cappucino he usually has the thick straw. I think we do have the Range here but not near us. The wide straws initially came from the hospice. They were using them for soup but I did manage to find them in a shop later. You are right about the taste changes. Colin used to hate sweet drinks but now he wants lots of sugar in tea and sugar. He has always liked more salt than he should have so he has about the same now. Let me know how the body mass weighing goes. They did say they could do it by measuring the top of Colin's arm but then decided on the scales. I'll be interested in knowing how it goes.

    X

  • he Bev . what a hot day It is beautiful but I am afraid I am hiding from it . too hot for me . our house is a ver warm house .

    john has been a lottle better this last fortnight that a first for a very long , I and putting it down to this months mess contained His sine met plus I the oval shape it was at the first .

    we have been getting a small round one for ages .

    I am probably wrong of course .

    how is Colin's drooling.

    john s is dreadful .

    his throat is thick and he cannot clear it and he is drooling constantly it pours out . he tris to use a tissue to catch it . it's constant . he cannot tolerate the meds the meds they use they cause hallucinations .

    I have tried all the different drinks . I keep mopping and cleansing his moutht . it drives him crazy and I get so upset for him , worry because he is also losing more fluid that way as well .I am up and down mopping him up .. is Colin the same as this.

  • Yes, he is. Last night he was trying to clear his throat of liquid all night. We have both slept nearly all day as had very little last night. I had to change his top in the night as it was soaked. It was so hard trying to get him changed. I put a flannel under his top and a towel on top to soak up the moisture. I have bought adult bandanas from the Internet and he uses about 5 a day. When he is in his chair I put a towel across his chest.

    He doesn't use Sinemet any more but when he did, sometimes they were round and sometimes oval. I now put drops under his tongue. I didn't think they helped but when I forgot to give them to him one day, he had even more saliva. The speech therapist said she was going to speak to the GP about getting a pump to take the liquid from his mouth but nothing has happend yet. I'll let you know if we do get one.

    We have stayed in all day today. It seems such a waste of sunshine but it was too hot outside and we needed to sleep. I did think of sleeping outside on my giant bean bag under the umbrella but a nest of flying ants decided to take flight from our patio and there was wave after wave just where I would sleep.

    Tomorrow I have a sitter and I am taking an old collegue to lunch who I haven't seen or spoken to for about 10 years. She found me on Facebook and got in touch. Before being a collegue she was a pupil where I worked and whilst quite young she married another ex pupil. I'm looking forward to hearing what they have both been up to.

    It's our 43rd Wedding anniversary on Wednesday. My brother and sister in law are bringing in a Chinese takeaway in the evening. I'll cook something else for Colin but we can "celebrate" together. He last bought me a card on our 40th anniversay when one of our sons helped him. I saved it and have put it out again on our last two anniversaries. It will go up on Wednesday, along with the recycled one I gave him. It is strange seeing his handwriting again. I hope your week is as good as it can be?

    X

  • we sound so alike Bev , I have been buying lots of flannel . I get them in home bargains places like that .

    I did buy the bandanas bug use the flannel now , easy to wash John is trying to wipe it all the time and his mouth is moving constantly to try and control it . doesn't help the bottom dentures either makes them slip .

    An Colin suck a sweet safely .When John is raised in bed or chair when his mouth is thick and he cannot cleat the throat I find if he suck a fishermans friend it helps a little.

    he was much worse at night I would really frighten me he couldn't breath . A little better since I stopped the Neupro pach . . please let me know of any luck with the pump although during the day it would be all day .if he could just let it go would be easier for him but if it's thick I suppose it's difficult for him ..

    hope it's not S hot tomorrow . our lounge is extremely hot . I really should move his chair into the other room but he is so familiar on this room .just too can hot .

    I put an oblong umbrella up outside the window to keep some heat out . I bought it year ago in one of the first ever hypermarkets . The best item I have ever bought only cost me £4 .

    I hope you have a better night tonight Bev , John hasn't been too bad at night although this morning he told me he had buzzed four times I I hadn't heated him . Said he need the commode . . not sure if he dreamed it or I didn't hear . I usually do . I wish I could sleep downstairs with him .

    I put him to bed myself tonight earlier he needed the commode so was already hoisted and I knew he would be better in bed . he is troubled sort of piles. , his ski is very sensitive and I keep dressings in can use for his bottom any sign of it starting to break down I put one on

    he has what looks like blood spots sort of piles around his bottom and the bleed such a difficult place . not so bad if he is on the bed and rolled . But on the commode not so easy .

    I manage by using a mirror and one of those small lights that u can stick in a cupboard . I place the mirror under him .. I can see better that way . I have to learn now how to try and take a photo of it !!!!!!!!! Lol. I can show the district nurse or district nurse when the come next ,

    I find Sudan crem the best thing . For healing but use Bepapnthem as a barrier I noticed that u use a different one .

    enjoy you day tomorrow Bev and your anniversary , ours is in March will be 58 years . If we make it that is . going to really try hard to . can't believe it's so many years can you .

    the mirror is another tip for the book lol night all .

  • Dear AMJ4, unfortunately this is not going to get better. However, as with so many other issues, there are way and means to alleviate the problems and delay the progression. First of all, it is not just important, but critical that PSP sufferers are getting speech therapy. The problems you describe are as a consequence of the tongue and larynx getting affected by the condition. And speech therapy exercises the muscles which is critical for being able to swallow properly.

    In addition I have come across a methodology developed in the Netherlands for children and adults that loose their voice. And that is a very simple and basically cost free exercise: blowing bubbles. Basically you take a beaker with water and a straw and then for one minute say every hour if possible, the patient needs to blow through the straw until the water bubbles. You may want to read up on it on the following website:

    speech-language-pathology-a...

    I discussed this with our speech therapist and she thinks that this is a very good idea, because basically it exercises the tongue and larynx. In the beginning you may find that blowing through the straw is difficult, but after a few days it gets easier.

    This in conjunction with speech therapy and other exercises will improve the situation. unfortunately it is not a cure but it may help for some time.

    Another issue is bone density. Because the increasing problems with mobility, the normal mechanism for breaking down old bone and generating new bone (which is an on-going process) the balance is shifted to breaking down more bone than regenerating bone. That process is called osteoporosis. If not kept in check, there is a high risk of fractures due to falls. There is one way of reducing the loss of bone density and that is supplements of calcium in combination with vitamin D3. There are also options for injections of Denosumab once per month subcutaneously or once per year of infusion of zolendronic acid. The latter two treatments are interfering with the process of calcium recirculation, in other words reducing the breakdown process of old calcium (bone). However there are potential nasty side effects and I personally would not recommend to go down that route.

    There is another option, be it a costly one, namely equipment that exercises the body which is not longer happening due to reduced mobility. That is by using a vibration plate. Power Plate is the recommended brand and is used widely in gyms. you can have a look at the following website:

    fitness-superstore.co.uk/po...

    Here are some of the benefits using such equipment:

    'you can experience a host of benefits including improved blood circulation, increased muscle strength, bone mineral density, flexibility, motion and faster recovery'.

    Hope this helps. Gerko

  • Thank you, Gerko for your reply. We no longer have a speech and language therapist, but all she did was say he needed thickened fluids if he coughed and to make sure his food was soft. She has never suggested any exercises. I'll get onto that straight away. The other suggestions will need a bit more thinking about and investment. I very much appreciate your helpful suggestions. Thank you.

  • The big misconception about speech therapy is that one thinks its all about speech. The other most important aspect has to do with eating and drinking. Swallowing. A speech therapist that does not know this and does not do specific exercises is no good.

  • Yes thats what I thought! My sp. therapist at school did some things with the kids that were more for trainging muscles and she would stimulate a nonverbal by stroking the inside of her mouth and tongue with a flavored stick. Don't worry student could not bite these sticks in half....though she could snap other stuff pretty easily!....all in a days work...speaking of, are you a sp therapist?

    AVB

  • No, I am not a speech therapist. I saw an article about this bubble blowing which was recommended to singers or speakers losing their voice. And with this simple exercise they could restore their voice. I then started to research this on the Internet and came across articles from the Netherlands where they used this with children that stutter. Blowing bubbles is the first thing to do. Then there are other exercise, humming at the same time, etc.

    The problem with speech, but also swallowing is that the tongue and larynx do not work properly. and those very simple exercises are stimulating again the muscles. One typical test is holding a slither of paper in front of the patient and then ask to blow at it. And you will notice that in the beginning you need to hold the paper strip quite close to the mouth as the patient has difficulties blowing, due to muscle problems. As you exercise, this gets better ad you can hold the paper strip further away from the mouth. When blowing with a straw into a mug with water, you create resistance, so it is in the beginning even more difficult. And then of course the idea is to have bubbles coming in a continuous stream until you get out of breath. In the beginning you tend to get bursts, uncontrolled. So you can easily see and understand how this very simple exercise can help. And as the patient can control the blowing of bubbles better and better, is affects also the swallowing. I would give it a try and if you see some improvements after say one to two weeks, then you know you are doing the right thing. But it is important that those exercises are being done regularly and at least 4 to five times per day. Good luck.

  • I have done the blowing through a straw exercise with my husband and humming. Unfortunately now he often blows his drinks instead of sucking. I have to constantly remind him to suck. We still do the humming but now he can only manage a few seconds. I don't know if by doing the exercises it has helped or not but we have to try everything don't we.

    Our grandchildren love it when grandad drinks and they laugh, which makes him laugh. The three year old did tell him his mummy gets cross when he does it though.

  • I think I need to ask for a different speech therapist. Although she is the second one as his original therapist stopped working with my husband once he was diagnosed with PSP, rather than just Parkinson's.

  • Cute! oh grand kids....your husband blows his drinks ? is this during choking or has he forgotten which way to take in liquids?

    Keep Hummin,

    AVB

  • Yes he forgets how to suck. He is so used to doing the blowing exercises, every time he gets a straw in his mouth, he blows. Once I remind him he is usually OK but usually have to remind him a few times.

    X

  • Oh i See....executive function....Isn't it wierd the things we think are just stuff we do....we don't have to think about it therefore, the brain doesnt' have to think....but everything we do needs the brain to take action....everything....

    My mind is being boggled by its own ability, responsibility, and worth....one of these days it's going to take over and I'm gonna do something like remember passwords from years ago! and snap one finger horizontally while snapping and moving the other finger in a linear pattern....I don't have many ambitions hahaha

    AVB

  • Thanks for making me smile. The brain does work in mysterious ways. I can remember my dad's car number he had until I was seven but I couldn't tell you the number of the car sitting on our drive now. Weird!

  • I can remember most of the telephone no's when I was a kid. I can remember many addresses (as I had many) from childhood. I walked into my daughter-in-laws house to see my future daughter-in-law sitting there and did not recognize her, S#*! It was just a glance but still.....C0q10 where are you!

  • I'm telling you what , I feel like I just read an article in Prevention Magazine !

    You sound VERY WELL INFORMED! My sp therapist refused to work on B's swallowing said it wasn't her job.....never got an excercise only the short quick sip thing. I can see this bubble thing becoming a game when our young lad comes to visit! being able to control the larynx, does one need to hum? or just blow? My husband has a real hard time controlling his air flow when speaking. He is at the end of his breath(?) when he answers so there is really no air mixing with the words, if you will. I tell him to breath but like everything else you must say 90 times a day I usually only get 70x instead!

    We often go to the gum , but I havent seen this bone density apparatus....There are so many old people at this particular establishment, it sounds like something useful for all of us! I make my husband walk as much as possible and he has good strong bones (as one can tell by the holes in the walls and metal implements bent like foil from his falls! hahaha but still making sure all supplements such as calcium are being well utilized in the body is a necessity.

    Thank you for your most interesting post....I will check those sites out!

    AVB

  • gum should read gym sorry!

  • Cute, abirke! I thought maybe chewing gum was a therapy and was about to reply that my husband chews gum a couple times a day. :)

    Okay, every one chuckle now!

    Jeannie :)

  • And blow bubbles with it !!!!!

    X

  • I don[t kno why I get the fancy to reaed my post AFTER I send the thig....I do a qick edit and one leter off may slipe rigt thrugh my figners! sotty

    AVB

  • LOL!! That's okay. It's just your brain running two words ahead of your fingers. :)

  • But I can still read it fluently so as long as the first and last letters are in the correct place, it doesn't matter which order the others are in.

    X

  • If you can still walk with your husband regularly, he should not have as yet problems with bone density. The problem starts when he is becoming less mobile and basically can no longer walk reasonable distances.

    My wife had excellent bone density, but a recent test at the hospital following and fall and fracture of her collar bone, showed that her bone density has reduced significantly. I was shocked. Her collar bone so far does not want to heal, which is directly related to the fact that her body is breaking down bone more than it is building. It is now 3 months ago that she had the fracture. So that is why I started to research how to help her and hopefully find a way to stimulate her healing process.

    As she no longer can walk properly, the Power Plate option seems to me the only alternative left in combination with calcium + vitamin D3 supplements.

    I have not as yet made a decision regarding the equipment, but I have consulted two masseuses I use for my wife and the both agree that this might be very useful. My son who is a strength coach originally suggested this to me and he is finding out more about it.

    The stupid thing is that we should have thought about this much earlier, but the GP's, the physiotherapists at the hospital never mention anything of it. Same problem with pain management and avoiding muscle wasting and contraction. And checking with osteopaths whether / or not due to falls skeletal issues have occurred. My wife had excruciating pain in her right leg following a fall. The only ting the doctors would do is prescribing you pain killers, which make the situation only worse. By visiting an osteopath and having intense massage, we completely overcame the pain. This is now two years ago and it has not come back. However, my wife gets each week 3 hours of massage. Without that, she would have been by now a cripple and in constant pain. But I have to say, it is not a cheap treatment. And the NHS does not support any of this.

  • Hi Amj4.

    I agree with everything everyone has said, but I think you are reaching a point that my wife reached in Jan this year. She started choking and coughing on all food and drinks. It took an hour for each meal though fully puréed and drinks would last a day moving progressively from milkshake to McDonald's shakes to jelly constituencies. It took 6 weeks to get a speach therapist ( SALT team) swallow assessment, her recommendation was to get neurologist to prescribe Glycoperronium bromide 1mg 3 times a day, this was great dried up saliva immediately but effectiveness is wearing off and she is drooloing and choking again but only late in day. They said M had gone too far for Botox treatment and it was not always successful.

    The other thing the SALT team did was to refer M to a dietician and nutritionist. That took another 2 weeks, they weighed M and found she had lost 2.5 stone since New Year, she was using more energy to feed than in the food and that she was seriously dehydrated. They immediately put in a nasal gastric tube to provide food and water and 6 weeks later a PEG. Though time restricting 4 to 5 feeds a day every 3 hrs (think of baby feeds) M weight has stabilised and she is no longer dehydrated. M decided she wanted the PEG, and has not looked back. A PEG is extra work for the carer and a constant worry of an accidental removal of the tube. M is naughty sometimes at night playing with the thing but it is usually an itch that must be scratched.

    I use a child's mug to catch the drool and an old terry nappy as a neck bandana. PEG is a major decision as it means a type of forced feeding so ensure partner is happy with it.

    Your description of not getting enough fluid rings alarm bells as dehydration is a bad thing for anyone let alone a PSP sufferer. Easy way to check dehydration, dark coloured urine and lack of sweating. You need to check his weight if you think he is losing weight get a therapist in ASAP.

    Sorry to preach but swallow and saliva problems are major symptoms of PSP progression. So you need to get some medical help.

    Best wishes Tim

  • Hi Tim

    Thank you for your concern. My husband is going into hospital on Monday to have the rig fitted on Tuesday hopefully, which will improve the amount of fluids and food he takes in each day.

    It is only within the last few weeks that he has struggled so much. I feel he has lost a lot of weight, but there is no way of weighing him at home as he is unable to stand and when he goes into hospital they just ask me how much he weighs, they don't weigh him, even though I have asked several times. I think he weighs about 7st now, down from 9st 7lbs in 2013.

    He has been admitted to hospital on 3 previous occasions for dehydration over the past year, since being on thickened fluids, hence the neurologist and dietician have told me he would benefit greatly from a rig.

    I am worried about administering the fluids, food and medication, but I am going to receive training once the rig is fitted. He will stay in hospital a day or two after the procedure, so I will have lots of opportunities to become confident, hopefully.

  • Hi Amj4

    Margaret had a Rig fitted in April. I was concerned about feeding but they held my hand and the district nurses visited each day for a week to check dressing etc helped. I find it a bit of a chore but it is now one of the few times when we have a bit of intermicy very therapeutic. From experience, one bit of advice that will save a visit to A&E, is tape the tube to your husband's tummy after each feed. It saves the tube catching in clothing and pulling out which is a major panic and messy. It will tie you down similar to looking after a baby feeding 4 -5 times a day but much better than chokes.

    Good luck best wishes Tim

  • Thank you, Tim. I think I'll need lots of support and tips to get through the first few weeks, but if it helps him regain some weight and stop the possibility of dehydration it will be worth it. Just hoping he is not too weak for the operation and that he will get through it successfully. Anne:)

  • Anne

    They were similarly concerned about M'S weight so we were on a nasal gastric tube feed for 6 weeks which bulked her up and rehydrated her. So I got used to using a syringe to feed her. Some funny experiences like covering a district nurse in Ensure feed when she distracted me while pushing in the food, amazing what lifts the spirits now.

    I am happy to feed Margaret every 3 hrs, but I have remembered the nutrition nurses did offer me an alternative to bolus feeding which was a pump feed which would run all night putting in the feed automatically, you may find this easier for you. It will probably need more District nurse contact.

    I also against advice give M a little taste of jam/honey end of teaspoon amount but gives her some taste as she is missing tastes.

    Good luck next week and If they offer help take it. Hope All goes well. Tim

  • Thank you Tim for your good wishes. I'm wondering whether they may decide to use the NG tube as a feed to get his strength up before putting in the rig. I guess I will have to wait and see what they say on Monday when they see how thin he now is.

    Anne:)

  • Good luck

  • Good luck Anne . New mountains to conquer. Once you reach the top, you see that the view is pretty fantastic and you realize , it was so worth the climb!

    Goodluck and God Speed.

    AVB

  • Thank you. Anne:)

  • You're so sweet Tim, considering intimacy during your wife's "meals" . We kiss each other good bye and goodnight and sometimes I just have to demand a hug, which he gladly provides but does not initiate. I suppose if he asked for more , I wouldn't know what to do anyway hahah...

    Thank you Tim I am crying right now but and I don't even really know why....I just read a whole love story.....

    AVB

  • We use a suction machine, a bit like the dentists use. LSU Laerdal Suction Unit. Hope this helps.

  • I was just thinking if there is such a thing for the home....is it portable? or must he go to it to use?

    AVB

  • Yes, it is about 12" x 12" we got one. Great bit of kit. Just google it.

  • Sounds really helpful. Will look into it tonight. Thank you.

  • Hi, what country are you in. I've asked the hospice about a suction machine several times and they said they would look into it but haven't yet.

    Nanna B

  • NannaB I have discussed it with the SALT team today 6 monthly visit they pointed me to the district nurses for either manual suction, sounds like a pipette, or a machine like the others are talking about. Best wishes Tim

  • Thanks Tim.

  • Hi,

    There's nothing I can add to what everyone else has said, my husband has the atropine drops and uses a one way straw for drinking tea and coffee. The speech and language therapist advised thickeners in his drinks but he won't drink them, says tea tastes like tea flavoured soup, must admit it does look a bit yucky!

    I have started making him fruit smoothies and they seem to go down well, bought myself a smoothie maker and the first time I used it the smoothie went all over my kitchen and me! (I hadn't screwed the lid on properly!)

    I agree that some anti depressants cause dry mouth, so that could be worth looking into.

    I do hope this site has helped you, it's a difficult road ahead and we all try to help each other in whatever way we can,

    Very best wishes....Pat xx

  • Hi Pat.

    I haven't thought of smoothies. I've got a blender and lots of fruits, so will try tomorrow for breakfast, will make a change from weetabix or porridge, followed by scrambled egg with ,melted cheese.

  • hi all don't forget that an ice block or icy pol or whatever they are called in your country can probably help if he has trouble swallowing he wil have to suck a small amount from it but its worth a try peter jones queensland Australia psp sufferer and it moistens the lips

  • Hi Peterjones, what does it do?....it's a bit of ice that you suck on or is it a machine or a med?

    Hows Australia saw a global heating map your country has to deal with rising ocean....I think California is a bit hotter ...unless its a crop an animal of sort (human included), you can't water it!

    Oh well stay cool,

    AVB

  • hi a birke yes mate its just water and some cordial in it im not into global warming yet mate its only 9 am here but your right we have got some problems but its the smaller islands I worry about peter jones queensland Australia psp sufferer

  • Peterjones your island is wonderful...I don't even know why that popped into my head!!!! I used to live in Hawaii. Kona side. my favorite place was Mauna Kea (the mountain had snow on it!)!! My son was in NZ for several months said the stars were amazing . I would love to go down under to see the universe from another side of the world!

    PeterJones you need to write a A Day In the Life of PSP or something like that.....I encourage you and others on this site who have this disorder to write about experiences with PSP ! Ya'll have so much to share with those who are trying so hard to make life good and safe and healthy for their mates. Tell us what you feel, need, want.....Tell your doctors what you fee,l need, want.....As we get more educated, and less misdiagnosis are made....we will need more first hand knowledge .....Just a thought or dare I say imploring...Have a great day. B is walking like he's in on a trampoline......But we got to hang with the kids so its all good

    AVB

  • Thank you for the tip. I'll go to the freezer now! Anne:)

  • hi ann you can put some cordial with it to make it a bit more inviting than just water peter jones queensland Australia psp sufferer when you frees it

  • Even better tip. I'll make some now. They should be ready when he gets up. Thanks. Anne:)

  • He loved the smoothie and drank it easily. Will try again today. Thank you. Anne:)

  • Hi Anne,

    Glad he enjoyed it, I also make milk shakes which Keith enjoys, just use ice cream instead of yoghurt!

    Love....Pat xx

  • i found using pinapple it dries it up

  • When my wife, Roisin, could no longer swallow food in any form or drink liquids, and her weight dropped to 41kgs, she decided to have a PEG fitted. She was fed by pump at night over a 9 hour period. So the torture of regular unsuccessful mealtimes ended. I believe the night feed also helped her to sleep. All her medication and drinks were given via the PEG, three times a day - about 20 minutes each time.

    Of course we all know there is not cure for PSP; Roisin died last October but the last 15 months of her life were eased by the PEG.

    I wish I had known about blowing bubbles, that might have made a big difference to her speech and swallowing for a while. And we never solved the saliva problem; Scopoderm helped but was becoming less effective. Skin damage behind the ear led me to place them on her shoulders and secure them with plasters; I was told they would be as effective there as behind an ear.

    Good luck!

    Barnacle

  • Thank you. I'm hoping the rig is successful this time. Anne:)

  • Give him zolpidem 12.5mg ER. Look for the clinical trial done by Sandeep dash in California. I have my mom taking 1 pill in the morning and and an hour later her swallowing improves 10 fold!

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