Does anyone here have the issue of the PSP sufferer having lost the ability to communicate verbally? Dad 72 recently diagnosed with a very aggressive variant. Literally feb 2019 walking slightly unstable to now wheelchair bound unable to walk talk feed himself etc. We brought him an iPad with a text to speech app on a very big typeface screen. Worked well for a few weeks but now he is so unsteady with him hands and also can’t control where his fingers hit the screen it’s taking ages to just type a couple of words. He’s still got some awareness inside and just can’t express it. This is now leading to huge almost like temper tantrums which is very distressing for all. He goes rigid shakes violently and screams Noooooo at the top of his voice. Last night this lasted for nearly two hours after he’d been helped to bed by the carers. Supposed to be a nice time for them both and turned into hell. He just can’t coordinate or speak for any of us to understand. He’s trying so hard to say something you can tell that much
It’s heartbreaking to see and so distressing for everyone else
Has anyone else come across this problem and found their ways to deal with this ?
We are desperate to try anything that might help
Thank you
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Cazash
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This really is the worst part of PSP, my husband couldn't talk for nearly two years. We tried everything, iPads, etc., the last thing I used was a white board, with magnetic letters, first he could move the letters, finally just point and I would place them. Mostly we communicated through sign language, well thumb up or down and pointing and good old ESP. I understand the temper tantrums, although Steve had his before the diagnosis, by the time we knew, apathy had set in. All you can do is, tell him you love him and hold him as tight as he will allow.
We are at that stage and it is so frustrating for all. Our Speech Therapist helped us to make 3 lists on one side of a sheet of A4 paper and had it laminated to protect it from spills etc. which we now find useful. The lists are:
1. Names of family and friends.
2. Phrases that my husband used regularly: these are a few examples.
What are we doing today;
I would like some tea / coffee.
I want to lie down.
Who was at the door / On the phone
3. Health/Wellbeing.
I'm feeling hot / cold.
I need the toilet
When is my next appointment
I'm not feeling well today.
On the reverse side we had the alphabet so we could spell out words. Also added some comment boxes like,
It starts with the letter....
I've made a mistake
I'm not finished
Don't know.
I've forgotten it.
I hope you find some way of easing the situation for all. Best wishes Nanny857x
Thank you. We will try this. Glad to know that we are not alone. This is such a devastating illness. Totally knocked us all for 6. Coping as best we can
I hope it works for you. Keep posting here and you will find lots of support to help you through the not so good times and lots of helpful advice and tips. You are not alone. ❤
Yes. That is really helpful - especially the detail of exactly what is on each side. I will copy this and get it ready. (Ruth is still verbal but it is getting more difficult and she is not going to use the tablet computer when her speech goes - that is totally unrealistic with these movement disorder diseases.).
Hi Richard, W is very interested in football, Man United (we all have faults😂) and our local team so we also have comments like, who won the match; what was the result and who scored. So add your wife's interests and any comments/questions she uses regularly.
W tried an iPad and other speech devices with keyboards but he kept hitting 2 keys together so not suitable. Hope you and your wife are as good as can be with this awful disease. Best wishes Nanny857x
Keep talking , ask short questions, and give time for a response. It is slow and you have to look hard, but a reply comes in some way. Patience is the key because they know what they want and they get so frustrated with their body.
The worst part. I found it so hard to accept. Chris had difficulty in pointing as he tired trying to focus.
I agree in leaving lots of time for the reply to come.
When he became almost unable to speak we used hand squeezes , thumbs up and lots of guessing. Our GP was really moved by how I could communicate with him. A mix of guessing and having spent 56 years with him. But of course at it's best it's communicating needs. I so missed discussions from quite early on.
Have you tried a picture board? It has various pictures of things and he just needs to point, touch or whatever it? Pictures of things like a toilet, glass of water, pain symbols on different body areas, food, bed, etc...
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
These are our experiences about communication after 7,5 years living with PSP:
"We intend an App but It was not possible to use it for more than few months. As her dexterity deteriorated, she had problems placing her finger on the appropriate word or letter and we were able to buy a plastic screen cover that had an opening for each key on it; this helped to direct her finger and keep it one the right letter. Another problem she developed was the inability to tap her finger in a key or letter, and as such she would often have several letters in a row. For example if she tried to tap the letter A, it would show as AAAAA because she could not get her finger off the letter A quickly enough.
Some have successfully used for some time a cheap iPad plus free software text-to-talk program called Claro (claro.com) with a BigKeys keyboard that attaches to the iPad through an Apple device that is used for connecting to camera to an iPad . A voice comes from the Claro program. It's like a GPS voice.
On our case we have used a plastic laminated A3 sheet with the alphabet in large letters (40x40 mm) supported on a music stand at the height of the patient's eyes. She points to the letters and another person writes on a blackboard the letters that she indicated.
You can also prepare "communication panels" with the alphabet and some pictograms that patient can be marked with a pointer. Up to the present time it is the best system we could find. Over time the pictograms become useless and it is necessary to use only letters, as large as possible.
The communication with a patient of PSP is one of the most difficult problems to overcome.
When the patient can still verbalize it is important to know that saying NO requires less muscular effort than saying YES.
When verbalizing is almost imposible and the “communication panels” don´t work, to say YES by showing the thumb from the fist and saying NO by hitting the fist on a surface could be a solution. Alternatively taking the ”more active” patient´s hand and establishing that a squeeze is YES and no squeeze is NO.
There will come a time when the answers are slow and even erratic. In this case, it may be better to prepare the patient and tell that you are going to ask for a response later to a question that you are verbalizing at that moment. When the disease progresses, the response is slower, until making a thumb gesture or squeeze your hand may need at least 20 seconds.
To write down a big YES, NO on a sheet of paper and the patient could point to the correct one seems to be a good alternative.
When all fails, sticking out the tongue to indicate "YES" can be a solution.
Loss of speech I find one of the worse symptoms of PSP. We used to use thumbs up or down for yes and no but that has gone. John can sometimes just about get yes and no out but hard to distinguish which. You just have to be patient and give him time to get answer out. Tried a board with magnetic letters but that did not work for us neither did an IPad. John gets very frustrated but is never violent. Pauline x
It makes me extremely sad to hear the repetition of all that happened to my wife and our helplessness at the time! The only thing we can do is to do physiotherapy to keep her joints supple. Finally PSP cut off the senses one by one and she couldn't swallow and had to have a PEG tube fitted, and an Oxygen cylinder kept active by her side, but she finally aspirated with excess of phlegm and God mercifully took her!
Mum is in the latter stages of PSP and manages a slight nod for a "yes" (sometimes) and even this is becoming difficult for her. I know she understands everything I say as cognitively she is unaffected. Her hands are always clenched, so asking her to squeeze my hand as a form of response is not possible.
It's unfortunately another awful symptom of PSP and probably the cruelest one of all.
I know I haven't been able to offer any suggestions, but just knowing you have people here that can empathise and support you, I'm hoping is some sort of comfort.
Yeah, it's very frustrating for him and everyone caring for him, my late husband had this , we asked him to do thumbs up for yes and thumbs down for no. This all he had in the end. Dreadfull ilness, hard to watch. God bless you all.
Yes, thumbs up or down and instinct, were the signals we used for P, although not always successfully !
Frustratingly, when we were preparing for our local CHC appeal, I asked if the SALT would visit P in the nursing home for an up to date assessment (she had tried microphones, words or phrase cards etc already). Her report shocked us all - family and care staff - it said she had shut herself in his room, just the two of them for an hour at 5pm and she had a "long conversation with him that showed understanding of her questions and appropriate responses." I`m sure her report went some way against our appeal but when I left messages asking how she obtained responses that stunned everyone who dealt with him daily, she wrote saying she `had not intended to give that impression`.
Hope the good days are now out numbering the bad ones. W is almost into his 6th year and yes it's getting tougher. However this forum is a great support and it was lovely to meet some of them in person last Friday. Take care and lots of love Marion (alias Nanny857xx)
Hi Cazash yes my husband can’t speak much now so worked out a plan 123 if he puts his thumb up it’s hes ok that’s the one if he puts 2 fingers up it’s I need you !
maybe toilet or drink or something
if he puts 3 fingers up it’s I’m in pain or help me !
Hope it helps at least it narrows it down a bit and you can ask what he wants 😀
Just to reiterate what everyone has said before. This was the worst part of the disease especially with my wife. She loved to talk. When it was taken away, anxiety, frustration, and anger increased. We tried many of the things above and they worked for a short time, but I think the most important thing like Anne said above was for you and your family to continue to communicate even if you husband can not. This seemed to calm my wife the most. While it is difficult to do, dont allow yourself to be frustrated with your husbands inability to communicate.
I hate this cruel disease. Cherish each moment with your husband no matter how difficult this disease makes it.
Wishing you strength and wisdom at this stage of the disease,
Bobby. Thank you for your kind words. My mum is really struggling to understand him now and he very easily goes off into what I can only describe as. Temper tantrum like a 2 year old. Mum finds it very difficult to remain patient hen it’s an endlessly repeated moment!!
We will hang in but his deteriorating is so quick literally 4 months to date that what works this week is no longer working next and so on
Everyone else has addressed your question about speech pretty thoroughly so I'll stick to the violent outbursts. My husband for a period of time, reacted to his frustration with violent shaking and his face would turn dark beet red like all of the blood had rushed to his head. When this happened, I feared that he would have a stroke. However, on the other hand, he was so apathetic that any show that he cared about anything was almost welcome. Mostly this happened when he was frustrated with me because I couldn't understand what he was trying to communicate. Between his loss of eyesight and use of his hands, it was almost impossible to communicate reliably with him. I hope that you will be able to figure out some way to communicate. We never were able to do that and it still haunts me. I think it's the worst part of PSP. We all certainly understand your frustration. Hugs to you.
Are you in the room? This is exactly what dad does ref the shouting and going bright red etc. Like you the worry is his blood pressure is going to be high and impact somehow. But we really struggle to calm him as it’s vicious loop. The shakes are almost uncontrollable so he can’t use iPad.
I know the frustration of not being able to understand. I can't even begin to understand the frustration of not being able to talk anymore or at least use my hands to somehow communicate what I want or need.
Whilst we carers sometimes go to hell and back trying to get through one day to the next it's probably nothing like the hell our loved ones go through trying to make some sense of what's happening to them and being unable to verbalise their anxieties, fears etc. My husband lost his battle with PSP last October and the last four months of taking care of him was challenging to say the least. He would get so angry and lash out when I or the carers tried to help him with his personal needs, often yelling and using bad language. This was not him at all - he was the kindest, gentlest man you could ever meet and never ever used bad language - I often think that he would be mortified if he were able to come back and be told about his behaviour. I believe that his actions were the result of that he just couldn't understand why strangers were coming in to wash him, nor indeed why I had to attend to all his personal needs as well - I don't think he realised his brain had let him down so badly - he thought he was still capable. He just lost the ability to process what was going on, which I think must have been terrifying for him.
I'm afraid that as things progress we just have to accept that's the way things are - in the late stages there's not always too many answers.
All I can say is just make sure you talk calmly to your dad, hold his hand, explain to him that whilst he can't communicate you are all still there for him. Include him in everything possible and try to get friends and family to visit regularly (I do realise that friends and family can keep a low profile with things they can't/don't want to deal with) - just try to keep things as normal as possible (whatever normal is when dealing with this hideous disease). Remember, whilst he can't communicate he is still very aware.
I'm not sure this will help you, just my thoughts from my experience, but I do know that my husband felt loved right until his last breath, which gives me some peace during the grief journey.
Absolutely, not all but many do, my brother now into his 9th year cannot communicate at all he try’s so hard to talk but can’t understand him at all we ask him slowly different things and help him try to repeat it we may get a couple words we understand, mostly we have the thumbs up for yes and down for no, what’s sad is there ie really nothing wrong with his brain he knows what is going on just can’t talk anymore, one thing I am sad about I wish I would have recorded his voice, so many symptoms come on gradually and before you know it what they could do a week ago they can’t do it anymore. When my brother started with the walker, to t
My husband is now unable to communicate with thumb up etc. I have tried a Yes and No card and tried to see if he could move his foot to the answer but he cannot. I will try the tongue suggestion above.
Sometimes when we visit he hardly acknowledges us but when we take his two and a half grandson he watches and tries so hard to communicate with him. Alexander (grandson) is oblivious and accepts granddad can’t talk. Gives him his toys and tries to put things in his clenched hands.the wonder of children. He runs into my husband’s room showing a latest favourite toy and talks. It cheers us all up. Fortunately my husband has a very gentle nature which makes our lives easier but no matter how hard you try and prepare yourself it is so, so hard watching your lovely husband deteriorate.
One problem I have now is finding a wheelchair that’s suitable. His head is now so far forward and seems locked. Has anyone found a wheelchair. We would so love to be able to take him into the gardens. Recently a company bought a wheeled armchair to try but sadly it wasn’t right. I don’t want him
to feel we aren’t doing all we can. Fortunately he is in a fantastic Care Home, more like a hotel but I feel guilty that I am in our home. My health is now suffering so there is no alternative.
For my future well being, when I've lost my speech, I've been looking into AAC. It's Argumentative and Alternative Communication. You can search on google. It's communication by picture mostly. It's used with non-verbal children and adults but the pictures are geared toward children mostly. There are many cards that can be printed out or purchased. I've read of many that put them in a binder with tabs for easy look up.There is both Apple and Android software available that speaks for you and most of it can be modified for standard phrases and sentences they may use. Though I've hopefully some years before loss of speech I have already begun playing with the software to set up my own well worn phrases.
That is such a positive approach to what will undoubted be a very difficult phase for you. Guess it gives you the time to get control of your communication needs
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