Hello
Does anyone have any tips on non verbal communication, my dad was diagnosed just under 2 years ago and can no longer talk normally we play a guessing game, use it wear it eat it, but that it getting increasingly difficult so have tried alphabet cards to spell the word but he loses concentration is also struggling with spelling. Help
There is an app called Verbally. If your father can see the screen of an iPad or some other tablet and he can press words. It might help for a while. There is a free version in the App Store to try it.
Thank you I will give it a try
We are getting by useing pictures.ie picture of cup of tea , glass of milk , hot chocolate, jelly ,cake .also for the loo, and names of members of the family. And I find printing out a page with things like , ,pain, , head ache, cramp, cut nails, teeth. . Tv, change the channel , music. PLEASE, THANKYOU. .The list goes on and on. add more and more , sometimes written words are enough , and then you may need pictures to help ,, the best ones are I love you..good night . Good luck,, ,Brenda xxx
Thank u
For awhile I was able to ask yes and no questions.
Is it about...
And then I would begin asking about different categories. Then timing, etc.
This worked until he started to confuse no and yes. Then we did thumbs up for yes and down for no. That worked better.
My heart goes out to you and I hope that you can find help here.
Communication and verbal issues was a phase that we went through for about a year and a half. Then hubby tried the Rivastigmine patch. Now he can talk and reason again. I wish this patch could work for everyone, but sadly it doesn’t.
I do understand what you’re going through. If I think of other tricks that I tried I’ll let you know.
❤️ SewBears
Thank u
I’m afraid we’ve resorted to limiting questions to a choice of two and asking him to put thumb up or down
I am in the same position with my husband, I have been looking at voice amplifier to try and get him to use his voice more but they are expense if not needed.
I like the idea of pictures when it gets really bad and patience runs out.
Good luck
Hi!
May I suggest you consult your speech and language therapist. They have communication aids from photo cards for various scenarios like food, personal care etc.
Your Dad can then point at them to communicate his preference etc.
Best wishes,
Mx
There are devices you can purchase that act like a picture book of images. Once selected, the pictures speak the meaning. There is also software available that does the same. You can search for AAC or Augmentative and Alternative Communication.
I have Android devices and have set up free AAC software called "Let Me Talk". I say set up because this software let's me add my own categories and words/phrases. I currently practice with it about once every 2 weeks on a 10 inch tablet. I plan to use it more often when I have more difficulty speaking.
Others have given you good suggestions. My only extra comment is, be careful how you word questions. Steve would always say No, if asked in pain, yet when a particularly good A & E doctor asked on a scale of 1 -10, how bad was the pain, he replied 12. He had broken his wrist in a fall! Another was, “are you hungry - No, “ “Do you want something to eat - Yes,” It was always using his thumb.
This is probably the worse symptom of PSP, the lack of communication. It will take its toll on you, or your Dad’s main carer. Make sure there is plenty of help around.
Sending big hug and much love
Lots of love
Anne
My wife (PSP) really struggles now to talk. Anticipating this we geared up with an app for my wife's tablet but never used it as she could not point at the pictures, then we found she could not see clearly. Items were fuzzy or jumped around. PSP is progressive and sadly all too often you set something up for the now and tomorrow it is of no use. We are at a stage now of thumbs up and thumbs down, but the slow movement makes me wonder how much longer we can go on with this means of communication. It is very stressful now for both of us. The lock down is not helping as family members are all 4 hours away.
My mum’s speech is very poor now, she gets extremely frustrated as she has so much she wants to say. We’ve tried an app called Claro on her iPad, helped a bit but she doesn’t use it unless prompted. You can put sentences in and it reads them out, but not as easy to use as it could be. Also use a letter card to spell word out, or she writes things down, though getting increasingly difficult as she loses control and strength in her hands. Thumbs up and down used frequently in common with other posts! Saw her last week for first time since lockdown as her care home has started pre-booked visits, lovely to see her in person rather than on a screen, but also very hard as couldn’t give her a hug when she cried on seeing us. Hope you find something that works for your dad.
For the last four years of my wife life . I got her a Tablet in which she could type out anything thing she wanted to. I also tied it in with the Nursing homes WIFI. That way she could go onto the internet when she wanted to. My wife could not Speak the last 16 months of her life. I know the tablet worked well. She told me it was a God send. and she could sent me a message anytime that she wanted to. You both have a hard road ahead of you. I wish the best along your journey. My wife had PSP
Thank you for all your suggestions I will be trying some for sure x
Hi Scoobydoo70!
These are our experiences in communication after 8 years suffering PSP disease:
One of the symptoms of PSP is that its speech becomes slower and more difficult to understand but generally its intelligence remains. I reproduce some reflections of Kevin_1:
“As the illness develops their mental processing becomes slower. That is they think slower, but they still think as adults and draw on a lifetime of experience and most likely using all of that wisdom which comes with it. So the way to speak is in a straight forward manner, not fast, simple language, but not slow as if talking to an idiot as in a movie, and to give them time. Ask them of they understand if it is complicated and if they want you to clarify anything. This is basic good communications practice. It works.”
On our case, 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.
Speak to the PSP patient as you would anyone else. When it comes time to ask a question try framing it to a yes or no response. It's not that the question is hard to understand but forming/finding the words for an answer may be difficult.
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.
Recently there has been an information related to ALS: Voice & Message Banking (Susan Mast ALS Foundation) that may be applied to patients with PSP.
youtube.com/watch?v=WCkjbiD...
Hug and luck.
Luis
I am afraid my mom (PSP) was just too tired to try sometimes. This disease is heartbreaking but there is hope as everyone here shares information. Sending hugs... Granni B
I’ve gone through this with my husband. First I made cards with both words and pictures of what he might need. It was never used. Then a created a large poster of the alphabet thinking he could point and spell. Another failure. Now my husband is completely non-verbal and thumbs up/down isn’t working anymore.
So...I made him a button board. I bought a Yes, No, Maybe and one customizable button (that I recorded to say “I need help.”) from Amazon. I think they are considered toys but they are large and colorful. I glued them to a clip board that he keeps nearby. Then I made a list of possible subjects he might be wanting to discuss and I offer up yes/no questions. He often hits the wrong button so I have to keep asking until I think I understand. I have tested him...Asking him to hit specific buttons and he is usually accurate. Not sure why it’s harder with other questions but all in all, with time and patience we usually get to an understanding. It’s the best we’ve got. He confirms with a “yes” when I ask him if he likes the buttons.
Word of caution- because they are actually toys the voice is loud and often obnoxious. But it works.
We used the GoTalk and it worked well for quite awhile. Alas, later on too much effort. But it's terrific.
Cuttercat
hope for communication
Speech aid
Help in Communication 
When communication is pretty much impossible
Communication App
