Hi All. We have reached the PSP stage where My Margaret can only speak in a very quiet slurred way and is almost incomprehensible. I have been looking at communication aids from ‘letter boards’ to ‘flash cards’ to ‘AAC or Augmentative and Alternative Communication devices and apps’. Everything I see has pros and cons and I wondered about your experiences?
I am a bit of a techno file so AAC devices and apps intrigue me but most are aimed at children. I have seen in previous ‘chats’ the AAC app ‘Let Me Talk’ mentioned but it is only available on Android and we use Apple. Is there any AAC app or device that anybody would recommend?
I’d love to hear your comments
Thanks. Alan
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Alan my wife Anne too speaks similar to Margaret. My wife is at an advance stage. Both Anne’s hands are alien & can’t do much. The eye sight is also testing. If this helps, I ask a series of open questions, do you want the bed raised or a drink etc. after about three or four attempts I get to the need. It can be very exhausting but I’m happy as I’m communicating with Anne. I don’t know how much time we have together, every day is a bonus. If other people have any good ideas that have worked them I’d like to know. All the best Alex
Hi Alex. Thanks for the support. My Margaret is not at an advanced stage yet but her voice appears to be an early casualty of the disease which for us is terrible since we used to talk and discuss into the early hours. Patience is something we must have in abundance. My thoughts are with you both. Take good care. Alan
My wife is similar in that she speaks softly and with a heavy slur. Very difficult to understand and especially at the end of the day when her "sundowner" symptoms kick in. Her eyesight is also going so don't know if visual clues are going to work in the future. Anxious to hear if there are any other "solutions" out there.
I tried all sorts of devices with my mom including a Lingraphica medical device. Nothing worked like this board made out of paper. We used it for years actually to communicate w my mom.
Hi. Thanks for the reply. I must admit that I am beginning to think that the simple solution may be the best at least while Margaret can still move her arms. Alan
We are in the UK, I'm not sure where you are based, but we had a referral to a Speech and Language therapist that specialises in electronic communication devices.
The first one they provided allowed Dad to type what he wanted then press a button to have it read out. The second type is a tablet they programmed with words and phrases for him to select based on our suggestions and needs.
The first type definitely gave us a greater ability to converse, although it could be time consuming, it gave Dad the freedom to say whatever he wanted to.
Unfortunately my Dad is in the advanced stages and his deteriorations have been rapid- his dexterity and tiredness meant neither device were suitable for very long at all, however I do wish we'd been introduced to them especially the first type, at a slightly earlier stage as losing his voice was something Dad found very hard.
We are UK as well. I will talk to the SLT to see if they have heard of the devices. As you comment the deterioration can sometimes go quite quickly it’s not nice to see.
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.”
For a time we attended sessions with a speech therapist until the disease progressed and no advantage was obtained, at the same time we combined it with exercises at home with a "Breather" (you breathe with some force in and out through it and it has adjustable resistance). Martina_MP uses a free app (great for iPad) called TalkPath Therapy by Lingraphica which has easy to follow speech and cognitive exercises.
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.
It was very thoughtful of you to go to so much trouble. I feel bad not replying before but it’s just been one of those weeks where when I have had a few minutes to spare I have just wanted to flop and shut out the world. Alan
Lingraphica has a series of free apps called SmallTalk for those who can still use an IPad. But with my mother we have used picture boards the most. I took pictures with my phone of her own bed, her toilet, the TV, outside, etc and put a sheet together on Word or PowerPoint, and put the printout in a plastic sleeve. A yes no board is also helpful unless the person gets yes and no mixed up, or always points to a dominant side. Now she has difficultly pointing,and can’t get her hand to indicate any answers. Occasionally I can get her to blink for yes. It can be very hard when one can’t get consistent answers. Try all methods! Some will work better at different times.
My mums voice was the first sign of stmptoms about 5 years ago now. Over the last 18 mths is become very difficult and over the six months really we can only be sure of yes or no, bye and a very laboured goodnight. She does try but it's hard, I pretend to get it and ask her to write a word for a clue. She definitely is following everything and we keep her updated on everything like we always did. Her face says a lot. The communication aids haven't worked out very well and I think it may be sheer bloody mindedness thay stops her using them. We struggle on. I hope you find something that suits yourselves, its just about muddling through really for us and being there. Take care xx
Loosing the voice is so hard we used to have such wide ranging discussions. I can see the frustration as Margaret cannot get out the words to make me understand what she is thinking. Simple yes/no may be practical but it does not cover a lifetime of communicating. All the very best to you. Alan
Hi- my husband Mike (psp since 2017), is now not able to form words and we just use yes/no questions to determine his needs. “Raise your hand if it’s yes” follows the query and that seems to work, at least for now. Who knows tomorrow!
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