Hi everyone,
I am wondering if anybody has a good experience with a communication device. I have been recommended Tobii technology but not sure whether it’s suitable for dad who has PSP with one of his eyes lost focus already and the other has semi focus. Here is a link for this device tobiidynavox.com/en-GB/devi...
Many thanks
Asli
Hi. Thanks for this link. We are trying to find something to to help mum communicate. Mum has little sight left and can't verbally communicate too well apart from yes/no though she can follow simple conversations we think. She has a communication book set up by the SALT team but we have little feedback from staff at the nursing home to find out how it is going.
Hi, no problem. I hope this can help your mum.
We tried an apple ap called "text to speech" on an I pad when Kathleen lost the power of communication.It seemed like a good idea but before long she lost interest.Have a look and see what you think.
Best wishes,Acorneater.
Thank you very much🙏We tried it but he couldn’t type the letters properly unfortunately. Best wishes x
Hi Aslin!
In the early stages, such equipment can work but not for long, since the mobility of the eyes in the vertical direction will probably be significantly reduced after 1 or 3 years from the first symtom.
This was our case and we had to dismiss a similar device.
Regarding communication, our experience was like this:
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
Hi Luis, thank you so much! You are an angel 🙏🙏 big hugs xxx
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