Can anyone recommend a text to speak device please as my dad’s speech got worsened so he can hardly say a word? I was wondering if there is any device that can help him type his thoughts and the device reads it loud. There are apps that could be used on mobile phones however he finds it difficult to use the touch screen since his eyesight got worsen as well so i am looking for a device where he can feel the letters on his fingertips and type easily without even looking.
Has anyone had any experience with such a device please?
Thank you!
Sending everbody a big hug,
Asli
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Aslin
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See if you can find the post by abilitydesigns about 5 days ago... she gave a whole list of helpful tools but I don’t know how to forward it to you. There might be some thing there that can help you. Best love and courage.
Thank you for letting me know. I tried to search the post in every possible way but couldn't find it. Can the someone or the admin help forwarding the post at all please?
We tried every possible divide for Ben but for him nothing really worked as his thought processes were to slow, even the voice amplifier had very limited use and was very uncomfortable to wear. I hope you have better success in finding something to help, the loss of being able to communicate is one of the worst aspects of these terrible diseases.
The loss of speech is devastating Katie. John just gets the odd word out and he gets so frustrated. He just about manages yes and no but cannot communicate his needs etc. When I went in on Frid his two front teeth were chipped but no one seems to know what happened and he cannot tell me or even remember. Now I have the problem of getting g him to our dentistwhich I don't know how I am going to manage. Hope you have a nice Xmaswith the family xx
It's devastating for you both, the frustration they must feel is beyond sad. There is a dental service run by the NHS that will visit the patient, Ben was referred by his CHC case manager but I guess the GP can refer too.
I am going to Bristol to be with my two sons, daughter in law and two grandsons for Christmas, I can't get enthused at the moment but am sure it will be fine when I get there. Getting motivated is the biggest obstacle for me, I find getting up in the morning a struggle but am fine once I get going.
During the 6.5 years in which we lived with PSP I have been collecting my own experiences and that of other members of the chat to offer this notes as a suggestion to those who are in previous phases of this disease.
If the document with experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail.
Courage and luck.
Luis
Below is the part of our experiences that relate to communication:
*Communication: 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.
Now we use 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. To say yes or no she uses now the fist and the thumb finger.
We have a part-time hired person to perform exercises, personal hygiene and dressing. Another person lives with us. Those two people help me a lot regularly and the children help whenever they can. Also we have some collaboration from close friends.
We found great help and information in the comments of the members of this great association: HealthUnlocked. Also the website CurePSP at psp.org/ is a big help.
Communication is a huge challenge in PSP. I have asked for a referral to regional communication SALT who specialise in Alternative methods of communication. We have tried a number of Apps text to speech but my hubby’s dexterity prevents this. Like others we do thumbs up or down and use a picture book on bad days. Frustration for my hubby is huge so really do appreciate your situation too. 🤞 let’s hope we find something useful
Aslin, my wife's voice is getting very soft and hard to distinguish. I have hearing problems and wear a pair of ReSound hearing aids. ReSound sells a microphone device that blue tooths to my hearing aids. Signal can connect up to 80 feet line of sight and decreases with the number of walls it has to go through. It has allowed us to communicate with more ease than before. So for a couple of hundred $ we can be in different rooms and hear. Some issues...battery only lasts 10 hours and background noise is transmitted with the voice signal.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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