Communication

[redkilt]

I know I have seen something about communication aids on this site - brother's speech is now pretty incomprehensible and so frustrating for him to make himself understood and for the family. Heart breaking. Any thoughts/ ideas : cards, colours, aids others have found helpful ? Would be very grateful

[LuisRodicioRodicio]

Hi redkilt!

These are our experiences about PSP-RS and Communication:

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, the patient had problems placing the 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 the finger and keep it one the right letter. Another problem she developed was the inability to tap the 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...(Not working as expected?)

Hoping to be useful.

Hug and luck.

Luis

[redkilt in reply to LuisRodicioRodicio]

Very helpful, providing both perspective and great information to pass onto carers - much appreciate your contribution. So hard not to know more clearly what is going on for the loved one x

[Birdman42]

Hi Redkilt

I asked the same question two weeks ago. See below the replies that I had.

Alan

[Dorothysdaughter]

I had shared this earlier but we used this simple letter board made out of paper to communicate w my mom for like 2 years. We even used it w her doctors. Nothing else worked, iPads, Lingraphica devices, etc… this was a godsend

Letter board

[redkilt in reply to Dorothysdaughter]

Thank you . . . will get similar together and see if that works for my brother. xx

[Fjrose2]

I got my wife a tablet. She was able to communicate by Email or messenger almost up to the end. She told me it was a godsend to have it. I wish you the best thru your journey down this road of PSP.

[redkilt in reply to Fjrose2]

Thank you so much - we have a tablet (if can get the care home to work with it !!). Appreciate your response

[Fjrose2 in reply to redkilt]

I hope it works out. My wife spent the last 3 and half years of her life in a Nursing home and almost the last two years my wife could not speak. The doctors and the nurses ready liked it they could ask her questions and she was able to answer back. Good luck

[WindyGirl]

This disease affects everyone so differently. One finger up and down for yes; hand up🤚for no works for us. It helps to get an idea, like are you asking me to get you something? Pointing to the letters does not really work for my husband. Pointing to a “communication board” works occasionally. It has four words per page with common things he asks for, like Food, drink, TV, bed. If he points to food, there is another board with common foods he asks for. The most helpful for him, however, has been a small whiteboard and marker. He can’t type without repeating letters as mentioned previously, but he can print. He has to be reminded not to write in cursive, which basically looks like scribbles. But even with his lack of vision, he can print capital letters fairly legibly. NOT ALWAYS. Some days are just plain harder than others. Very frustrating for both of us. Good luck!