Help in Communication

[lilmisschris]

My husband Douglas has PSP. He is presently in a nursing home. The challenge is he does not speak clearly. He mumbles, does not enunciate words and talks fast. It appears he don't open his mouth very wide. It's to a point that people have a hard time understanding him when they come to visit. If you can get him to slow down you can understand a little better. He texts on his cell phone to talk to people instead and it's getting where he can't put a sentence together. His hand writing is terrible since the PVP has progressed. Is there a device or something available that could make things better for him? Thank you. Lilmisschris

[bazooka111]

I’m relatively new to this forum, but I completely understand where you are coming from. My mom has been diagnosed with CBD, and she doesn’t write anymore - she had beautiful handwriting. She has speech issues - I understand what you mean about mumbling — I took my Mom to a series of speech therapy sessions, until we felt we had enough. Now ... I have my Mom read children’s books (large prints) out loud a few times a week, and we work on volume, and enunciation; trying to keep those muscles active. I carve out time during the week, and play a few word association games... focusing on her speech and volume.

One day at a time ...

[Dadshelper]

Can you have him evaluated by a speech therapist? I know patients have benefited from the SALT program a therapist can teach.

Ron

[easterncedar]

It was a temporary benefit, but it was real and worthwhile for us to go to a speech therapist.. The exercises helped and it was wonderful to hear my sweetheart speak clearly in the immediate aftermath of each session. The word games the therapist suggested were fun for us, too.

[bazooka111 in reply to easterncedar]

Completely agree!

[LuisRodicioRodicio]

Hi lilmisschris!

This PSP disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

These are our experiences about 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.

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.

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.

Hoping to be useful.

Hugs and luck.

Luis

[lilmisschris in reply to LuisRodicioRodicio]

My daughter and I are considering the communication panels. When he texts people he had the problem of not removing his fingers fast enough. He gets the repeat of the same letter. So people don't get what he is trying to text them. I know we are heading down the road that the hand signals are in our future. PSP is such a terrible disease.

Thanks for your suggestions and input.

Best of luck to you.

[Y2U4]

Just got an IPad with an app called Touch Chat for my husband. It has sentences on it so all he has to do is push one button. You can add photos and sentences about the photos. It is through a program called voice point. I heard about it in speech evaluation....They test them to see which app is best. Then there is a test period of 2 weeks where they take it home and use it to see if is a good fit if not they can try a different app. After 2 weeks you have to take it back and apply for one. If approved then it is they give you the IPad and app for free. We are in the testing period. I love it. My husband likes it too. We are in California and we did this through Goodwill but there are other organizations that do this program too.

[Baytalon]

We were gifted a "G0 Speak" device that allows my husband to record words or phrases. He can then push the appropriate button and in his own voice say "Yes" "No" "I love you" etc.