Speech problem nearly completely Non verbal

[Morag1952]

My husband has PSP and am wondering if any one has recommendations for help with communication. It’s too late for voicebanks. We have an alphabet board which helps a little but I get very frustrated trying to know what Jim is trying to say. Anyone have any similar experience.

[Girvangal]

my mum is at the same stage. I’m lucky if I can understand 4 words in a long visit. Very frustrating for her and so sad for me. We have a communication board with a large green tick and a Red Cross on it for mum to point out ‘yes/no’. But even that can go wrong as her ability to lift her arm and then see accurately is also compromised. This is a terrible symptom of PSP.

I can only imagine how awful it is for mum.

Sorry I have nothing to offer regarding helping with communication; but I can totally sympathize with your situation. Sending love and strength

[Sawa]

Hi Morag1952,

The loss of communication is such an awful part of this disease. My hubby was non-verbal for a couple of years. We tried a couple of different things - having word / letter pages and trying to get him to point to words/letters. Unfortunately that didn't work too well for us.

We did try a couple of things though, with no one method that always worked:

1. We used the good old thumbs up/thumbs down for yes/no answers to simple questions. I did have to learn to break down compound questions into a string of yes/no answers for this to work. Sometimes I had to do a lot of guessing before I got a thumbs up that I'd guessed the right word/topic.

2. For more complex things, it actually worked better for him to 'write' letters on the palm of my hand with his finger one by one, and spell out words. It meant we could do this anywhere without having to carry the letter pages around, and actually it was quicker. As it was his eyesight that made it difficult to point to things on a page, whereas his brain knew how to make the shapes of the letters, this method worked for us for quite a while (I wish I'd discovered it much earlier in his illness).

3. We made up some simple hand signals for certain activities or phrases. For example, a hand above his head in a particular shape meant he was ready for his shower etc.

4. If you have access to a speech therapist, definitely try to make use of that service. They can help with breath support to keep the verbal speech going as long as possible, and may also be able to help with other ideas/tools.

5. I've seen 'buttons' that can be programmed with different words. So pressing the button will give a pre-programmed verbal output. We didn't use these as they didn't exist back then, but maybe something to consider? Not sure if anyone else has tried these.

Good luck!

Sawa

[Sun-flowerwearer]

Hi Morag,

I lost my husband to PSP aged 64 last August. I think about him constantly and our challenges communicating haunt me. My witty intelligent sharp man lost his ability to talk very early into the disease. We missed the boat too on voice banking and were given a laminated spelling board. Just because he has to spell things out the conversations became limited to requests and confirmations rather than chat. He also relied on thumbs up and down while it was possible. I did talk to him a lot and didn’t expect an answer but I wish I’d tried harder to let him try and communicate backs. He got so tired. It’s an awful part of PSP but we did communicate with looks and physical presence as well and the knowledge we had of knowing what the other was thinking. …now he’s gone the silence is different and deafening. Be present and acknowledge them often even if they sit quietly staring into space as they can hear you and are listening x

[Pspuser]

Hi Morag1952,

You didn’t mention if you have seen SLT (speech therapist). They should be able to help. At our health board (Cardiff) SLT referred us to EATS (Electronic Assistive Technology Service). They have provided a Gridpod, this is a tablet with supports. There are ‘buttons’ on the screen that can be programmed to speak various phases. ‘I need water’, i have cramp in the right leg’. As we use Alexa you can do ‘Alexa, television on’, etc. We haven’t used it much yet as I can still understand my wife most of the time. I’m not sure if, by the time the speech is gone she will still be able to touch the screen, however, it may be worth looking into.

[StockLover]

My husband's SALT team directed him to Speak Unique - a company who repaired then banked his voice. The company can design a voice for anyone who has gone past this stage. He was then directed to the Electronic Assistive service who provided a Smartbox which was personalised for his needs. We live in Wales where I believe there is good support for communication needs. PSPA may be able to suggest ways forward if the local SALT team cant. The machine has given my husband his voice back.

[Pspuser in reply to StockLover]

Hi Stocklover,

Are you in the Cardiff area? We have a small group who meet up for coffee once a month if you are interested.

[StockLover in reply to Pspuser]

Hi Pspuser,

thank you for the kind invite, however we live in North Wales. We do meet up with a small group every couple of months. It helps - dont feel quite so alone on the journey!

[Pspuser in reply to StockLover]

At least you don’t have to explain what psp is to the group. Good luck with your journey

[Harshacceptance]

I don’t have much to offer as we’re in the same position with dad who is 81 and has late stage CBD.

As it’s top of mind as we’re in CHC time again reassessing - there is a special bond between dad and my mum, they can still “just” communicate and I know it’s awful for them both as they talked a lot. The knock on effects are dreadful as he knows what’s going on, his anxiety flys up and the tremors get worse.

However in terms of the nursing vs social aspect of a CHC the role my mum plays as the primary carer is critical as she is the only one who he can reliably communicate with regarding his nursing needs. The knock on effect of that lack of communication and my mum being the only person who can understand him is a critical component spanning the health domains.

Dad had SALT and they offered things that didn’t really help, they were grasping at straws given how advanced his disease was / is. He has left side rigidity and a horrible right side tremor so any aids didn’t help. They are assisting my mum on aspiration as his swallow goes.

I wish I could offer you more, I really do. Everyone understands on here. This disease is so very cruel and brutal.

🙏

[LuisRodicioRodicio]

Hi Morag1952!

These are our experiences and informations on 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, 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.

Strugglingtohelp provides this interesting experience:

“A few months ago I got Amazon Echo Show devices (like an Alexa but with a screen for video calls) for myself, my sister, and Mum. You can set them up to support "drop in" video calls from nominated people, which we've done for just my sister and I. A "drop in" allows us to initiate a call to Mum without Mum having to press any button or say anything. It's been brilliant as a way to stay connected - even if it's just a few minutes a day. We have Mum's device set up near her favourite chair where she spends most of the day. Some days Mum can say a sentence or two, other days not, but I can talk and we wave etc. Mum was not technical and wary to begin but now has gotten totally used to having this little screen that either I or my sister appear on sporadically! We have a regular routine time to call now, and sometimes she gets my Dad to WhatsApp me to ask me to drop in. We moved to this after Mum became no longer able to talk on the phone, and then became unable to do fine movement which ruled out using WhatsApp even with the big buttons. She had an iPad that we tried for Facetime but is no longer about to swipe to answer calls, so I was really relieved when I found this Echo Show drop in facility”.

Zerachiel contributed this idea:

“It might seem a little odd but did your mum enjoy singing in the past? If so have a try at getting her to sing what she wants to say, like in a musical; Because it is not automatic speech it can work as it engages a different part of the brain.”

ncgardener799 contributed this alternative:

“We have made basic sentences on strips of paper and laminated which we punched holes in and attached to a large key ring. We used large bold print. Things like, I'm Hot, I'm cold, I'm hungry, I need to be changed, I need to drink. I'm tired, I'm in pain, etc.”

When verbal communication becomes impossible and even gestures of affirmation or denial with the hands, tongue, etc. represent a remarkable effort on the part of the patient and the caregiver, a remarkable range of groans and moans have appeared that the patient emits with great frequency and persistence, even in dreams during the night.

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 patient indicated.

Chart 1

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.

Chart 2

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.

"Doingwhatican" proposes a simple method of communication:

“Hand-squeeze and other techniques can be developed by people with PSP and carers working together to develop a system that suits them. In its simplest form the carer goes through the letters of the alphabet and the person with PSP squeezes his/her hand at the right letter. A more sophisticated version can be used, where a double squeeze takes you into code where one squeeze in each letter of the alphabet has a meaning such as: 'I am hungry', 'I am tired', 'Shut up' or other simple phrases that may be helpful…”

When all fails, sticking out the tongue to indicate "YES" can be a solution.

Hug and luck.

Luis

[Bergenser]

Luis has summarised most of our collective experience 😊.I can add that my husband would find it difficult to both find the words and to use his voice, so we often had to try to ask the right question and offer options.

Yes/no questions were always tricky - e.g. "do you have pain" would be answered "no" while "on a scale from 1-5" the answer might be 5 fingers in the air (in the case of a dislocated finger) - I forget which of our experienced members gave that advice - it was valuable.

So, avoiding yes/no questions, I might create two options at a time and represent each with a raised hand - my husband would point at the answer or sometimes just gaze at it - and if neither option got his attention I would have to generate fresh options.

"Is the pain in your chest? Or in your shoulder?

"Is it sharp like you have been stabbed? Or heavy like someone is sitting on your chest?"

"How heavy - like a tiny baby? Or a big elephant?"

If we failed to get a clear answer we might at least get irritation - or a giggle 🤭

When he struggled to open his eyelids, we would ask "if you hear us, wriggle your toes" - a fairly reliable way to check if he had fallen asleep or not - but not a reliable answer to any other questions.

Communication without speech takes lot of patience - for both parties - and not giving up.

I wish you the best 🌻🫂

[Rose1sunflower]

Hi, Morag1952 My husband also has PSP and his communication is rapidly disappearing. He wants to speak full long sentences but the words go into one long noise. I say give me ‘one word’ . From this I can gather if he is talking about the tv programme he is listening to or maybe something that had happened a while ago eg a medical visit a few days before. From this I can then ask questions and he uses the yes no card.

We have seen the specialist Speech Therapist who in turn is referring him to the technical side who maybe able to find an adapted iPad. These have problems as he has poor arm movements and his whole hand drags over the pad setting everything off or the finger stays on one section repeatedly.

My daughter found dog training buttons on Amazon and these are working so far! There are six buttons that you can record a simple message, I would like a drink, I need to go to the toilet, I want my book please ( a device from RNIB talking book). These buttons are colour coded so he knows yellow for drink but I have also stuck a label on it with the word DRINK. The buttons are large but easy to depress. It’s handy that there is a verbal component to it as I can hear it from another room and nice that you can hear it rather than the silence.

I find the silence horrible not being able to communicate/chat with him.

Good luck