I am a Senior Occupational Therapist at Abingdon Community Hospital , UK .
I have recently met my first patient with progressive Supra Nuclear Palsy.
It was not possible to understand him due to his inability to make clear speech.
However, when I put a pen and paper in his hands he was able to attempt to write down what he wanted to say. The words themselves were almost impossible to read – however, when I asked him to say the words he was trying to write, he immediately said the words crystal clearly and without hesitation. We are now able to fully understand him and communicate with him – more excitingly so is his wife!
I wondered what research has been done in this area and would welcome a conversation with someone who may be able to enlighten me??!
Best wishes
Rob Padwick
OT Supervisor Ward 1/2 and Outpatients Abingdon Community Hospital
07801 151980 / 01235 205599
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RobPadwick
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My husband had PSP for seven years. Sometimes he had difficulty with his speech but other days he would come out and say things that were crystal clear and made a lot of sense. I think it might have been due in part as to how well he felt within himself that day. Interesting to note also that although his mother tongue was Italian, his English was very good. However with PSP he had great difficulty with his English. I would be glad to talk to you but I live in Elmbridge, Surrey.
I am not sure what research has been done in this area but I do know that a person with PSP processes information much more slowly than they may have done previously. It is therefore possible that by giving your patient a couple of chances to formulate his answers he was then able to articulate them clearly. In the end it doesn't matter how it works as long as it does!
I am sure the PSPA nurse will be able to advise you further.
Rob, How wonderful that you are taking the time to come here to find out more.
My dad also has PSP and has been given an alphabet board (quite literally a piece of laminated card) laid out in the keyboard qwerty format with WRONG at the bottom left and SPACE on the right. Dad also cannot utter a single clear word, but a couple of weeks ago got the laminate out and was able to point to the first letter of each word he wanted to say (e.g "H"ow "A"re "Y"ou "T"oday) and by doing this can also sound a lot lot clearer. Its amazing and wonderful, but totally baffling. It obviously forces him to stop and consider each word and obviously slow down, I can only assume a different part of the brain is used when doing this. If you like I will see if I can get hold of a copy of his board. I'll scan it in and put a link here and then perhaps others might get some benefit.
Also, Dad can't write either, but the Ipad has many apps that have drawing pads, or whiteboards. If dad writes with his finger on the whiteboard, he can write clearly but each word is huge! Also worth knowing.
When you have time could you please let me have more information about the laminate alphabet board you have for your dad. It sounds as if it would be really helpful to my hubby, Tony, who has started to struggle sometimes with his speech. Where did you get it from, please? If you wish to email me my email address is kinsey32@blueyonder.co.uk
Hope you have continued success with this form of communication and please pass on my best wishes to your dad.
Hi Suzie, Mum and Dad are coming over tomorrow so I'll scan in the board if they bring it over. However, I just had a quick look on the net and found something slightly similar here: - (paste in to your browser)
Its a slightly more detailed version here but similar in concept. Dad points to the first letter of each word he wants to say. It's printed out and laminated. Simple, but tiring after a while as Dad does need to concentrate hard to do it. Hope it really helps you.
My name is Elizabeth Wray I have MS and I am training to be a health psychologist at Nottingham Uni. My friend Faye Reddington is running the london Marathon next year to raise awareness of PSP. we both want to learn more and I am helping Faye raise awareness in YorKshire to raise sponsership.
I am interested in how this on line support helps the person with PSP their carers and families and the professionals.
I am really interested in your thoughts as I am new to on line support groups.
I'm new to the forums too, but find it really helps to chat to people in similar situations. My mum has MS and my dad PSP - my mum has coped for years but dad has gone downhill within the last 18 months. Hope you get a lot of sponsors!!
I believe myself and my colleague Samantha have already spoken to you. I hope you received some useful information.
I believe this phenomena will have arisen because different communication functions are processed by different parts of the brain. In PSP there can be particular problems with language production, comprehension and construction. The ability to write and to read back something that has been written down is processed in different areas of the brain. So it might be easier for an individual with certain language production problems to write and read something rather than to generate and speak out loud new and original sentances. This also happens in some people who stammer. They can read perfectly and even sing but have difficulty producing new and original spoken words and sentances.
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