My mum is loosing the ability to talk verbally and finding it difficult to spell/write. With communication a common difficulty with PSP my parents are considering an ipad.
Has anyone used an ipad to help with this condition? Do you have any recommendations for useful simple apps to aid communication?
..and do you feel there is much gain or any to having one?
Thanks in advance for your feedback x
Hi NetballMagic!!
These are our experiences about communication and PSP:
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.
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...
Hoping to be useful.
Hug and luck.
Luis
Thank you for taking the time to reply.
I tried using charts and some different Apps. But what worked best was the tablet. My wife told me on several occasions that the tablet was a god send. She was able to answer questions from me or the doctors. I wish you good luck on your journey down the path of PSP.
Hello Netball Magic, I can’t add much to Luis’s excellent reply, other than my mum’s iPad has been a godsend to keep in touch with her during the pandemic. She had to go into a care home at the start of the pandemic, so keeping in contact by video calls, texts and emails has been crucial. She has used Claro with some success, and is still just able to type with her left hand ( the right has lost motor skills quicker so can no longer be used for much). Definitely worth trying an IPad , or I believe there is also a tablet on the market specifically designed for the older generation which is meant to be simple to use. Best wishes for the future and your Mum’s battle with PSP
That’s interesting about an ipad for the older generation, thank you - I’ll take a look.
Hi all
Thanks so much for this thread - it’s so timely for us and my mum who is living with CBD.
I’m really interested in the voice and messaging banking option. Does anyone know if that’s available in the UK or if there’s a supplier who can provide kit to do this? We have had some kit from the speech therapist with pre-recorded messages but it’s not great as it sounds like a robot and also Mum has to physically press the buttons to do that- and she can’t do that. We are exploring an eye recognition one now but we are not sure if that will work. It would be amazing if it could sound like her.
It’s so hard to pre-empt what we are going to need down the line. But it’s also so hard to get things to happen quickly too as people just don’t seem to understand CBD! By the time we get things to happen it’s sometimes too late and mom’s CBD has progressed too quickly 🙁
Maria
Speak Unique are recommended as they help with PSP/CBD patients plus PSPA offer a grant to fund this service too. I believe it’s £250.
We tried an iPad with a speaking app installed but my wife found it very difficult to use as she was a touch typist in her day and could not take to pick and peck that is required of the iPad. Frustration followed on top of that prevalent with speech difficulties and we found it a no no. Flash cards do work for most mundane communication needs however expressing feelings etc. is still a problem. Phrasing a question which has only yes/no answers helps. I have found that giving a range of options does not lead to a clear answer or make it easy for her to answer. Give them lots of time and be patient.
We didn’t find an iPad helpful because it was too sensitive for my moms level of dexterity. We also didn’t find the Lingraphica device helpful as it was too simple for everything my mom wanted to say. This simple paper board was the most helpful thing. We used it for 2 years to communicate. We even used it w her doctors. It made her feel like she was still part of things
Did your mum spell the words out or just point to the main letter and you work out the word from there?
She would spell the word until I got it. I CE I said it outloud she would move onto the next word. Sometimes after like 2 or 3 words I knew where she was going or what she was asking. It takes sometime but you get better at it! We would literally have entire conversations and she couldn’t speak at all
I wouldn’t be without mine Good for communication,jigsaws and free games.my SALT recommended ana app called verbally,have not had to use it yet. I have a stylus to point to letters. Also good for phone
You can try Smalltalk by Lingraphica although simple picture sheets and a yes/no sheet worked best for us (until my mom had yes/no reversal). We also used little post-its to write down potential answers (on different post-its —such as choices for lunch) and had her choose one or the other.
That is what my husband used, I bought a keyboard for it, but it was easier for him to use a stylus. It worked great for quite a long time. But, he was also able to text and email people and visa versa, so he was able to communicate with the outside world when he couldn’t physically get there. Definitely a good investment:))
We just got the Avaz app for my dad who has CBD and speech is becoming increasingly difficult. Have yet to really use it. Will see how it goes, but seems like it could be helpful! I like the big chart idea too.
Hi, I posted the other day about Ruth having LSVT intensive speech therapy. It was 4 weeks of time and cost but I think it will keep Ruth understandable for a further 6 months - so worth every penny!
Richard
Trouble Communicating
No communication
Communication to loved ones in care homes
When communication is pretty much impossible
