Advice needed on communication devices

[Catski78]

Would anyone have any recommendations of communication devices? Dad’s speech is getting more limited and with his CBD so is his cognitive ability. He is still trying to communicate but it’s getting harder to understand. Does anyone have any ideas on how to make this easier for him? He can say yes and no, but beyond that it takes time and frustration on his behalf to get us to understand what he’s saying/asking? I wondered if there was anything out there that could help. He’s not able to use a proper keyboard but is there something similar???

[LuisRodicioRodicio]

Hi Catski78!

In order not to repeat myself in this chat, I have sent you our experiences through the internal chat, hoping that it may be useful to you.

Hug, luck and courage.

Luis

[Healthynotwealthy in reply to LuisRodicioRodicio]

Hi Louis can you send it to me also please seats in the same positive with my mum.

[Healthynotwealthy]

Hi, we are in a similar position with my mum although it has deteriorated even more and sometimes yes and no are hard to understand. In a couple of weeks we have a communication team who are coming to fit technology which she should be able to operate with her foot, the one part of her body that she seems to have most control over. She can't see a screen due to psp or operate a keyboard, so with her foot she will operate a big button (switch) which will scroll through options/letters etc. I'm hoping it will be a big help. I'm just worried that she won't have enough co-ordination or speed to stop it where she wants it. It's a shame that it feels like a lot of the intervention misses the mark or is after when it's most useful period would have been. Such a difficult disease to manage. Good luck and let us know how you get on.

[Catski78 in reply to Healthynotwealthy]

yes it’s so difficult and I agree I wish someone had had the foresight to put some sort of communication device in place earlier so that dad could have gotten used to it making it easier for him now. I’m not sure what will work, if anything at all, as his CBD has affected his frontal lobe faster than his mobility (although that is now in quite a rapid decline too) we’re not 100% sure how much he is comprehending anymore. Some times he still seems quite lucid and at other times very confused but with his limited speech we’re struggling to know.

Are you in the UK? We are in Scotland, I wonder if we have access to a communication team?

Thanks for taking the time to write to me. I wish you and your family all the best during your journey with this awful illness!

[Healthynotwealthy in reply to Catski78]

Yes in the UK, we were referred to ACE by our SLP hope they can help in scotland. acecentre.org.uk/

[Chelle1981uk]

hi my mum also has CBD and her speech is not great. We asked the neurologist about a speaking device, and here was his reply - apologies but it is quite long!

”It is important that family members are aware that using a communication device is not straightforward.Firstly the person needs to be able to access the device, so how is their vision? How are their fine motor skills? (do they manage a mobile phone, TV remote?) and the realisation that this is likely to change as the disease progresses. Also communicating through a device takes significant cognitive skills – remembering how to access words/ phrases/ categories and being able to correct errors.Another factor certainly with PSP/Corticobasal Degeneration can be repetitive behaviours causing repetitive and unintentional hitting of keys.Using a text to speech device is slow and people usually chose to continue trying to communicate by speaking. It can be most useful if family/ carers adapt to facilitate that.In my experience by the time a person’s speech has deteriorated to the point that they cannot be understood, their cognition, motor skills and/ or vision has deteriorated to the extent that they cannot manage a device.  ”

We as a family have been constantly trying to help my mum on our own with her speech because speech therapy was useless and they ceased altogether during and after Covid. It is very hard to understand my mum now so I do wish you all the best with your father. This disease is truly awful x

[Catski78 in reply to Chelle1981uk]

The doctors sure like telling us how it is 😢! I feel all their comments are pretty spot on to be honest. He was never a tech savvy person and didn’t own a phone or an iPad so getting him used to one now would be impossible. He can use a remote if it’s just a couple of buttons which basically could turn the tv on or off, he certainly couldn’t scroll for anything or change channels. He has strength in his arms and hands, the left one is usable, the right isn’t, so he could point so maybe the communication board could work. I’m just not sure he has the ability to spell anymore, but it would be worth trying for the words he struggles with.

It really is bloody awful! Thanks for passing on your information and I also wish you all the best with your Mum’s journey too x

[Chelle1981uk in reply to Catski78]

Yep this neurologist isn’t very forthcoming at all as we’ve suggested a few things and he’s knocked us back! My mum can spell but like your dad, her right hand (the dominant one) is more or less useless and although she can use her left hand it does shake a bit when she’s pointing to letters on a chart. My dad always says that the neurologist should’ve mentioned the voice activation device as soon as my mum’s speech started to deteriorate but he didn’t - instead it was when we were randomly talking about how Stephen Hawkings used a machine to speak that I then went to the neurologist to ask and the above was his reply! We are at a loss now as to what to do because in our opinion healthcare professionals have not been great since my mum was diagnosed 😢 lots of luck and best wishes to you and your dad x

[Catski78 in reply to Chelle1981uk]

It seems to be a recurring theme with all families going through this that Dr’s either don’t know enough about it, and/or kind of wash there hands of it. I had thought initially that Dad might have gotten really good observation and interventions as a way of them building on their knowledge of this rare condition but it certainly doesn’t seem that way. I feel we have to advocate and fight for him every step of the way. It makes me really sad to think of those who don’t have family to do that for them. It must be a very frightening situation for them, even more than what our loved ones are experiencing 😢! X

[Chelle1981uk in reply to Catski78]

I totally agree. It has been us who had constantly been suggesting things and we certainly aren’t Doctor’s or neurologists etc. It does seem like because they don’t know much about the condition they’re a bit like “oh well, not much else we can do unfortunately”. It is frustrating all round and you’re right about families - imagine those who have the disease that don’t have any family to fight for them or support them? So very sad ☹️ X

[Hidden in reply to Chelle1981uk]

I feel a terrible sadness typing this but I think too that what the physician says is spot on. This disease brings so many difficult crossroads, you want desperately for the PSP patient to have all and every dignity and a voice but you also desperately want them to live in maximum peace and comfort.

If cognition is impaired, if the addition of the communication device brings new stress to the patient and the carer, is it worth it? But can we think like that? Do we keep on fighting on because you can give them a chance of a voice again and if you don't fight on are you doing absolutely everything you can? Or if you don't fight on and accept where you are now with communication are you saving discomfort?. I hate this disease, I hate the trauma of it on the patient and the trauma of it on the carer. I pray to God that He will allow science will find an answer so noone has to walk this road ever again.

Blessings to all and I am sorry I dont have any helpful answer.

[Catski78 in reply to Hidden]

As sad as it is all you’ve said is true. And because dad’s cognitive impairment is as it is and his communication is limited it’s hard to assess if he could use anything. The distress it could cause by adding a device is one I think we are realising isn’t an answer. He’s already been suffering agitation and delirium and is presently recovering from a kidney infection brought on by urine retention. I too wish there was a cure or at least medications or therapies that could help, but I fear that because it’s so rare there will be very limited research being done on it 😢!

All the best to you and your loved ones too x

[Dorothysdaughter]

When my mom could no longer speak we tried iPads and even a device from Lingraphica, but this worked amazingly. My mom and family loved it. We took it everywhere!

Communication board

[Chelle1981uk in reply to Dorothysdaughter]

We have a similar board but my mum’s good hand, her left one, shakes a bit now so she can’t point to the letters very well anymore ☹️

[Catski78 in reply to Dorothysdaughter]

Thanks so much. I think we’ll definitely make one of these and give it a go. If nothing else it will help us to see where he’s at in terms of vision and whether or not he still recognises words and can spell them. Thank you 😊

[Richard33 in reply to Dorothysdaughter]

Dorothysdaughter,

That layout looks great. How big is it? Ruth is having trouble with her vision.....

Thanks Richard 😊

[Zerachiel]

We have used an old app called let me talk, it is pictorial and can be set up to your own phrases and pictures.

Let me talk

[Catski78 in reply to Zerachiel]

Thanks I’ll check it out on the App Store 😊