my poor mum has reached the stage where conversation is nigh on impossible…..
yet she knows exactly what she wants to say!!! I’ve had phone calls from her distressed friends and other family members recently all getting very upset that they can’t understand what mum is saying..,,,
Any advice or tips on what to do now would be much appreciated. I’ve called the speech therapist and Hope she will offer something. Also a hospice nurse is coming tomorrow…. So maybe they can offer …..????
Hi
Yes it’s very tragic when the brain disease starts taking away their ability to speak. It’s so very hard for the sufferer. My husband speech was effected early on. He could not join in conversations as no one gave him time to think how to make his tongue and mouth move to get the right words out. It would take him several minutes to say something instead of the half second it takes without the disease. Speech and language called it effortfull speech but only gave him a laminated spelling board so instead of speaking he could spell out questions and answers. Over time he rarely spoke or could only manage yes and no and sometimes it would be days without a word. It’s important to tell friends and family to continue talking to your mum but one person only at a time… several voices will be hard to follow. Strangers will ask if they have dementia but remember with PSP they retain their understanding and hear everything said… they just lose their ability to reply x
Yes….. my poor mum is so frustrated. I can’t imagine how awful it is going to be for her as she loses speech completely. This is a most cruel disease….
Thankyou, I will tell her friends that.
Thanks for your reply.
A
Hi there, we are gong through the exact same thing with my father-in-law, the whole family was having trouble understanding what he was trying to tell us. We ended up writing out the Alphabet and he spelt out the words that way. I immediately emailed the speech therapist who is going to put some communication aids (words & pictures) together to see if that would help. My father-in-law wouldn't be able to use a tablet as he has weakness in his arms. I think the best scenario is to be patient and calm and to personalise the communication aids as each person is different or may have different needs. It is indeed a very cruel disease.
yes…. My mum’s left hand and arm are very stiff and don’t really move well at all. I got her a big button phone but she can’t use that either.
She now has great difficulty using the tv remote and the button for her recliner, so a tablet would be out of the question.
Thankyou so much for your reply, I will hopefully see the speech therapist very soon.
I’ve had phone calls from her friends and family recently all very distressed with the lack of communication and just how much mum has deteriorated. They have all been so loving and loyal towards mum…. I feel for them. It’s hard comforting them though when I feel exactly the same way….
I’m at the same stage with my Mum, we’ve just had the SALT team out. I’d already tried an iPad piece of software but Mum struggles to use it as like yours using a TV remote is a struggle these days. The only thing they could recommend was using yes/no questions, thumbs up & down which we were already doing and they made some common phrases for Mum on laminated cards so she can point to them.
Also to give her time to respond on better days, not to rush the conversation, even though it might feel like that to others.
Mum doesnt use the phone anymore, only FaceTime when I’m there to assist so you can see her face and hand.
My wife was cognitive intact to the end but unable to speak. At the last stages we had her blink yes or no. As speech deteriorated we worked with speech pathologist using laminated alphabet sheet so could spell the words. As the paralysis worsened even this became difficult. As has been noted, patience is needed to deal with the communication needs of patients. In the final stages,communication is well nigh impossible. It's a cruel disease.
I have made a personalised laminated book for mum with simple images ‘bed’, ‘food’/‘drink’, ‘hot’/‘cold’ etc and images of people she knows. Was a ‘sadmin’ task but one that really helps her. Also 👍🏼 👎🏼 For yes and no etc. happy to send the document to anyone via email if you want to use it (without the people images)
Hi
My husband used to speak very fast. But now, it's difficult to understand. I have to ask him repeatedly to speak slowly. And spell out key words so I understand the context. With friends and relatives, he messages on Whatsapp. They also refrain from calling him and call me instead. I have downloaded some text to speech apps on his phone which he is practising. Problem is the speech has a non-Indian accent. 🙂
Dear Girvangal
Communication is such a big part of a person's identity so losing it by degrees is a profound loss. Speech and language therapists should be able to help slow this down. Do ask about LOUD training (Lee Silverman Voice Treatment). My husband gained several months of talking to his friends - and we just had to tell them to prompt with "louder!" Not all SALT teams have experience with LSVT so they might not suggest it unless you specifically ask about it.
This doesn't stop the progression of course, so over time you will have to add more strategies. It helps if the closest family and carers learn to understand the attempts at speaking so they can interpret with people who don't see your loved one daily. You need to gain their implicit permission for this - they can get frustrated if they feel someone is "guessing" and misrepresenting them.
For my husband, the words don't easily form in the brain anymore, so he's not always even able to whisper or mouth the words, unless he can repeat what has just been said.
I try to avoid yes/no questions and always give options. Sometimes the more "extreme" options help. My example is an episode where my husband indicated pain in his ribs or chest. I had to quickly work out if this was a medical emergency. "Does it feel like you've been stabbed - or someone sitting on your chest?" - he repeated "sitting on chest". "Like a tiny baby? - or a big elephant?" - he repeated "big elephant" but with a giggle that clearly gave me the answer that there was no emergency.
So my suggestion is to keep trying different things and see what works on any given day - avoid adding too much pressure and try to keep it light. Appreciate the moments of successful communication and connection.
Best of wishes for this hard journey 🫂🌻
My husband has CBD but has experienced all the symptoms you are all talking about. I have struggled my way through trying to help him with no help despite my asking frequently. Comments like nothing we can do and just old age!! He finally got a diagnosis but all too late and I was told to just keep him comfortable! He is now in a nursing home paralysed but able to watch TV so long as the staff remember to turn it on! So my sympathy to everyone going through it, particularly the patients but also the family carers. It is so awful and hard. I am trying to raise awareness by distributing PSP/CBD leaflets to health professionals who have no knowledge of these awful diseases. We need to spread the word if not to help our loved ones maybe for future sufferers xx
Mom has been completely unable to communicate verbally for well over two years now. Voluntary, purposeful movement of any kind has been gone for 18 months. We have been entirely cut off from her and it is excruciating for everyone, especially her. All the solutions we thought might help never lasted long or worked at all. We never imagined we would reach this stage, let alone for so long. Sorry for sounding so dismal, our experience was very much, "too little, too late". But as others have said, you keep trying stuff, if something helps even one thought in your mom's head to get to you, it is worth it.
My dad has Corticobassal degenerative syndrome (cbd), and we're now at the stage where his speech is virtual impossible to understand. Answering yes and no questions is basically all dad can manage, we have made some flash cards with pictures of the most common things dad asks for which helps the carers in the nursing home to continue to understand dad's needs. But I crave the conversations we shared as father and son. During the 7 and half years since his diagnosis, the most upsetting thing is to witness how quickly the condition has taken away the everyday abilities we all take for granted.
With so many other people having to watch their loved ones navigate through these horrendous brain conditions, I can only offer my thoughts and prayers and hope that you don't forget to look after yourselves during these difficult times. Take care.
I am a psp sufferer, with speech difficulties. If I want to say something and am being ignored, I hold up my arm. Even then I often have difficulty making myself understood, often having to repeat myself which is very tiring, particularly as my voice quietens each time. I certainly don’t speak as much as before! My husband often jokes it’s the one good thing to come out of psp!
Communication
Communication aids 
eating while reclined
Does anyone have experience with CHC private health budgets?
