Hi, my Mum has PSP, onset 2012. In the last few weeks her speech has become worse, I cannot understand her on the phone and face to face is difficult and marginally easier by lip reading.
Any ideas about how I can communicate more easily with her? Her SLT is coming out next month. I think she needs some kind of AAC but she has problems learning new tasks and sequencing. Any advice would be appreciated.
I have been prepared for the decline in mobility/swallowing etc but I hadn't realised the impact of the speech, it's horrendous especially as I live a 3 hour drive from her and depend on phone conversations...it's having a massive impact on my mums quality of life, as she gets frustrated understandably. Also on myself and my 2 sisters.... I hadn't realised what an effect this would have :-(( I wish we had got her used to an AAC earlier, I feel sad and angry that i didn't understand it would happen like this...
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serenity41
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Does your mom have enough dexterity to point? If so a picture board may be useful. Of course that won't work for phone conversations.
Hi Ron thanks for your reply, yes she can point, a board is a good Idea to try. It's difficult as she continues talking in long sentences but I can't understand much of it on the phone, not sure what the solution is to that, I don't think there is one. Does your Dad have PSP? Do you use a board when talking to him?
I used a board for Steve. I wrote the alphabet out in big capital letters so he could copy. When that stopped, we used the magnetic letters, at first he could put those in place, in the end just point. He too, would only use long sentences, more times than not, would be too tired, before he got to the point. But it did always remind me, that inside he was still there and completely with it. Have you tried FaceTime? Steve's daughter always used this from the States, she could chat away to her Dad and he would just sit and look at her.
Out of all the PSP symptoms, I think this one was the worst. Steve lost the ability to talk, two years before he died. It's a very lonely time, for both the sufferer and the carer. You don't say who is caring for your Mum, I am probably wrongly assuming your father. He will need your support, even more now.
Oh, just one little thing, one day Steve could suddenly talk again, just for about an hour. I asked him, how he felt not being able to talk, he replied "it just feels normal!"
Hi Anne, thanks for your reply, yes we've tried face time bit usually end up talking to the wall! Or the top of her head or something... will try again to show her how to use this weekend.
My Mum is looked after by a team of carers in her own home as she lives alone.
I'm sorry about Steve, I can totally relate to the loneliness you must have felt, I hadn't thought about the Speech side, mobility I had expected but the impact of the speech is awful
Do try Face Time again. I know Steve got lots of pleasure from just seeing and hearing his daughter, if even he couldn't participate. Try to do it, when you know the carers are there, so they can help out.
Dad has CBD and no I can't get him to use a board yet even though I can only understand about 20% of what he says. Lately I have him just say 1 or 2 words and I start guessing. He wants to use a whole sentence but runs short of breath or gets tired and never finishes what he is saying leaving me utterly confused.
Yes! Mum does the same, usually when I'm walking out of the room or pushing her in the wheelchair, she mumbles a string of unintelligible words, like a constant low rumble and I'm left feeling terrible as I can't understand and then she often shouts... which is distressing, although I can understand her when she bellows at me... so she's learnt that shouting is effective, and has said it's the only way she can make herself heard. Horrible disease.
My Mum is losing her words. And her memory. And her sight. She has already lost her mobility. And her ability to chew and swallow properly. Carers feed her and bathe her and lift her into bed and into her chair. My insides feel like custard wrapped in barbed wire when I think about her but every moment we are together I try to "normalise" her situation and take the tragedy out of it - for her benefit and mine. I have learned to wait for minutes at a time for her response to a question, calmly, and if she doesn't respond, to just sit there and smile or laugh with her. She does not get frustrated or shout like some of the loved ones mentioned here. She smiles and laughs with me with a twinkle in her eye. I don't know if this is because of the apathy which is a symptom (and a blessing) of her PSP or her nature, or if I have helped her by accepting her PSP and encouraging her to do the same. I approach every day and every meeting with Mum assuming she is OK (not in pain) and reassuring her that everything is OK and everything is normal. I've been on this forum for 3 years and I have read so many tragic stories of PSP sufferers and their families struggling with the symptoms and stages of PSP. I chose early on to accept Mum has a rare condition with no cure and no treatment. This was such a difficult decision. I could have torn my hair out Googling "PSP" and researching different ways to fight it. I really believed this would stress Mum out and I didn't want her to focus on trying to get better because I know she will not (I also didn't want her to feel that she had failed or the treatment had failed to work). I do believe this acceptance helped her in the early stages (3 years ago). We didn't race around to every specialist in town trying different or experimental treatments, or try to slow the progress or find a way for her to get better. We just said: "bummer" OK, we know how this will progress, what's on your bucket list? I realise this will be a very unwelcome approach for so many members of this forum but looking back now I can honestly say it has vastly enhanced the relationship I have with Mum and I really believe it vastly enhanced her quality of life for the time she has left. I wish you all can find some peace, relief, joy and acceptance xxxx
Good on you teej. My attitude exactly. Jon was a GP but once he knew it was a rare and progressive disease and the symptoms which could be expected he didn't want to know any more. I did and looked up quite a bit of info online but we both just went, like you, "bummer" and got on with it.
Jon recently had an aspiration pneumonia and his speech declined dramatically going very quiet and mumbled. I found it helped to ask him to pronounce each word separately which made it intelligible. But he only ever attempts short sentences. It would be laborious with someone who uses long ones.
His speech is back to normal now but we may need this technique in the future.
"My insides feel like custard wrapped in barbed wire when I think about her": this is exactly how I feel for my mamma with PSP; plus she is in Italy and I am in the UK and it's so hard! I feel I cannot take a full breath. This last week she has stopped talking and has no motivation, looking sad and apathetic. What a horrific illness. I send you all my deep respect
There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one of the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she points out. Until now it is the best system.
Hi my name is Frank rose. I have been following these blogs on PSP for a while now. This is my first reply.
My Wife has had PSP for over 7 years now and is completely bedridden and can no longer speak. What I did was get her a Tablet which has WI-Fi and she texts me from the tablet. Her dexterity has been getting bad. What I have been doing is asking her yes or no questions or I like I ask her what would she like to eat I number each type of food 1 or 2 and she still can type the number. It is hard sometimes but it works. I hope this may help you. We are all in this together going down a path with are loved ones. I live in the states.
Hi. I feel your pain. I think the worst thing is not being able to commuincate. We can't communicate at all now verbally with Dad except responses to 'yes-no' questions where he puts his thumb up or down. The alphabet board was great for a time but became unmanageable as Dad's eyes and dexterity deteriorated. We had a giggle about some of the things I thought he was saying but it took so much effort.
However, I would push to see what a speech therapist can organise.. I was blown away by the different devices there are available now and Dad had a speech therapist who spent a considerable amount of time with him to find something that worked. He had a tablet in a stand which sits on his table, which was overlaid with a grid. Each part of the raised grid had letters/new word in it and there was a predictive word section too to select. Dad had to hold a finger on the letter to select it and a sentence would gradually be displayed across the top, so even if it was slightly wrong it was easy to work out what he was trying to say (I always lost track with the alphabet board). Also, he could press a button to speak it out. This was really helpful for about a year. It was funded too - but sometimes it isn't. We can only use it for one word now, rather than sentences, as it takes too long to co-ordinate/see the letters clearly, but if your Mum is able to find something where she can make a sentence and then sound it out or show you on face time it might be an option. At least she might be able to make a sentence to her carers to communicate to you. It must be so hard being so far away. I'd like to think we are of a generation that's more tech savvy but if arms and fingers get locked up and eyes don't co-ordinate it will always be a challenge. At least there are some options - seems we have to push and push to find what's out there though and get lucky with a speech therapist/carer who is willing to spend the time (what little they have with all pressures on our health service). Good luck! Blessings to you and your Mum.
This sounds exactly like my mum, virtually no speech. Her diagnosis currently is lewy body dementia however because of her speech deterioration I am going to get her checked out by a neurologist for another opinion. She has been assessed by speech and language and provided with a Lightwriter. It isn't perfect by any means but it really has helped both me and mum. We would be lost without it.
Hi thankyou so much, this looks great, especially the text element as she can still text but struggles with the small phone keys. Mum is seeing an slt in a couple of weeks so I will ask them.
I hope you make progress with neurologist and get some answers.
This might even be better for your mum. It is just a step too far for mum. However it is a fantastic gadget for someone that can use it. You can even text with it and preset phrases. I got my head around it quickly and I'm not into technology.
Ask to see a speech and language therapist that specialises in Assistive communication.
Yes we tried an app but Mum couldn't remember the sequence of buttons to press to go back and forth between the screens and it just increased her frustration. She finds an i pad difficult as it's so touch sensitive and she ends up on the wrong screen and then can't remember how to get back to where she was!
Ah yes, that's the grid 3, I had a look at that, it was in PSP matters magazine. I think it would be too complex for Mum.. I think the lightwriter looks like a good solution as she gets on ok with texting
Your mum would get on well with the lightwriter. We'd be lost without the lightwriter. Even when mum has bad days and can only manage a few words it still enables us to connect which I am so grateful for.
Apparently the Lightwriter can be used for texting and phone calls but I haven't explored this.
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