Communication

[richmond1]

mums speech has not been good for over a year, but we have always managed to understand her even though she had to repeat thing a few times, her voice has gone really quiet and it's very difficult now to understand what she's saying even with the voice amplifier. I know that eventually her communication will stop because of this awful psp. Is this a step closer to her loosing the ability to communicate, any advice would be great thankyou

[easterncedar]

If you can find a SALT who can do anything like LSVT Loud program, and if your mother is able to respond to instructions, you might be able to restore some of her speaking ability for a while. We have had good results, although the therapist did have to modify the program so much it wasn't really the LSVT program that he had. It requires a regular commitment to the exercises, but so worth it on a good day!

[NannaB]

It does sound like it.  My husband has now lost all verbal means of communicating. For a long time he was fine with thumbs up or down for yes and no but he now finds that difficult. We have tried many different ways in the past, the computer speaking the words he typed but he got frustrated as he was very slow, flash cards, plastic letters on a magnetic board, showing him a tea bag, jar of coffee, juice and letting him point to the one he wanted and various other ways but they all became too difficult eventually.

Your mum hasn't reached this yet so try different ways and see what works for her now.

Best wishes.

X

[Heady]

S has lost the ability to communicate now.  Struggles even with thumbs up or down.  Suggest you find another way for her to "talk" to you now.  There are Apps for the iPad, flash cards etc., like NannaB was talking about. We tried all these, but it was all too late.  Wished we had done it sooner, so S could ask questions and could still explain what he meant, whilst learning how to use them!

Lots of love

Heady

[Amilazy]

Your mum is proceeding down the PSP road and you must prepare for further loss of communication.  If she can still talk, it is time to discuss things that you may not wish to such as what does she want at her funeral - hymns, music of special significance, has she a will, if not arrange for one, all much easier if she can talk and be understood.  Ask her about DNR or end of life may be best with a palliative care specialist or a friendly GP/DN.  Not easy and can be upsetting to both of you.

I wish I had done all I suggested above, as M wants to tell me something and it's very frustrating trying to work out through yes/no questions. Music for her funeral is difficult I know she wants an Everly Brothers song but which one? We worked out she wanted the organ music we had at our wedding but that took weeks of frustrated questions and tears.

My wife has not been able to speak for over 2 yrs, the yes no, thumbs up, squeeze hands are frustrating and tiring for everyone.  SALT team useful in early stages, but as M lost control of tongue and swallow so they lost interest.  We tried the iPad app of touch talk not much help as M could not coordinate hand eye and got upset and frustrated very quickly and dropping iPad did not help.  We should have tried the iPad earlier and she may have got the hand of it but it is too late now.  There are occaisional good days when she can still whisper but other than short sentences or odd words it is very limited and she tires quickly.  

"Do things now do not wait" is the mantra that should be told to all PSP sufferers and Carers at the initial diagnosis, do not put off things for later as you will not be able to do them or it will be very stressful and difficult.  Enjoy speech while she has it but prepare for later.

Best wishes Tim

[ketchupman in reply to Amilazy]

Ditto to everything you've said. It's like you are living my life!   What year did M show her first symptom Amilazy  ?   Kim started showing symptoms in 2009 via frequent falls.   But looking at old photos, her facial expression started changing a few years earlier. 

Ketchupman 

[Amilazy in reply to ketchupman]

Thanks Ketchupman call me Tim

I would say Margaret is about 6 months behind Kim but is 10 yr older.  Her first symptoms was a muzzy feeling not dizzy but not in control when trying to do turns while tap dancing in Autumn 2009 she was 59, it  got worse in 2010 also could not remember tap routines but she did not start falling until Christmas 2010.  

Best wishes to you and Kim Tim

[kryste]

I got my aunt a text and speak she would type what she wanted and then it would speak it out , but they buttons became to hard for her to push so now I just wrote down the alfabet down on a piece of paper in black big enough that she can see her give her like a pen or something so she can point to the letters and spells it out for me It works quite well

Hugs Kryste