PSP Association
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First-timer saying hello

Hello Everyone! I am from Poland, I am 27 and I take care of my mon who has been diagnosed with PSP last year (first symptomps occured 7 years ago).

I am very amazed with all the messages you are writing to help each other. It's good to know that you are not alone and a lot of people can support you in your journey.

Right now , as my mum is beginning to be really hard to understand, I am looking at all communication devices (similiar to the one here: speechbubble.org.uk/product...

Did any of the had any experience with those? Would you recommend any particular type?

I was reading about squeezing the hand and pointing letters from the alfpabet, but as my mother is still using her hands I thought maybe such device would extend her ability to communicate more freely.

Your advice would be really appreciated.

Best wishes to all of the other fighters in PSP battle.

Gosia

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Hi Gosia

Welcome to the forum and sorry you have a need to be here.

We couldn't use any devices. PSP often brings with it loss of fine motor skills in the hands as well as poor eyesight. By the time Liz was having too much difficulty speaking she could not even point across the room with any accuracy.

However everyone is different and you might find it useful. A good test might be to see if she can click on a computer keyboard with any accuracy?

I hope you find something that works. I'm sure others here will have ideas.

Best to you both

Kevin

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Kevin,

Thank you for such a quick response. I will definately try the keyboard test. Mom was never good at writing on the computer, but she is still walking and using her hands to lift things, so speaking disorder seems to be far quicker than other symptomps.

All the best to you and Liz,

Gosia

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Hi Gosia welcome to the best place ever, my husband was diagnosed in 2014, he is in a wheelchair all the time for over 2 years, it has been a very hard road, sorry you have to be here, but everyone will be there for you, I am sure they will have answers for you. You can do the thumb up for yes our thumb down for no. Sorry can’t be more helpful someone will. Happy new year Yvonne xxxxx

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Thank you Yvonne and all the best for you as well!

Gosia

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So sorry about your Mom’s diagnosis. I was diagnosed in 2015 but looking back i feel it started in 2010 or 2011. My husband takes care of me and I know he is getting tired of it. I have a care giver Mon-Friday. But it always ends up with everything falling on my husband. I hope you receive the help you need, please write into this great website whenever you need help. Good luck to you and your Mom. Love, Mary B.

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Its a good idea to prepare for any deterioration. Whilst Chris could still communicate we practised the " thumbs up " also Squeezing once or twice if not able to signal. As Chris got weaker he sometimes was very slow with thumbs as he tired but could squeeze.

love, Jean

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Welcome to our community... wish It were under better circumstances. I hope that you find the answer to your question(s)

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Hi Gosia,

My Mum is in a nursing home and over the last 2-3 months her speech has deteriorated considerably. Even I'm finding it really difficult to understand what she says sometimes and it's so frustrating for her. As Mum's eyesight is poor and she can't even use an ipad, I've produced a very low-tech option of DIY 'flashcards' printed on A4 paper inserted into a display folder. Each sheet has (in big letters!) words like 'Milk' or 'Close my curtains' with an accompanying picture so that if the carers don't understand her she can point to what she wants. We're finding it works quite well for the day-to-day things she needs on a routine basis. It's worth a try as it costs next to nothing. I hope you find something that works, for now at least.

Best wishes,

Marianne

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