Mum's PSP : Mum was only diagnosed with PSP... - PSP Association

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Mum's PSP

Blitzford72 profile image
9 Replies

Mum was only diagnosed with PSP last Octobershe is falling alot more now and ,her speech has really got very bad over the past month and I just wondered if anybody has had the same experience.I just feel I'm slowly loosing myum 😪

Thank you for reading x

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Blitzford72 profile image
Blitzford72
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9 Replies
messier profile image
messier

I’m sorry to hear your news. Everyone has a different experience and the sequence and speed of onset of symptoms is very different. But falls and speech problems are key symptoms of PSP. Please take time to search old posts on here about how people have tried different aids to support mobility. If you haven’t got a speech and language therapist and an occupational therapist involved yet, then now is the time. Some areas have specialist neurology physiotherapists - we had to pay privately for that. The GP should be able to arrange this.

Blitzford72 profile image
Blitzford72 in reply tomessier

Thank you mum has got a speech therapist ,but it really isn't helping 😪I don't normally have a problem understanding her ,but lately I have to ask a few times , I'm know you should try and ask yes or no questions.But that's fine but sometimes she wants to ask the questions x

messier profile image
messier in reply toBlitzford72

Others on here have used cards with pictures or words and letters that she can point at. Or if she can still write or type then you could try that. If the issue is that her voice is very quiet you can try a microphone.

Blitzford72 profile image
Blitzford72 in reply tomessier

The cards are not working ,she really has a problem with her eye sight as well ,so that really doesn't help ,it's not her voice is quiet it's just trying to the understand her 😪

Troubleandstrife profile image
Troubleandstrife

ugh. The incomprehensible speech and communication breakdown was one of the hardest , most heartbreaking, parts for me. My husband used a white board for a while, but his vision challenges put and end to that. I’m sorry. The loss you feel is real and unbearable. All of us here on this forum feel it with you.

Doublereeder profile image
Doublereeder

Sorry this has happened to your Mum too. Lack of speech and communication is the hardest to deal with, for both parties. Encourage your Mum not to use full grammatical sentences so she's not using precious energy on superfluous words; 'of', 'the' etc. When you feel you have enough of a thread, finish her sentence so she can nod or otherwise know that's what she was asking. Ask her to repeat a few times as well so you can get enough of what she's asking. My Mum, when I asked her, said she would rather be told I hadn't understood enough and ask to repeat a few times. Unfortunately, it will get to the stage when even this isn't enough. Thinking of you.

Healthynotwealthy profile image
Healthynotwealthy

Just wanted to comment because i know how hard it is to watch the deterioration especially when it seems so fast and you are unprepared. I found a lot of supports were reactive not proactive which means you always feel unprepared and struggling. I will just echo what others have said. If sight is an issue you can get electronic boards that will give audibles for them to select. We found this slow and coordination of movement not good enough to control. We found an alphabet board (piece of paper set up with a new line starting at each vowel) the most effective and have mum spell out words (using her foot whilst we said letters out loud) you are not understanding. I hope you find something that works so your mum can keep her voice as long as possible.

BoxingMum profile image
BoxingMum

I can sympathise so much, my mums the same. She’s been diagnosed a few years now but since January the decline has been fast. Mums speech is down to basics and she gets Yes and No muddled up so I have to keep checking which one she means. We do a thumbs up now to confirm which one she means

45purple profile image
45purple

Sorry to hear about your mum. Good advice on this sight 💜

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