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Living with progressive nonfluent aphasia

Jane describes her experience of living with an atypical form of progressive nonfluent aphasia.
I was a physiotherapist. Still am, but not working. In, I worked for eight years mental health with the elderly, eight years pediatrics and eight palliative care so very varied and lots of teaching in that and I stopped working to look after my mum who had a form of dementia and now a lot of time is taken, I’m an authorised lay minister preparing, leading worship once a month. Snippets I might need to look at in I’m fluent when spontaneous. Hello, and short things but thinking, trying it feels to connect thinking and words is hard and when there’s noise. Oh, dreadful. They go and distractions but especially noise. So is a real problem. And I’m fluent reading but my at my speed.
Talking takes concentration and multitasking and I don’t get on. So to talk and make a cup of tea when someone comes. No. And it’s in social situations is quite isolating, quite a muddle. A lot of noise so after church I want to disappear if questions it’s hard. And I find talking physically hard work and I prefer to meet at home and can control. I like meeting, if not chatting, but if i’m looking facing the wall there’s fewer distractions than into the room. When you’re speaking, not to go too fast please I have to run to catch up and also to be patient and give me time to answer. Not answer for me.
And email’s my preferred way to communicate and be aware of background noise. And friends I’m grateful when they turn off the radio. Yes to include and involve me, not isolate me.

Jane describes her experience of living with a diagnosis of an atypical form of progressive nonfluent aphasia.

There are a number of very straightforward things that Jane explains, that people can do to help her, including:
• don’t speak too fast
• minimise background noise
• give me time to answer – don’t answer for me
• include and involve me

Symptoms of PNFA include:
• Slow, hesitant speech
• Difficulty finding the right word to say
• Pronouncing words incorrectly
• ‘Telegraphic’ speech
• Producing the wrong grammar
• Saying the opposite word to the one they mean to say
• Problems with reading
• Problems with spelling

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