Skip to 0 minutes and 0 seconds I used to work in a school in the office. I was there for about 22 years or something like that and about five years before I left I felt that I was called to be a priest so I was training then, working at school and in the evenings I was doing the trained for that and that took quite a few years and had a degree eventually so now I am actually I am a priest I’m not actually the [vigar] vicar because I don’t get paid. I’m not in charge of the parish I just but I can take the services. So I’m still doing that but not as much as I used to be.
Skip to 0 minutes and 52 seconds The first time I thought something was a bit strange was I was was working at school and I was having difficult using the phone and people will ring things up and I can’t couldn’t understand what they were saying and asking say would they say it again and if they gave me numbers I couldn’t write them all down which hadn’t been a problem before but regularly that was happening. So I thought I was deaf going deaf basically so I went to the hospital where I live and I had that checked out they decided it wasn’t worried so I left it at that point because that’s the only thing I thought it could be.
Skip to 1 minute and 43 seconds Then I went about to begin it must be 12…um I decide that actually this is really isn’t right. I went back to my doctor and said look it’s getting worst and so then I saw another hospital again in Tunbridge Wells and Pembers or somewhere like that and so I went there and I saw a neurologist there and he did some more things and I had more scans sent to various hospitals and they did say that things was moving on and is you know something else is happening and things are changing so it’s really just making the best you can really and so i five different ways of using things and ways to get on with it.
Skip to 2 minutes and 55 seconds I can’t read very well so I don’t I haven’t seen a book for about three years I can’t read a book. I can say the words sometimes and sometimes I can’t and in a sentence I can’t make it make sense. Even I can say each word I can’t make them say what it’s supposed to say it’s just like da da da da da It doesn’t come not as if, you know, it doesn’t mean anything so I don’t really know what’s happening and if I’m listening to the news on the television or or people just talking to me I can see some of the words but what do you say what does that mean I don’t know what it means and I can’t remember just everyday words it’s not like when you can’t remember somebody’s name it’s not like that it’s just like a word like table or the window or things we’ve said all your life and suddenly you can’t and then one day [scalf] there’s one word I can never remember [sca-scaldaver] I can’t even say it and I know what it is when in a building you know you have a [scalfalving] whatever it is and I’ve got it written down in my phone and I look at it and I try and say it and sometimes I can say it and sometimes I can’t.
Skip to 4 minutes and 34 seconds I know what it is all these things I know but I just can’t say the word or just not remember it or can’t say it. One or the other. There’s two things it’s one thing saying it one way or just not knowing it, there are two different things. So it’s very annoying. The people who know me well know that they have to speak to me [cloes - quiet] quickly no slowly slowly and I have to I like to look at people’s face because that helps but of course when people are excited about something or want to tell you something they do speak too quickly and I can’t understand so that’s they help.
Skip to 5 minutes and 26 seconds If I’m writing something I can’t spend…I can’t say the word and I can’t write it at all I can’t say things it’s just it’s so annoying so I have to ask people how what’s this word how do you spell this. I have a thesaura all the time because I think of a word and I have to try and find another word and I say to my husband what’s that word that means da da da da da and then he has to decide what word I want and sometimes he doesn’t come out with the word I want because there is a word is the right right word but he can’t he can’t tell me and then that’s the thesaurus or anything like that, that helps and also online I can find out if I’ve got a word like something for the Bible I don’t know how to say it how to say it and quite often you can put that online and a voice will come out and tell you what the word is, how do you say that word.
Skip to 6 minutes and 34 seconds So it’s difficult being in lots of people, going to meetings is very difficult because I can’t hear, I don’t know what people are talking about and even two together you know it’s very difficult to have a conversation with people so I like music and things because you don’t have to you know, but the news I’m not very good either because I don’t know what people are saying so my husband has number 4 on in the morning and it doesn’t mean anything to me and even in the paper we have every day you know I can’t understand all of it.
Skip to 7 minutes and 14 seconds I can get the hing of it hang of it you know I can look at the pictures say the words with at the top but I can’t really and I have to say to my husband so what’s happened here what happened here and then he has to explain it to me in a better word for me really but even then I don’t necessarily understand.
Skip to 7 minutes and 37 seconds I mean I feel well I don’t feel poorly and I’ve just got to make the best of it really, it’s not going to go away and I have carrying on doing what I can do and explain to people about it so they can go along really but I do worry about the thought that maybe I won’t be able to speak at all at some point and if the time comes when I’m living on my own I will be worried about that because the phone and people coming to the door and all the other things that you need to do in a house, you know and you have to get friends or people to help with all sorts of things because I’m not going to be able to do that sort of thing so and my family I’ve got a son and daughter and they’re helpful and everything, and supporting obviously.
Skip to 8 minutes and 40 seconds but um we can have lots of laughs about it if I’m talking to them and say that I get the wrong word and we’ll have a good laugh I mean you’ve got because what can you do? It’s either I cry and I can’t, not going to do that and you know I’m lucky you know that, that I’m not ill ill if you see, phyiscally, so I just do the best I can.
Living with logopenic aphasia
In this video (~10 minutes) Jenny who has a diagnosis of logopenic aphasia describes how the condition affects her.
We have also prepared a 3 minute version for those short on time.
Logopenic aphasia is one of the ‘primary progressive aphasias’. Primary progressive aphasia is a subtype of FTD in which changes in language skills are the earliest and most prominent symptoms.
Types of primary progressive aphasia are:
• Semantic dementia or SD
• Progressive nonfluent aphasia or PNFA
• Logopenic aphasia or LPA
Symptoms of LPA include:
• Difficulty finding the right word to say
• Pausing in the middle of sentences
• Difficulty repeating sentences
LPA is often included as a form of frontotemporal dementia because the temporal lobes are particularly affected in this condition. However, when investigating the changes in the brain of people who have LPA under the microscope, it is often Alzheimer’s pathology (the amyloid plaques and neurofibrillary tangles we learned about in Week 1) that is observed.
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