On the tip of your tongue!

Dear all,

You know that time, when you know what you want to say, but you just can't remember the word?

Has anyone noticed that it happens more often as ataxia progresses?

It happens to me a LOT these days. Sometimes as often as once an hour (and I try and avoid conversations anyway).

I'm just wondering if this is a common symptom as ataxia progresses - or if I'm just having more and more "senior moments" ;)


17 Replies

  • Hi Iain

    This is definitely something I have. I have noticed it for the past few years and although is increasingly irritating, I don't think it has got any worse. I am not sure if it is related to cerebellar ataxia. It is not documented anywhere but, anecdotally, I have met a lot of people with ataxia who complain of this.


  • Thanks Harriet!

    It's only because it is so annoying that I have noticed it. And it doesn't need to be an unusual word either.


  • Oh yes! My elderly Uncle has been in and out of hospital like a yo yo recently, I've had to speak on his behalf. It made me realise how easy it is for me to be misunderstood, getting my point over hasn't been easy. What I think isn't necessarily what I say🤐xB

  • Yes, definitely; also the part Wobbleybee says about what she thinks isn't necessarily what she says, my friend says that describes her perfectly. She says she needs so much effort to get the first part of a sentence out she loses track of the end of it and sort of forgets what she was going to say anyway! Very very very frustrating for her. As someone without ataxia trying to follow the half sentences and guess the ending (generally the most informative bit) is also frustrating. I also forget words anyway as I'm getting older so you can imagine how good we are at the crosswords we do to try and practice remembering words!!

  • Lol ... definitely!

    I drive my Ian mad sometimes. I accidentally interrupt him before he has finished because my brain has thought of something and then by the time he has told me off for being rude and finished his sentence, I have often forgotten.

    Good to know I am not alone

  • Also good for me to know I'm not the only one to get rattled about being interrupted! I get cross then guilty, then impatient then guilty. Even though you know the cause and try to understand what it must be like I am such a long way from being a saint . I also miss so much being able to chat easily like we used to but then am grateful we can still talk and laugh together at all , which we do all the time. Good job my friend with ataxia is better tempered than me I think!

  • I am/was reasonably articulate but find words go AWOL suddenly mid-sentence and that in turns frustrates and makes it worse as I continue. I have also started struggling to spell words that are perfectly 'normal' for me and mis-spell simple words without noticing, just found 'edad' on the shopping list rather than 'edam'. It is really hard when I used to pride myself on spelling and articulation, I could argue for England but now forget what it was I was arguing about.

    All very sad.

  • This is EXACTLY how it happens to me. I'll be mid-sentence, and for some reason can't think of the word I mean, so try to think of it, and when it eventually comes, and I finish the sentence, I get lots of curious looks.

    They are wondering why I was tripped up by a very simple word. Frustrating for the listeners. Frustrating for me.

    And also your "edad/edam" problem. I don't write much these days (my handwriting is atrocious - and I use ataxia as the excuse for this ;) ). So I type most things instead. But even typing is sometimes a problem. And it is usually smaller words too. My problem is that I tend to transpose two letters. Fortunately, most spellcheckers would highlight "edad" - although in my case, I would probably type "eadm". The problem is only really a problem when the miss-spelt word is actually a real word too (salt/slat). These don't get picked up, and I'm sure that I have left a few recipients scratching their heads ;)


  • But I now find typing a chore as not only do my fingers type out of synch so the letters in the words are scrambled I also mis-read the words. Just recently (last year maybe) I misread the new headlines and text in general and often pick up a word from lower in the article and transpose that, maddening when reading a book which means I have to re-read a areas of a page once or twice more to get the meaning.

    I'm a moderator on a yahoo group and it takes much longer to read and reply to messages these days.

  • I have episodic ataxia. I definitely notice I'm a lot more confused and forgetful when I'm suffering an ataxic episode. Kxx

  • I think this is- normal-for Ataxians? Lorraine

  • well I do all the above. I drive my husband mad by interrupting him all the time - but if I don't get my thoughts out straight away then I forget them!!

    my words often come out wrong or as another word entirely to the one I meant to say. It's a bit of a problem as I teach English to French students.

    I also forget words all the time! What's worse is I'm having to cope with two languages and I forget words in both of them!!

    never mind as long as I can be understood 😉

  • I cant say that any of this is my #1 issue but judging the responses to Iain its just a matter of time ):

  • Snap.

    What's irritating for me is that my GP just laughs and says it happens to everyone as they get older.

    While he may be partly correct, all the stories above, and my own experience, tells me this is likely a symptom of Ataxia.

  • Hi, this happens to me,i just cannot think of the word i want to say or the name of some thing and it drives me nuts!! it does not happen a lot but i hate it. I am 67 and it maybe down to ageing,but i do have inherited Ataxia so it may be that what's causing it. But i think most people do it every now and then,i have a friend who forgets what she was saying mid sentence,she is in her 50's and does not have Ataxia!!!!

  • This happens to me all the time and it is so fustrating for me and other people. I start with a story about my daughter and it end with something about my cat because I forgot what I was saying or used the wrong word so ended up elsewhere. I also think I've started a conversation and ask a question about it and nobody knows what i'm talking about!! I feel bonkers lol

  • I've had problems like this all my life and I'm 39. I've always avoided conversations - it really annoys me; I tend to not talk to people. I do think that people think I'm rude but I really struggle to start conversations or keep them going.

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