My pain seems to be taking a short break at the mo - woohoo, but today, have noticed my speech problems reappearing. I find myself saying words the wrong way round to how I have thought them, and still seem to have trouble getting to the word I want. In recent weeks, have also noticed an increase my speech slurring, feels like my mouth is slowing down. Sometimes, no matter how hard I try, what I say makes no sense, brain and mouth won't get it together! Does anyone know how I can sort this out? I don't wanna try speaking even slower when I'm slurring cos I'm scared I'll stop talking altogether! Its horrible when it happens at home, i get so embarassed :-(
I'm not altogether sure who the best person to help with this is, but I suspect it might be a speech therapist. (Most people don't realise it, but speech therapists do a lot of work with patients who have neurological problems.) An alternative would be a neuropsychologist - they are experts in patients with brain damage, which includes MS.
Of course, I could be completely wrong - your GP should know though!
Sorry I can't give you any decent tips: I only slur when I'm really fatigued, I've learned to laugh when I say the wrong thing and I've kind of given up with my word finding problems - I just say things like "You know. That word that means..... The red, round thing..... etc" while waving my hands about. Not exactly the most effective rehab programme :-( One thing though: please don't be embarrassed (especially with friends and family!): IT IS NOT YOUR FAULT!
There are times when I stutter and trip over my words. More often though, I just can't get my words out. When I do, I get them in the wrong order, say the wrong word completely or not be able to remember the word that I wanted in the first place so the conversation then becomes a bit like a guessing game for the other person! It's definitely worse when I'm fatigued more than normal, under pressure or stressed out.
It's the same with the stuttering. I've never had speech problems up until these last couple of years and I now find that there are certain words that I can't say at all - I just can't seem to get my tongue round them. So I try to avoid those ones altogether!
I mentioned it to my ms nurse and she suggested that I see a speech therapist who would be able to help, I've not done this yet although I suspect I will in the not too distant future!
Make a note of when your speech seems to be worse - whether you're particularly fatigued for example and mention it to your neuro/GP/Nurse because there is help available. For example, I know that everything is definitely worse for me when I'm at work because I'm always under pressure and whacked out.
It may sound silly but I try to play a memory game - the ms trust has some on their website - or a crossword everyday. Obviously it doesn't help with the speech but I find it helps with my memory and cognitive issues and I feel immensely pleased with myself when I complete them
Above all, as Karen said, please don't feel embarrassed. When it happens take a deep breath, relax and try again. Personally I try to laugh it off and I'm fortunate that my family, friends and colleagues laugh with me - not at me.
Thanks for the tips, unfortunately I don't have a neuro, or MS nurse to speak to, or even GP, as still trying to find one who will take me seriously. The last one I spoke to about it, immediately said " oh its just stress" and moved onto the next symptom. Not even giving me the chance to say I had not been stressed for ages. I did notice it was really bad when I was stressed, in fact I thought it was stress initially, until it started happening when I was no longer stressed. My family don't know of my troubles, cos I was in denial for so long, I got into a good faking act that everything was ok. They have no idea that I really can't control whats happening.
But reading your posts, I think it might be moreso when I'm tired, so will try and keep a record thanks, memory games sound useful thanks, will go and have a look at those, I try to keep my brain active as much as poss, but it seems it doesn't take much to knacker it these days :-(
Also, does anyone find when reading, that they read words the wrong way round too? Or that they have to continually read certain lines of a book cos it feels like it hasn't registered in their mind?
I have these issues, and I've invested in a nintendo DS and the "brain training" game. It could be all in my head, but I think it's helping with the memory issues! I've been doing puzzles and braing training exercises almost daily -- I suppose just so I can feel as if I'm doing something to combat these cognitive issues. It is by far the most frustrating thing. We can take pills to get rid of pain, but there's no pill to help you get your words out, ya know (at least not that I know of).
At first, I only noticed word recall issues (Rizzo, you remind me of myself. I stand there waving my hands around, pointing to and trying to describe the object I mean. My husband, bless his heart, is very patient. Other people must find it annoying, though). I find myself speaking REALLY fast, just so I can get all the words out while I still remember them. People are always telling me to slow down, but what they don't know is that if I slow down I'll lose my train of thought altogether.
I've also just started noticing that I do get words and letters the wrong way around. (example: I won't be surprised if there's an error in this post after I've posted it, even though it looks fine to me now). There's also been some stuttering if I'm put on the spot and have to think of something without being given enough time. I'm not even sure that makes sense? What I mean is, if I have plenty of time to think about what I want to say, I don't stutter. But if I have to answer a question on the spot, I find it difficult to get the words out.
It's a lot to contend with. I do recommend brain training puzzles, though. Maybe a speech therapist isn't such a bad idea. If anything, it can't hurt... Anyway, I sympathize with you 100%!! Big smushy hugs and lots of encouragement! One day at a time... :)
Hi Jules and Heather
Yes, there are times when I can't read a book or paper. I've had ON several times which has left me with residual vision problems too which doesn't help matters. Sometimes parts of the words or page are missing or the words are just all jumbled up. My vision gets blurry at times so there are times when I can see further down the road for - example - than others!
I can't read large 'blocks' of writing either which is why I tend to avoid long posts that are juts one long block or long posts which have none at all. Reading and typing words & letters round the wrong way and things like that are common for me too.
Heather, what you mentioned about the more time you have to think about about what you want to say the less you stutter, I can relate to that - not with the stuttering 'cos that comes & goes when it feels like it. But for example if someone rushes into my office and quickly blurts out something I sit there and I think.....what???
I just can't process information quickly and I just look at them like they're talking a foreign language...lol....a bit mystified!
Jules, the only thing I can suggest is that you see another GP. Make a brief list of your main issues and take it with you. See what they say and take it from there.
Good luck to you both
Thanks for your answers, it makes me feel so much better to know I'm not the only one with the reading thing cos I couldn't find it on any online symptom list which made me worry it was something worse! I have found some online memory games, but annoyingly my Dad is decorating from Sat and cutting off our internet (we have the router in our living room where he is doing it), are there any every day type games i could do which don't require the net just to help myself through? I can't afford to invest in buying a nintendo or anything like that, so kinda need homemade games.
*hugs to both*
If I can't be bothered to fire up my pc then I do crosswords but there are loads of other puzzle books you can buy from your newsagents if you don't fancy that. I know there are board games that require memory skills but then they'll be more expensive.
Even playing something like patience with a pack of cards may help.
It's trial and error really to what suits you.
Okay Debbie, thankyou :-)
Have you heard of the magazines "lucky break" or "that's life"? I don't know if they have them over there -- but I buy those magazines just for the puzzles. They're only $3 each, which is pretty reasonable. If I don't have my nintendo DS with me, I always have one of those magazines in my bag.
Haven't heard of those Heather, but maybe there is something similar in the UK, just a cheap little puzzle book to carry around, will have a nosy in town tommorow, good tip!
You've had some excellent suggestions so far, nothing more I can add.
Just wanted to say in my life now if I can't think of a word I use the word doofer. It can mean duvet, remote control, pen, microwave... it's now used by my other half and my staff when they can't think of a word and they don't have MS. Makes it easier for me and 9 times outta 10 they know what I'm on about from the context xxx
Oh and you can download brain games on your mobile! Some are free others are only a few squid x
Doofer, that sounds like a good one! My mum and I are fond of thingy-majig, and doobry-wotsit, no idea where they come from, but they seem to work for everything regardless of MS (even tho im not dx yet) I'll have to look into mobile games too, thanks all, this has been really helpful!
I said a cracker today to the ophthalmologist! I wasn't going to put it on here in case I offended someone but what the heck!
After my scan he asked me how my other symptoms have been since he saw me last week
"not good to be honest! My body is just not wan_ing at all at the moment!!!" (add a k) - I meant to say my body is just not 'working' !!
There was this dead silence as my jaw dropped! The nurse & the doc just creased when I quickly recovered and quipped "and as you can tell my brain is not connecting either"
eww! shaming!! I couldn't have picked a worse word!!!!
"not good to be honest! My body is just not wan_ing at all at the moment!!!" (add a k) - I meant to say my body is just not 'working' !!"
Oh, dear.... that is funny!!! Hahaha!
…lol…‘doofer’s’ a good one Sarah!
I call things ‘Barney’…and I also find that most people get the jist of what I mean…lol…I even have names for some of my plants 'cos their real names completely bypass me.
Oh dear Jen, that was unfortunate.. funny tho! at least the doc. and nurse saw the funny side!
Very very unfortunate! I'm still chuckling abot it remembering the docs face! But why oh why did it have to be such a horrible word????xxx
Aww *hugs* i expect lots of people on here have been in a similar situation. xx