I have cerebellar Ataxia, and on bad days it's very hard to speak clearly, and my speech is very slurred. People I speak to, are saying 'What?' all the time, and I can see it's hard work for them and for me. In that situation all my shyness comes up, and everything is just worse!! Any comments or suggestions?
Peter
Ask to be referred to a speech therapist.
I asked when I saw my neuro physio because I noticed her clinic was in the next room.
It was very helpful. She gave me advice and tongue twisters to do at home. It helped me a lot … now I can handle awkward situations.
I was given the option to go to see her regularly but didn't feel I needed to. She did give me her contact details if I needed to go in future.
I saw a speech therapist because frustratingly my speech isn’t good either, I was told to slow my speech down and to speak louder... Cx
I have the same problem. I saw a speech therapist 2 years ago, it was just one session at home in harrogate, I was deemed "not as bad as needing therapy. " years on and I avoid talking on the phone, preferring e mail. Its as if I am thinking of what to say in that moment, and then its too late, the moments gone, conversation has moved on,. Its very embarrassing in social situations, so I just stay quiet. Its hard, because I was a right chatter box
I agree with Cocoa, but you can help yourself, talk out loud rather than think things, I am not mad but I do it all the time. What I am saying may sound stupid but work on diction and hear your own voice, when I know I have to make an important phone call I will always say that I may have a problem with my speech so they don't think I am drunk. So far it does seem I am winning as I am told I actually speak better than I did before! Oh and lots of people still tell me to shut up!!!!!!!!! xx
I have the same problem! I have down loaded a set of tongue twisters (there are lots on line) and I practise them on. the days when Im not chatting socially. I really thinks it helps.
When the @AtaxiaUK gets sorted & allowed back in to their offices, apply for a card. It explains in brief what you have along with some symptoms which include slurred speech, they are invaluable when having difficulties to just get it out of your purse/bag & show ppl.
This is a problem for many and certainly for me. I have downloaded a free app for my phone, which is called feedback recorder. I have an iPhone but I’m sure there’s one for android phones. I put in my ear buds and get immediate feedback as I speak. This goes with the advice above, to speak your thoughts out loud, to slow down and do tongue twisters. With this feedback you can play with your voice, tones, loudness, other voices etc.
For more important meetings I have another device, based on Alfred Tomatis’ work, this is a feedback device too, but works through bone conduction rather than ears. I have an agency for this, though I’m not trying to sell it! Happy to provide better information if anyone wants it, not a cheap option so try the free app route first and follow the really good suggestions already made.
Nigel
My speech therapist suggested many things one was to sit down and relax before speaking
Android natively speaks and predicts text
I too avoid phone use
Hi I to have cerebellar ataxia and like you I get bad days when my speech is really bad. I am reluctant to talk on the telephone or to people I don't know as fear of bieng misunderstood and having to repeat myself. This has had a profound effect on my life, as I am now more or less housebound as I don't like to go out in fear of meeting somebody and having to talk to them, I walk using a walking stick but even then on bed days I walk as if i've had ten pints, my writing is none existent and do not like to write anythingn as it just looks like scibbles. I was interested in your post and the advice offered. I have been wanting to ask the same question but was affraid to reach out, so thank you it's been a great help!
Agreed, at home for like half of the year. Dont meet people anymore i just virtualize myself
Hi, (I’m going to assume you’re called Barry!). I don’t have ataxia but my mum does and until recently I was an occupational therapist. I read your post and just wanted to give you a hug after your piece about being afraid to reach out. It’s really really hard sometimes to take that first step isn’t it and just put it out there. But for what it’s worth, whatever you’re thinking or feeling, you can guarantee there’ll be somebody else, sitting, thinking the same thing. Don’t sit in silence, find yourself a way to just get it out there. If you think about it logically, nobody knows you anyway 🤷♀️, there’s never a daft question. Don’t think about it, the same goes in person, don’t think about it, just do it ... Hope you don’t take this the wrong way, still want to give you a (virtual!) hug! If I can help in any way, please shout 🤗
Hi I hope that this email finds you in good health and spirts in this challanging times, how is you mum? since the last time I read the message you sent I have taken your advice and been asking a lot more questions to my neuroligis and Ataxia uk. I have been trying to entertain myself in lockdown by working on the novel I started and writing some poetry after not doing any for quite a while have rediscovered it, and surprisingly I have been getting a lot of pleasure doing it. I have to thank you for your words of wisdom when I was feeling at my lowest, I still get low days but now feel a lot more positive.
Big hugs to your mum, I knnow what she is going through! keep safe both of you!
I too can’t really speak or write anymore, but I do feel it is easier to perhaps lower people’s expectations by explaining your symptoms first. You’d be surprised how interested/tolerant/kind people can be!!
I went to a Parkinson’s group (there wasn’t an Ataxia group and I was referred by a SLT) where we learned to shout, slow down, sing etc which was useful. Feedback
is good, whether from the listener or IT, apps such as Decimel Meter Anand Voice Recorders. I read a paragraph from book/newspaper on phone to daughter (no video) and ask for feedback regarding clarity, speed and loudness!
Judy
Hi Judy, this is extremely helpful, and very reassuring too. It's so easy to forget how kind and helpful people often are! Peter
I too have had speech therapy with relaxation, but I find reading out load every day helps although it makes me very tired,it does seem to help but I do not use the phone as people think I am drunk.
Yes, phones are harder as there are no visual clues which we all rely on so much. Perhaps even harder now under this Lockdown, with Zoom, FaceTime etc!
Dear Chalpet,
I have ataxia due to Niemann Pick C disease (20+ years) and slur my speech. I see a speech therapist yearly and she said to repeat the alphabet (letters) and count (numbers) as practice. I'm asked to repeat myself frequently, so I usually tell people I don't know that I have a neurological disease that causes me to slur my speech. Therefore, just ask me to repeat myself if I say something you don't understand. My speech tends to get worse if I try to talk for a long period of time or as other's have said, on the phone. I always remember what my grandpa said, as you can't learn anything if you're doing all the talking...,ha! Wise words!!! I tend to be more quiet in a group setting, therefore I'm a good listener and learn a lot...,ha! My best to you..., ;o)
I personally don’t have slurred speech but have always spoken quietly and people struggle to hear me. I find it extremely tiring speaking loud all the time. However members of our support group who have slurred speech have shown Me an app on their iPad or phone which they can type into and then it speaks.
This is very useful. My wife often says my speech is quiet rather than slurred. What is the app called.
I.'m sorry I dont know the app name but I am sure someone on here will be able to tell us before too long.
I went to a speech therapist and had my breathing and speech retrained
I have a lot of slurred speech too, and hate it when it is obvious people can’t understand me. I have a SLT at the NHNN, after my Ataxia consultant referred me. She’s been great at ringing me for Zoom consultations during the lockdown. The main tips are slowing down, breathing etc. I also use a couple of Apps on my phone - a Decibel Meter for loudness, and a Voice Recorder for hearing your own speech (usually not as bad as you think!). I read out loud a paragraph or two from a paper. Phone calls without videos are good for getting feedback from a friend/family. Confidence is a big thing, as always. Try telling others you might not be clear, and offer to say something again or explain Ataxia ie be upfront about issues and get in first! You might be surprised!
Yes, confidence is a big thing, as always!!
Peter i feel your pain. Just try if you can to let them know. And keep going. Don't be embarrassed. I know it is tough. Good luck fella.
Hi Peter my name is sue jobbins I suffer from dysphasia .which effects my speech badly I find it difficult I nearly had two 80.00 tickets from the police .in had to explain my dysphasia they were very interested.
I share your problem and find it worse first thing. To this end I practice speaking the alphabet and sometimes ring a friend who understands and talk to them until it gets better. Worth a try. Also my Speech and Language team (SALT) gave me some practice sheets which I used initially.
Adnyl
I am a 66 year old woman diagnosed with ataxia 6 years ago. Over the years limitations have begun to take over my life. I am retired and a volunteer in the gift shop in our local hospital. Over time I have found it quite frustrating taking gift orders over the phone. My writing is so scratchy I can hardly write a gift card. With my mask on for covid my speech is compromised and I have to apologize when people ask me to repeat myself. My physical symptoms are not a main concern they are just very stiff after sitting for too long or getting up in the morning. I wall walk through my house and have had new railings installed to go up and down stairs. When I go to the store I use a shopping buggy which makes my walking easier.If I'm out with friends I always have someone to hold my arm as I cross the street or have to walk amongst a lot of people. I'm somewhat reticent about explaining to people I have a neurological condition called ataxia which makes me sound like I've had a glass of wine or two as it then leads to my having to explain exactly what is ataxia...not many people have heard of it. So for the time being I think my next move is a speech therapist. Thank you all for sharing your stories! It's giving me strength! !
speech 
