Speech problems

[Libra7]

I was diagnosed with SCA 6 8 years ago but my first symptom started about 4 years before that when I noticed that I was slurring a bit and sometimes had difficulty pronouncing words. ( My GP at the time dismissed this and I think he put me down as a hypochondriac!)

After 12 years I sometimes explain to people that I have trouble with my speech and often people say they haven’t noticed it but of course I am aware of my difficulty. About 7 years ago I I started a programme of self help.

I did have a few sessions with a speech therapist but didn’t find it particularly helpful. The reason I I believe I have been able to delay the progression is my reciting of tongue twisters three or four times a week. I do this using some I have downloaded from the web..

I found the best set of tongue twisters on the following web site. Quite a marathon to recite them all in one go so I do half one day and the other half the next.

davidpbrown,co.uk/tongue twisters

Hope some people find this helpful.

[wobblybee]

😂I’ve just tried some of the tongue twisters on the site you mentioned..I need a lot of practice.

I’m Idiopathic…and my speech is deteriorating. My husband often doesn’t hear me speak (he has variable tinnitus)..and just says speak up. But..It’s hard to regulate ‘volume’…so sometimes I end up shouting and emphasising when I speak to him.

[Jellybean75 in reply to wobblybee]

I'm the same with speech and volume. Hubby tells me to stop shouting but I can't help it

[wobblybee in reply to Jellybean75]

It is hard to remember. I have conversation with other people and I’m not asked to repeat or speak up.

But..I found I can’t easily regulate’ the pitch/volume…this results in me speaking slowly and deliberately ..empathising each word ……….or shouting😉

[rsims42]

Thank you, like you I notice my slurring and whilst I have to repeat myself sometimes to my friends I am much more conscious than they are (or at least that's what they say 😀)

I was diagnosed 3 years ago, although realised something was "off" for some years before so a diagnosis, even if it is still idiopathic, was something of a relief (validation?)

I know that deteriorating speech is inevitable for me but want to do what I can to delay for as long as possible the time when I can't be understood without difficulty.

I have also had some sessions with a speech therapist but I will find these tongue twister exercises easier to stick to on a regular basis, you're a star ✨

[ExiledScot]

I will try the tongue twisters you recommend and I may well be ahead of the Speech therapist when I finally get top of the waiting list. My speech is deteriorating since my diagnosis (although my husband and friends say they don't notice, but I know it is). So will try the tongue twisters , when I'm on my own at first!!Thanks for the tip and good wishes to you for the future.

[chelpet]

What I also find helpful is dealing with (some of) my self-consciousness about my slurred speech. I find mindfulness meditation extremely helpful for this approach.

[PatsyIpswich]

Thank you 😊

[Tallguy101]

I was diagnosed with sca 48 in 2006 and I first noticed my poor speech in 2010 when I tried to record a voicemail message, I was quite shocked. I've had 2 or 3 sessions of speech therapy. But TBH I find I have worked out the best things for me. Avoiding certain words that I find difficult to say, breathing properly in sentences and talking a little slower and trying to pronounce words clearly. I've noticed that if I'm talking to someone I don't know especially on the phone or when I'm nervous.

[Libra7 in reply to Tallguy101]

I can identify with your problems. I recently found it difficult to say the word ‘subscription’ but when I got home I practised saying it and now find I can say it normally. I’m sure the practise of repeating tongue twisters helps.

[Tallguy101]

I'll have to give it a go 😉

[peterallison]

When I had my 1st TIA, my speech was noticeably deteriorating and remember sat having a coffee with a work mate at 6am one morning, and had another TIA and was unable to speak at all for a minute. Its been getting worse over the past 3 years. I do not have a phone, and my other half can understand me and speaks on my behalf, I know in my head, what I want to say, but saying it aloud, forget it, and car journeys are often silent, as what I want to say, the moment has past

[Libra7 in reply to peterallison]

This must be so frustrating for you. I often want to join in a conversation but hesitate to do so in case my speech lets me down. I do think though that practising speaking each day, even if it’s just reading out loud a page from a book, helps.

[Jellybean75]

thanks - worth trying