SCA6 and speech difficulties

[pammyann]

I have SCA6 with plenty of wobbles and swallowing/speech difficulties. People have problems understanding my speech but to me it sounds normal. Anyone else with this situation and if so how do you cope with it? PammyAnn

[neta]

I have speech issues. I find my mouth tires. I try to read aloud 5 newspaper articles each day

[pammyann in reply to neta]

Thanks Neta - all suggestions are welcome. PammyAnn

[gossy]

I have sca6 I also have to be careful what I eat for choking and my speech goes if I get stressed or over tired My husband usually notices it before anyone else and tells my to have a nap when it happens apart from talking slowly and not getting stressed or tired only other thing is get refereral to speech therapy

[pammyann in reply to gossy]

Thanks Gossy

[wildstyler]

To look on the positive side , I find I can say whatever I want , then the problem lies with other people understanding me, I know what I said.

[pammyann in reply to wildstyler]

Thanks.

[Litty]

Oh yes. Practise as much as you can. I am reading this, have the radio on and reply or repeat, sing along with itunes.

I was very lucky had a wonderful private speech therapist for many years and we are all very different - sorry would not let me attach example!

I use thickener too - I prefer ‘Thick and Easy’ but they do ‘Resource ThickenUp’ and have great websites

dysphagia.org.uk/thick-and-...

nestlehealthscience.co.uk/b...

If technical there are lots of talking apps out there.

I have a very good NHS speech therapist now and she is trying to get mr a technical aid but round here you need to have physical aids so she has laminated me an alphabet chart (very useful for odd words) and a communication chart to point to.

Hope this helps x

[pammyann in reply to Litty]

Thanks Litty

[Staggy1]

Hi PammyAnn, my twin sister has more issues with her speech than me. It gets a bit frustrating when you have to repeat yourself, sometimes I don't speak loud enough... I know it's not useful but you're not alone! X

[pammyann in reply to Staggy1]

Thanks Staggy

[ladyntramp]

Hi Pammyann, short answer is I just get frustrated. I go to great lengths to try to make myself understood, and yes the words sound perfectly clear to me, but unfortunately there are times when people just can't understand those words - or am I speaking a foreign language, one I have never learned? I also have a choking problem. To help alleviate these two problems I try not to speak when I am excited or I find something funny, and when I sit down to a meal I try not to speak again until the meal is over and everybody has finished eating. Sometimes I feel as if this makes me seem unsociable or that I am being a pig by just eating and not speaking to anyone, but when the alternative is choking I think perhaps I have chosen the lesser of the two evils. I have wobbles (dreadful balance and shaky hands), I remember a time when I threw a cup of coffee all over my husband's computer keyboard - obviously I no longer carry cups of coffee etc. I always try to stay positive (sometimes I fail miserably) but as I love to laugh I am often the subject of my own jokes. I look for funny things, surround myself with happy people and always look for the bright side of things. What hurts - hurts, what aches - aches, I get very tired - but not always at bedtime etc., but I try not to dwell on these things - they are negative and I need positivity in my life. So all I can say is stay happy, stay positive and enjoy as much as you can. All the best Barbara.

[pammyann in reply to ladyntramp]

Thanks Barbara - very useful. You sound just like me! PammyAnn

[Sqd-2415_hoc]

Get your GP to refer you to a speech therapist who can see what happening. Eating Technique and exercise programme. Cross between "King's Speech and "Gorilla's in the Mist" Being a bloke cover most of these whilst shaving.

Rodders

[pammyann in reply to Sqd-2415_hoc]

Thanks for your reply.