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
SCA6 and speech difficulties: I have SCA6 with... - Ataxia UK
SCA6 and speech difficulties
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I have speech issues. I find my mouth tires. I try to read aloud 5 newspaper articles each day
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
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.
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
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
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.
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