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Ataxia Support

I am new on this site

#1

My username is Lilios and I live in the uk. I have been diagnosed with sca6 as I was adopted it was found out through a blood test. What I find difficult to accept is the change in my speech.

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#2

:slightly_smiling_face: Hi Lilios, welcome. I live in the UK. I don’t have SCA6, but my speech can still be misunderstood. Personally, I know a few people diagnosed with SCA6, it seems some people have little to no problems, yet others are severely challenged. I know myself how embarrassing and stressful it can be when stuttering creeps in, and you can feel almost tongue-tied :confused: Have you been referred to the SALT team (Speech and Language Therapy). Breathing techniques can be taught, and some people find this is very helpful. Have you contacted www.ataxia.org.uk yet :thinking: There are useful links on the website, including local Ataxia Support Groups. On the home page click on Newly Diagnosed and scroll down to a link for Support Groups and AtaxiaUK Branches :slightly_smiling_face:

#3

Hi Beryl_Park, thank you for responding. Yes I had speech therapy before I was diagnosed. It took nearly three years for a diagnosis which was done through genetic testing.I am very conscious of my speech more than any of the other symptoms that I tend to isolate myself. Daily I practice speech therapy rhymes from the internet. I find talking very tiring, what I want to say swirls around my brain but won’t come out of my mouth the way I want it to.
Yes, I am a member of Ataxia UK.
Lilios

#4

:confused: Some members of my local Ataxia Support Group have severe speech difficulties, it’s obvious how exhausting this is, they struggle to form the words and try to express themselves but often give up halfway through a sentence… But, the rest of us have similar difficulties, we totally understand, and everyone gets a chance to air their views :slightly_smiling_face: I know members have been advised by Speech Therapists, and that some people benefit more than others… As you say exercising your vocal cords can be as beneficial as physical exercise :slightly_smiling_face: I know myself how frustrating it is when you form a sensible thought in your head, and unexpectantly complete gibberish comes out of your mouth…:woman_facepalming:

#5

FWIW, I find that speaking more slowly and using a louder volume [not yelling volume] kinda works.

#6

:slightly_smiling_face: I have to remember to do that with my husband, he has Tinnitus and doesn’t hear half my mutterings :joy: I also try to be facing him when I speak, if he’s out of sight there’s no alternative but to yell :wink:

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#7

UNLESS a Roman orator, teacher, politician FORGET about your speech…

I speak English slightly slurred, but boy frightening in my native Slovak…don’t leave voicemail messages, as heard myself once and was rather disturbed hearing my voice, sounded like a serious mental case, it is ONLY YOUR TONGUE that doesn’t work, take it easy, WHEN YOUR BRAIN, then I get worried.

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#8

:joy: I had to laugh at the last bit :slightly_smiling_face: xB

#9

GLAD I made you laugh, Ian started chemo, quite grueling…treatable cancer, whichever way, can do next 10 yrs with it…need more update info, a\s myself a sore throat on and off, my allergies. don’t know much about chemo, but I know one info, Ian cannot come anywhere near colds, sore throat…possible explanation reason for the serious disease, but cannot prove it, so useless…Ian healthy short Viking origin, strong, in the gym 3x a week…active mobile…now a bit different.

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#10

:slightly_smiling_face: Best wishes to Ian, I’ve had chemo myself. It is gruelling, but a necessary evil. Take care of your sore throat, maybe a visit to the chemist might help, hope it clears soon :slightly_smiling_face:xB

#11

STOCKED UP ON LOZENGES , SIRUP salt water to gargle…

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#12

With our speech–it helps to talk slowly and enunciate. People told me I actually improved.

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#13

I did not grow up close to my granddad, from whom I inherited my ataxia. I remember calling his house as a young person and thinking I had called the wrong number. It sounded like I had called a drunk Bill Cosby. My granddad was more of a Jimmy Stewart. Now that I think of it, maybe the two voices aren’t all that different…hm…

It can help if you have a hobby that involves language. Not even speaking out loud. Singing, humming, reading, or even just listening to music can help. It does something for your brain. Kind of tricks you into developing things. I’m not saying it fixes it, but it can slow down the process.

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#14

As far as I understand, an ataxian voice, like all our other problems, is a muscle thing. The nerves which tell our voice box muscles what to do and when to do it aren’t working properly. Now I don’t know about this next bit but I think if those muscles work - but don’t coordinate, absolutely anything can come out. It’s same with an ataxian walk. The leg muscles work but don’t coordinate and our walking looks as though we’re drunk. So an ataxian voice sounds like a drunken walk. Ladybird has said our brain has gone. Well I know what she means because it feels like that but I hope it’s all due to our voice muscles and our struggle to get out what we put in. It can’t be our brain surely when we’re such bright intelligent people.

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#15

Hi Robin, welcome :slightly_smiling_face: I agree with you, once we remember regulate our speech, it is better understood :slightly_smiling_face: xB

#16

Hi Lilios I also have SCA 6 and I find speech very frustrating. I don’t have a answer. I’m just offering support.

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#17

We have SCA 6 Surprisingly, my sisters speech has improved without any treatments. Mine has gotten worse.

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#18

Hi Lilios welcome, this is a great support site to vent or ask about thing’s and learn things. I have trouble with my speech also as many of do with ataxia, some day’s I’m not to bad but some day’s I can hardly get the word’s out especially if I’m tried. Even at my speech therapy today my therapist was surprised I wasn’t doing to well. But I did worn her that I was tried and cranky lol…:blush:

#19

:slightly_smiling_face:Hi David, it’s good to hear from you.