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Ataxia Support

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

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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: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

STOCKED UP ON LOZENGES , SIRUP salt water to gargle…

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

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

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

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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:

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

Hi Linda5, what I find disheartening is sometimes when I’m talking is the look of total disinterest on the recipients face.My daughter says to me that probably in my head my voice sounds worse to me than it really is.
Since being on this site my attitude is changing, it’s not the end of the world, although my wings have been clipped there is still much I can do. I only hope is that my children do not inherit it.My youngest daughter will not even have the test, she says ‘ what will be will be’, Mum you gave me the gift of life.
Positive thoughts to everyone. Love L.

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Hi Lilios
I know what you mean I sound perfectly fine in my head but I can’t say that I’ve found anyone not willing to listen, my family and friend’s know they have to listen carefully and face me as I also wear hearing aid in left ear. So between speech problems and half deaf they no to tune in lol…
As for passing this on to our children I try not to think about, both my children are well a wear and at the moment they are all about supporting me so as your daughter says what will be will be!
My younger sister also has ataxia and it seems heredity from my mother undiagnosed, fairly certain my brother has it also undiagnosed they both have the speech problems and the gait mum also very unbalanced. So not much we can do but support each other and hope for a cure.
Staying strong and healthy for yourself and your family is the best you can do and live your best life. Knowing you have friend’s here is also a wonderful comfort. XO

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you are right…I experience choking these days…losen muscle in the neck, when a healthy person eats, the body automatically shuts one system down

and opens up another…Crumbs, dry food like bread,remnants of a coffee…send me flying, IT IS PARTIALLY BREATHING. One has to concentrate,powder like chocolate drink… what I am doing, eating soup and bread I have to eat wet…NEVER EAT AND SPEAK, dodgy breathing in the mix, bot sure if salvable, by neck exercise…will investigate solution.

I’ll be interested in the result if your investigations. I’ve assumed there is no solution so I’ve never looked for one. I’m not as bad as you - yet - (crumbs, I’ve got something to look forward to) but my voice is terrible - so I’m told - I have mild trouble swallowing and I get very short of breath but one by lovely one, they’re all going so I’ve got some exciting times ahead of me. That’s on top of walking into lamp-posts. Sorry for the humour, I try to look at things light heartedly.
Two men looked from prison bars
One saw mud, the other stars
https://www.christart.com/IMAGES-art9ab/clipart/2710/perception.png
I try to be a star sort of person

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good on you, as one wld crack if taken seriously…my husband has Hodkin lymphoma, that’s what I call serious, 2 weeks at home tired, shattered after a good night sleep, then went to hospital, took another 2 weeks get to a type of cancer as the medics had to wait for a solid type shown only in the biopsy…He is improving…still in hospital, but WILL CONTINUE TREATMENT at home.

you are right, lately quite stressed out, short of breath panting after minimal physical effort, staircase.But I suffer from dormant asthma…no inhalators…no meds…so I know it is ataxia, can work myself to a panic attack did it 2x and my breathing certainly affected. It is all psychological…so NO SHALLOW BREATHING…SPEECH IS SLURRED, BUT AGAIN psychological…The English language VERY KIND TO ME, but caught myself on answerphone, and sounded like a demented woman, slower speech, but good is, must annunciate properly,my native SLOVAK worse, quite demanding on a lot of letter 'R" rolling tongue… and 4 consonants words, so switch to Italian, plenty of vowels…:slight_smile:

Welcome Lilios :blush:
I also am shocked that my voice has changed not only do I stutter at times, which I control by talking slow, I have also developed accents to my voice that makes it sound like I come from a different country or continent. I find humor helps because even though my voice is changing and my mind still works most of the time😊