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Ataxia Support

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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

: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:

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

: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.