Speech

General
1

Does our poor speech make ataxians a pushover?

2

Yes, I think it is possible.

My wife (with (CA) has very bad speech in some conditions. In others she appears to talk fluently, although with some disconnect from reality sometimes (although that could be because she is somewhat deaf).

We were trying to get a permanent visa for Australia for 10 years, and I had to be involved in every discussion with the doctors. Her inability to form full sentences meant I almost had to translate, as I was used to it and knew what she was saying. In the end I answered most of the questions myself.

I would think that without someone to help on that score, most people would not bother continuing a conversation, and may well take advantage if unscrupulous.

3

hi Bernard, my son is 38yrs old, and before he was able to be understood when speaking but I have noticed in the past few weeks his speech is hard to understand, as his mum I hate it that I have to ask him to repeat himself, and he gets frustrated which I fully understand. Laterly he has been asking me to talk to people he may have to deal with in his daily life, as he says it is much easier and pple dont then think he is drunk or on drugs. take care of yourself, I can only imagine how hard this journey is for all who have this insidious illness. kath

4

Thanks for reply Kath
Get your son to think of the good things
In life and to push away the bad.
Regards
Barney

5

or they assume you have learning difficulties..happens with me alot as also in wheelchair and deaf.

6

You spell too well!!





Kati said:

or they assume you have learning difficulties…happens with me alot as also in wheelchair and deaf.

7

@kati- I have the same prob! I am also in a wheelchair, but I have always been very intelligent. It majorly annoys me when people totally ignore my thoughts or treat me as though I am mentally handicapped just because I'm in a chair. I had a eval done by a psychologist and the result floored me. This "trained" man, was unable to understand my answers, so he just wrote down that I got the question incorrect. The final verdict was that I am mentally handicapped! I played 5 musical instrument, went to a school for the gifted, had a 3.8 GPA, but I am not with it. Give me a break!

8

I had speech therapy and for SCA it is quite different from reg speech therapy. They have you read a card or paper and determine which sounds you are having problems with. They give you tactics for pronouncing these sounds and you practice the exercises. If you are so far advanced they give you a list of words and their substitutes which correlate to the sounds you successfully made.
Above all, never stop talking. It only serves to make your problem worse. Try singing your favorite song or a tv jingle singing comes from another part of the brain, not the cerebellum. If you can train that part of the brain to speak, I you have a good start. There is a program called “Dancing with Ataxia.” And it follows the same premise. The act of dancing is also from another part of your brain. If you dance you can teach that part of the brain to walk, hopefully. Try it. What have you got to lose! Keep singing and dancing
Turn on Pandora on your computer get some great music and dance to it. Even if beakers steps are just swaying. Sing your heart out, it’s a great antidepressant.
Rae

9

when you get a wheelchair your whole life changes “learning difficulties” is the elephant in the room. Hence I think ataxians are taken advantage of./

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10

To comment or argue with anyone is hard @ times and I feel people will over talk you and make you more upset.

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11

I’m so glad it’s not just me. I used to be an eighth grade teacher. I was minding my own business when CA sneaked up on me! Now, when people hear me speak, they assume that I’m mentally challenged. I’m not! Here’s a funny story (now). I was on hold for 14 minutes. When a customer service representative finally picked up, she said, “Oh, we must have a bad connection. I can’t understand you,” and she hung up!
At the time, I was appalled! Now, I have to laugh. My sister, thankfully, makes all my calls for me and speaks for me. It’s very isolating. People say “Oh, I don’t mind.” I mind! It takes me a lot of effort to talk!

2 Likes
12

:slightly_smiling_face: You’re so right about the effort it takes to talk. It comes and goes with me, and because I’m aware of this challenge, I pay particular attention to others in my local support group when they have trouble speaking. Even if I can’t understand the whole conversation, it’s often possible to pick out key words and respond :slightly_smiling_face: