Ataxia without speech problems: I have very little... - Ataxia UK

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Ataxia without speech problems

13 Replies

I have very little speech probs (forget words sometimes when I talk) but when you look up ataxia anywhere it states that ataxia affects co-ordination, balance and speech. This seems to insinuate that you can only have ataxia if you have speech problems. I don't slur my words like many people do.

13 Replies
HarryB profile image
HarryBAdministrator

Hi Iain

I am the same in that I have few speech problems but have a cerebellar ataxia. I have met quite a few people in similar positions. I don't slur my words noticeably unless I am very tired but like you, I do forget words and have word-finding difficulties at times. As we have said before everyone who has ataxia is affected differently and to different degrees. Although I agree the description of ataxia often includes 'speech problems' which is indeed common to all of the ataxias, there are other common symptoms that are not regularly included in its definition that you might have but others not. Just because you don't have one symptom recorded in the literature does not mean you don't have ataxia.

Best Wishes

Harriet

jurgen profile image
jurgen in reply to HarryB

Hello Harry,

I have SCA, I slur my words (say my physio & my neuro-doc) &

typing is getting slower and slower.

What do you think of speech recognition ( like the dragon-software) ?

My friends think there´s no software that could get along with SCA, though

Regards

Jurgen

HarryB profile image
HarryBAdministrator in reply to jurgen

Hi jurgen

I am afraid I have no experience of dragon software. However I have heard people using speech recognition apps/programs on the iPad successfully, both free and paid. I am afraid I don't know the names of these. My advice would be to try everything that you are able to yourself. I know you asked a question specifically on this subject and my impression from those answers ( and those in other conversations) is that there is speech recognition software that works for people with SCA who have speech problems but not all of them work for everybody and you have to search around for the one that best suits you.

Best wishes

Harriet

in reply to HarryB

Thanks Harriet. Its just that I met someone who knew somebody with ataxia and said that ataxia affects speech. I explained that I have very little problems with speech and got a funny look. Just ignorance I suppose?

silkwood profile image
silkwood

Hi Iain

I have speech probs but do not slur.Speech therapist said there was nothing wrong with the nerves in the mouth.No swallowing probs either.My speech probs are more breathing and trying to say sentences.Bit worrying when you don't conform isn't it.

Marie

in reply to silkwood

Although I have little speech probs Marie I sometimes do have problems with choking. My digestive system is not what it should be and suffer chest and stomach pains. Regular use of laxatives and omeprazole tabs helps though

silkwood profile image
silkwood

Used to have digestive probs and hayfever and allergy to red peppers.At one stage thought I had diverticulitis like you.Grew out of the lot in my 40's and developed a very aggressive form of ataxia instead.

You can't win can you?Have had to go in the wheelchair this year but had lots of fun with the rollator.How's the driving??

in reply to silkwood

Have given up driving again Marie. I have hand controls fitted to my car but I started getting craps in my hand when turning the steering ball. Too dangerous for me now. My Neurophysio recons its coming from strain on my shoulder and suggested a shoulder support but extremely expensive

february profile image
february

I was diagnosed with ataxia eleven years ago and slur my words, as well as have some swallowing problems, with choking. I agree with Harriet, as in my case, slurring gets worse when tired (or if I try to talk a lot). My neuro said symptoms vary to different degrees depending on where the cerebellum is atrophying the most. For instance, the left side of my body is a bit more effected than the right, therefore I assume the left side of my cerebellum is a bit more effected than the right side...,that's my theory! My ataxia affects my gait/balance, dexterity, speech, swallowing and vision 24/7 (basically, every part of me...,ha!). ;o)

in reply to february

My left side is worse too february. Whenever I walk even with my rollator I often stumble to the left. My speech too is worse if I'm tired and whenever I feel less relaxed.

neta profile image
neta

My speech sounds more like mumbling than slurring. Good 4 u that u have no such diificulty! I noticed that people often say "what?" to me. A speech therapist in NYC tried to be helpful by giving me exercises to increase my volume and sentences to read with and thumping my fingers. Finally, she advised me to read aloud daily.

(I was diagnosed with CA (auto-immune induced) in 2010 (but felt very lite CA symp toms from 2007ish, didn't know they were serious) and have been taking IVIG (25 grams per month). Cant tell what the affect of this is. I have an abnormal amount of ANA antibodies it seems.)

Lack of balance, (new) hip pains, total lack of awareness of ataxia and lack of empathy, ("you look fine to me") are my main complaints.

The speech thing doesn't help. Writing is crummy but I dont care, and on credit cards etc. I have learned to just scribble initials.

whiterain10 profile image
whiterain10

I also have Ataxia what number God only knows. I have balance coordination bladder, do forget words sometimes but speech is normal thank God.

lottiejemma profile image
lottiejemma

I am the same Ian, I do not Slur, but forget words, Ataxia effects us all in different ways, it affects my feet, with freezing toes, have to keep them covered, or they swell, oh ataxia what a pest it is, but it has given us friends to share here on Health Unlocked

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