Does anyone happen to know what the actual problem is with an ataxian voice? Presumably, it’s a muscle but which muscle - voice box? Tongue? Lung? Wind pipe? Or something else?
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I don’t know for certain but it’s possible this could be linked to Laryngeal Dystonia.
Laryngeal dystonia (LD) is a chronic voice disorder characterized by spasms of the muscles of the voice box (larynx). These muscles control the voice. The spasms can result in tightness in the throat, recurrent hoarseness, and changes in voice quality and/or difficulty speaking. The most frequent sign of this disorder is a sudden, momentary lapse or interruption of the voice. When affected individuals speak, their voice may sound strained, forced, strangled, breathy, or whispery. Speaking becomes less natural, and often requires great effort. In severe cases, an affected individual may be barely able to speak. LD can potentially cause significant quality of life issues for affected individuals impacting both work and social situations. There is no cure for LD, but the disorder can be treated. In most cases, the cause of LD is not known.
LD is a form of dystonia, a group of movement disorders that vary in their symptoms, causes, progression, and treatments. This group of conditions is generally characterized by involuntary muscle contractions that cause abnormal movements and positions (postures). LD is classified as a focal dystonia because it affects a specific part of the body (muscles of the voice box). The most common type of LD is spasmodic dysphonia (SD).
Copied from www.rarediseases.org (search ‘Laryngeal Dystonia’)
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Goodness gracious Beryl, you know the lot!!! You really should be a neurologist.
Oh yes, thanks as well. Just what I was wondering.
That’s one of my problems! It’s very frustrating. I have balance issues, voice issues, and handwriting issues. According to the internet, it’s classic late onset Ataxia. So I can’t do anything!
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That’s why we’re here - all stood together in the same mucky puddle.
Check out the Parkinson voice project, lots of good tutorials etc. (PD & Ataxia have a lot in common) https://www.parkinsonvoiceproject.org/
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Thanks. There’s some good ideas here, very suitable for me with more than one problem.
I also have this problem and find myself talking less because it’s so difficult for people to understand me. I also don’t like the feeling that I appear stupid.
Thanks for the information, I know I’m not alone with this thing called ataxia and I’m so very thankful I found this website. M.L.B.
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MS is another condition with similar speech problems. This is copied from www.mstrust.org.uk
What can I do if I have speech problems?
- Try to speak slowly and regularly. Try to keep sentences short.
- If possible, try to plan to have important conversations when you are feeling least tired, as fatigue can make communication more difficult.
- Make the most of non-speech aspects of communication like facial expression, gesture and even referring to photos, written things or objects
- Using email or texts might be easier than speaking to someone on the phone when speech is difficult
- Check with your listener that they understand what you’re saying. If there are problems, this can avoid misunderstandings.
- Plan and support more complex conversations by making written notes and referring to them
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I’m not bothered about appearing to be stupid. Everyone who knows me knows I’m not stupid. What everyone else thinks about me doesn’t really matter. I met someone new a few weeks ago. She probably took one look at me and guessed I was a bit stupid. I hope by now she will know that I’m not as stupid as she first thought.
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I’ve got a mobile app called ClaroCom. You should be able to download it for free from Google Play. I think it might be incompatible with my Android so I can’t make it work. You’re supposed to be able to type phrases into it and it will speak for you.
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Thank you for you responses. I am new to an independent living facility and I also know I’m not stupid, it’s just I never know when I’ll have an episode of mush mouth. It usually happens every day but not all the time. Fatigue and tension seem to be triggers. I find
That if I have a phone call I have to make, if I review the facts out loud and rehearse them, I have less trouble . Keeps me off the phone a lot!!!
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Have had Sporadic Ataxia for more than 22 years. Yes my voice is harsh (not sexy) but the best thing I have found is keeping my tongue exercised. I learned these exercises from a voice specialist at least 15 years ago. My additional problem is that I have issues with anxiety so many times cannot get the words out or started. I think it is the voice box and the tongue.
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Thanks for the info. What tongue exercises might they be?
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You wiggle it. Inside outside, upside, down side, left, right, touch you nose, and you chin bulge it, flatten it. Everything you can think of. Oh, and stretch it all the time.
Know what - I’m an Ataxian, difficulty speaking, 72. The psychological aspect has played a role with me anyhow. - Philip
I have not forgotten your question and will respond. Unfortunately my Rheumatoid Arthritis is acting up so just taking it easy.
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Tried to find the exercises in my OPCA file but they are gone, but have done these for years so maybe you can understand. If I don’t do my exercises for muscles (mouth, tongue, throat) I can tell because everything gets loose. Just like all exercises for your muscles you need to do them every day to see improvement. You can always Google tongue and mouth exercises.
My favorite exercise of the 8 is the one for swallowing: Put your tongue on the roof of your mouth right where you have the bone behind your teeth. Hold for the count of 3 twenty times. I also take small bites, avoid dry foods and eat slowly.
- Put your lips together and blow out your cheeks. No air should get from your lips. Hold for count of 3 twenty times
- Stick your tongue straight out. Hold for count of 3 twenty times
- Stick your tongue with the end curled up. Hold for count of 3 twenty times
- Stick your tongue out the right side of your mouth. Hold for the count of 3 twenty times.
- Stick your tongue out the left side of your mouth. Hold for count of 3 twenty times
- Curl your tongue back and up on the roof of your mouth. Hold for count of 3 twenty times
- This exercise is spoken and do each for the count of 3 twenty times.
Ya, ya, ya, /la, la, la, la,/ na, na, na, na /d, d, d/t, t, t
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These tips were posted a while ago by Kati.
https://forum.livingwithataxia.org/t/oral-motor-exercises-to-try-at-home/83
I have a swallowing physio about once a week. I asked for speech therapy but she says swallowing is more important because if you don’t do it right, bits of food can go down ‘wrong hole’ and then go mouldy or similar. You can then get a life-threatening chest infection. These people know a lot. She even knew there was an ataxia clinic in Sheffield (nearest for me) while neither my neurologist nor my GP seem to know anything.