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Speech Difficulty (dysarthria) - Autoimmune Cerebellar Ataxia

Posted by vball91 @vball91, Sep 10, 2023

Hi all,

I was diagnosed with autoimmune cerebellar ataxia a couple years ago. I have some balance problems, but my biggest problem is difficulty speaking. They say “slurring” is the speech problem associated with this disorder, but I don’t really slur. I talk slowly and it’s difficult to get words out. And I skip or mispronounce vowels, which I think is called scanning speech. Anyway, I was wondering if damage to certain parts of the cerebellum cause speech issues? Or is that unknown? Like what determines if I have speech problems and am not in a wheelchair?

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hamila | @hamila | Sep 21, 2023
In reply to @queenie2030 "Thank you for your thoughtful informative reply to me. I have had multiple ENTs tell me..." + (show)
@queenie2030

Thank you for your thoughtful informative reply to me. I have had multiple ENTs tell me speech pathology therapy would not help me. I have a friend who can only speak with difficulty in a whisper. She has been to speech therapy with multiple pathologists for several years. None of it helped one but. She has seen a dozen doctors and no one can explain the cause of her voice deficiency which she awoke with overnight one night. Perhaps she too has auto immune cause. Her father had PMR.

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I'm sorry you you guys haven't found anything that has helped. Voice disorders can be a complicated to identify the origin. Extreme stress, PTSD, anxiety etc. can cause voice disorders in some cases and people find that the onset is sudden.
While I respect ENT and other physicians expertise and training they typically are not well versed in the treatment and therapy SLPs provide and not just voice related just in general. For voice disorders like yours its important to see an SLP that specializes in voice disorders because while the average SLP may be able to do voice therapy basics they may not have access or knowledge to all the modalities an treatment techniques available. Your ENT is likely speaking in regards to fixing or improving your voice like the Botox did when you were able to get it done. Therapy is highly dependent on the individual, an SLP won't fix/cure a voice disorder but they will work with you on techniques and modalities to improve communication which might not necessarily be verbal/voiced. Treatment may focus on alternative ways to communicate to help maintain an individual's quality of life and participation in socialization. It's important when meeting with an SLP for the fist time is to have clear expectations of the goal of the therapy. Another aspect of going to an SLP is the time they are able to spend on really educating patients. Physicians just don't have the time to spend providing in depth training due to the way the medical system works. There techniques like vocal hygiene that can help with comfort and taking care of you voice. Depending on where you live there may be a clinic that specializes in voice disorders. I live in Oregon and there is a large university hospital here that has a state of the art voice and swallowing institute where ENTs, GI's, and SLPs all work in the same clinic allowing them to work together and consult each other. Not everyone may have access to something like this but I recommend it to many patients who need specialized treatment.

REPLY
1 reply
hamila | @hamila | Sep 21, 2023
In reply to @abuela4 "I have IBM,a muscular disorder, that has given me a swallowing problem and speech challenges. I..." + (show)
@abuela4

I have IBM,a muscular disorder, that has given me a swallowing problem and speech challenges. I work with a Speech Therapist.

The saliva buildup can be, and is, troublesome. I take a medication to dry my mouth.

I live in Barcelona, Spain.

abuela4

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That is a rare disease typically any muscular disorder is going to cause issues with speech and swallowing because the muscles you use for swallowing and talking. It sounds like you aren't able to manage you saliva by swallowing it naturally which is a common issue in swallowing disorders. Keep up the work the speech therapist it takes a lot of repetition to improve your swallowing and speech. They are skills we take for granted until we lose them and actually have to think so hard to move your mouth and throat to swallow.

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hamila | @hamila | Sep 21, 2023
In reply to @vball91 "I sound slow, but my brain works fast. It’s very frustrating. I went to a speech..." + (show)
@vball91

I sound slow, but my brain works fast. It’s very frustrating. I went to a speech language pathologist for a few months.
I kind of graduated, meaning there’s no more they can do for me. Maybe it’s time to go back.

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That sounds really frustrating when the brain moves so much faster than the mouth. Its very common to need a therapy re-fresher. You will also be able to identify if your speech has stayed the same or declined. I often work with my patients to create some sort of script to educate new communication partners on their speech/language disorder to explain it has nothing to do the cognitive function.
Its unfortunate that impaired speech and language are equated with reduced cognitive function. It's really due to society's lack of common knowledge about how the brain works. It wasn't so long ago that children and adults with autism were diagnosed as being sociopaths and sent to psych wards for their whole life.

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queenie2030 | @queenie2030 | Sep 21, 2023
In reply to @hamila "I'm sorry you you guys haven't found anything that has helped. Voice disorders can be a..." + (show)
@hamila

I'm sorry you you guys haven't found anything that has helped. Voice disorders can be a complicated to identify the origin. Extreme stress, PTSD, anxiety etc. can cause voice disorders in some cases and people find that the onset is sudden.
While I respect ENT and other physicians expertise and training they typically are not well versed in the treatment and therapy SLPs provide and not just voice related just in general. For voice disorders like yours its important to see an SLP that specializes in voice disorders because while the average SLP may be able to do voice therapy basics they may not have access or knowledge to all the modalities an treatment techniques available. Your ENT is likely speaking in regards to fixing or improving your voice like the Botox did when you were able to get it done. Therapy is highly dependent on the individual, an SLP won't fix/cure a voice disorder but they will work with you on techniques and modalities to improve communication which might not necessarily be verbal/voiced. Treatment may focus on alternative ways to communicate to help maintain an individual's quality of life and participation in socialization. It's important when meeting with an SLP for the fist time is to have clear expectations of the goal of the therapy. Another aspect of going to an SLP is the time they are able to spend on really educating patients. Physicians just don't have the time to spend providing in depth training due to the way the medical system works. There techniques like vocal hygiene that can help with comfort and taking care of you voice. Depending on where you live there may be a clinic that specializes in voice disorders. I live in Oregon and there is a large university hospital here that has a state of the art voice and swallowing institute where ENTs, GI's, and SLPs all work in the same clinic allowing them to work together and consult each other. Not everyone may have access to something like this but I recommend it to many patients who need specialized treatment.

Jump to this post

Thank you for your informative reply. What does SLP stand for?
I saw the head of the otolaryngology Dept. At the University of Michigan who had over 30 years experience with voice disorders. I trusted his judgement. His opinion plus all the people I have known who had voice therapy received no benefit caused me to not pursue it. I used to notice when I was under unusual stress my voice became more difficult. Currently my life has much health related stress for both my husband and myself. Stress is difficult to eliminate from our lives. Perhaps learning techniques to deal with it in a better way would be beneficial.

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anggdogg | @anggdogg | Dec 29, 2023
In reply to @hamila "Your experience is not uncommon for individuals with spasmodic dysphonia. While Botox can be a very..." + (show)
@hamila

Your experience is not uncommon for individuals with spasmodic dysphonia. While Botox can be a very effective treatment there is also a lot of room for error because the area around our vocal folds is also responsible for keeping things out of our airway. That must have been a scary experience to go through choking on your saliva. Spasmodic dysphonia is a dysfunction of the vocal folds so they don't close together while speaking causing too much air to escape through the vocal folds when phonating. There certainly are autoimmune disorders that can cause voice disorders and other speech and language impairments. There are a few things that can lead to SD to the nervous system causing tremors in the body, dystonia a brain disorder that causes muscles to be very tight and in more rare cases prolonged severely prolonged exposure to stress. SD can certainly be connected to autoimmune disorders depending on the symptoms.
It's unfortunate that people equate speech ability with cognitive function. This is very common for individuals with variety of speech and language impairments. I highly recommend seeing a speech language pathologist if you haven't already done so recently. You can get a referral from you ENT. There are some fabulous clinics around the US that specialize in voice disorders which I highly recommend. While SD is not curable it is possible to learn techniques and strategies that can improve communication.

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THANKYOU, I HAVE IT, MY BOSS IS NOT VERY NICE , SAYS SHE CANT HEAR ME VERY WELL. I HAVE, LIVED WITH SPASMODIC VOICE FOR MY WHOLE ADULT LIFE I AM 65

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 29, 2023
In reply to @anggdogg "THANKYOU, I HAVE IT, MY BOSS IS NOT VERY NICE , SAYS SHE CANT HEAR ME..." + (show)
@anggdogg

THANKYOU, I HAVE IT, MY BOSS IS NOT VERY NICE , SAYS SHE CANT HEAR ME VERY WELL. I HAVE, LIVED WITH SPASMODIC VOICE FOR MY WHOLE ADULT LIFE I AM 65

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Hello @anggdogg and welcome to Mayo Connect. I see that this is your first post on Connect and that you are dealing with spasmodic dysphonia. As a new member to Connect, would you like to share a little about your experience with this speech problem?

For example, how long ago did this develop, and what treatments, if any, have been tried? Is there anything that helps you?

Please share as you are comfortable doing so. I look forward to learning more about your experience with this disorder.

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