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Emanol

Active member
Joined
Apr 3, 2018
Messages
67
Reason
Loved one DX
Diagnosis
09/2017
Country
SP
State
NY
City
Lugo
I posted this on the general forum, but thought it was more appropiate for this site...

Hello,

My father was diagnosed with PLS a few months ago and has been experienced symptoms for more than 2 years.

I wanted to ask you all about experiences with speech therapy. My father's speech is unaffected yet and his lung function and breathing are perfect as by the latest tests, done last week. However, I thought it would be good to have some preventive speech therapy to strengthen muscles while he is fine. Our neuro on the other hand was not sure it would be necessary, since there are no bulbar symptoms yet (main symptom is spasticity, quite extended).

Any experience with preventive speech therapy? Those of you familiar with PLS or with slow-developing limb-onset ALS, when did you start noticing problems with your speech, breathing, or swallowing?

Many many thanks,
Emanol
 
I have slowly progressing limb onset ALS and noted slurring and somewhat of a nasal quality to my speech about 6-9 months into diagnosis. But everyone’s different!

Speech therapist recommended I practice touching the tip of my tongue to my upper lip while holding my mouth open, and trying to do this without moving my lower jaw up. However, I’m not really sure there is “preventative” therapy in ALS/ PLS, and the speech therapist at your father’s clinic will advise him.

I recommend he start banking his voice now with ModelTalker before his voice changes. Go to www.ModelTalker.org for information.
 
Emanol,

My husband had respiratory onset ALS, was trached/vented before any suspicion of a neurological problem. He never had speech therapy therapy but hewas able to speak and swallow ( even on a vent) for almost 3 years after that. I'm not sure this will be of any help but i think it does show how everyone progressses differently.

Kate
 
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