Help with hoarse voice

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katierodel

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My mother was diagnosed with ALS in February 2022, but has had symptoms since April 2020. Symptoms started in limbs but have now moved to bulbar.
She started getting a hoarse/raspy voice a few weeks ago, and her speech has slowed. She is not slurring her words yet though. I was just wondering if there is anything that could help with her hoarse voice? I suggested a humidifier in the bedroom, but is there anything else out there that might help? Also, she has a dry cough.
 

lgelb

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Very sorry to hear about your mom, Katie. A sugar-free cough drop if she is able to suck on/swallow it, dry mouth/throat spray like Biotene, hydration, and resting her voice when not needed are all considerations. There are also voice amplifiers if her voice is or becomes soft.

However, as ALS progresses, her speech will be less easy/not possible to understand, so you might want to start looking into AAC apps and possibly switch interfaces for whatever phone/tablet/laptop she will want to use, if she still has the ability to manipulate a mouse, her head, etc. It's a good idea to think broadly of what control if any, she has over her arms/legs/toes/finger(s)/tongue/lips, recognizing that adaptations will need to evolve over time.
 

katierodel

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Thank you for the reply! I have been researching AAC apps a bit. She still can use her hands a little bit and is currently using voice text on her cell phone, but I'm thinking that she will have to stop using that after some time and will need something bigger than a phone. I think that she will still want to use texting as a way to stay in touch with family members and friends. It is my understanding that texting is only available with an ipad that has wifi and cellular capabilities. Or do you know of any other tablets that she would be able to text with? Thanks!
 

Nikki J

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one can certainly text from a wifi only ipad. I have verizon and there is an app. I imagine other carriers have them. If you are texting someone with an apple device you don’t even need that app. Apple message works.

I have a friend who recently transition to eyegaze. For some reason texts either no longer work or are hard. She uses whatsapp

ask her clinic if they can refer you for AAC. If you are in NJ by chance Bridging voices. I have also heard Children’s in Boston ( which oddly is where the AAC clinic is that Mass General uses) does remote visit consults
 
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