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Roxanne

Member
Joined
Nov 26, 2016
Messages
12
Reason
Loved one DX
Country
US
State
Maryland
City
Glen Burnie
I just joined this site today, and am so very thankful! My Nephew is newly Dx'd ALS, and I am trying to educate myself and my family. I am an HIV/AIDS nurse....but this is a whole new journey. My Nephew has garbled and nasally speech....is he a candidate for Voice Bank, or should he explore another opinion (s)? Also...what antidepressants are recommended for saliva reduction? We are located in Maryland, and he will receive care @Hopkins. Thank you.
 
Most. ALS doctors will prescribe something else but Remeron dries my mouth out and knocks me out at night. There are others but they gave too many side effects for me.
 
Thank you, Kim! Did you utilize Voice Bank?
 
Voice needs to be clear for voice banking not garbled. My hubby has banked his voice but 2 years on his voice is just being affected now.
 
As Gem said if his voice is garbled voice banking won't work. If he can, though, he should try to make a couple of recordings for his child if he is understandable at all. If sounding like himself is important model talker recommends if you can't do the voice banking ask a sibling or other close relative. Won't sound like him but would be closer than generic voices.

If he is bulbar with good hand function text to speech programs abound and are available for different operating systems free or inexpensive. Down the road when he needs eye gaze type technology Hopkins has an assistive technology clinic and he can try different options

If he is bulbar he should ask about nuedexta. It is for emotional lability but there is some indication it can help slow down some bulbar symptoms temporarily.

There are various strategies for dealing with the saliva problem.

Has he been to Hopkins yet?
 
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Thank you for taking the time to write me! He has been to Hopkins, and we were supposed to go to ALS clinic right after seeing neurologist...but, because Neuro redid tests...they cancelled clinic appointment! I was VERY mad/disappointed...they apologized, and handed him a pamphlet!!! His Son is really struggling to understand him, which I didn't expect, given they live in same home.im going to write down everything you said, and share it with his Wife. My Nephew is Derek.
 
Thank you, Kim! Did you utilize Voice Bank?

No. I can still speak but I downloaded verbally for my iPad and upgraded to the full edition which allows you to type entire sentences in and later use them. It's someone else's voice and I don't even know if I will be able to use it but I would recommend it if the voice is already not good.
 
I would recommend any voice bank he is able to do. My voice has been gone well over a year, and my family members have commented that they cannot remember what I sounded like and they miss it. Good luck.

Ken
 
Thank you everyone! I appreciate all of the information! Thank you for reaching out and sharing your stories, advice and suggestions!
 
When I Google Voice Bank, I am overwhelmed! What are reputable sites? Sorry for so many questions! Thank you again!!!
 
I use Dynavox on my Ipad and it works very well. I can speak with it save words, phrases, sentences what ever I want. I Highly recommend it.
 
I banked my voice with ModelTalker. It required quite a bit of effort, but it was very well worth it.

It is free, and they require that you submit samples to confirm your voice is still good enough to be able to bank. That part was easy.

I did the voice recording first thing in the morning when my voice was best. I prepped my voice like you would for public speaking (no dairy, warm liquids) and only recorded for as long as my voice was strong. That was often only 10 phrases but on some days I recorded 100 phrases. It took weeks to record the necessary phrases.

I found the recording software to be sensitive to the microphone I used. I successfully used a Sennheiser PC 8 USB headset running on Microsoft Windows 7 (OS probably does not matter). I failed with other headsets.

Highly recommended.

Steve
 
Hi Roxanne, I don't have the answer to your question - but I did want to say my sister is newly diagnosed with ALS and I am in Pasadena, MD. My sister is 49 and lives in England. I am biding my time, seeing how it progresses and learning as much as I can.
 
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