Proloquo2Go

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saraht

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Aug 3, 2009
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Loved one DX
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NZ
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Wellington
City
Wellington
Hi

My dad has MND and is having a lot of trouble talking. He's considering getting Proloquo2Go - have any of you used it?

Grateful for any thoughts/feedback

thanks
sarahxx
 
Earlier I had posted that my mother had either PBP or Primary Progressive Aphasia, although she still does not have a clear diagnosis due to negative EMGs, I feel she has PBP. After reading everyone else's signs and symptoms on this forum I am convinced she has PBP. It started in May 08 with slowing of speech to not being able to understand her at all. Although her swallow tests have been negative, she struggles to eat food, she is constantly choking on her saliva. I communicate with her through pen and paper. I looked at the Proloquo2go but I feel that since my mother is not technologically savvy she will get frustrated by it. Pen and paper works for us. I even tried to teach her sign language alphabets but she refused to learn. My biggest concern is her choking on her saliva and tomorrow I am going to an ENT specialist with her and getting a Botox injection in her salivary glands. Have any of you had this procedure done and if so what kind of results have you had? Also does anyone else have the same symptoms as my mother? I feel really helpless watching her go through this and don't know what I can do to help her. Any advice will be appreciated.

Thanks,
Sheena
 
We down loaded that program to my husbands Ipod touch. They have the app on itunes. He uses it when he is on the vent. He mainly got it so he could play and learn how to use it before he really needed it. He seems to like it. It is very user friendly.
 
My husband uses Proloquo2Go on an iPhone because he can still walk, but has little arm strength. The LightWriter was too heavy for him to carry.

It is FANTASTIC! It has changed everything for him. I put it on a lanyard around his neck so he just has to get it into his hand and only needs one thumb to type because the keyboard is tiny. I told him that we could always tape it directly to his hand when it gets too weak to hold it.

It took him awhile to get comfortable & fast with the keyboard (like months). The trick (he tell me) is that the letter is selected when you lift your finger up, not when you touch it. So you can run your finger across the tiny keyboard until you get the one you want, then lift up your finger. Now he can type out a message very quickly.

I cannot say enough good things about the app on the iPhone or iPod Touch. It is a very low cost, light weight alternative to the Dynavoxes of the world. The voices are also much, much better than on the old LightWriter he had been using. He has been to several events (ALS Association, ALSTDI presentation, MDA, ALS Clinic) and always ends up showing it to at least 2 people (at ALS TDI presentation, he was mobbed at the door when leaving by people who wanted to see it).

He also loves the iPhone because he can now text me from where ever he is, plus take photos or videos, and the internet where every he goes. AT&T has a special deal where you can get a data only package on the iPhone (no voice charges) if you have a medical disability. We had to have our neuro do some paperwork, but it saves us all the voice charges per month.

Send me private message if you want more info or additional testimonial :).

Lisa
 
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