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AnnG

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Joined
May 25, 2018
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4
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Friend was DX
Country
Uni
State
Connecticut
A special friend (David) of mine and my husbands is a 17-year survivor of ALS. David currently has a Tobii Dynavox I-15 (with eye gaze interaction – AAC device) speech generating device. His AAC device is calibrated to his eyes. David was able to communicate (with his wife and family, also with friends via email, and, on Facebook) with his Tobii device until about a year ago when movement in his eyes became increasingly restricted. David has had his current Tobii.. device for about 1.5 years. Medicare provides one communicating device every five years, so he won’t be eligible for another AAC device through Medicare for three more years.

Although David is unable to use his Tobii Dynavox with his eyes, he has movement in his mouth and is able to smile. We are trying to find out if there is another type of device/equipment that could work in the same way for David as the movement in Stephen Hawking’s (famous physicist who recently passed away) cheek made it possible for him to speak. Is there other technology/equipment that calibrated to the movement near his mouth (as he smiles), could help David regain the communication that is vital for his every day life?

We are appealing to anyone who might be able to help us discover what kinds of computer equipment/technology other ALS survivors use to communicate.

We will pass this information on to David and his family to try to give them some hope of information that could give David the ability to communicate again.

Thank you in advance for any advice/information you can provide.

Ann & Mark
 

KimT

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Extremely helpful member
Joined
Nov 18, 2014
Messages
3,200
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Contact Team Gleason. They have grants for communication devices. Also Guardian Angels gives $1,500 grants for any type of equipment. Team Gleason might be able to set him up.

Thank you for reaching out on behalf of your friend.
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
What you're looking for is a 'scanning' system.

Neuronode is one such system.

Just drop Neuronode into Google.
 

lgelb

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Moderator
Joined
Nov 5, 2009
Messages
7,264
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
There are definitely switches that can be taped to the cheek, Ann. Using an interface such as Tecla for the switch if needed, he can then use switch access to scan or use a virtual keyboard in whatever platform he is most comfortable: iOS, Android, Mac or Windows. You can find switches at sites like AbleNet. If you can tell us what platform he is most familiar with, that would help us make more concrete suggestions for setup.

Every state has a TAP (technology access program) that can provide insight and often loaners for trial; the same is often true for SCI clinics, ALS clinics and sometimes MS clinics, as well as special needs pediatric units. Google the state name + technology access program.

What Greg referenced would be the next step up if he cannot make use of a switch, but if there is even one muscle that he can reliably move, he would not require an EMG-activated system.

Let me know if this is not clear!

Best,
Laurie
 

AnnG

New member
Joined
May 25, 2018
Messages
4
Reason
Friend was DX
Country
Uni
State
Connecticut
Contact Team Gleason. They have grants for communication devices. Also Guardian Angels gives $1,500 grants for any type of equipment. Team Gleason might be able to set him up.

Thank you for reaching out on behalf of your friend.
Hi Kim, Sorry for my delayed reply. Thank you so much for taking the time to give such awesome, helpful advice. I will check into both Team Gleason & Guardian Angels for grant help for David. May God bless you and strengthen you always! Ann
 

AnnG

New member
Joined
May 25, 2018
Messages
4
Reason
Friend was DX
Country
Uni
State
Connecticut
Hi Greg, Sorry for my delayed reply. Thank you so much for the helpful information. I will check into Neuronode for a scanning system, as you suggested. God bless you for your kindness. Ann
 

AnnG

New member
Joined
May 25, 2018
Messages
4
Reason
Friend was DX
Country
Uni
State
Connecticut
Hi Laurie,
Sorry for not getting back to you sooner.
Thank you so much for all the helpful information; I will pass it on to David and his wife. I appreciate your time and heart of compassion for others.
God bless you! Ann
 
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