Hi all and happy almost new year!
Since the post and video below went live, we’ve had numerous inquiries from patients on being proactive. It is exactly why this woman wanted the video to be shared! Thought I would share in case it can help you encourage your folks with ALS to be proactive with doing the authentic message banking™ process and then later double dipping.
I am so grateful for the people with ALS (my patients) who want their efforts to be shared so others may learn; especially hoping that other people with ALS will watch and be proactive. This week, this woman who lost the ability to speak, gave me permission to share her first exposure to the synthetic voice we created for her through 'double dipping' her recordings from our Message Banking™ process in collaboration with Acapela. She told me to include her face and tears of joy in the video but I did not record her face as she was so tearful with happiness, I thought it would be intrusive. This four-minute video captures a tiny glimpse of how she chooses to live and communicate with faith, joyfulness and authenticity with her own messages and a close representation of her own voice with this awful disease.
Video: https://www.youtube.com/watch?time_continue=2&v=SSzuEzO_MIc&feature=emb_logo
Best,
John
John M. Costello
Director, Augmentative Communication Program and
ALS Augmentative Communication Program
Boston Children's Hospital
781.216.2220
781 216 2252 fax
www.childrenshospital.org/ALSaugcomm
FACEBOOK: www.facebook.org/acpchboston
TWITTER: ACP/ALS ACP
@costello_j