Kristine Copley on Navigating Communication with ALS

CCALS Special Gathering: Recorded on July 20, 2023.

CCALS Women of ALS gatherings are designed to offer connection and unique perspectives of other women living with ALS, female caregivers of persons living with ALS, daughters of those with ALS, or any woman touched by the disease. For this gathering, we welcome Kristine Copley, CCALS Communication Director, to speak on her experience navigating the complexities of communication with ALS and to share some equipment and strategies that have made life easier along the way. Kristine is our resident “Tech Girl” when it comes to communication equipment. She keeps up to date on speech technology tools and computer access strategies and provides advice, implementation, training, and ongoing technical support to our families. Prior to CCALS, Kristine worked for DynaVox (now TobiiDynavox), the hardware manufacturer of eye-gaze-controlled speech devices, and had been in high-tech sales for 20+ years. She has a bachelor’s in finance from URI and is a Massachusetts-certified CNA. She has also been an ALS caregiver since 2014.

--- Chapters:
00:00 - Welcome
02:32 - Maintaining the Ability to Communicate with ALS
07:19 - Low-Tech Solutions
09:22 - Head & Face Control
12:15 - Voice Banking
14:19 - iOS 17 Voice Accessibility
15:30 - CCALS Speaker Series: Tom Meadows, founder of Stevesway
20:02 - Q & A
20:08 - How long do you need to record your voice for a computer to use it for novel sentences?
22:12 - How to work through the challenges of technology and emotional content?
26:13 - What are options when someone's eye muscles are weakening?
30:32 - What are other ways you like to use the communication board?