Kim Churness, Speech Language Pathologist for the ALS Clinic of Excellence, met Maria Letico at a conference in Montreal, Canada. Maria was advocating for her association in Mexico City, FYADENMAC, whose patients did not have access to communication devices. For anyone with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, a communication device can greatly improve your quality of life. ALS is a progressive neurodegenerative disease that affects nerve cells (called motor neurons) in the brain and spinal cord. This impacts muscle movements and causes muscle weakness often impacting ability to walk, lift/grasp objects, eat independently and talk. Whether in the early or late stages of the disease (dependent upon location of onset), an average of 80-90% of patients will no longer be able to communicate using natural speech.
FYADENMAC serves an average of 70-100 patients; many of those individuals struggle to talk to their loved ones and do everyday things that require communication.
A comment Maria made at the conference is something Kim will never forget: "What a gift it is, to bring someone's voice out of silence." Those words spurred Kim. With the support of five gracious and compassionate family members of people with ALS, financial support of the Hennepin Healthcare ALS Clinic of Excellence, ALS Association, IT team at Hennepin Healthcare, and Tobii Dynavox, Bilingual Tech Support and Bridging Voice, Kim and her husband Max Anderson were able to donate five eye gaze devices, five floor mounts and ten iPads to FYADENMAC.
Kim and her husband were able to teach members of the clinic how to use the iPads and eye gaze devices. One patient learned the device within minutes and took the device home the same day. Her family was so excited and could not stop expressing their gratitude. It took less than ten seconds for her to type out a message to her family with her eyes whereas before they were using an old kid's toy (ABC styrofoam puzzle) to slowly navigate their mother's messages. To say people were both laughing and in tears as she "spoke" is an understatement.
Despite the flaws in the US healthcare system, it was a humbling experience for Kim to see what many people take for granted, including access to technology and devices through their insurance and even the local associations and professionals to teach them how to use the devices. Bringing someone out of silence truly is a gift – to be able to talk and communicate with those we love most.
Thank you to the families who donated their gently used eye gaze devices and stands to this amazing mission! It'll make a difference to many patients throughout Mexico.
In remembrance of Charles House, Helena Sorbo, Kevin Geraghty, Lynn Giovanelli and anonymous.
About the author
Kim Churness is a Speech Language Pathologist who has worked at Hennepin Healthcare for the past nine years. Her involvement with the ALS community began during her externship at the VA hospital in Madison Wisconsin and clinical fellowship at the VA hospital in San Antonio Texas. The amazing patients she met there and through the ALS Clinic of Excellence taught her what resilience and perseverance look like despite having a devastating illness.
