Having a voice when disease cuts it short
May is Better Hearing & Speech Month – a time to appreciate and celebrate speech-language pathologists (SLPs), and the field in which they practice.
SLPs are experts in communication. They treat common and complex speech and swallowing problems in both children and adults. But diving deep into an amazing spark of technology showcased in the documentary Gleason brings to the forefront hope for those battling ALS and other diseases such as cerebral palsy and stroke, who lose the ability to speak. Hennepin Healthcare offers eye gaze devices to those patients who have lost their voice.
Simply put, a patient who is no longer able to use speech or voice has a tablet computer mounted on his wheelchair (or other device). The patient selects letters with his eyes to make words (or preselected phrases such as please and thank you). A special eye-tracking camera below the screen observes one of the patient’s eyes and translates it into speech, which is then spoken by a computer.
Kim Churness, SLP at Hennepin Healthcare, recalls a time when a patient with advanced ALS used an eye gaze device for the first time. She was unable to use her voice for the past year and was new to the Hennepin Healthcare ALS Center of Excellence. The moment she tried the device, Kim recalls, “Her eyes lit up and her whole world opened up. She was able to use her eyes to text friends, make appointments on her calendar, email family/friends, and post on social media. Her daughter reports not only has her mood and independence significantly increased but so has her relationships with family/friends. This was a life changing moment and they report being ‘forever grateful’.”
To avoid the robotic voice associated with these devices, such as the familiarity with Stephen Hawking’s voice, patients can ‘voice bank’ which means in the early stage of their disease, their own voice can be recorded. When the ability to speak does end, their own voicebank is used so they can sound very similar to the time when they could still speak.
With amazing technology, comes expense. The Gleason Foundation and the ALS Association provide devices to Hennepin Healthcare ALS patients who do not have insurance to receive their own.
The Gleason Foundation was founded by Steve Gleason, the ex-New Orleans Saints safety who will be forever known as blocking a punt which lead to a touchdown in the first play of the first game at the Superdome after Hurricane Katrina in 2006.
Gleason was diagnosed with ALS in 2011 and has since been an advocate for the treatment of the disease believing technology can act as a cure until a medical cure is found. He believes everyone has a right to the technology to get back their voice. His documentary premiered at the 2016 Sundance Film Festival. He is the first NFL player to receive the Congressional Gold Medal, the highest civilian honor awarded by Congress.
Kim Churness, MS, CCC-SLP is a speech-language pathologist (SLP) at Hennepin Healthcare. Kim, along with 15 regular and 7 casual SLPs work with inpatients and outpatients providing diagnostic, treatment and educational services to our patients with speech problems.
Recognizing the work they do, May is Better Hearing & Speech Month.