During one week in 2010, Bonnie Shaver lost her husband to pancreatic cancer and was herself diagnosed with Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease. In the 4 years since, Bonnie has gone from traveling the world with the love of her life to traveling slowly from room to room of her small home, her useless arms and hands dangling by her sides. Soon she will not even be able to do that. I visited Bonnie and her caregiver, her sister-in-law Louanne, at her home in Marietta recently. The former IT specialist with a contagious laugh was eager to talk about something affecting all ALS patients. Something she needs to talk about now because ALS will soon rob her of that ability, too. Her cause concerns her voice and how important it is for her, and others like her, to bank their voices, before it’s too late. Using a speech generating device (hers is called a Tobii) Bonnie has already recorded herself saying around 1600 phrases, including the names of her family and cats, her personal hygiene needs, what she’d like to eat, and even that laugh I mentioned. To watch Bonnie work the mouse with her foot, clicking with her big toe, as she enters my name into the machine for fun was a unique experience. It reminded me of how much I take for granted the use of my limbs and my livelihood, my voice. I was also struck by how we are so much more than our bodies. That, as Bonnie’s betrays her, she soldiers on, making sure the essence of who she is, is preserved, not only for her practical use in the final years of her life, but so her family and friends can feel connected and still hear her lovely voice and laugh.
In April, The Centers for Medicare and Medicaid Services (CMS) opted to not pay for these speech generating devices, which can cost upwards of $10,000, and lease them to ALS patients instead. It also chose to not rent to those people who are admitted to a hospital or into hospice care. A time, you could argue, when a machine in which to communicate your needs and final wishes, would be most needed. Then, next month the CMS will make machines like the Tobii, speech generating only. This troubles Bonnie and others because these devices, which can also be operating with eye gaze when you’ve lost all use of your limbs, connects them to email, Facebook, Skype, the phone. It is their sole means of communication. The ALS Association actively opposes these changes, as you might imagine, and has filed formal complaints. It is also working to propose legislation to change what is essentially a regulatory issue, not a legal one. Someone, somewhere, probably thought this would be a good way to save money without realizing the impact it will have on those with ALS.
Bonnie is grandfathered in and can keep her machine. One she continues to update, including on the day of my visit when I asked if she’d included any sentimental sayings. I could hear her typing away with her foot then her voice as she recorded the words “I love you.”
There are some things you just don’t want said in a computer voice.
Visit http://www.alsga.org for more information. Look for my story Monday, Aug. 11 at 11:00 pm and again Tuesday, Aug. 12 at 4:00 pm.