Terminal diagnosis at any age progresses emotionally in phases. Some days you go through all of the phases at the same time, others you are blissfully ignorant and in denial. Much like addiction recovery and other step by step programs, you must master the step you’re currently stepping on in order to move on to the next but in my non-expert opinion, ALS is different because there is no recovery, no light at the end of the tunnel, and no life after completion of the steps. There’s only today.
So like most people (I think), I choose to live life in blissful ignorance most of the time. Terminal disease? Not me! Loss of independence? You hold Phil and watch me prove you wrong. Exhausted? Yeah, but that’s normal, right? I go through phases of Superman caliber strength and stamina to Sally the Snail lifestyle – and everything in between. Some days I want to know everything there is possibly to know about ALS, and others when I can’t spell Amyotrophic Lateral Sclerosis. Thankfully we live in a world of constant suggestions – from our smart phones, from the TV, from our mothers – so on a day of wanting to study ALS, I learned about ALS TDI.
We’ve discussed on many occasions my passion for education and contributing to research so when I received the invite to enroll in their Precision Medicine Program I jumped at the chance to be involved. Always fun to be part of the “in” crowd, even if it’s based on terminal diagnosis – humor saves sanity. I enrolled in this program on 7/8/16 (Casey&Carlie’s birthday, FYI) and have completed various tracking exercises for no clear reason other than they asked me to. Specifically, I have completed the Voice Tracking component of this program 18 times since joining. This is from the portal:
Not everyone diagnosed with ALS experiences changes in their speech at the same time. Some people go a long time before they see changes in these “bulbar” regions. However, in the ALSFRS-R score we measure these changes. The Voice Tracking part of the Precision Medicine Program is meant to help add greater sensitivity to interpreting changes in those questions by asking participants able to record the same phrase once a month. This phrase was chosen based on research suggesting its ability overtime as a tool to determine changes in a person’s ability to speak.
I received the email below on 12/22/17. Absolutely amazing what technology can do. “I owe you a yoyo today” is the phrase I have repeated monthly and below is what the program is doing with it.
This is a note to say thank you, but I confess that it feels inadequate.
At the start of the Precision Medicine Program, we asked you to share voice samples with us. We told you that if we could learn to sensitively detect changes in your voices, we might be able to sensitively measure treatments that were helping those symptoms. This would ultimately help ALS researchers and doctors find treatments that work. We had no idea how we were going to do it, but we knew we’d never figure it out without first collecting voice samples.
For months, maybe years, you’ve called into a phone line hosted by us at ALS TDI to share your voice samples. You may have wondered if anyone was even listening to the recordings. Our clinical and research teams have listened to nearly every single one.
As we’ve listened, we’ve been reminded of one of the key ideas underpinning the Precision Medicine Program: that no two ALS experiences are exactly alike. In listening, we haven’t just heard ALS symptoms in your voices, we’ve heard your diligence, your frustration, your determination, and your humor.
In the past year, we partnered with researchers at Google to learn how to use these data. We’ve shared nearly 10,000 recordings with them. The Google team uses automated machine learning algorithms to parse the data embedded in the voice recordings.
It turns out Google has some smart folks! They’ve made real progress in tracking bulbar ALS symptoms. We are so excited about where the collaboration will take us, not only because of their know-how, but because of their team’s compassion. Like us, their team has listened to the voice files personally and were touched and motivated by what they heard from you.
You’ve told us, month after month, that you owe us a yoyo. Nope. You don’t owe us anything. We owe you our gratitude and so much more. We owe you progress and results. We’ll get there together.