Yesterday, I set out to conquer the world of voice banking. For those who are uninitiated to this fairly new and exciting technology, it’s software for people whose ability to speak might become compromised. Many—though not all—ALS patients will face deterioration or outright loss of speech in the course of their illness.
An article on the Muscular Dystrophy Association website says:
Not everyone with ALS loses their voice, but it’s a common symptom, especially in bulbar-onset ALS. While there’s no easy way to prepare for this prospect, “voice banking” is a viable option for preserving your unique sound and the identity it represents.
Ideally, you start early, before your voice is affected, which is where I am now. The program that I will be using is called ModelTalker. You read words and make letter sounds into a microphone for about 16 hours to try to capture as much as possible for future communication. The result is a computer file of all the vibrations you made, which can be used to synthesize your voice and allow you to sound like yourself, even when you can’t actually talk.
There is also something related called message banking, where you read everyday phrases, like “That’s ridiculous” and “Oh shit.” Those are just two of the many examples on the handy little sheet of suggestions given to me by the speech therapist at my ALS clinic. It’s comforting to know that if ALS takes my voice, I will be able to remain judgmental.
That same article on the MDA site said that often the toughest hurdle to cross is simply getting started, but I was ready. I sat at my dining room table with the sheet of instructions and a headset that I had ordered on Amazon. I’ve never liked hearing my own voice, but the idea that it might be taken away provides more than enough motivation to spend a few hours alone, talking to myself. Plus, I love saying “Oh shit” and I want to make sure that everyone can hear it in my actual voice for years to come.
The big question is whether ModelTalker will be able to distill that essence of annoyance that every woman in my family can summon up without effort when speaking to her husband or her mother. That would be truly impressive.
Except getting started was way more complicated than I thought, because all of the information was for PC users, and I have a Mac. No big deal. I reached out to the ModelTalker people and they sent me the appropriate link for my computer, which didn’t work with my browser, but did work with the new browser I subsequently downloaded. I opened up the headset. It had two plugs, though I only have one outlet in my computer. Clearly that wasn’t happening. I’m not the most tech-savvy person you’ve ever met, but I’m also not completely helpless. I ordered a new headset online.
So although I was hoping to regale everyone here with tales of my adventures making all of the different “e” noises available in the english language, it will have to wait. For now, I’ve opted to remain patient and, until my new headset arrives, will prepare popular phrases such as “Can you believe we can figure out technology to store our own voices and use them on speech generating devices like something out of Star Trek, but we still can’t get proper funding allocated toward treatment of ALS?” and “I’ll have what she’s having.”
Links for Voice Banking:
Recommended headsets:
-Logitech G330 or H530
-Sennheiser PC 36
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My FIL has recently been diagnosed and is progressing quickly. We are looking at doing this with him and I was wondering if you had any updates?
I’ve just recently found your blog and appreciate it so much. My FIL never shared a lot before getting sick and has retained that habit so I have a hard time understanding just what might be going through his head. I appreciate being able to understand perhaps a little bit of what he may be feeling. I am so sorry you have to fight this fight and pray for you both and all others affected that a cure is found SOON.
Thanks, Ellie! Updates on voice banking to come, probably next week.