I used to talk – a lot. I talked about anything and everything.
One evening, while telling a story to some close friends, they noticed that there was something not quite right with my pronunciation of the letter R. We had been drinking wine, so I chalked it up to that.
However, when I was sober, I noticed that indeed I was not properly pronouncing the letter R, which sounded a bit like I was putting on a posh British accent.
I decided to see a doctor about it, which began a 15-month journey until I was diagnosed with bulbar-onset ALS.
Over those 15 months, my ability to pronounce certain letters deteriorated, but this did not stop me from talking. I would tell people I have a speech impediment that doctors are looking into and then launch into whatever I wanted to say.
By the time I was diagnosed with ALS, I had to slow down and speak more deliberately to be understood. This was challenging as I was a fast talker, and it put a crimp in having conversations with people.
I was told by the ALS clinic team about a text-to-speech app called Speech Assistant AAC that could help when people had trouble understanding me. As my ability to pronounce sounds got worse, I began relying on the app more and more.
This was frustrating as I usually have something to say and had to become choosy about what I actually say via the app, leaving out most of what I wanted to say. This also made conversation stilted and nearly impossible in loud environments, as it’s hard to hear the app with a lot of background noise.
Today, I’m barely able to speak, but it’s not a lost cause. In one-on-one or small-group situations, I can be part of conversations even if my comments via the app are sometimes a bit behind. People are patient and caring and do their best to make me feel included. And head nodding and thumbs up or down help too.
Another bright spot is that the app uses my own voice, as it sounded before my ALS symptoms began. This was possible as I had more than the minimum of 30 minutes of recordings of me talking that Eleven Labs requires to produce a professional voice clone. As you recall, I used to talk a lot.
Hearing my former voice makes me, my friends, and my family very happy. And it’s been fun changing punctuation to see how the voice clone mimics my former intonation.
If you have been diagnosed with ALS and your voice has not yet been impacted, bank your voice as soon as possible, as the time may come when you will need it. And if your voice has already begun to change, see if you can find 30 minutes of your voice before your symptoms started. Check videos of family and friends and see if anyone kept any of your voice messages. You may be surprised what turns up.
I dream of being able to talk again. That’s why finding a cure that not only stops the progression of ALS but reverses it is crucial. Please give generously.
Allen Braude is the Associate Director of Communications at a national charity. He was diagnosed with bulbar-onset ALS in February 2025. He lives in Toronto with his husband, Ken.
Watch the recording of the ALS Canada Webinar: Voice Preservation for more information on voice preservation.