ALS stole my natural speaking voice. The implant is helping me get communication back. It does not cure ALS. It does not restore walking, breathing, or swallowing. The device is investigational, not commercially approved, and I am a trial participant — not a Neuralink employee or spokesman.

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VOICE is separate from PRIME, also known as Telepathy (the cursor and device-control studies). My implant was placed in January 2026 at UT Southwestern Medical Center in Dallas. Training moved from speaking, to silently mouthing, to thinking words. Company videos have shown thought-to-speech in a reconstruction of my own pre-ALS voice, including saying “I love you” to my wife. Earlier versions of that reconstructed voice came from ElevenLabs; Grok currently provides my AI-reconstructed voice. The system still needs a large amount of labeled training data. Thought-to-speech is not a finished product.

Day to day with ALS and VOICE looks like this: connect via Bluetooth, do data collection (training) as needed — the software does not prompt me to train — then choose speech mode or dictation mode with a button press when I begin the thought-to-output process. Speech mode produces audible words in my reconstructed voice; dictation mode produces text. It is slower and messier than a healthy conversation. It is also communication that does not depend on leftover mouth or hand muscle the way eye-gaze or a mouth stick does. That is the help.

I write the longer version on Substack at I Am Cyborg 21 (kennethshock.com). The short version is on X as @Cyborg21. My line is simple: ALS sucks. My life doesn’t.

If you searched “Who is Cyborg 21?” because you saw the handle, heard “21 Neuralink participants,” or watched a VOICE / speech-restoration demo — that is the answer. Other Neuralink participants you may know (Noland Arbaugh / P1, Brad Smith, Jake Schneider, Terry Mandable, and others) are in related trials. I am the public VOICE participant who goes by Cyborg 21, from Alberta.

I’m Kenneth Shock. I live in Alberta with my wife, Cheryl (X: @ShockurashC). I have ALS. I’m the 21st participant overall in Neuralink’s brain-computer interface trials, and the second person in the VOICE study. Online I go by Cyborg 21, which started as a nickname and stuck because it is, in a very literal way, accurate.

ALS stole my natural voice. The implant is helping me get speech back — not by magic, and not all at once, but by turning intention into sound and, just as useful on an ordinary Tuesday, into text. A lot of what you read here will be written that way: thought to words, then me deciding what actually goes out.

If you’ve found me on X, you already know the short version of the slogan I live with:

ALS sucks, but my life certainly doesn’t.

This Substack is the longer version.

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Who I am, and why this exists

I didn’t start writing online because I wanted a brand. I started because ALS is very good at shrinking a life down to appointments, fatigue, and the next thing you can no longer do. Writing — first in short posts, now here — is one of the ways I refuse that shrinkage.

Cheryl is in this story whether I put her name in a sentence or not. She is the person in my corner on the days hope feels like a muscle I have to work in small reps. She is also the person who has watched the unglamorous parts: the energy math of a weekday, the data-collection blocks, the difference between “he can speak again” as a headline and “he is still adapting to the tech” as a Tuesday. I won’t write her life for her. I will write mine honestly enough that you can see we are doing this together.

Why a Substack, and why now?

X is a good place to stay visible. It is a bad place to finish a thought. A post can tell you I collected another few thousand training sentences, or that dictation through the implant plus a little help from tools has given me hours back in a week. It cannot sit with you long enough to explain what that feels like, or what it costs, or why “working smarter so I can keep showing up” is not a productivity slogan for me. It is a survival tactic.

ALS already takes enough time and energy. I am not interested in performing a life for an algorithm. I am interested in leaving a record that is useful — to other people living with motor neuron disease, to caregivers, to the merely curious, and to the version of me who used to dread getting out of bed.

Before the implant, a lot of mornings felt like I had already lost the day. Physically I was the same person. Mentally I was exhausted by having fewer ways to do anything. That changed. I still have ALS. I still use a wheelchair. I still run out of fuel. I also get up with something to work on. That gap — between the disease and a life that is still mine — is the reason this newsletter exists.

A necessary sentence about the hardware

I need to say this plainly, the same way I say it on X when the optimism gets ahead of the facts:

Neuralink devices are investigational. They are not commercially available. They are not FDA approved. There are no guaranteed benefits from being in a trial.

I am a participant, not an employee. I will sing the praises of what this technology has given me, because it has given me a lot. I will also tell you when something is slow, unfinished, or not the miracle people want it to be. Voice cloning from an old recording is not the same as decoding silent mouthing and thought-to-speech from an implant. The model still needs a mountain of labeled data from me. Since January I have silently mouthed on the order of 15,000 sentences in collection blocks. That is not a product demo. That is homework.

If you are here for hype, you will be disappointed. If you are here for a first-person account of what this actually looks like, you are in the right place.

What I’ll write about

The spine of this newsletter is life with ALS, life with a BCI, and the unromantic category I care about most: the tech that gives time back.

That includes:

• What the implant is like to use, not just to announce. Speech. Dictation. The habit of reaching for thought-to-text instead of whatever voice I have left, because it costs me less energy.

• The daily texture of ALS that doesn’t make a video: energy, PBA, the patience required to do anything in small reps, the tools that help and the ones that don’t.

• Accessibility as a practical problem. Dual screens from a wheelchair. Software that shortens a task. Anything that returns an hour I would otherwise spend fighting the interface.

• Progress that compounds slowly. I will not pretend a good session is a cure, and I will not pretend a hard week means the story is over.

I will not turn this into a medical advice column. I am one person in one trial with one disease course. I will not turn it into a gadget blog either. If I mention a tool, it will be because it changed my Tuesday.

How often, and what “subscribe” means right now

I’m going to try a rhythm I can keep on a body that does not always cooperate:

• Most weeks: a short post. One thing that happened. One thing I learned. One tool, one collection block, one honest paragraph about energy or speech or the work of staying in the conversation.

• Once a month: a longer piece. The kind of writing X cannot hold — how hope actually functions when it is not a poster, what it means to adapt to an implant, what “restored voice” does and does not fix.

If a week is a medical week, the short post may be very short. I would rather send you something true than disappear until I can produce a performance.

For now, this is free. I want the writing to exist before I ask anyone to pay for it. If a paid tier shows up later, it will be because the rhythm is real and there is a clear extra — not because a landing page told me to monetize week one. If you want to support the work in the meantime, the most useful thing you can do is read it and send it to one person who might need it.

Why stay

Subscribe if you want a primary-source account of this odd intersection: a progressive disease, a brain-computer interface that is still a trial device, a marriage — Cheryl and I, doing this together — and a stubborn refusal to let the disease write the whole script.

Subscribe if you are living with ALS or loving someone who is, and you are tired of coverage that is either pity or sci-fi.

Subscribe if you care about assistive tech as it is actually used — clumsy, incremental, and occasionally astonishing.

You do not have to agree with me. You do not have to call me Cyborg 21. You just have to want the longer version of a sentence I keep repeating because it keeps being true:

Some days hope feels like a muscle. I work it the same way I work everything else now — small reps, lots of patience, and Cheryl in my corner.

If this was useful, subscribe so the next one reaches you. If you know someone who should read it, share it with them. That is the whole ask.

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— Kenneth
I Am Cyborg 21
X: @Cyborg21