Beyond the Motor System
- Anjali Raghavan
- 1 day ago
- 5 min read
A Lived Experience piece written for World Parkinson’s Day
The last time I saw my grandfather, he didn't look like himself. Or maybe, he looked like a version of himself I hadn't been given enough time to get used to.
That's the strange tax of distance. He lived in Bangalore, and I grew up in Texas, which meant I didn't watch his Parkinson's disease progress the way my cousins did: steadily, incrementally, in the daily way that allows you to adjust. I saw him in intervals. Years apart, sometimes. And so each visit handed me a new before-and-after, a sudden reckoning instead of a gentle slope. The disease didn't announce itself slowly to me. It arrived in leaps. At the time, I couldn’t make sense of what I was seeing. I just knew something had shifted within him, and I didn't know by how much.
My grandfather was a quiet man in the way that truly intelligent people sometimes are, not because they have nothing to say, but because they're selective about it. He didn't fill rooms with noise. He filled them with presence. He worked through crossword puzzles with the focused patience of someone who trusted that the right word would come, given enough thought. There was something deeply characteristic about that, the belief that careful attention rewards you.
He raised three daughters in a time and place that didn't especially encourage women to be loud, ambitious, or certain of themselves. And yet that is exactly what he produced. My mother and her sisters are fearless. They are unwavering. They walked into the world like they had every right to take up space in it. His belief in them was so complete, it never required a word.
I now know what Parkinson's disease does. I work in neurodegeneration research, so I have the vocabulary for it, the technical terms, the mechanisms, the pathways. But stripped of all that, what it comes down to is this: the brain gradually loses its ability to speak fluently to the body. Deep within the brain, the cells responsible for producing dopamine, the chemical messenger that keeps movement smooth and coordinated, begin to die. And as they go, the signals that tell your body how to move become unreliable, then absent. A hand trembles. A foot drags. Getting up from a chair becomes a negotiation. The face stills, losing small expressions. Sleep fractures. The voice drops to something quieter than it used to be. And eventually, the disease reaches further than the motor system, further than the body: into thought, into memory, into the person themselves.
Parkinson’s Disease is the second most common neurodegenerative disease in the world, affecting more than ten million people. And yet there is still no treatment that slows it.
What we do have are therapies that manage symptoms. The most established is Levodopa, a medication that has been the cornerstone of treatment for decades. Because the brain can no longer produce enough dopamine on its own, Levodopa steps in as a precursor: the body converts it into dopamine, restoring some of the chemical signal that movement depends on. It doesn't fix what is broken, but for many people it buys years of steadiness, of recognisable life. For others, when medication alone isn't enough, there is deep brain stimulation, a surgical procedure in which small electrodes are implanted in the brain and connected to a device, a little like a pacemaker, that delivers carefully calibrated electrical pulses. For the right patients it can meaningfully reduce tremor and restore a degree of control.
Then there is the subtler, daily work: physiotherapy to keep the body moving, speech therapy to preserve the voice. None of it stops the disease. Researchers are closing in on earlier detection, on understanding the role of genetics and environment, on targets that might one day change the disease's course rather than just soften it. But we are not there yet.
Tomorrow, April 11th, is World Parkinson's Day named for James Parkinson, who first described the condition in 1817. Over two hundred years later, we are still looking for a cure. But the field is shifting, and one of the most promising frontiers is early detection.
There is a consensus that Parkinson's doesn't begin the day the tremor appears, but years, possibly decades, before. The earliest signs are easy to miss or explain away: a slight shake in a hand at rest, handwriting that has quietly shrunk, a sense of smell that has dulled without obvious cause. Trouble sleeping (particularly acting out dreams during deep sleep), stiffness that doesn't ease with movement, and a voice that has grown softer than it used to be can all precede a formal diagnosis by a long time. Individually, these changes seem unremarkable. Together, they can be the first language of the disease. Awareness matters because the earlier Parkinson's is identified, the more options there are: for managing symptoms, for planning, for buying time while research catches up. We are not there yet with a cure. But we are, slowly, learning to read the signs before the damage is too far along to ignore.
The cruel irony is that I understand what happened to my grandfather far better now than I did while it was happening. I came to this field after he was gone. The knowledge arrived too late to be anything other than a way of honouring him.
There is a particular grief in watching a mind like his, orderly, curious, steady, become unreliable. The crosswords must have become harder first. Then harder still. The man who raised three daughters to be unafraid became someone who needed help with the things he'd always done quietly and alone. Science gave me a framework that now allows me to understand what was happening to him.
What I think about most now is my mother. I can’t imagine what it felt like to watch a parent become unrecognisable. Not because they have left, but because the person you built yourself against, the person whose certainty helped form your own sense of self, is no longer quite there to confirm what you remember. You begin to grieve someone who is still alive. There is no clean word for that. My grandfather made my mother who she is. And she had to watch, up close and over the years, as the disease quietly renegotiated who he was.
I wonder if I landed in the neurodegeneration space subconsciously because of him. I don't say that to make it redemptive. Grief doesn't work that way, and neither does science. But something happens when the abstract becomes personal. The disease is no longer just a mechanism. It has a face. It’s a man who did crosswords in the early morning, who never needed to say out loud that he was proud of his daughters, because they already knew. The research I do now is not just intellectual work. It is also, in some quieter register, a conversation I'm still trying to have with my grandfather.
This article has been sponsored by the Psychiatry Research Trust, who are dedicated to supporting young scientists in their groundbreaking research efforts within the field of mental health. If you wish to support their work, please consider donating.
