It is a year since the Parkinson’s community lost one of its strongest advocates, a full year since Tom Isaacs passed away unexpectedly early one May morning.

I remember the phone call from Helen, mid-morning. She said hello and asked how I was. I recall thinking that her voice was very flat. There was a pause before she told me she had some devastating news. Tom had died that morning. I felt numb instantly. I don’t remember what I said but I knew that I needed to get off the phone immediately. That maybe, if I put the phone down, I could pretend it hadn’t happened. After all, I had been speaking to Tom only a couple of days previously. How could he be dead?

It’s all a blur now but, as the news sank in, I remember wanting to go up to the CPT office in London simply to be around Helen, Anna and the others – my people – and to have them around me. We all had our stories about Tom.

It was not long before word seeped out into the Parkinson’s community. Not long before people started phoning the CPT team and myself expressing their condolences and asking questions about the charity’s future plans.

And over the following weeks and months, something rather remarkable happened. Visits to the CPT website rose sharply and donations to the charity increased. Somehow Tom’s death had pricked the public consciousness over this still incurable disease. And, even more remarkably, callers were looking for ways to turn their donations into something positive and enduring. Many spoke of Tom’s legacy of patient advocacy and of his role in the genesis of Parkinson’s Movement. And of Tom’s unwavering belief that research, and research alone, would eventually result in a cure for Parkinson’s. There was a tidal wave of support for CPT and a general sense that, even if Tom was gone, his work would not only continue but at a greater pace. This is Tom’s legacy.

A lot of people ask me what he was like to work with. Exuberant, exhilarating, exasperating. All of those things in one. Always challenging existing dogma. Always asking “why not?” questions. A man for whom “no” was never an acceptable response. Tom always liked to push your buttons. He and I would spar regularly on almost everything, running ideas past the other. We never gave each other less than complete honesty. He was never less than inspirational. It was a privilege to work with him. I miss that. But more than that, I miss those moments, towards the end of the day when we would talk about everything except Parkinson’s. We shared some of our other thoughts. So yes, it was a privilege to work with him but it was a greater pleasure to call him my friend.

And his legacy continues to grow. To quote a line from a Peter Gabriel song about another activist, “you can blow out a candle but you can’t blow out a fire”. Tom may have been the candle but CPT and PM were the fire he started.

The Candle and the Fire