Tom, Tom – Thank You For Showing Us The Way

Tom Isaacs, 2 April 1968 – 31 May 2017.
Co-founder and president of The Cure Parkinson’s Trust
A little over three months since the PD community was shaken to its core at the news of Tom Isaacs’ death, we take a moment to reflect not just on his life but his legacy. An Olympic torchbearer, Tom led and lit the way for those with YOPD; it’s up to us – all in the PD world – to now work together in getting better treatment and the cure. 

Nobody expected Tom’s death, least of all the man himself. He still had his life’s work to complete and to reap the rewards of. There were trials to be done, papers to be written, a life to be lived, a disease to eliminate and cure to celebrate.

Years of dyskinesia had inevitably taken its toll. He often sported a fresh cut or bruise; all credited to life with PD and the kitchen cupboards. Ever finding the silver lining, he admitted when he spoke with a war wound on display the ovation received was all the greater. His wordplay received laughter and groans in equal measure. We hope he would appreciate our dubious headline here.

Tom still believed that having Parkinson’s would be past tense in his lifetime. Sadly, the best laid plans… The tragedy is that he didn’t get to realise the ultimate result of his work. At just 49, having spent nearly half his life battling PD, his untimely death has left the PD community reeling; none more so than those at The Cure Parkinson’s Trust – in many ways his second family.

Having lived with the condition throughout his 20s, 30s and 40s, he leaves behind a You Tube library of his best speeches and ‘worst’ jokes. To us he will be forever young, forever YOPD. He is our James Dean, the legend who ushered in a new style of ‘moving performance’, making an impact on stage and screen, and last year picked up his ‘Oscar’ at the World Parkinson’s Congress.

To live and love life with such a sense of fun, no matter that every day he was fighting his own body, should be a lesson to us all, Parkies and non-Parkies. More than two decades of PD and yet his lust for life and joy in laughter was at least as strong as his drive to find the cure.

So how do we make Tom’s legacy as productive as his life? We have endured two centuries of this ‘disease’; the answer lies within us but we need to be seen and we need to be heard. We need to push the boundaries.

In his WPC acceptance speech, he paid tribute to three incredible women within the Parkinson’s community who understood him and the condition implicitly. Tom fought back the emotion when talking about Lyndsey. We are delighted to hear that she is now working within CPT.

He also gave well-deserved credit to Eli, the force behind the WPC and, another proponent of the importance of PWPs being an essential part of the solution not just the silent partners.

Helen at CPT was for years Tom’s ‘wingman’ and one of those rare non-Parkie people who understands fully what Parkinson’s is, with all its quirks.

We may have lost the skipper, but the first mate, navigator and engineer are going full steam ahead and following the guiding star – which was Tom’s vision. There will be a role for everyone, all of us – each playing to our strengths.

We’re not expecting plain sailing but we live in hope of an occasional  following wind – leading us to new horizons of research and Tom’s ultimate dream.

Godspeed to all.

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Portrait of man at home, sitting on a comfy chair, leaning forward and smiling