What with Manchester and London Bridge and elections, I’ve been tiptoeing around social media of late, in an attempt to avoid the slabs of pure venom which are scattered amid the good stuff.  So, it was only this morning that I hit upon a post sharing the shattering news that one of my heroes – Tom Isaacs, president and co-founder of the Cure Parkinson’s Trust – died last week.  His passing was, apparently, “unexpected and swift”.  He was just forty nine.

Tom was an extraordinary man.  When he was diagnosed with Parkinson’s in December ’96, at just twenty seven, the prevailing narrative was that the condition was incurable; the charitable focus in this country was very much on care and support.  With Parkinson’s still perceived as largely a disease of the elderly, the quest for a cure lacked urgency.

This was not good enough for Tom.  Some six years into the condition, he embarked on a walk around the entire coastline of Britain, both to raise money towards finding a cure and as a challenge to the perceptions of the condition.  He rounded off his 4,500 mile trek with running the London Marathon.  His book of this experience, Shake Well Before Use,  is a brilliant read: interesting, moving but above all – like the man – very funny.

Tom went on to co-found the Cure Parkinson’s Trust which does what it says on the tin.  As it happens, the CPT are funding – among other things – the Ambroxol trial, about which I told you last week.

I first heard Tom speak in 2014, at a Cure Parkinson’s conference.  By then he had developed dyskinesia; the involuntary movements that can come as a side-effect of years on levodopa.

There are few people who can carry off such a situation without either feeling awkward themselves or having the audience feeling awkward on their behalf.  But as soon as Tom starts speaking – “I’m a glass half-full man – I spill the rest,” – his humour and warmth are such that the audience immediately relax; we know we are in safe – if slightly wobbly – hands.

At the end of the conference, I sidled up and asked if he would mind signing my copy of his book. I have it beside me now, as I write.   My blog about this conference concluded: “I hope the amazing work done by both Parkinson’s charities is also able to help him personally. It seems most unfair if I were to escape by climbing on his shoulders.”

The next day, Tom posted this comment:
“As for climbing on my shoulders, nothing would give me greater pleasure than to see the work of The Cure Parkinson’s Trust reverse any symptoms you may have … My life is completely fulfilled from reading blog posts like the one above. This may sound holier than thou, but The Cure Parkinson’s Trust is the most rewarding job I have ever had!”

I came across Tom Isaacs at a time when, a couple of years into the condition, I was trying to work out the implications of my diagnosis on my own life.  So I was particularly moved by the chapter in which he talks about how Parkinson’s brought another level to his life, once he embraced it as a chance to make a difference.  He says:

“I had not even considered the prospect before, but suddenly I had a vision of my future. Here was a new take on everything. This was something that I could do with my life, not despite Parkinson’s, but because of it. It would be a chance to make a difference, however minuscule; to do something positive where my Parkinson’s would be a help, not a hindrance. I felt light-headed, and a huge burden seemed to have been lifted from my shoulders.” (Shake Well Before Use Chapter 28)

The difference Tom has made to the lives of those with or near Parkinson’s is far from minuscule.  The Chief Executive of Parkinson’s UK, Steve Ford, says:

“He shone a spotlight on the need for better treatments for people with Parkinson’s and, through his leadership of The Cure Parkinson’s Trust, drove further research into the condition.

“He made a significant contribution to improving our knowledge and understanding of Parkinson’s, making a profound and meaningful impact on the lives of millions worldwide.”

Tom’s family, his many friends and colleagues will be devastated right now. I hope eventually that they are able to find comfort in his very remarkable legacy.