285 #TomsVision

As soon as the words were out of my mouth, I realised that I’d been tactless. The last thing Tom needed, being, as he was, in the grip of dyskinesia (linked to Parkinson’s drugs; makes you move uncontrollably; just awful) and also having a conference-ful of important people to talk with; I’m sure the very last thing he needed was for some fool of a woman asking for his autograph on her copy of his book.

But Tom Isaacs had been a hero of mine, ever since I’d read “Shake Well Before Use” a couple of months earlier, and it was the first time I’d met him, and he couldn’t have been more warm and welcoming. Basically, I was starstruck. Still am, really. He even apologised for the writing being shaky! Him. Apologising to me. Good grief.

Just in case you’re new to this part of the woods, Tom was diagnosed with Parkinson’s in his late twenties and for him the condition moved pretty quickly. He writes

“Seven years into the illness and there were now times when there was nothing to do except surrender to the Parkinson’s after the medication wore off … The harder I tried to do anything, however simple the task, the worse the tremor got and the less likely I was to succeed in doing it, whether it was doing up the top button of my trousers, replacing the money in my wallet or putting a key in a lock.”

April 2002

Given his condition, Tom does the obvious thing: a 4,500 mile walk around the coastline of Britain. Starting, of course, from the newly opened Wobbly Bridge. Where else?

The book – Shake Well Before Use – is both a fantastic travel book and the story of him getting to grips with a new direction to his life. To be honest, I was a bit reluctant to read it at first: I thought it might be just too miserable. Then I heard Tom talking on the radio and was captivated because as well as being interesting and inspiring, he was very funny.

I’ve got the book beside me now, open at Chapter 26: From Newport to Newquay, January 2003. Tom is writing about meeting the neurosurgeon Professor Steven Gill, who was – is – working on the effect of a growth factor called GDNF on Parkinson’s when delivered directly into the brain.

“… we spent an incredibly uplifting hour and a half talking about Parkinson’s. I knew by the end of this time that I would never find anyone who I would rather back to find a cure for my illness … Previously my talk of a cure had been hope. Now it seemed I could truly believe.”

January 2003

Towards the end of the book – and the walk – Tom tells us how he wrestled with the decision about what to do next with his life. Back to working as a chartered surveyor? He decides to follow his heart and,

“… propelled along by the support I had received, by my meeting with Steven Gill and by the amazing success of the venture, I felt more motivated than I had about anything ever before … I would concentrate on curing Parkinson’s”

March 2003

Tom and the team who supported him on his walk went on to co-found The Cure Parkinson’s Trust who now fund many a research project, including the two drug trials in which I’ve taken part.

Fast forward to last night, I’m flicking idly through next week’s Radio Times
and come across this double page spread. It shouldn’t have come as a surprise, really, but I’ve been trying to cut down on my Twitter time and had somehow missed it.

Blooming heck. Professor Steven Gill. GDNF. And a small picture of the surgical team with the caption “Surgeons carefully attach a volunteer’s headframe.”

A volunteer? A volunteer!?

Momentarily, I’m tempted to load up my quill and dash off an email to the Radio Times picture-captioning person telling them that this is no ordinary volunteer in the photo but the Tom Isaacs. The man’s a hero.

Then I read the article. I read that forty-two people volunteered to take part in the GDNF trial, which involved having a pump fitted into their brain. And they did that knowing that there was a fifty fifty chance of being in the placebo group, meaning that for the first nine months of the trial they would only be receiving water, not the actual drug. And I realise that they are all bloody heroes. It’s one thing to try out a few tablets but to take part in experimental brain surgery – good grief.

The results of the trail are due to be published in the middle of next week, before the programme on Thursday 28th February. It’s just heart-breaking that Tom isn’t here to see them: he died on 31st May 2017.

There are many tributes to Tom Isaacs on the net but I came across this one last week and thought it brilliant. Just 3 minute 19 seconds.

I thought I’d finish by sharing with you Tom’s comment on the blog I wrote after that first meeting. I was very moved that he’d taken the trouble to comment and it really gives a sense of the man. Here’s the blog – scroll down to the very end for the comment. I’ll see you the other side of Thursday’s programme.

 

One response

  1. […] that stood out for me was when he talked about the GDNF trial documentaries which I trailed in my last blog. “Had anyone seen them?” he […]

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