On 31st May in 2017, Tom Isaacs – one of the co-founder of the the Cure Parkinson’s Trust – passed away suddenly.

It was a terrible shock for the Parkinson’s community, many of whom saw Tom as a leader of advocacy efforts.

In today’s post, two years after his passing, we remember Tom.


tom isaacs

Tom Isaacs

In 1996 – at just 27-years of age – Tom Isaacs, a London-based surveyor, was diagnosed with Parkinson’s. After dealing with the initial shock of it all, Tom embraced his situation and became a committed, (utterly) tireless activist.

He firstly walked the entire coastline of the UK to raise money and awareness for Parkinson’s. His book, “Shake well before use“, discusses that trip and his journey in adapting to life with Parkinson’s. It is a wonderful read – not only providing an intimate insight into the trials and tribulations of the condition, but also offering glimpses into the brilliant wit and humor of the man himself.

Upon returning from his epic walk, Tom (along with three other gentlemen with Parkinson’s) founded and set up the Cure Parkinson’s Trust.

It is pretty safe to say that other than Michael J Fox and Muhammad Ali, Tom has had the most impact on marshaling scientific research efforts to find a cure for Parkinson’s.

Source: Gondola-parkinson

And it is also fair to say that Tom did this without the benefit of pre-Parkinson’s fame. He started from a basement apartment in Pimlico (London).

How did he do it?

With a lot of energy and his own special style and humour:

This was a video of Tom in 2009, talking about life with Parkinson’s:

And here is another video of him talking about embrassing Parkinson’s and becoming an advocate:

Here at SoPD HQ, we were gutted by his passing.

Did you ever meet him?

A couple of times. But after the first time I met him I was a bit embarassed about talking to him.


The first time I met him, I was so in awe of the guy that I couldn’t think of anything to say to him. And all that came out of my mouth was “Did you really walk the entire coastline?“. I felt so stupid afterwards  because I had just finished reading his book about the journey!

And his response to my question was an amused, perhaps polite “Ah, yeah“.

He was one of those individuals that brightens up a room though, and the place was better off for it.

This is my favourite video of Tom:

I’ll give the last word to Tom, in this wonderful video by Anders M. Leines


EDITOR’S NOTE  The author of this post is an employee of the Cure Parkinson’s Trust. The trust has not requested the production of this post, but the author considered it important to share with the Parkinson’s community.

The banner for today’s post was sourced from Youtube

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