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I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
diseases as well and thought it would be nice to have a place where
updated news is in one place. That is why I began this blog.
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Monday, June 19, 2017

TOM ISAACS - ROCK STAR - Living with Parkinson's disease

June 19, 2017



Let's start with the basics. Tom Isaacs, president of The Cure Parkinson's Trust and co-founder of Parkinson's Movement died unexpectedly of couple of weeks ago. For CPT and PM, the loss is particularly acutely felt. Over the last many days we have gradually informed people of this sad news. The reaction has been astonishing. Once over the initial shock of the news, people have been at pains to tell us how much Tom meant to them. At CPT, we knew Tom was well liked in the Parkinson's community but we had no idea how much further than that it went.

Somehow Tom seemed to reach out to people, to make them feel part of things, to involve them. Over the last week people have told us story after story of Tom and the ways in which he had made them feel special, important and valuable. He had a way, aided by Helen, his right-hand woman, of making your issues his issues, of making your concerns his concerns.

In anybody else but Tom, this might seem contrived or calculating. But there was nothing contrived or calculating about Tom. If he felt you were wrong about something, he would find a way of telling you that would let you rethink the problem yourself. He could be direct too. 

Especially if you knew you well. It wasn't rudeness or anything like it. It was simply a reflection of the fact that time is precious to us Parkies and that the sooner we could get to the point the better. The same directness led to a great deal of banter and verbal sparring. He and I loved taking the Mickey out of each other. Tom, like me, had no time for the political correctness of PWP (people with Parkinson's). For both of us, we were Parkies, plain and simple.

His sense of fun spilt over into his talks and presentations. Although often simultaneously trying to deliver an important point, he loved telling jokes, largely at his own expense. And his audiences loved him. There was simply no better after dinner speaker than Tom. He would have diners in stitches with jokes about dyskinesias and auction rooms, or whatever took his fancy. Even when the audience had heard the joke before, he would thank them for laughing again.

Inevitably, his talks overran. Over the years I have spoken at many CPT meetings and learnt, through experience, that being given the timeslot immediately after Tom is the equivalent of a hospital pass in rugby. Whether humble students or feted professors, it mattered not one jot – Tom upstaged them all. He took particular pleasure in rattling the cages of any scientists or neurologists present. And yet, this teasing was delivered with such a twinkle in the eye that it was impossible to take offence.

He had an uncanny knack of making a serious point with a joke. He disarmed audiences with his sense of humour making people listen where otherwise they might not. To be able to speak about stem cells at a conference in the Vatican is remarkable enough. But incredibly his combination of hard science and an infectious style of delivery led to a personal audience with his Holiness Pope Francis.

But it was at the WPC meetings where he was most in his element. Tom needed a big stage, and not just because of his irrepressible dyskinesias that would send him careering across the platform with the audience holding their breath as he lurched towards the edge. He had big ideas and needed space to spread them out for an audience. He often spoke in sessions with eminent scientists and physicians. But he was never overawed. And, more than anything, he was never a token patient. Tokenism was anathema to him. If the patient voice was to be heard, it was to be heard properly and on an equal footing to that of the clinicians. Tom was, in Parkinson's terms, a rock star.

But what is left behind and how shall we best endorse his legacy?
Before Tom, no serious scientist or clinician would use the word "cure" in the same sentence as the word "Parkinson's". The notion that Parkinson's disease was incurable was ingrained in every medical student from the outset. Tom simply asked the question "why?" And the more he asked the question, the less satisfactory were the answers. But more than that, Tom made physicians start to ask the same question – why is Parkinson's incurable? Now we talk openly of a cure. Certainly we're not there yet but we are on the way. It is only a matter of time. By asking that simple question, Tom has induced a sea change in our thinking about Parkinson's which, in turn, has influenced the direction of clinical research. Not bad for a little man with a handful of O-levels.

Tom was often exasperated by the pace of clinical research, or more accurately the lack of pace. Again, he found a simple solution. If there was not enough research taking place, he would find a way of funding more by starting a research charity – The Cure Parkinson's Trust. A little over a decade old, the charity is the embodiment of Tom's ethos.

Tom felt very strongly that the patients were the key to a cure for Parkinson's. He felt that patients were, in the classical patrician model of healthcare, an underutilised resource. He believed that it was the interface between patient and physician that would yield the answers needed. He believed in collaborative medicine and he believed in a powerful, strong and unified patient voice. His leadership helped to make patient advocacy a vital component of drug development. Before Tom there was no such thing as a patient opinion leader. Now there are many.

Above all, Tom stood for one thing – friendship. He believed that friendship, one-to-one, in groups, and in communities was the route by which everything could be achieved. He believed that friendship and teamwork were not the best way to achieve results so much as the only way.

No reminiscence of Tom would be complete without mention of his singing. Never was there a more joyous, uninhibited and funny singer. He had us all in stitches with his alternate takes on classic songs from the musicals, most immortalised on Youtube.

Tom was a good friend, a great leader and a true inspiration. If he is looking down on us now, I hope he will be smiling. One thing is for sure, I know he will be singing.
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Dr. Jon Stamford, BSC, PhD, DSc has spoken at the past few Congresses and was part of the inaugural group of WPC Ambassadors leading up to the WPC 2013 in Montreal. Jon recently retired from his position on staff at The Cure Parkinson's Trust, where he combined his knowledge of neuroscience with his advococy work as a person with Parkinson's.
Twitter: @jonstamford

https://www.worldpdcongress.org/home/2017/6/6/9gbofnpth5oa10fnsd57es8u3unzn1?platform=hootsuite

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