By Richard Windle
There are not many good things associated with Parkinson’s. Sometimes it seems to be intent on destroying everything that you used to be. One thing that benefits many is meeting others with the condition often, due to the internet, from all over the world. One such person is Jon Stamford. I regard Jon as a friend and he has decided to take early retirement to spend more time with his hobbies and his family.
Jon is unique in having studied Parkinson’s as a student and a researcher during his working life before finding that he had the condition himself. He has been an effective and tireless advocate for Parkinson’s, explaining the condition and championing the cause of making research easier to understand. Jon was also the editor of Parkinson’s Movement’ one of the most influential online magazines written by people with Parkinson’s for people with Parkinson’s.
I first met Jon along with Tom Isaacs and Helen Matthews in 2011 on a train to Newcastle. They were ‘spreading the word’ about Parkinson’s via a short conference covering some of the latest issues and developments in research. I was simply invited as a volunteer with Parkinson’s UK who was, likewise, interested in research. Jon’s presentation at Newcastle that day was his usual mix of hard facts, tempered by humour. Thereafter I had the pleasure of working with Jon in various capacities and this was his hallmark. Jon has a very dead-pan way of communicating and you never quite know what to expect. I’m not sure if Parkinson’s plays some part in this, but it is very effective way of holding an audience.
Getting people to talk was one of Jon’s specialities. A few years back Parkinson’s Movement produced a series of videos, hosted by Jon, about Parkinson’s and there are several examples that illustrate this. The most memorable for me was the off-camera interview where, with minimal prompting, Jon got Tom Foltynie to explain the issues he saw about finding a cure with remarkable depth and clarity.
Jon’s anecdotes included the story about how, on being taken into hospital without medication, he gradually got stiffer until he could hardly move. This was all to the amazement of the nursing staff, who clearly didn’t know much about Parkinson’s. Fortunately this experience didn’t last too long, but is something most people with Parkinson’s fear.
Then there were the research days that Jon organised, introducing people to Parkinson’s research so that they could see that it is not a mystery. If anyone deserves a rest you do Jon.
Read more about Richard’s thoughts and experiences living with Parkinson’s on his blog.
- Progress in Parkinson’s, both in terms of its management and improvements to its treatment, is extremely slow. There have been advances in the understanding of Parkinson’s and there is the very real possibility of therapies with the capacity to modify the course of the condition in the pipeline. However, these…
- GRAND RAPIDS, Mich. (February 22, 2016)—A medication approved to treat various respiratory diseases and that has demonstrated neuroprotective effects in preclinical studies is the focus of a new clinical trial for Parkinson’s disease. The trial is the latest to be launched as part of the Linked Clinical Trials (LCT) initiative,…