This is the third step along the Road To Collaboration in clinical trials. My second article ended on the realisation that significant remission of symptoms exacts an unexpected toll on a participant.The memory of function temporarily restored is now being aggravated. The Foliglurax Trial is reportedly slipping, so disclosure of drug/placebo remains a distant prospect. To the lack of […]
Category: Living with PD
The Road To Collaboration 2 – Clinical Trials
Sponsors of clinical trials need participants, but people do not need to participate. They may want to, but they do not have to. Want implies freedom of action and an expectation of persuasion. The difference between want and need tells us who ultimately should be in charge of thiis arrangement. A Clinical Trial Team is an agent […]
Some alternative ways to get PD research done: Part 1. PwP as researchers
This is a guest blog by John Turner, who runs the site Parkinson’s measurement. This article is the first in a series of seven linked essays. In it, we describe some alternative ways to do PD research; ways that might quickly improve the quality of life (QOL) of people with Parkinson’s (PwP). Here, we are only […]
Road to Collaboration 1 – Engaging PwP in research
I am grateful to Ben Stecher for publishing the first edition of this article and introducing me to PRAG. Let’s start with a simple generic question. Will the life science researcher engage with the layman? Obviously yes if the layman is, or possesses, something the researcher needs. Most likely not if the researcher believes the layman […]
Parkinson’s Awareness Week – part IV
This post was first published on my personal blog. So I’ve reached the 4th Parkinson’s Awareness Week since the fickle finger of fate bestowed the great misfortune of an elderly person’s disease upon me aged just 32, coming on for four years ago now. Other famous part IV’s include Rocky IV, where Rocky Balboa, at […]
Einstein, it took Parkinson’s to understand you
For some reason, the thought of losing my freedom of movement fills me with particular dread. Why, I can’t quite put my finger on. When I try to imagine it, I picture myself in a room clad with dated wallpaper, sitting in a grimy chair with a not-so-fresh glass of water. With a straw. And, […]
To Know, Or Not To Know
How much do I really want to know? It’s a question many diagnosed with Parkinson’s diseases will face a number of times along the way. While you can get some guidance from those that have faced it before, no two people ever walk quite the same road with this disease so ultimately each person diagnosed […]
A Facebook Post-of-the-Day: My Call to Action
HEY, over here. Yeah, YOU, my FB friend who might know me through some shared aspect of our professional or personal life. If you didn’t know it before, you are going to know it now: I have PARKINSON’S DISEASE (PD). Why am I telling you this? You need to know that, if you didn’t already […]
It’s so not you!
Previously published as guest blog by the Michael J. Fox Foundation for Parkinson’s Research. And she was right. She casually hit the nail on the head as we chatted by the meat counter in the supermarket. That’s the thing with: illness, tragedy, loss…it’s so not YOU. Neither is a Parkinson’s diagnosis at 46. It’s just […]