We all remember the early days – first the Parkinson’s diagnosis, then the search for answers – “Why me?”, “What caused this?” and of course “Is there a cure?”.
Then many of us move on to the internet looking for research pointers – stem cell therapy?, repurposed drugs?,are there any supplements that might help, exercise? etc. etc.
One step that I urge you to consider is to get involved in clinical trials and studies. How can we hope for progress and answers if we don’t engage with the research community? There are many benefits to getting involved – for example the satisfaction of knowing you are helping in the search for a cure, and a somewhat hidden benefit is that you get to spend quality time with some of the leading neurologists as you engage in the testing.
Some years ago I signed up for the PPMI (Parkinson’s Permanent Marker Initiative) study – looking for biomarkers that would provide a reliable diagnostic test for the disease. I’ve provided blood, spinal fluid and urine samples and had many sessions with neurologists running tests on me. All of which made me feel much more engaged with the research community.
Here in London I’ve participated in studies for Parkinson’s related vision and Parkinson’s anxiety. You can find some study options for you to participate in here. Just enter your postcode and a good number of study options will be listed.
Also if you complete the Michael J Fox Trial Finder survey, a number of UK based trials will be listed:
Finally, for an in-depth overview of the current thinking in the research community, what better way to get this than by attending next June’s World Parkinson’s Congress in Kyoto Japan.
And guess what, some of these studies even pay you – sometimes with shopping vouchers and sometimes with cash! So what are you waiting for?