By Eirwen Malin, Research Committee
Please send us your thoughts on your experiences with Parkinson’s. No one knows your condition better than you.
The research committee of PD Avengers needs your help to develop Sparks of Experience. We all know stories of important scientific moments, like Fleming’s discovery of penicillin. It may appear to have been accidental and leaving the petri dish on the window sill may not have been planned, but it was no accident that Fleming’s curious mind made a breakthrough. We believe that there are curious minds that will set new directions to work towards a cure or novel treatments for Parkinson’s and some of them may be PD Avengers. We are not talking about researchers now, but about those who endure the condition and those who are close to them, so we are asking for your help.
Living with this pesky and perplexing condition demands a great deal of self awareness and self education and many people living with Parkinson’s (PLwP) give a lot of thought to their experiences. You may think to yourself “I wonder why my symptoms are worse in the winter?”, or “How would it be different if I were left-handed?” or “Why is it I am always at my best when I go to see the consultant?” When you try to find the answers you think “Why isn’t anyone researching this?!”
We want to collect these sort of thoughts from around the globe and highlight them to researchers and funders. Your experiences could provide the inspiration for a new direction for research and that so far elusive key to unlocking the mystery of Parkinson’s.
There are already good, well known examples of inspiration in the Parkinson’s world including an observation by a patient back in 1969 who noticed that her Parkinson’s symptoms improved while she was taking the prophylactic Influenza drug Amantadine. The drug was redeveloped as a Parkinson’s treatment.
More recently we heard about PD Avenger Joy Milne, with a sensitive nose, and how she noticed a change in the way her husband smelled long before his PD diagnosis. She brought it to the attention of a researcher and the resulting projects have provided exciting developments.
What do you ponder about which may just be the inspiration needed? No matter how quirky, off the radar or even boring and obvious it may seem to you, please send us a couple of paragraphs to let us know. We’ll collate the list, see if there are common threads and make sure that researchers and funders around the world get a copy.
Who knows where your simple ponderings may lead? Please send us your thoughts on your experience. No one know your condition better than you.