I recently attended the Parkinson’s UK Research Conference in York, which was a very interesting event. Over the course of a day and a half, I listened to many researchers give talks on their work. Some of them were very scientific and despite my degree in Molecular Biology, the information presented went over my head! However, there was one titled “Parkinson’s Priority Setting Partnership – Unmet Research Needs” which proved to be very interesting.
The idea behind the talk was that Parkinson’s UK wanted to find out from People with Parkinson’s (PWP’s) what research should be done that focus on the everyday needs of PWP’s. So, they commissioned a survey that engaged 1,000 PWP’s to tell them their top 10 areas of research they believe should be done that is relevant to them. Out of this survey, they got 4,100 responses and a steering committee was created to study these responses to reduce them to 96. Through a series of workshops involving PWP’s, carers and healthcare professionals, this list was whittled down to a top 10 which are:
- Balance and Falls
- Stress and Anxiety
- Uncontrollable Movements
- Personalised Treatments
- Mild Thinking and Memory Problems
- Monitoring Symptoms
- Urinary Problems
Since becoming involved with Move4Parkinson’s and learning about self-management, I believe that PWP’s have a vital role to play in the treatment of this condition. After all, we are the experts since we live with Parkinson’s all day every day. So, it was very encouraging to learn that Parkinson’s UK want PWP’s to play a role in determining what research is undertaken going forward.
However, Parkinson’s has traditionally being described as a “movement disorder” as the classic symptoms are tremor, stiffness, slowness of movement and balance problems. But when we look at the list above, only 3 out of the 10 areas that PWP’s were most concerned about relate to movement. So, can we say with confidence that Parkinson’s is a “movement disorder”? It certainly affects our movement, there’s no doubt about that, but it also affects a whole lot more.
I, like most people got my diagnosis based on a clinical observation of my body’s physical movements. But how do you clinically observe sleep, stress, mild thinking problems…etc? Neurologists will do this by asking us questions, but they can only go on our answers, so it is very important that we tell our neurologists exactly what we are going through and how we feel. That way, we can ensure we are getting the best possible treatment that helps us cope with not only our motor symptoms, but also our non-motor symptoms. Because Parkinson’s isn’t just a movement disorder, it is a malady that affects how we move, think and feel.