Getting “the Measure” of Parkinson‘s:
The treatment of Parkinson’s has changed very little over the past 50 years. There are many reasons for this, but one of the main ones is that Parkinson’s is extremely difficult to measure.
WE can change this. Through better understanding and self- analysis of our Parkinson’s, WE can make a valuable contribution to accelerating the most relevant scientific progress in Parkinson’s into actual treatments.
This is the goal of SENSE-PARK. Measuring your symptoms can not only help you with your own Parkinson’s, but can also help realise better and more targeted therapies which could improve our quality of life in the foreseeable future.
What do we all have in common?
The one thing that is predictable about our Parkinson’s is its unpredictability. We all find it difficult to plan ahead because our symptoms can change from being moderate to horrendous in a matter of hours, sometimes even minutes. Parkinson’s is a complex condition involving a myriad of symptoms, in two broad areas:
- Those that affect our movement – Motor symptoms
- Those that affect other aspects of our health and well-being – Non-motor symptoms
What we don’t have in common
Although the effects of Parkinson’s may be similar in many people, it is very rare to find two people with exactly the same symptoms. We all respond to medication differently and we are all individuals with different priorities in life.
What is missing?
The combination of unpredictability, the fact that we all have different symptoms, and that we respond differently to medication with different priorities contributing to our preferred lifestyle, means that Parkinson’s is incredibly difficult to measure. The role of assessing our Parkinson’s has traditionally fallen to our doctors, neurologists, specialist nurses etc. but, their methods have been largely constrained by the lack of technology. This restricts them to their subjective and impersonalised snapshots of our condition which can prove to be unrepresentative of the full scope and variability of our lives with Parkinson’s.
So why is measurement important?
By collecting information about our day-to-day health, we will be able to establish patterns and trends in our illness so that we can adapt our activities eg. diet, exercise and rest accordingly;
By monitoring and recording our health continuously, we can provide far more accurate and personalised information from which our healthcare advisors will be able to provide the best possible treatment plan to suit our individual circumstances;