‘How have you been?’ is my consultant’s first question when we meet. How can I give a meaningful answer for a condition that has so many aspects, including cognitive shortcomings? I need evidence, ways of judging it and reaching a conclusion.
I do this whether I want to or not. If I have a bad night’s sleep and then another one, and another, then I begin to wonder what’s going on. I try to think back to things that varied and things that were the same. Did I take my medication? At the usual time? Did I relax in the evening or do some work? Did I have alcohol? etc etc
Answering these questions is much easier if I have a diary with entries on how well I have been sleeping, at what time I am taking my medication, what I have been doing in the evenings, whether I have been drinking?
Most people with Parkinson’s do some self-monitoring and ‘DIY research’, but many not systematically. We monitor our condition whether we want to or not, so we might as well do it properly. We need good design and research skills to make the answers more useful. We can also turn to other people with Parkinson’s and find out what they do, and how?
People with Parkinson’s form a unique pool of knowledge. No two are the same but the type of questions, skills, and approaches are. Involving others also increases the motivation to keep going and to find new angles. EastMidlands-RSN helps with establishing contact with like-minded people, both persons with Parkinson’s and researchers. They live close enough to you to have a chance of meeting, for example at the Regional Research Forums.
Information is power – power to try to influence the condition, in a small way for example by finding answers and new approaches regarding my sleep disturbances.
The ever-changing and individual nature of Parkinson’s provides so much food for thought that at times it can be too much. There are other things to think about and enjoy. Billy Connolly has a good view on this:
“It’s managing me,” he said. “It’s kind of weird; it creeps along and crawls along. It’s the first thing I think about in the morning, so I try to make the second thing I think about more interesting.”(1)