Conference Programme - 18 September 2017

The 4 pillars are essential. Medicine alone will not assure quality of life. Movement, Lifestyle, and Psychology and acceptance all play a major role. If one of the above Pillars goes down, it may pull down others too. That's why apathy and depression are so destructive. If we stop caring, we stop exercising and we stop living. We are then left with just the Medicines. Back to square one and, worse, we enter what one leading neurologist called "The Vortex of Apathy". The vortex pulls us down, eliminates neuro protection and neuroplasticity, and destroys people with Parkinson's and the lives of those around them.

I started self-monitoring because my introduction to Parkinson's medication was problematic (side-effects outweighed minor benefits). Over time I have been able to whittle the number of symptom measuring tests to four: tremor mean amplitude, time to write a sentence, number of toe-taps in 30 seconds, and time to complete a short walk indoors. I have also produced an adaptation of the UPDRS that uses a common scoring scheme for symptoms as experienced by people with Parkinson's. I only self-monitor around the periods that I am changing my medication. I record the results on printed forms and periodically transfer the data to a spreadsheet. This plots the data in a way that can rapidly convey the effects of changing my medication to my neurologist. My presentation, available for download after the conference, has additional slides on monitoring - and includes links to the Self-Monitoring Test Plan and spreadsheet for your own use.

For most people who are told they have Parkinson's it is a change of life as they have known it. Suddenly your future may not look too rosy. So what's the best way to approach it?
Alex Reed, Peter Harling and I wrote the two day programme, First Steps. Inspired by the Parkinson Therapy Centre in Northern Italy we focussed on the anxieties, fears and lack of understanding around Parkinson's that most of us go through. It is presented by people who themselves have Parkinson's and, at the end of the two days, participants have a feeling of confidence to face the future. Currently it is only available in the Oxford area - but that's about to change.
In today's conference you will hear more about the programme and, more importantly, how it will be available elsewhere.

This talk will briefly summarise innovative research studies on the immediate horizon, that people with Parkinson's within Oxfordshire and the wider Thames Valley will be able to consider taking part in. Supported by the Oxford Parkinson's Disease Centre, forthcoming clinical trials will include novel immunotherapies with alpha-synuclein antibody infusions, diabetic treatments including the glucagon-like peptide 1 receptor agonist exenatide, and wearable devices to treat gait freezing in Parkinson's.