Using one word, “Parkinson’s”, to describe everything and everyone that falls within the parameters of this condition simply does not do justice to the scope of the problem.
Parkinson’s is not a death sentence, it is a life sentence. It affects young and old, rich and poor, every creed, colour and religion. It affects you physically and emotionally and it compromises everything that you once took for granted – movement, communication, cognition and mood. It does all these things and yet every person’s symptoms are different and the symptoms experienced by the individual can vary massively from day to day, hour to hour even minute to minute.
Take all the above into account and you realise how difficult Parkinson’s is to live with and also in the context of today, how impossible it is to work with your healthcare advisors to establish the optimum treatment plan throughout your Parkinson’ journey.
With such a complex illness, the engagement of the people living with the condition is crucial to ensure quality of life is as good as possible. But in Parkinson’s there is a tendency to withdraw from society and ironically this is because the three principal constituents of quality of life are affected namely:
• A sense of ‘being’ – your sense of who you are and your self esteem.
• A sense of ‘belonging’ – how you interact with people and the world around you.
• A sense of ‘becoming’ – your expectations and hopes for the future.
This project tackles these issues directly. I know from personal experience that my quality of life and that of others like me, is good because I concentrate on the things I can do, not on the things I can’t, because I am self aware, because I can communicate my symptoms effectively and because I know what to expect from Parkinson’s.
This project will provide the tools necessary for people with Parkinson’s to recover some of the control which Parkinson’s takes away. The technology is out there to allow a more proactive role for people with Parkinson’s in three areas:
1. The management of their own health through specially adapted enabling devices, through better self monitoring and analysis to establish symptom patterns – being.
2. The provision of improved and more continuous symptom data so that healthcare advisors are in possession of the right facts. Treatment plans can then be tailored to the individual through dialogue to allow people with Parkinson’s to retain a full and active life in society – belonging.
3. The introduction of more objective and “true to life” patient reported outcomes for integration in to the clinical trial and drug development process to inform and encourage the development of more relevant therapies – becoming.
For further information, or to take part in our survey of needs visit www.cureparkinsons.org.uk or click here:

http://www.surveymonkey.com/s/BRVXDBC