Britannia Pharmaceuticals launch theparkinsonhub

11 April 2013

World Parkinson’s Day 2013 sees the official launch of theparkinsonhub (www.theparkinsonhub.com), an  innovative, interactive resource for patients and carers. theparkinsonhub, developed by Britannia Pharmaceuticals, is committed  to sharing the latest news and best practice about Parkinson’s disease (PD), with  an emphasis on and around mid to late stage PD. This is accompanied by the  launch of the complementary PD Quality of Life interactive resource (www.pdqualityoflife.com) which  enables people with PD to identify and understand those areas in their life  most impacted by their condition. They are then empowered to have a more  informed discussion about their well-being and unique needs with their  healthcare professionals (HCPs) and care teams.

At the heart of theparkinsonhub and the PD Quality of Life resource is the recognition that no two people’s  experience of PD is the same. However, with the right support and information  it is possible for those with PD to live with confidence and control.

theparkinsonhub theparkinsonhub is an online  community based on sharing best practice in understanding and managing PD to maximise  patient well-being. It is a dynamic, evolving resource tailored to providing  practical help and advice that is regularly updated on a range of key areas of  life that cover both motor and non-motor symptoms of PD. This is enhanced by  shared best practice about ‘what works for me’ in each category which comes directly  from members of theparkinsonhub community from around the world.

In addition, theparkinsonhub provides  a comprehensive overview of PD including the nature of the condition and  information on available treatment options as well as a growing list of  ‘gadgets and gizmos’ that can help at different stages of a person’s journey  with PD. It also highlights inspirational examples of celebrities and ‘everyday  heroes’ living their lives to the full during their journey with PD.

Anne Martin has been a Parkinson’s nurse for 11 years with 20 years’ wider  experience working in neurology including PD. She comments on how she sees theparkinsonhub helping those with PD: “Where theparkinsonhub excels is in  consistently focussing on the person first and their PD second. By addressing  the impact on a person’s well-being in terms of non-motor as well as motor  symptoms, it has a much more holistic approach to meeting people’s needs with  regards to their quality of life. The proactive encouragement for those in theparkinsonhub community to share best  practice about what works for them empowers people to think in terms not just  of what help they might need, but also what help and advice they can give back  to the community.”

PD Quality of Life Resource        The PD Quality of Life interactive resource has been developed to help those  with PD understand which areas of their life are most affected by their  condition. By answering a number of targeted questions, an easy to understand  graphical representation is generated showing the impact of PD across a range  of areas unique to an individual’s life. These results can then be used to identify  the most relevant sections in theparkinsonhub where they can find the most helpful information and shared best practice for  their situation.

Alex Flynn is a marathon fanatic and global adventurer who was diagnosed  with early onset PD at the age of only 36. The current ‘everyday hero’ of theparkinsonhub, he explains what he  sees as the value of the PD Quality of Life resource: “Parkinson’s disease is a  very personal condition that impacts different people in different ways. By  using the PD Quality of Life interactive questionnaire, people can quickly and  accurately see how their lives are uniquely and currently affected by PD as  well as monitoring any changes as their PD progresses. They can then use this  to find practical ways of adjusting their lifestyle via theparkinsonhub and in conjunction with their carers to increase  their overall well-being and quality of life.” 

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