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More Fuel for the Fight against Parkinson's!
health / disability issues |
Monday April 05, 2010 04:20 by Ann Keilthy - Parkinson's Association of Ireland A.Keilthy at parkinsons dot ie
A website with information on Parkinson's arranged in small topic-driven segments
Each page in this new website has one topic plus a selection of questions you might ask answered. Not too much information at a time, and ideal for those starting out. Launched in Ireland to mark Brain Awareness Week in March, this website, www.parkinsonsdecisionaid.eu.com, informs and encourages you to discuss the contents with your doctor - patient education and empowerment.
The launch recently in Ireland of an EPDA (European Parkinson's Disease Association) website aimed at those who want the information about Parkinson's in carefully selected "chunks" marks another stage in the developing arsenal of literature for those with Parkinson's here. We believe that there are about 8,000 here with this incurable, progressive neurological disorder. Many do not have access to high quality information, and everyone wants the information in a different way, so this website is catering to a different reader. The information is presented as a series of signposts, "decision aids", that will help direct somoene who wants to know the facts but not in medical jargon, to whatever information they want at the time. One person described them as "brieflets".
For instance, the thought of physiotherapy at an early stage might never cross your mind but having physiotherapy early helps maintain function and there is a section on this, with some questions that might occur to you answered. If you take this to your doctor, you can initiate a discussion and be involved in the decisions being made - a partner in your treatment plan.
If you do not own a PC (more and more "silver surfers" are surfing the internet these days, and apparently this surfing results in measurable improvemnts in cognition), ask aa son or daughter or grandchild to print off material for you! or try your local library where many have computers for your use.
This site - Parkinson's Decision Aid, we launched here to mark International Brain Awareness Week, the Neurological Alliance of Ireland's annual awareness campaign for neurological conditions in March. The website is at www.parkinsonsdecisionaid.eu.com, and if by chance you want more detailed information once you have digested the material on this website, there are links across the top of each page to other parallel websites developed by the EPDA for those who want the information in a different way.
Our Chairperson, Una Anderson Ryan said
“On behalf of the Parkinson's Association, I would like to endorse and support this wonderful project. We are very concerned that people with Parkinson's often do not get the right information to help deal with their condition, and I feel this new life-line will help them. We encourage all people with Parkinson's, their family members and healthcare professionals to use this aid.”
Knut-Johan Onarheim, EPDA President, welcomes the launch of the Parkinson’s Decision Aid: “The EPDA is delighted to be working in partnership with the Parkinson’s Association Ireland in making this significant resource available in the country. The PDA is an invaluable tool for people with Parkinson’s and their families and will aid them in asking the right questions at the right time so that they can take part in managing their condition, which will ultimately improve their quality of life.”
Enquiries 1 800 359359