Resource Centre

We aim to share the most up to date information and resources on Parkinson’s as we source it. Resources are placed here on our Move4Parkinson’s website for your information. You can also contact us in the office you have any queries at info@move4parkinsons.com or 01 295 0060

What is Parkinson’s

Parkinson’s disease, or PD as it is sometimes referred to, is a progressive, neurological condition. It is predominantly characterised by problems with body movements, known as ‘motor symptoms’ – the most identifiable, perhaps, being tremor. Other difficulties that are not related to movement can also occur, such as pain, sleep disturbance and depression – these are known as ‘non-motor symptoms’.

According to the Global Declaration for Parkinson’s Disease ‘Moving & Shaping’ (2004), 6.3 million people have Parkinson’s worldwide, affecting all races and cultures. The age of onset is usually over 60, but it is estimated that one in 10 people are diagnosed before the age of 50, with slightly more men than women affected.

Parkinson’s is life-altering, but it is not life-threatening.

For more information on what Parkinson’s is, the symptoms and causes visit http://www.epda.eu.com/en/parkinsons/life-with-parkinsons/

(Source www.epda.eu.com)

Parkinson’s & You

Your Parkinson’s Journey

We at Move4Parkinson’s believe all People with Parkinson’s (PwP’s) are on a journey. One that starts with your diagnosis. Although we cannot control being diagnosed with Parkinson’s, once we have the diagnosis we have a range of options for how we manage our Parkinson’s on a day-to-day basis and how we experience our Parkinson’s journey.
Each of us is unique and Parkinson’s affects us all in different ways, both physically and mentally. Move4Parkinson’s believe that self-management is key to achieving quality of life, but that each PwP should be empowered to choose the self-management activities and approaches which work for them. We cannot tell you what to do or what will work for you. What we can do though is share stories of what has worked for others and guidance on actions or activities to try based on current research.Often you will need to experiment with different activities and approaches in order to discover what works best, based on your own symptoms, how your body reacts to changes and your own personal preferences and lifestyle.

We invite you to explore the five elements model for self-management (which we have developed in collaboration with patients and healthcare workers) and the resources available on this page, including links to information and articles which we have found useful.

When making any change in how you manage your illness it is important that you discuss this with your relevant healthcare professional, to ensure that changes are appropriate and safe in your situation

Move4Parkinson's founder Mags Mullarney at our Patient Empowerment DayResource Centre

The following lists have been compiled to provide links to some tools and websites we have found useful. We will continually update this page.

Have you found a useful resource or website – we would love to hear about it. Drop us an email at info@move4parkinsons.com

 Tools & Resources

  • Move4Parkinson’s Five Elements Brochure A PDF of the Move4Parkinson’s Five Elements Framework for Self-management of Parkinson’s
  • EPDA Resources for People with Parkinson’s: This EPDA (European Parkinson’s Disease Association) site provides comprehensive up-to-date information about Parkinson’s that has been researched and reviewed by European Parkinson’s experts.
  • UCB Pharma Parkinson’s Well-being Map: This is a tool to help you to prepare for consultations with your healthcare team, so that you can help them to understand how living with Parkinson’s disease affects you.
  • Parkinson’s Ireland Freephone Helpline 1800 359 359. The Parkinson’s Association of Ireland are a national charity offering advice, information and support to people with Parkinson’s, their families and friends, and health care professionals. Based in Dublin with local branches throughout the country. They offer a free phone helpline 1800 359 359 (Mon-Thurs 9am-7pm and Fri 9am-5pm) and also have a nurse on staff to answer more medical based questions from our callers.

Websites

Articles of Interest

Parkinson’s Movement Webinars

Parkinson’s Movement host regular information webinars on Parkinson’s Disease. These are then made available on line via www.parkinsonsmovement.com

  1. Webinar 1: The Changing Face of Parkinson’s
  2. Webinar 2: Don’t Panic
  3. Webinar 3: Taking Control (Move4Parkinson’s were delighted to participate in this webinar, you can find us at 8m44secs and 42m 14secs)
  4. Webinar 4: Gut Feelings