Parkinson's
This page is being created as part of a project undertaken through the APPDE. Please do not edit these pages until the project is complete, but feel free to contact the author with any comments.
Original Editor - The APPDE.
Top Contributors - Lauren Heydenrych, Kim Jackson, Admin, Rachael Lowe, Laura Ritchie, Lucinda hampton, Wendy Walker, Rucha Gadgil, Naomi O'Reilly, Lauren Lopez, Bhanu Ramaswamy, Mariam Hashem, Nikhil Benhur Abburi, Simisola Ajeyalemi, Vidya Acharya, Manisha Shrestha, Jess Bell, Tony Lowe, Aminat Abolade and Scott Buxton
Introduction
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The following section, and the associated/linked pages, have been collated by Board members of the Association of Physiotherapists in Parkinson's Disease: Europe (APPDE).
The APPDE is an international, non-profit making, non-religious and non-political organisation. Its mission is to facilitate a dialogue between researchers and clinicians in order to promote best clinical practice of physiotherapy in Parkinson’s and Parkinson-related disorders (Parkinsonisms).
The practical aims of the APPDE are:[edit | edit source]
To facilitate and support networking
To support the development of educational initiatives
To facilitate and support collaborative networks related to research funding and programs
To translate research findings into clinical practice
To understand different health care systems
To raise the profile of the contribution of physiotherapy to integrated, multidisciplinary care in Parkinson’s Disease
Information in Physiopedia [edit | edit source]
Much of the material has been sourced from work undertaken by individual members of the Board that have informed chapters and papers they have written relating to physiotherapy for people with Parkinson's.
In addition to their individual contributions in the field of Parkinson’s, all APPDE Board members have been party to the development of the European Physiotherapy Guideline (out for public review). A lot of the practical physiotherapy-related information is linked with this resource. The European Guideline is evidence-informed from global work; it is a collaborative document using the expertise of physiotherapists and people with Parkinson’s across several countries both inside and outside of Europe, plus has an extensive reference list providing the sources of information – it is a truly international document in development.
Information about the APPDE can be found at: www.appde.eu or make enquiries via [email protected]
About Parkinsons[edit | edit source]
Parkinson’s, or Parkinson’s disease (PD,) is a progressive, neurodegenerative condition.
Other neurodegenerative disorders include Alzheimer’s disease, Huntington’s disease and amyotrophic lateral sclerosis.
James Parkinson first described the disorder in his 1817 Essay on the Shaking Palsy. An estimated seven to 10 million people worldwide are living with Parkinson's.
Parkinson’s creates complexities for health and social staff helping individuals and those affected by it (carers, family members, friends) manage the condition due to the varied combinations of motor (movement) and non-motor symptoms presented throughout the course of the condition.
Diagram...
{If we are given permission Rachael, it would be nice to copy Figure 3.1 on page 24 of the European Guideline as a potential care model - http://parkinsonnet-engels.aride.nl/media/11928217/eu_20physiotherapy_20guideline_20pd_review_2020131003-1.pdf]
Parkinson’s cannot yet be cured although a lot of finance and resources are being expended on research to find a cure.
Parkinson’s most often occurs after the age of 50 and is one of the most common nervous system disorders of the ageing populations. The condition is caused by the slow deterioration of the nerve cells in the brain, which create dopamine. Dopamine is a natural substance found in the brain that plays a major role in our brains and bodies by messaging, and therefore communicating across various systems.
Some non-motor aspects (sleep problems, low mood, constipation and loss of sense of smell) occur several years prior to observable motor symptoms develop. Physiotherapists are most often involved in the mid stages of the condition, once balance and mobility become affected, but it can be helpful if they can assess and advise people soon after diagnosis in order to maintain activity and prevent problems.
Resources[edit | edit source]
Information about Parkinson’s can be found on the following websites:
USA = http://www.pdf.org/en/parkinson_statistics
UK = http://www.parkinsons.org.uk/content/facts-journalists)
Europe = http://www.epda.eu.com/en/parkinsons/in-depth/
Parkinsons Research and Support Institutions[edit | edit source]
1. The European Parkinson’s Disease Association (EPDA) http://www.epda.eu.com/en/ is a European Parkinson's umbrella organisation. They represent 45 member organisations http://www.epda.eu.com/en/about-the-epda/our-members/] and advocate for the rights and needs of more than 1.2 million people with Parkinson’s and their families.
The EPDA vision is to enable all people with Parkinson's in Europe to live a full life while supporting the search for a cure.
The group launched the European Parkinson’s Disease Standards of care Consensus Statement http://www.epda.eu.com/en/resources/parkinsons-consensus-statement/] in the European Parliament in November 2011. The document defines what the optimal management of Parkinson’s should be and what good-quality care should consist of. The document is not only developed by experts in the field of Parkinson’s but includes the voice of people with Parkinson’s. In addition to this, they have produced some amazing resources to introduce people to the condition. Watch http://www.youtube.com/watch?v=pqeZDFnpLpg on YouTube to see "Living with Parkinson's" – the first of a series of films produced by Norges Parkinsonforbund (the Norwegian Parkinson's disease Association).
2. Parkinson’s UK site: http://www.parkinsons.org.uk/
2. Parkinson’s UK site: http://www.parkinsons.org.uk/3. Move4Parkinson’s – set up by Margaret Mullarney who was diagnosed with Parkinson’s in 2004. The site is dedicated to educating, empowering and inspiring People with Parkinson’s and their families or carers (Parkinson’s communities) to gain the knowledge and skills they need to improve their Quality of Life (hyperlink to http://www.move4parkinsons.com). Margaret recommends the Five Elements Framework based on her personal experience
In September 2009, SPRING (the research interest group of the Parkinson’s Disease Society) hosted a conference on the effect of exercise on Parkinson’s. I, Bhanu Ramaswamy, was part of the organising committee with my AGILE / ACPIN Parkinson’s Project Officer hat on, alongside Vicki Goodwin, who was also invited to speak on her research.
The conference explored known aspects plus issues yet to be discovered about the benefits of exercise for people with Parkinson's. Contributions were from invited participants from across the world in the hope of enabling proposals for new research collaboration to promote exercise as an essential component of therapy for Parkinson's.
General conference information can be accessed through the website:
http://spring.parkinsons.org.uk/content/blogcategory/90/349/
Videos of the two keynote presentations are now available to watch online directly from Professor Alice Nieuwboer, who presentment on ‘Exercise for Parkinson's disease: The evidence under scrutiny’ at http://spring.parkinsons.org.uk/springdocs/NieuwboerPage.html
and by Professor Michael Zigmond who presented on ‘Exercise and Parkinson's disease: Evidence for efficacy from cellular and animal studies’ at http://spring.parkinsons.org.uk/springdocs/ZigmondPage.html.
Both are about 45 minutes each, but well worth the time.
The Parkinson's UK site hosts a lot of information about Parkinson's and management of the condition. There is a specific tab for professionals on the site at http://www.parkinsons.org.uk/
Ramaswamy B, Jones D, Goodwin V, Lindop F, Ashburn A, Keus S, Rochester L, Durrant K (2009). Quick Reference Cards (UK) and Guidance Notes for physiotherapists working with people with Parkinson’s disease. Parkinson’s Disease Society, London.
Case Studies[edit | edit source]
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Recent Related Research (from Pubmed)[edit | edit source]
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References[edit | edit source]
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