The Parkinson's disease charter

 
 
People with Parkinson's, their families and healthcare professionals have been working together to promote awareness and increase the profile of the condition with the general public.

The European Parkinson's Disease Association (EPDA) has worked with the World Health Organization (WHO) to develop a charter for people with Parkinson's disease. This charter states that people with Parkinson's disease have the right to:

  • Be referred to a doctor with a special interest in Parkinson's disease
  • Receive an accurate diagnosis - research has shown that how well Parkinson's disease is explained by your doctor at diagnosis can have a major impact on how you live with and manage your condition in the future*
  • Have access to support services
  • Receive continuous care
  • Take part in managing their illness

Useful links

 

General sites

http://james.parkinsons.org.uk/parkinsons.htm
This site is provided by the Adrienne Coles Memorial Trust, and is maintained by Simon Coles (simon@coles.org.uk).

http://www.abilityinfo.com/
Disability Information for Students written by Mike Pegg (pegger@abilityinfo.com). Pegg is a 1997 graduate of the Developmental Services Worker Program at Georgian College in Orillia, Canada. He was inspired to construct this page as a way to share useful links to disability resources for fellow students. The site has grown into a multi-featured news, jobs, and discussion resource for students from around the world studying to support and work for individuals with disabilities. This site is also intended for professionals within the field to continue to be sharp in their knowledge.

http://www.holistic-online.com/Remedies/Parkinson/pd_home.htm
Comprehensive info about Parkinson's disease.

http://www.wemove.org/
The WE MOVE web site is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the Web.

http://www.ninds.nih.gov/
The NINDS offers news, coordinates events, and conducts research into disorders of the brain and nervous system. Also provides information about specific conditions such as Alzheimer's disease, autism, cerebral palsy, epilepsy, and Parkinson's disease, together with details of associated organisations and publications.
Author: National Institutes of Health

http://www.parkinson.org
US society set up to find the cause and cure for Parkinson's disease and related neurodegenerative disorders through research and to educate general medical practitioners to detect the early warning signs of Parkinson's disease, to provide diagnostic and therapeutic services and improve the quality of life for patients and their caregivers.
Author: National Parkinson Foundation
Subjects: health charities, Parkinson's disease

http://www.parkinsonsinfo.com/resource_directory/
A list of support organizations available that can help further your education on Parkinson's disease and provide you with more ideas to help with many of the problems associated with Parkinson's disease. (North America only)

http://www.accessiblesummersun.co.uk/
Discover an exciting world of accessible holidays for wheelchair users, the sensory impaired, slow walkers, mature travellers, their families and friends. From here you can link to the following sites:
Accessible America Accessible Florida
Accessible Canada Accessible Exotic World
Accessible City Breaks Accessible South Africa
Accessible Cruises Accessible Sun
Accessible Downunder Accessible Winter Sun
Accessible Escorted Tours Accessible Everything


http://www.goodaccessguide.co.uk/
Accurate and verified access information about hotels, restaurants, pubs, visitor attractions and other services, is essential for the successful planning and enjoyment of any activity, journey or holiday

http://www.disability.gov.uk/euro/euro.html
2003 has been designated the European Year of Disabled People (EYDP) by the European Commission. The Year was officially launched under the Greek Presidency in Athens on 26 January 2003. The Department for Work and Pensions has the lead on disability issues within Government and is co-ordinating the UK programme of activities for the Year. The year was officially launched in the UK on the week beginning 20 January 2003. Also outlines rights for people with disabilities.

http://www.youngonset-parkinsons.org.uk
YAPP&Rs is a subsidiary body within the Parkinson's Disease Society with the specific aim of representing all young onset people, families and caregivers. Its main goals are to foster mutual support for all young people with Parkinson's disease

http://www.surgerydoor.co.uk

http://www.eurohealth.ie/news2003/news103.html
A newsletter on health issues from Ireland

http://www.pdupdate.org
The 'Self Care Manual for People with Parkinson's disease' is intended first and foremost for people with Parkinson's but it may also prove useful to partners, families, friends and professional caregivers.

If you have Parkinson's you can chose to remain independent and in charge of your own life for as long as possible. The manual supports you in that aim, and provides practical information about a great number of difficulties and emphasises what you can do about them.

This Manual and CD Rom were produced in 2000 and should you wish to view updates on the original content please visit www.pdupdate.org

http://www.MyParkinsons.com
These pages allow people worldwide to chat in a real time environment and post on a message board

http://www.youngparkinsons.com
People With Parkinson's, especially young onset, may wish to visit this site, at the invitation of Thomas Berdine, President Young Onset Parkinson's Association (YOPA) to plot their location on their world guest map.

http://www.pdqonline.co.uk
This is an interactive web site designed to offer personalised help and advice in the management of Parkinson's disease.

http://gofree.indigo.ie/~pdpals/index.htm
PALS Support Group Website. A branch of the Parkinson's Association of Ireland

http://www.parkinsonsdisease.com
Awakenings is an information source on Parkinson's disease.

http://www.milanopertutti.it
AIAS Milano Onlus Italian Association for the Assistance to Disabled People
Tourism and Leisure for Disabled People in Milan

General news sites for searching for news on Parkinson's disease

http://news.bbc.co.uk/1/hi/health/default.stm

http://www.reutershealth.com/en/index.html

Physiotherapy Information

http://online.unn.ac.uk/faculties/hswe/research/Rehab/Rehab.htm
Guidelines for Physiotherapy Practice in Parkinson's disease

http://appde.unn.ac.uk/video.htm
The Association of Physiotherapists in Parkinson's Disease Europe (APPDE) has a VHS video on "Common mobility problems in Parkinson's Disease and how to address them" that can be purchased from this site.

Mobility problems

http://www.wemove.org/
The WE MOVE™ Web Site is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the Web.

http://www.disabilityonline.com.

http://www.novartis.com/diseases_conditions/en/virtual_house.shtml.

Constipation

http://www.embarrassingproblems.com/pages2/analconstipation.htm

http://emedicine.com
Here you can find a range of medical topics and has some articles on constipation - not very patient friendly.

http://www.niddk.nih.gov/health/digest/pubs/const/const.htm
Part of the NIDDK (National Institute of Diabetes and digestive and Kidney Diseases) but provides good information on constipation

Sleep problems

http://www.americansleepassociation.org

http://www.1sleep.com
The International Sleep Medicine Association is the first organization to link all people interested in sleep health and sleep disorders around the world. The goal of the association is to be a complete source for sleep information and communication for all people interested in sleep and sleep disorders.
The International Sleep Medicine Association aims to improve sleep health around the world by educating health care providers and increasing public awareness about sleep health and sleeping disorders.

Difficulties in swallowing and urinating

http://www.healthandage.com
Accurate and easy to understand health information to patients worldwide - great for topics such as swallowing difficulties (known medically as Dysphagia), urination problems etc. (sponsored by Novartis).

http://www.digestivedisorders.org.uk
For patients who have difficulty with their diet.

http://www.incontinence.org/

Psychiatric / psychological problems

http://www.mind.org.uk
Mind is the leading mental health charity in England and Wales. They aim to create a better life for everyone with experience of mental distress.

Sexual problems

http://www.allabouted.com
For erectile dysfunction.

http://www.seekwellness.com
This is a general health website but is good for sexual health problems for men and women.


 
 
Parkinson’s Disease Society (Singapore)
c/o SNSA, 26 Dunearn Road
Singapore 309423.
Tel : 63535 338
Fax : 6358 4139
E-mail
: pdsspore@gmail.com
Website: www.parkinsonsingapore.com