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Web Resources for People with Parkinson's - Part One

The worldwide web means different things to different users. For organizations, it is a means of disseminating information and of promoting goods and services. For individuals, it has become both a productivity tool, saving time and money in finding out about the world, and a way of staying in touch not just with those close to home but with different communities across time and geographical boundaries.

The vast quantity of material available to web-browsers spans a wide spectrum of style and content, from the inspiring personal journal of an individual to the scientific rigor and authority of well-known medical institutions. Whether you need to locate a neurologist, to update yourself on recent research, to read about current clinical trials or to meet new friends within a 'virtual community': the web has it all.

PDF News & Review asked the Parkinson's community to tell us which websites and resources they frequently use and find valuable. Here, we provide readers with an overview of these cyberspace successes in Part I of a two-part series. Watch out for PDF News & Review Summer 2003 issue for a review of web resources for clinical trials; pharmaceutical companies; scientific news; political advocacy groups and much more!

National Voluntary Patient Advocacy Groups

The websites listed below are voluntary not-for-profit organizations that support and serve the Parkinson's community. In addition to providing PD-related news and forthcoming events and activities, many sites offer special features, which are indicated below.

 
  American Parkinson Disease Association
www.apdaparkinson.com

Ph: (800) 223-2732

Founded in 1961, the APDA has the following mission: "Ease the Burden and Find the Cure" for Parkinson's disease. They do this through research, patient and family support and education.

  • Locate regional APDA Chapters and Information Referral Centers.
  • Download free booklets and pamphlets online.
 
  "James", a site about Parkinson's disease
james.parkinsons.org.uk

A UK site with international content, containing PD information and other website links and general medical information.

  • Read the section on drug management and information.
  • Access European listserv groups.
 
  Michael J. Fox Foundation for Parkinson's Research
www.michaeljfox.org

Ph: (212) 509-0995

The Michael J. Fox Foundation for Parkinson's Research works to help develop a cure for Parkinson's disease by providing grants that help guarantee that new and innovative research avenues are thoroughly funded and explored.

  • See 'Community Information' for basic resources on topics such as disability benefits.
 
  National Parkinson's Foundation
www.parkinson.org

Ph: (800) 327-4545

NPF funds scientific research and educates medical professionals and the general public to improve awareness of Parkinson's disease.

  • "Spotlight" feature allows browsers to submit questions to medical experts.
  • Regional PD specialist and support group locator feature
 
  Northwest Parkinson's Foundation
www.nwpf.org

Ph: (877) 980-7500

A Washington State-based nonprofit that is dedicated to community outreach and awareness within the region and also to advocacy to government for increased funding for research. The NWPF also raises money to help fund a unique multi-disciplinary care center, staffed by a team of movement disorder specialists.

  • Source the latest news on PD research and other reports.
  • Find information on events and activities taking place in the Northwestern U.S.
 
  The Parkinson Alliance
www.parkinsonalliance.net

Ph: (800) 579-8440

The Parkinson Alliance raises funds through local events, including the Parkinson's Unity Walk in New York City to support scientific research programs of other PD organizations.

  • Review news releases and updates on recent PD research, stories and events.
 
  Parkinson's Disease Foundation
www.pdf.org

Ph: (800) 457-6676

Founded in 1957, PDF is a leading presence in the field of Parkinson's disease research, education, and public information. Programs include; advancing Parkinson's science through research awards and training fellowships; providing information and education to the Parkinson's community through materials and conferences; and engaging in advocacy work.

  • 'Ask the Expert' and get an answer from the PDF physician team.
  • See the 'Research Bulletin' for an update on research funded by PDF.
 
  People Living with Parkinson's
www.plwp.org

PLWP aims to improve the quality of life of people living with Parkinson's by encouraging information sharing, mutual support and friendship within the Parkinson's community.

  • Go to the site chat-room to talk with guest speakers and others.
  • Find the locations and schedules of national fundraising and awareness events.
 
 
Caregivers

  Caregiver.com
www.caregiver.com

Ph: (954) 893 0550

Caregiver Media Group provides information, support and guidance for family and professional caregivers.

  • Read topic specific newsletters and feature articles; archive issues of Today's Caregiver magazine and a free subscription to weekly e-bulletin.
 
  CARE

Caregivers Really Are Essential is a listserv dedicated to caregivers.

 
  National Family Caregivers Association
www.nfcacares.org

Tel: (800) 896-3650

NFCA is a grassroots organization that was created to educate, support and empower the millions of Americans who care for chronically ill, aged or disabled loved ones of all diagnoses.

  • Find information and advice for caregivers; forthcoming workshops; book reviews; reading lists; "how-to" guides; tips; market research reports.
 
Listserv for PD community

 
www.braintalk.org

Described as the world's largest online neurological patient support group, these forums are owned and maintained by the Department of Neurology at Massachusetts General Hospital. Three specific forums are listed for Parkinson's disease. In addition, a search function allows users to review archived topics.

 
  Parkinson Information Exchange Network
www.parkinsons-information-exchange-network-online.com

Also known as Parkinsn list, this email discussion group and web interface is one of the largest PD online groups with over 2,000 members worldwide. The Toronto-centered group shares information, advice, friendship and news on PD. The web interface also lists 300 of the most recent messages.

 
  Parkinson's Friends
www.parkinsonsfriends.net

PD list serve that members describe as the place to visit to be serious or fun, make friends or visit when you can't sleep.

 
Medical Information Sites

Where do I find:
  Healing Well. Com
www.healingwell.com

A comprehensive information resource for patients, caregivers and families who are coping with diseases and chronic illnesses.

  • View the latest science news or access the archive for easily retrievable releases from around the world.
 
  MEDLINEplus
www.nlm.nih.gov/medlineplus/parkinsonsdisease.html

MEDLINEplus offers extensive information from the National Institutes of Health and other trusted sources on over 600 diseases and conditions. The above link directs browsers to the section on Parkinson's disease.

  • Find hospitals and physicians.
  • Look up terms in a medical encyclopedia and dictionary.
  • Find health information in Spanish
  • Review extensive information on prescription and nonprescription drugs
 
  Neurology Channel
www.neurologychannel.com

Developed and monitored by physicians, this site provides medical information and resources for consumers and medical professionals.

  • Locate your nearest neurologist through MD Locatorô.
  • Ask questions of physicians or participate in chat-rooms in the Neurology Forum.
 
  Parkinson's Control
www.parkinsonscontrol.com
Developed by medical experts, this site provides a full range of information about Parkinson's disease, current treatment options and the latest research.
  • Review video programs with full-text transcripts for a fully interactive experience.
 
  WebMD Parkinson's Disease Condition Center
www.webmd.com

Ph: (201) 703-3400

Designed to provide services that help physicians and consumers navigate the healthcare system. Click on 'condition center' and select Parkinson's from the 'Nervous System and Brain' category.

  • Read information about new treatment options for PD
  • Find out about PD medications and clinical trials
 
Younger audiences

  Young Onset Parkinson's Association
www.yopa.org
 

Ph: (505) 293-5612

Identify nationwide support groups by state. Access helpful tips, mind-stretching games and discussion lists that offer support to those living with young-onset Parkinson's disease.

 
  PD Kids
www.coles.org.uk/Current_Projects/Lists/pdkids.htm
 

An e-forum for kids in families with PD that gives them opportunities for support and sharing.

 
Quick Reference

Where do I find:
  A neurologist near my home?
www.neurologychannel.com
 
  A PD listserv?
www.parkinsons-information-exchange-network-online.com
 
  A website where I can ask a question and receive an answer from a medical expert?
www.pdf.org
 
  A site that is reviewed and monitored by medical professionals?
www.neurologychannel.com
 
  Web resources are there on the web for caregivers?
www.nfcacares.org
 

Happy Surfing!