Live Well Today

man_and_boy_sm
To support that mission we offer specific programs, information and tools for living well.

Links and Other Resources

Support Us

Clinical Trials

Fox Trial Finder. Online resource to help people find opportunities to participate in Parkinson’s clinical trials. www.foxtrialfinder.michaeljfox.org

 

Online Sources for Care Partners

These sites offer helpful information, support and education for family and care partners.

Caring: www.caring.com
Family Caregiver Alliance: www.caregiver.org
National Alliance for Caregiving: www.caregiving.org
Resource for Care Partners: www.caregiving.com
CareGivers of People with Parkinson’s (CARE): www.pdcaregiver.org
U.S. Department of Health and Human Services Long Term Care: www.longtermcare.gov

 

Books on Parkinson’s

The Happiness of Pursuit: A Father’s Courage, a Son’s Love and Life’s Steepest Climb
Author: Davis Phinney & Austin Murphy, 2011.
www.davisphinney.com

Parkinson’s :10 Secrets to a Happier Life
Author: Michael S. Okun, MD

HOPE: Four Keys to a Better Quality of Life for Parkinson’s People.
Author: Hal Newsom, 2002.

The First Year-Parkinson’s Disease: An Essential Guide for the Newly Diagnosed
Author: Jackie Hunt Christensen, Paul, M.D. Tuite (Foreword), 2005.

Parkinson’s Disease and the Family: A New Guide
(The Harvard University Press Family Health Guides)
Authors: Sharma Nutan, M.D., Elaine Richman, 2005.

Parkinson’s Disease & the Art of Moving
Author: John Argue, 2000.
www.parkinsonsexercise.com

MOVE IT! An Exercise and Movement Guide for Parkinson’s Disease
Author: Kevin Lockette, PT, 2009.
www.parkinsonsmoveit.com

YOGA for Movement Disorders: Rebuilding Strength, Balance and Flexibility for Parkinson’s Disease and Dystonia
Author: Renée Le Verrier, BS, RYT, 2008.

Swallow Safely: How Swallowing Problems Threaten the Elderly and Others
Authors Roya Sayadi, PhD, CCC-SLP and Joel Herskowitz, MD 2010.

Delay The Disease – Exercise and Parkinson’s Disease
Author: Davis Zid, 2007.
www.delaythedisease.com

Carson and His Shaky Paws Grampa
Carina and Her Care Partner Gramma
Author: Kirk Hall  Illustrator: Alison Paolini

 

 

Wellness & Nutrition

Eight Weeks to Optimal Health
Author Andrew Weil, MD. Random House, 2004.

Center for Complementary and Alternative Medicine. An overview of meditation theory and resources. Also a good site for other alternative and mind-body therapies.
www.nccam.nih.gov/health/meditation/biofeedback

International Association of Yoga therapists. Learn about the healing potential of therapeutic yoga or find a yoga therapist.
www.iayt.org.

Healthy Lifestyle recommendations of the American Heart Association
www.americanheart.org

Dietary Guidelines of the US Department of Agriculture
http://www.cnpp.usda.gov/dietaryguidelines.htm

U.S. Department of Health and Human Services Dietary Guidelines for Americans
http://health.gov/dietaryguidelines/dga2010/DietaryGuidelines2010.pdf

The food pyramid recommendations are contained in the 2005 Dietary Guidelines for Americans and can be purchased from the US Government Printing office by calling (866) 512-1800. Refer to stock number 001-000-04719-1 or go to bookstore.gpo.gov. It can also be viewed online at www.healthierus.gov/dietaryguidelines/index.html.

NeuroFit NetWorks. Mission is to develop and expand access to community-based neurofitness centers and programs that implement the Exercise4BrainChange principles of practice and to promote early intervention and continuous access to research-based exercise programs.
www.nfnw.org


Vitamins & Supplements

United States Pharmacopeia (USP)
USP verifies brand name supplements and vitamins to insure purity, potency and bioavailability of the agent into the body.
www.usp.org

Consumer Labs
Lists quality and purity information for brand name supplements and other over the counter nonprescription therapies.
www.consumerlabs.com

Mayo Clinic
This site includes information about drugs, vitamins and supplements including a report card analyzing the quality of data from research studies investigating the use of these products.
www.mayoclinic.com/health/parkinsons-disease/DS00295

 

Deep Brain Stimulation (DBS)

Refuse to Surrender
This site is designed to create awareness of the window of opportunity for patients who might benefit from DBS therapy.  It also provides programs to support patients, such as nurse expert, physician locator, and the Medtronic peer-to-peer volunteer ambassador programs. www.medtronicdbs.com

DBS-STN.org
DBS-STN.org (an affiliate of the Parkinson Alliance), is a web-based platform that brings together members of the Parkinson’s DBS and non-DBS community, discussing issues, and reporting the results of its research. www.dbs-stn.org

Drug Assistance Programs

These sites list pharmaceutical company drug financial assistance programs sponsored by pharmaceutical companies.

Needy Meds: www.needymeds.org

Rx Assist Patient Assistance Program Center: www.rxassist.org

 

Parkinson’s Disease Foundations

MICHAEL J FOX FOUNDATION
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today. We believe without fail that our goal is within reach – but we can’t get there without your support. Please join the fight today.

Michael J. Fox Foundation for Parkinson’s Research
Church Street Station, P.O. Box 780, New York, NY 10008-0780
Phone: (800) 708-7644
www.michaeljfox.org

PARKINSON’S DISEASE FOUNDATION
The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson’s by funding promising scientific research to find the causes of and a cure for Parkinson’s while supporting people with Parkinson’s, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded over $80 million worth of scientific research in Parkinson’s disease, supporting the work of leading scientists throughout the world.

If you or a loved one is living with Parkinson’s disease, we encourage you to call our National HelpLine (800) 457-6676, or Ask the Expert your questions about PD, using our online service.

Parkinson’s Disease Foundation
Main Office 
1359 Broadway, Suite 1509, New York, NY 10018
Phone: (800) 457-6676
Fax: (212) 923-4778
www.pdf.org

NATIONAL PARKINSON’S FOUNDATION
The mission of the National Parkinson Foundation is to improve the quality of care for people with Parkinson’s disease through research, education and outreach.

Founded in 1957, NPF is a leading national organization with an extensive grassroots network of Centers of Excellence, chapters and support groups in the United States, Canada and internationally. Unique among the national Parkinson’s organizations, NPF is the only organization with a singular focus on improving the quality of care in Parkinson’s disease. Since 1982, NPF has funded more than $150 million in care, research and support services.

The core of our efforts is the NPF Center of Excellence network, 43 leading medical centers around the globe that deliver care to more than 50,000 Parkinson’s patients. Through this network, NPF creates a community of health care professionals dedicated to improving clinical care in Parkinson’s disease. In each of our research, education and outreach programs, NPF is dedicated to promoting our passionate belief that the best care is a comprehensive approach that addresses the whole person and the full range of symptoms of the disease.

National Parkinson’s Foundation, Inc
1501 N. W. 9th Avenue/Bob Hope Road, Miami, FL 33136-1494
Phone: (800) 327-4545 or (305) 243-6666
Fax: (305) 243-5595
www.parkinson.org

AMERICAN PARKINSON’S DISEASE ASSOCIATION
The American Parkinson Disease Association, Inc. was founded in 1961 to “ease the burden and find a cure” for Parkinson’s disease. Headquartered in New York, the organization focuses its energies on research, patient support, education and raising public awareness of the disease.
The American Parkinson’s Disease Association National Office
135 Parkinson Avenue, Staten Island, NY 10305
Phone: (800) 223-2732 or (718) 981-8001
Fax: (718) 981-4399
www.apdaparkinson.org

THE PARKINSON ALLIANCE
The Parkinson Alliance is a national non-profit organization committed to raising awareness and funds to help finance the most promising research to find the cause and cure for Parkinson’s disease.

The Parkinson Alliance is the umbrella organization responsible for:

  • Parkinson’s Unity Walk (www.unitywalk.org), the largest single-day grassroots awareness and fundraising event for the Parkinson’s community which takes place each spring in New York City’s Central Park
  • Team Parkinson (www.team-parkinson.org), a fundraising event which began as an official charity of the Los Angeles Marathon and is growing into additional race events in other major U.S. cities
  • DBS-STN (www.dbs-stn.org), a web based platform that brings together members of the Parkinson’s DBS and Non-DBS community to give patients a voice, discussing issues, and reporting the results of its research.

The Parkinson’s Alliance
P.O. Box 308, Kingston, NJ 08528-0308
Phone: (800) 579-8440 or (609) 688-0870
www.parkinsonalliance.org and www.dbs-stn.org

MUHAMMAD ALI PARKINSON CENTER MOVEMENT DISORDERS CLINIC
The Muhammad Ali Parkinson Center (MAPC) and Movement Disorders Clinic is a National Parkinson Foundation Center of Excellence, and a wonderful resource for people with Parkinson’s and their families. The Center was established in 1997 by Muhammad Ali, Jimmy Walker, a Phoenix philanthropist, and Dr. Abraham Lieberman.

Our staff is committed to providing excellence in diagnosis, treatment, therapy, research and education for people with Parkinson’s disease (PD) and other movement disorders.

Muhammad Ali Parkinson Center Movement Disorders Clinic
St. Joseph’s Hospital and Medical Center
240 West Thomas Road, Suite 301
Phoenix, Arizona 85013
http://www.thebarrow.org/Neurological_Services/Muhammad_Ali_Parkinson_Center/index.htm

PARKINSON’S ACTION NETWORK (PAN)
1025 Vermont Avenue NW, Suite 1120, Washington, DC 20005
Phone: (800) 850-4726
Fax: (202) 638-7257
www.parkinsonsaction.org
E-mail: info@parkinsonsaction.org

PARKINSON SOCIETY CANADA
4211 Yonge Street, Suite 316, Toronto, ON M2P 2A9 Canada
Phone: (416) 227-9700 
Fax: (416) 227-9600
www.parkinson.ca

WE MOVE (WORLDWIDE EDUCATION & AWARENESS FOR MOVEMENT DISORDERS)
204 West 84th Street, New York, NY 10024
Phone: (212) 875-8312 
Fax: (212) 875-8389
www.wemove.org

[R.S.]