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Alzheimer's Disease Education & Referral Service
Alzheimer's Foundation of America
Epilepsy Bill of Rights
To order the Bill of Rights document as well as a free epilepsy resource kit, call 1-877-637-4448 or visit www.EpilepsyBillofRights.com .
National Parkinson Foundation
Parkinson's Disease Foundation
Michael J. Fox Foundation for Parkinson's Research
“The Brain Matters”
AAN Foundation patients website
American Academy of Neurology Foundation
National Institute of Neurological Disorders and Stroke
National Coordinating Council for Medication Error Reporting and Prevention
USP-ISMP Institute for Safe Medication Practices, Medication Errors Reporting Program
National Patient Safety Foundation
National Council on Patient Information and Education “Talk About Prescriptions”
FDA's Drug Safety Initiative
FDA Center for Drug Evaluation & Research Consumer Education: Ensuring Safe Use of Medicine
Centers for Medicare & Medicaid Services
Search government's official site for State Health Insurance Assistance Program's list of counselors in each state available to answer questions by phone.
Social Security Administration
Website includes online application for assistance with Part D costs and printable form to appeal plan assignments.
Center for Medicare Advocacy
860-456-7790 (Connecticut headquarters) 202-216-0028 (Washington, D.C., office)
Offers help for beneficiaries having problems, including a special section on what to do if you can't get medications.
Medicare Rights Center
212-869-3850 (New York headquarters) 202-589-1316 (Washington, D.C., office)
Operates hotline numbers and welcomes questions from persons with disabilities who are having difficulty with Part D.
Access to Benefits Coalition
Offers Part D help online or by phone to low-income beneficiaries.
Muhammad Ali Parkinson Center
Since its 1997 opening, the Muhammad Ali Parkinson Research Center in Phoenix has conducted research and provided treatment, education and support to patients.
The center's “immediate care” mission: improving quality of life and teaching people with Parkinson's and their families how to live day-to-day with the disease.
In addition to lending his famous name to the Muhammad Ali Parkinson Center at Barrow Neurological Institute, the former heavyweight champion established “Ali Care” — a program that allows fellow Parkinson's patients to undergo treatment regardless of their ability to pay.
The center has launched the first national registry to compile data on Parkinson's from people with the disease. The goal: improve quality of life by developing the world's largest database of information on the ways people with Parkinson's manage their care and treatment as the disease progresses. The registry will be used to facilitate development of new therapies and healthcare services.
THE 36-HOUR DAY: A Family Guide to Caring for Persons with Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life
By Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H. (Warner Books, 2001)
The “bible” for managing Alzheimer's for a quarter-century, this 512-page paperback “is dedicated to everyone who gives a ‘36-hour day’ to the care of a person with a dementing illness.”
ALZHEIMER'S DISEASE: An AAN Press Quality of Life Guide
By Paul Dash, M.D., and Nicole Villemarette-Pittman, Ph.D. (American Academy of Neurology Press, 2005)
This book helps patients, their families and caregivers manage Alzheimer's, providing an overview of the latest on causes, diagnosis and treatment.
THE FORGETTING: Alzheimer's: Portrait of an Epidemic
By David Shenk (Anchor, 2003)
The author weaves science and human drama to explore the disease he defines as “death by a thousand subtractions.”
THE LONG GOODBYE By Patti Davis (Plume, 2005)
Ronald Reagan's daughter weaves childhood memories with an intimate look at her father's descent into Alzheimer's.
MAYO CLINIC ON ALZHEIMER'S DISEASE: Practical Answers on Memory Loss, Aging, Research, Treatment and Caregiving
Edited by Ronald Petersen, M.D., Ph.D. (Mayo Clinic, 2002)
TALKING TO ALZHEIMER'S DISEASE: Simple Ways to Connect When You Visit with a Family Member or Friend
By Claudia J. Strauss (New Harbinger Publications, 2002)
AGING WITH GRACE: What the Nun Study Teaches Us about Leading Longer, Healthier, and More Meaningful Lives
By David Snowdon, Ph.D. (Bantam Books, 2002)