For more information—from websites to books

Neurology Now
March/April 2006
Volume 2(2)
p 54–55
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ALZHEIMER'S

Alzheimer's Association

1-800-272-3900

www.alz.org

Alzheimer's Disease Education & Referral Service

1-800-438-4380

www.alzheimers.org

Alzheimer's Foundation of America

1-866-232-8484

www.alzfdn.org

EPILEPSY

Epilepsy Foundation

1-800-332-1000

www.epilepsyfoundation.org

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 .

PARKINSON'S

National Parkinson Foundation

1-800-327-4545

www.parkinson.org

Parkinson's Disease Foundation

1-800-457-6676

www.pdf.org

Michael J. Fox Foundation for Parkinson's Research

1-800-708-7644

www.michaeljfox.org

ONLINE HELP FOR ALL NEUROLOGICAL DISORDERS

The Brain Matters

AAN Foundation patients website

www.thebrainmatters.org

American Academy of Neurology Foundation

www.neurofoundation.org

National Institute of Neurological Disorders and Stroke

www.ninds.nih.gov

MEDICATION SAFETY

National Coordinating Council for Medication Error Reporting and Prevention

www.nccmerp.org

USP-ISMP Institute for Safe Medication Practices, Medication Errors Reporting Program

www.ismp.org

215-947-7797

National Patient Safety Foundation

www.npsf.org

413-663-8900

National Council on Patient Information and Education “Talk About Prescriptions”

www.talkaboutrx.org

FDA's Drug Safety Initiative

www.fda.gov/cder/drugSafety.htm

FDA Center for Drug Evaluation & Research Consumer Education: Ensuring Safe Use of Medicine

www.fda.gov/cder/consumerinfo/ensuring_safe_use.text.html

MEDICARE PART D

GOVERNMENT OFFICES

Centers for Medicare & Medicaid Services

1-800-MEDICARE 1-800-633-4273

www.medicare.gov

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

1-800-772-1213

www.ssa.gov/prescriptionhelp

Website includes online application for assistance with Part D costs and printable form to appeal plan assignments.

ADVOCACY ORGANIZATIONS

Center for Medicare Advocacy

860-456-7790 (Connecticut headquarters) 202-216-0028 (Washington, D.C., office)

www.medicareadvocacy.org

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)

www.medicarerights.org

Operates hotline numbers and welcomes questions from persons with disabilities who are having difficulty with Part D.

Access to Benefits Coalition

202-479-6670

www.accesstobenefits.org

Offers Part D help online or by phone to low-income beneficiaries.

CHAMPION OF PARKINSON'S CAUSES

Muhammad Ali Parkinson Center

602-406-4931

www.maprc.com

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.

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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.

Alzheimer's Companions

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

Figure. No caption available.

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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)

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