External Links and ResourcesGovernment Agencies
Professional Societies/Associations
Patient-directed Health Sites
Physician-directed Health Sites
Information on Clinical Trials
Mailing Lists and Newsgroups
Research Fundraising Organizations Parkinson’s Disease
Movement Disorders ORGANIZATIONS
National Parkinson Foundation: Education, Research, Information, Referral, Outreach.
Michael J. Fox Foundation for Parkinson’s Research
Parkinson’s Action Network: Seeks to strengthen funding, legislation, research.
The Parkinson Alliance: Research.
Parkinson’s Disease Foundation: Education, Research, Advocacy.
Advancing Parkinson’s Therapies: Parkinson’s Disease Clinical Trials
National Institute of Health/National Institute of Neurological Disorders and Stroke: Research and information.
WE MOVE™ Worldwide Education and Awareness for Movement Disorders
Awakenings: Resource materials.
International Essential Tremor Foundation
Dystonia Medical Research Foundation
Restless Legs Syndrome Foundation HOUSING INFORMATION
Assisted Living Federation of America
Nursing Home Information
American Association of Homes and Services for Aging CAREGIVER ASSOCATIONS
Parkinson’s Disease Caregiver’s Information
Caregiving Online
Family Caregiver Alliance
National Alliance for Caregiving
National Family Caregivers Association
Lotsa Helping Hands
National Association of Professional Geriatric Care Managers LEE SILVERMAN VOICE TREATMENT® FOUNDATIONPO Box 642Louisville, CO 80027 888/606-5788 www.lsvt.org For speech exercise videotapes for people with PD: www.learningloud.com EXERCISE RESOURCESNational Institute on Aging: www.nia.nih.gov/exercisebookSit and Be Fit: www.sitandbefit.com Gentle Fitness (video): www.gentlefitness.com American Physical Therapy Association: www.apta.org www.wellbeyond.com Argue, John. Parkinson’s Disease and the Art of Moving. 2000. New Harbinger. Rosenstein, Ann. Water Exercises for Parkinson’s. 2002. Idyll Arbor. FEDERAL GOVERNMENTMedicare Hotline and Information800/633-4227 INFORMATION-REFERRALEldercare Locator800/677-1116 BOOKS ABOUT PARKINSON’S DISEASE, CAREGIVING, AND LIVING WITH PARKINSON’S DISEASEBourke-White, Margaret. Portrait of Myself. 1963. NY: Simon and Schuster.Carlton, Lucille. In Sickness and in Health: Sex, Love, and Chronic Illness. 1994. NY: Dell Publishing Reader Service. Cote, Lucien, editor. Parkinson’s Disease and Quality of Life. 2000 Haworth. Thirty-one essays on a wide range of topics. Couper, Donna. Aging and Our Families: Handbook for Family Caregivers. 1989. Human Sciences Press. Cram, David L., MD. Answers to Frequently Asked Questions in Parkinson’s Disease: A Resource Book for Patients and Families. 2002. Acorn Pub. Personal experiences, medical research, glossary, and resources. Dorros, Sidney. Parkinson’s, A Patient’s View: One Man’s Account of How He Achieved “Accommodation without Surrender.” 1989. Washington, D.C.: Seven Locks Press. Fox, Michael J. Lucky Man: A Memoir. 2002. Hyperion. Author’s struggles to deal with and find meaning in his life with PD. Grady-Fitchett, Joan. Flying Lessons: On the Wings of Parkinson’s Disease. 1998. Forge. Courageous woman’s reflections on her journey living with PD. Havemann, Joel. A Life Shaken: My Encounter with Parkinson’s Disease. 2002. Johns Hopkins. Hutton, J. Thomas, MD. Preventing Falls: A Defensive Approach. 2000. Prometheus. Hutton, J. Thomas, MD and Raye Lynne Dippel, eds. Caring for the Parkinson Patient: A Practical Guide. Second edition. 1999. Prometheus Books. Ilardo, Joseph and Rothman, Carole. I’ll Take Care of You. 1999. New Harbinger Publications. A caregiver guide to rights, responsibilities, solutions. Kondracke, Morton. Saving Milly: Love, Politics, and Parkinson’s Disease. 2001. Ballantine. Renowned political journalist’s moving, honest portrait of his relationship with his wife, and how her struggle with PD transformed their lives. Lieberman, Abraham, MD. 100 Questions & Answers about Parkinson Disease. 2003. Jones and Bartlett Publishers. Physician and patient views in understanding and dealing with Parkinson disease on a day-to-day basis. Lieberman, Abraham, MD. Shaking Up Parkinson’s Disease: Fighting Like a Tiger, Thinking Like a Fox. 2002. Jones and Bartlett. PD symptoms, treatments, anxiety, depression. Mace, Nancy L. and Rabins, Peter V. The 36-Hour Day. Ground-breaking, consciousness-raising book about caregiving. Monnot, Michel. From Rage to Courage. Strong, Maggie. Mainstay: For the Well Spouse of the Chronically Ill.1997. New York: Bradford Books. CATALOGUES OF ADAPTIVE PRODUCTSAdaptability 800/243-9232Clothing Solutions 800/427-0785 J. C. Penny – Easy Dressing 800/222-6161 Sammons Preston 800/323-5547 Sears – Home Health Service 800/326-1750 CAREGIVER WEBSITESCaregiving Online* www.caregiving.comFamily Caregiver Alliance* www.caregiver.org National Alliance for Caregiving www.caregiving.org National Family Caregivers Association www.nfcacares.org * = Online support groups available OTHER HEALTH ASSOCIATION WEBSITESAlzheimer’s Association – National www.alz.orgAlzheimer’s Association – Illinois www.alzheimers-illinios.org American Cancer Society www.ca.cancer.org American Heart Association www.americanheart.org Arthritis Foundation www.arthritis.org |
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