Facing a neurological disorder isn't just difficult for the patient. Caregivers can become so involved with looking after for their loved ones that they neglect themselves. These resources help caregivers maintain good health and a positive attitude.
Alzheimer's Association:
alz.org
This Web site from one of the top voluntary health organizations for Alzheimer's disease features an online networking community, a guide to locating care, and data on the latest national conferences and scientific studies.
American Parkinson Disease Association:
apdaparkinson.org
A comprehensive source of patient and caregiver information, including news on fundraisers and symposia, physician and services referrals, and educational publications and programs.
Family Caregiver Alliance:
caregiver.org
Check here for fact sheets on neurological disorders (such as Parkinson's, frontotemporal dementia, and traumatic brain injury), community resources for caregivers, research studies and clinical trials, and caregiving legislation-in English, Spanish, and Chinese.
National Stroke Association:
stroke.org
This site is home to a wealth of information for medical professionals, EMS providers, stroke survivors, and caregivers. Browse online for details about stroke symptoms, risk factors, prevention, recovery, and emergency stroke-center locations.
Alzheimer's Disease
by Paul Dash, M.D. and Nicole Villemarette-Pittman, Ph.D.
This comprehensive resource from the American Academy of Neurology was created for people with Alzheimer's and their caregivers.
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life(4th Edition) by Nancy Mace and Peter Rabins
The new edition lists resources for diagnosing and evaluating dementia, updated legal and financial information, and more on nursing homes and communal living arrangements.
An Uncertain Inheritance, edited by Nell Casey
A collection of insightful essays about the experiences of caregivers. Writers share their pains and humor while relating sibling rivalry, caring for ill parents, choosing institutional care for a spouse, and more.
Compiled by
Elizabeth Stump
American Academy of Neurology Foundation
neurofoundation.org
866-770-7570
The Brain Matters AAN patient website
thebrainmatters.org
National Institute of Neurological Disorders and Stroke
ninds.nih.gov
Alzheimer's Association
alz.org
1-800-272-3900
Alzheimer's Disease Education and Referral Center
alzheimers.org
1-800-438-4380
Alzheimer's Foundation of America
alzfdn.org
1-866-232-8484
National Ataxia Foundation
ataxia.org
1-763-553-0020
Autism Society of America
autism-society.org
1-800-3AUTISM (1-800-328-8476)
United Cerebral Palsy
ucp.org
1-800-872-5827
Dystonia Foundation
dystonia-foundation.org
1-800-377-DYST (1-800-377-3978)
National Spasmodic Dysphonia Association
dysphonia.org
800-795-6732
Spasmodic Torticollis
spasmodictorticollis.org
1-888-445-4588
Epilepsy Foundation
epilepsyfoundation.org
1-800-332-1000
National Headache Foundation
headaches.org
1-888-NHF-5552 (1-888-643-5552)
American Council for Headache Education
achenet.org 1-856-423-0258
The Migraine and Pain Fund
migraineandpainfund.org
212-249-5402
Hereditary Disease Foundation
hdfoundation.org
212-928-2121
Huntington's Disease Society of America
hdsa.org
1-800-345-HDSA (1-800-345-4372)
Multiple Sclerosis Association of America
msassociation.org
1-800-532-7667
Multiple Sclerosis Foundation
msfocus.org
1-800-225-6495
National Multiple Sclerosis Society
nationalmssociety.org
1-800-FIGHT-MS (1-800-344-4867)
Myasthenia Gravis Foundation of America
myasthenia.org
1-800-541-5454
ALS Association
alsa.org
1-800-782-4747
Muscular Dystrophy Association
mda.org
1-800-FIGHT-MD (1-800-344-4863)
American Pain Foundation
painfoundation.org
1-888-615-PAIN (1-888-615-7246)
Neuropathy Association
neuropathy.org
212-692-0662
American Parkinson Disease Association
apdaparkinson.org
1-800-223-2732
Michael J. Fox Foundation for Parkinson's Research
michaeljfox.org
1-800-708-7644
National Parkinson Foundation
parkinson.org
1-800-327-4545
Parkinson's Disease Foundation
pdf.org
1-800-457-6676
American Stroke Association
strokeassociation.org
1-888-4-STROKE (1-800-478-7653)
National Stroke Association
stroke.org
1-800-STROKES (1-800-787-6563)
Brain Injury Association of America
biausa.org
1-800-444-6443
Please look for CLINICAL TRIAL OPPORTUNITIES WITHIN THIS SECTION. For a complete listing, visit ninds.nih.gov/disorders/clinicaltrials_us.htm or clinicaltrials.gov .