Talking to Your Kids
For more information on how to talk to your children about your neurological disorder, contact one of the patient advocacy organizations for that disorder listed on these pages. If your children are old enough to be surfing the Internet, you can use these sites to teach them how to identify reliable sources of information. Other sources of information and advice include:
The American Red Cross (for emergency preparedness tips) redcross.org
The Brain MattersAmerican Academy of Neurology patient Web site thebrainmatters.org
Renovation Survival Guide
Renovating your house should be about improving the quality of life of the residents—particularly the person with the neurological disorder. Such a project can seem overwhelming at first, so it's important to do research, seek as much advice as possible, and employ qualified, reliable tradesmen.
WHERE TO FIND HELP:
ImproveNet is an Internet service company dedicated to being the homeowner's advocate in finding reliable contractors, architects, and designers for their remodeling or new construction projects: improvenet.com.
The Courage Center specializes in serving people with brain and spinal injuries, neurological conditions, chronic pain, and congenital disabilities—helping them with many of life's challenges, including home remodeling. Although based in Minnesota, the Courage Center staff is knowledgeable about similar programs throughout the country: courage.org.
The National Association of Home Builders provides information on choosing a contractor certified in its “Certified Aging in Place Specialists” (CAPS) program: nahb.org.
The National Association of the Remodeling Industry provides a guide for hiring a professional contractor for any region in the U.S. The guide offers design ideas and tips on hiring a professional contractor: nari.org.
The National Resource Center on Supportive Housing and Home Modification offers a National Directory of Home Modification and Repair Programs, additional links, a library, FAQ, and much more on home modifications: homemods.org.
The Wheelchair Accessible Home Clearinghouse is a Web site where sellers can list accessible homes and prospective buyers can search for accessible properties. The site offers a list of realtors who specialize in selling accessible homes: waccess.org.
HELP FOR ALL NEUROLOGICAL DISORDERS
American Academy of Neurology Foundation neurofoundation.org 1-800-879-1960
The Brain MattersAAN 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 Centeral zheimers.org 1-800-438-4380
Alzheimer's Foundation of America alzfdn.org 1-866-232-8484
Autism Society of America autism-society.org 1-800-3AUTISM (1-800-328-8476)
United Cerebral Palsy ucp.org 1-800-872-5827Dystonia
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 AND SEIZURES
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
Migraine Research Foundation migraineresearchfoundation.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)
MSFriends msfriends.org 1-866-MSFRIENDS
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)
Neuropathy Association neuropathy.org 212-692-0662
American Pain Foundation painfoundation.org 1-888-615-PAIN (1-888-615-7246)
PARKINSON'S DISEASE & MOVEMENT DISORDERS
American Parkinson Disease Association apdaparkinson.org 1-800-223-2732
International Essential Tremor Foundation essentialtremor.org 1-888-387-3667
Michael J. Fox Foundation for Parkinson's Research michaeljfox.org 1-800-708-7644
National Ataxia Foundation ataxia.org 1-763-553-0020
National Parkinson Foundation parkinson.org 1-800-327-4545
Parkinson's Disease Foundation pdf.org 1-800-457-6676
Society for Progressive Supranuclear Palsy curepsp.org 1-800-457-4777
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
Spanish-Language Resource Book
In a study published in the American Journal of Epidemiology in 2003 of 588 newly diagnosed Parkinson's disease cases, the age- and gender-adjusted rate was highest among Hispanics. So a Spanish-language patient resource book is long overdue. Hacia adelante helps people affected by Parkinson's understand the disease, learn how to live well despite the diagnosis, navigate health insurance, and research various treatment options. The book was funded by Teva Neuroscience and developed by Lawrence Elmer, M.D., Ph.D., director of the Center for Neurological Disorders and the Parkinson's Disease and Movement Disorder Program at the University of Toledo, Robin Anthony Elliot, M.A., executive director of the Parkinson's Disease Foundation, Lauren Seeberger, M.D., the medical director of the Movement Disorders Center at the Idaho Elks Rehabilitation Hospital, and Suzanne Geffen Mintz, M.S., president and co-founder of the National Family Caregivers Association. Go to Azilect.com for a free copy.