Neurology Now
March/April 2008
Volume 4(2)
p 37–39
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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:

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The American Red Cross (for emergency preparedness tips)

The Brain MattersAmerican Academy of Neurology patient Web

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.


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: .

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: .

The National Association of Home Builders provides information on choosing a contractor certified in its “Certified Aging in Place Specialists” (CAPS) program: .

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: .

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: .

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: .

Assistance Directory


American Academy of Neurology Foundation 1-800-879-1960

The Brain MattersAAN patient website

National Institute of Neurological Disorders and Stroke


Alzheimer's Association 1-800-272-3900

Alzheimer's Disease Education and Referral Centeral 1-800-438-4380

Alzheimer's Foundation of America 1-866-232-8484


Autism Society of America 1-800-3AUTISM (1-800-328-8476)


United Cerebral Palsy 1-800-872-5827Dystonia


Dystonia Foundation 1-800-377-DYST (1-800-377-3978)

National Spasmodic Dysphonia Association 800-795-6732

Spasmodic Torticollis 1-888-445-4588


Epilepsy Foundation 1-800-332-1000

Headache /Migraine

National Headache Foundation 1-888-NHF-5552 (1-888-643-5552)

American Council for Headache Education 1-856-423-0258

Migraine Research Foundation 212-249-5402


Hereditary Disease Foundation 212-928-2121

Huntington's Disease Society of America 1-800-345-HDSA (1-800-345-4372)


MSFriends 1-866-MSFRIENDS

Multiple Sclerosis Association of America 1-800-532-7667

Multiple Sclerosis Foundation 1-800-225-6495

National Multiple Sclerosis Society 1-800-FIGHT-MS (1-800-344-4867)

Myasthenia Gravis

Myasthenia Gravis Foundation of America 1-800-541-5454


ALS Association 1-800-782-4747

Muscular Dystrophy Association 1-800-FIGHT-MD (1-800-344-4863)

Neuropathy Association 212-692-0662


American Pain Foundation 1-888-615-PAIN (1-888-615-7246)


American Parkinson Disease Association 1-800-223-2732

International Essential Tremor Foundation 1-888-387-3667

Michael J. Fox Foundation for Parkinson's Research 1-800-708-7644

National Ataxia Foundation 1-763-553-0020

National Parkinson Foundation 1-800-327-4545

Parkinson's Disease Foundation 1-800-457-6676

Society for Progressive Supranuclear Palsy 1-800-457-4777


American Stroke Association 1-888-4-STROKE (1-800-478-7653)

National Stroke Association 1-800-STROKES (1-800-787-6563)


Brain Injury Association of America, 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 for a free copy.

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