Online Patient Resources

Parkinson's Disease:

Parkinson's Off-Time Management Discussion Forum
WE MOVE's Off-Time Management in PD Discussion Forum invites visitors to submit questions for discussion with other patients and caregivers in order to improve their ability to communicate with their physicians about their condition.

Local Parkinson's Disease Support Group Locator
The National Parkinson Foundation maintains a site of local Parkinson's disease support groups throughout the United States. Visitors to the site can search by state or by proximity to their ZIP code (e.g. 25 miles).

Exercises for Parkinson's Patients
The Center for Neurologic Studys Parkinsons website provides descriptions of a number of exercises that benefit Parkinsons patients. Visitors to the site will learn basic exercises, exercises specifically for tight muscles and poor posture, and tips for better balance, walking, turning, and getting into and out of a chair and a bed.

Video Describes Activa® Therapy in Context With Other Parkinson's Treatments
The Parkinsons Information Exchange Network offers a 10-minute video plus transcript, "Treating Parkinson's: What Are Your Options?" (click on "watch video" button). The video, produced by Medtronic, features comments by four experienced movement disorders neurologists discussing antiparkinsonian medications, Activa® Therapy, and the benefits and side effects of these therapeutic approaches.

Resources for Young-Onset Parkinson's
The following is a partial list of resources that explore issues unique to patients with young-onset Parkinson's:

• Living with Parkinson's Disease: A brief introduction to general concerns, including self-help and support groups.
• Young-Onset Parkinson's Association: A variety of information including news articles, patient stories, statistics, questions and answers, and a chat room.
• When Parkinson's Strikes Early: Voices, Choices, Resources, and Treatment: Book written by two women who were diagnosed with Parkinson's in their mid-40s. Addresses problems with romance, marriage and family life; discusses research, funding and publicity; and presents information about support groups and other resources.

NIH Parkinson's Research News Archive
Patients interested in the newest findings in Parkinson's research can visit the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) News Archive page. Recent news postings include Systems-level studies of movement disorders in dystonia and Parkinson's disease and Deep brain stimulation for Parkinson's disease, both from Current Opinion in Neurobiology (2003) 13: 696-706.

NINDS Deep Brain Stimulation for Parkinson's Information Page
The National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH) recently launched an information page specifically about Deep Brain Stimulation for Parkinson's Disease. The page includes an explanation of how stimulation therapy is delivered, how the Activa System components are implanted, and how patients can benefit from the therapy. The page also provides links to a number of Parkinson's organizations.

Online Parkinson's Caregiver Handbook
The Parkinson's Information Exchange Network Online (PIENO), an international e-mail list and website about Parkinson's, offers a complete online Parkinson's Caregiver Handbook. The handbook covers numerous topics, including assisting with daily activities, keeping records, managing medications, addressing a patient's confusion and/or depression, recognizing when community agency help is needed, and understanding legal and financial issues.  View Table of Contents.

Website for Newly Diagnosed Parkinson's Patients
WebMD Health maintains a page specifically for people newly diagnosed with Parkinson's. The page walks patients through an introduction to Parkinson's, the symptoms that likely led to their diagnosis, and a discussion of treatments. Included is a page of questions patients can print and take to their next clinic appointment.

Webcast: Patients' Stories About Device Therapy for Parkinson's
A Healthology.com webcast of device therapy for Parkinson's features an Activa Parkinson's Control Therapy patient, her caregiver, and two physicians at Beth Israel Medical Center, New York. Patients can read a transcript and view the webcast to learn about the benefits of Activa Therapy and a general overview of the system components and surgical procedure. Neurosurgeon Ron Alterman and neurologist Michele Tagliati are the featured physicians.

Webcast Introduces Deep Brain Stimulation for Parkinson's Disease
Deep Brain Stimulation Helps Parkinson's Patients is produced by Healthology.com and features comments by Philip Starr, M.D ., and William J. Marks Jr., M.D ., Univ. of California San Francisco School of Medicine; Blair Ford, M.D ., Columbia-Presbyterian Medical Center, New York City; and Ron Alterman, M.D ., Assistant Professor of Neurosurgery, Albert Einstein College of Medicine, New York City. Healthology.com produces physician-generated health and medical information specifically for distribution on the internet.

NINDS Parkinson's Disease Information Page
The National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH) maintains a page of information about Parkinson's disease. The Parkinson's Disease Information Page describes treatment, prognosis, and current research in Parkinson's disease, including a list of clinical studies that are currently seeking patients.

Parkinson's Disease Index
The PD Index is an extensive, easy-to-use directory of online information about Parkinson's disease and related topics. In addition to standard information such as symptoms, diagnosis, and treatments, the site provides links to information about neuroanatomy, emotional and social aspects of Parkinson's, assistive devices for daily living, and employment and disability issues.

Nutrition Handbooks and Cookbooks
Nutrition You Can Live With offers ordering information for handbooks, cookbooks and other medical publications by registered dietitian Kathrynne Holden. Holden specializes in Parkinson's disease and nutrition, and has written a number of publications including Parkinson's Disease: Guidelines for Medical Nutrition Therapy (includes nutritional risk assessment tools) and Parkinson's Disease: Nutrition Matters.

Managing Nutrition in Parkinson's
Parkinson's and Managing Nutrition is an online informational clearinghouse that links visitors to more than 40 education and research websites judged helpful by Parkinson's patients and caregivers.   Sites include the American Dietetic Association, Tufts Univ., a reference for understanding nutritional labeling, and others.

Parkinson's Caregiving Resource Library
The Parkinson Foundation of the National Capital Area (Washington, D.C.) maintains a list of resources for loved ones and caregivers of people with Parkinson's. This resource library offers more than 20 books and videotapes specifically on the topic of caring for Parkinson's patients.

 

Tremor:

Local Essential Tremor Support Group Locator
The International Essential Tremor Foundation (IETF) maintains a site of local Essential Tremor support groups across the United States. Visitors can click on their state name to view support groups in their area. If no local group is available, visitors can request information from the IETF to start a support group in their area.

MDVUs Essential Tremor Diagnosis Site
WE MOVE's Movement Disorder Virtual University (MDVU) includes a site devoted to the clinical diagnosis of Essential Tremor. The site describes the neurological examination and details the tremor assessment, including physiologic techniques, subjective clinical measures, objective functional performance tests, and assessment on the impact of tremor on the individuals life.

International Essential Tremor Foundation
The International Essential Tremor Foundation (IETF) supports research into the causes and treatment of Essential Tremor (ET) and provides information and support to ET patients. The IETF publishes a quarterly newsletter and maintains a worldwide referral network of neurologists with experience in treating ET.

NINDS Essential Tremor Information Page
The National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH) maintains a page of information about essential tremor. The Tremor Information Page describes treatment, prognosis, and current research in essential tremor, including a list of clinical studies that are currently seeking patients.

 

Dystonia:

NORD Dystonia Information Page
The National Organization for Rare Disorders (NORD) includes a page of dystonia information that lists dystonia's many subdivisions and provides links to dystonia support organizations. NORD works to identify, treat, and find a cure for rare disorders through education, advocacy and research.

WE MOVE Dystonia Page
WE MOVE (Worldwide Education and Awareness for Movement Disorders) maintains a comprehensive information site for dystonia patients.   Visitors learn about the classifications of dystonia, its relationship to activity, its diagnosis and treatment. A chat room is available of registered visitors. The site includes a comprehensive bibliography of references.

Dystonia Questions and Answers
The Dystonia Medical Research Foundation defines dystonia and answers commonly asked questions about the disorder at their FAQ page. Additional links open to sites that cover causes, diagnosis, genetics, prognosis, and related disorders.

 

General Information:

Guide to Insurance Appeals
The Patient Advocate Foundation's detailed Guide to the Insurance Appeals Process features sample appeals letters, specific strategies to use when negotiating the internal and external appeals processes, and instructions to follow when all appeals have been attempted and insurance is still not forthcoming. The Patient Advocate Foundation is a liaison between patients and insurers, employers and/or creditors to resolve insurance, job retention and/or debt crisis matters.

PET Imaging Benefits, Procedure, and What to Expect
A radiology resource for patients maintains a comprehensive page on Positron Emission Tomography (PET) scanning that answers a number of questions patients might have about benefits of the scan, how they can prepare for a PET scan, and what they can expect during the procedure.

WE MOVE Launches Patient E-Newsletter
WE MOVE (Worldwide Education and Awareness for Movement Disorders) now publishes a free, biweekly online newsletter that features regular information about the latest in movement disorders research and new treatment options, in a style accessible to the patient audience. Patients can view an issue of WE MOVE News (link may take a few seconds to connect), and can subscribe online.

Milestone Studies May Reassure Patients of Activa Therapy's History
The Parkinson's Information Exchange Network Online (PIENO) maintains a page of abstracts of past studies on deep brain stimulation. For patients and caregivers who may regard Activa Therapy as still experimental, these studies from Europe and Asia, published between 1991 and 1993, may reassure them of Activa Therapy's relatively long history of treating symptoms of essential tremor and advanced Parkinson's disease.

Information About Magnetic Resonance Imaging
Medicine.net maintains a searchable site of information about more than 130 medical procedures and tests, including a detailed description of Magnetic Resonance Imaging (MRI).  Patients can learn when MRI is used, how it is performed, its risks, and how to prepare for an MRI test.

BrainTalk Communities Online Chat Group
BrainTalk Communities is an online chat room maintained by the Dept. of Neurology at Massachusetts General Hospital to encourage support among neurology patients and caregivers. This high-traffic site features more than 100 categories, including specific discussions on Parkinson's disease, essential tremor and dystonia.   Registration is free.

©Medtronic, Inc. 2008                                                   • Contact Medtronic • Privacy Statement • Terms of Use • Site Map