My Father, My Brother, and Me

Press Reaction

What is Parkinson's disease?
Resources on living with PD, how the disease affects the brain, hypotheses about its causes, and updates on current research

-- The Michael J. Fox Foundation has links to the latest Parkinson's news stories on their homepage. They also offer a guide to living with PD, with tips for both patients and caregivers, and background on the research initiatives the foundation supports.

-- The National Institutes of Health has published this scientifically detailed but concise overview of PD. You'll also find links to more information about ongoing PD research and to more than a dozen papers about the disease published by the National Institute on Neurological Disorders and Stroke.

-- What's it like to have PD? No two patients experience the disease the same way, so for a range of viewpoints, start with this account from The Boston Globe by Dr. Thomas Graboys, a former cardiologist who says, "From visual perception, cognition, and speech to blood pressure, body temperature control, and sexuality, Parkinson's permeates every aspect of my being." Or read this story by Nancy Grandoff, published on the Parkinson's Disease Foundation site, about finding new interests to counter the ill effects of depression and "self-pity." Finally, here's an article by writer/columnist Michael Kinsley, who maintains sometimes denial is the best approach to serious illness.

-- Parkinson's HopeDigest is a blog-style site that publishes updates on new research or drugs and advice for dealing with the disease. Although it's run by a public relations firm rather than a non-profit organization, the site is a useful portal to the latest developments in PD and commentary from PD patients.

The PD Community
Sites that connect individuals touched by Parkinson's disease and provide informational resources, advice and discussion forums

-- The Parkinson's Disease Foundation offers a unique service called "Ask The Expert," which allows visitors to submit questions they can't find answered anywhere else. You can also browse or search a list of frequently asked questions.

-- The Young Onset Parkinson's Association reaches out to individuals diagnosed with PD at an early age. Their site features multiple forums for sharing stories and questions, including a general message board ("the place to vent, to give advice, to get advice, and ... well basically to talk about anything PD") and "The Pharmacist's Forum," plus a state-by-state list of support groups for young people with PD.

-- The Young Onset Parkinson's Association reaches out to individuals diagnosed with PD at an early age. Their site features multiple forums for sharing stories and questions, including a general message board ("the place to vent, to give advice, to get advice, and ... well basically to talk about anything PD") and "The Pharmacist's Forum," plus a state-by-state list of support groups.

-- For those caring for people with PD, the Family Caregiver Alliance provides a clear overview of the disease for both patients and those taking care of them. It also offers an online library of educational resources for caregivers on topics ranging from improving communication with doctors to organizing important papers and medications.

In the Lab
More details on Parkinson's research projects and experimental PD therapies featured in FRONTLINE's My Father, My Brother, and Me

-- You can find more about the work William Langston is doing at The Parkinson's Institute to understand all the aspects of the disease -- from causes to cures -- here.

-- Want to know more about exercise as a PD therapy? This site has information about the experiments Michael Zigmond is conducting at the University of Pittsburgh. And you can read about University of Maryland researcher Lisa Shulman's work on exercise and PD here. For information on therapeutic dance classes for PD patients, check out these two stories from The Boston Globe and The New York Times. And at this site you can find information about the PD exercise classes John Argue has pioneered in the San Francisco Bay area that are spreading across the country.

-- For more about the possible stem cell treatments mentioned in the program, check out this site that details Harvard scientist Ole Isacson's work with stem cells. There's also summary of Clive Svendsen's stem cell work at the University of Wisconsin here.

-- For further information about the research Matthew Farrer is doing at the Jacksonville Mayo Clinic to understand the genetic forms of PD, visit this site.

Additional Information
More about living with PD, support resources and the search for better treatments

-- The web site of the National Parkinson Foundation -- the largest and oldest PD foundation in the United States -- features a guide to PD resources across the country and an interactive "Discussion Corner."

-- The American Parkinson Disease Association is a grassroots organization funding education about PD, patient support and research.

-- The Parkinson's Action Network is an advocacy group that works to protect PD patient rights and improve funding for research.

-- We Move (Worldwide Education and Awareness for Movement Disorders) provides information and discussion forums for all movement disorders, including PD. Visitors who register can access online classes at We Move's "Virtual University."

posted january 29, 2009

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