Sunday, February 16, 2014

Drinking From the Fire Hose, Where is There Good Parkinson’s Information?

With Parkinson's Disease we still lack essential knowledge. But there is no shortage of raw information. It comes in a cascade of books, a tsunami of Web sites, an ocean of blogs, a river of leaflets,  and even comics. Where to start?

Here's a wacky, way out proposal: lets ignore books. Sure, go ahead and read them if you find a certain person's story compelling or inspiring.  But all the information available to make our lives better lives in many forms on the Web, and in humans around us. Let's take a look.

Web Sites of National Parkinson's groups...
I: National PD groups all have countless pamphlets that you can order, download or read online. Everything from explainers on medication to advice about exercise. Try  or The Michael J Fox Foundation has a well-organized section devoted to understanding Parkinson’s. Often National orgs will have a helpline that you may call with your questions, and get answers from staff familiar with Parkinson's and its treatment.

...And a Dandy Regional Organization
 The Northwest Parkinson’s Disease Foundation has a weekly news roundup, usually about 5 articles that they select to feature. My sense is that the person doing the selecting is doing a better job of finding interesting and pertinent material lately.  You can sign up for these emails here. (Full disclosure: I do a monthly blog for The NWPF. It will appear when they debut their Web site redesign.)

The Parkinson's Disease Oracle
 I have come to think of  Viartis Parkinson's Disease News  as The PD Oracle. This is how they describe themselves: 
 “Viartis are independent and entirely self-funded medical researchers specializing in Parkinson’s Disease based in London, England. Viartis is not part of any other company, university or organization, and have no religious or political affiliations. Articles are chosen solely on the basis of their medical significance or potential interest. The overwhelming priority is the facts, regardless of whether or not they contradict prevailing views or vested interests. Analysis of articles is provided either to explain the background or implications of new information, or to balance misleading claims.”
 My impression is that, when it comes to content, this is pretty accurate. To get email alerts when new items appear, send an email with the message “Subscribe” to . No form of identity is required.

A savvy Email Discussion List
 Anyone with an interest in Deep Brain Stimulation surgery should sign up for the Yahoo DBS discussion group. It’s an interchange via email among people who have had the operation, their care partners,  and occasional cameo appearances by nurses and neurologists who work in the field. It is well moderated and informative. To sign up, go here and press the purple  + join group button.

A Bevy of Blogs
Blogs are people’s online journals about, in our case,  dealing with PD. There are tons of them. Among those that are consistently mentioned as high-quality are “Shake Rattle and Roll,” by Kate Kelsall, “Walking my Path With Parkinson’s” by Mariane, and “Studio Foxhoven” by Teri Reinhart. One that seems to get mentioned less, but is well-written and informative is John Schiappi’s “Aging, Parkinson’s and Me”. Finally, PD Plus Me looks at the difficulties of living with "Parkinson's Plus" disorders.

An Easy-To-Use Web Tool
You can sign up to have Google search the Web for news about PD or anything else you are interested in and periodically return you the news as an email Google Alert. To create a custom Google Alert, go here. A form should come up that lists search query, where you type in the subject you are after,  followed by a short list of preferences concerning what you want to know and how you would like it delivered. Then press “Create alert” and you’re in business.

Finally, there are human resources. Obviously qualified Neurologists are great sources of Parkinson's information. Support groups abound with street-level PD expertise and sometimes sophisticated, esoteric PD knowledge as well. Group members have concrete experience with the disease that can be an invaluable source of shared wisdom. But  use common sense in giving and taking advice. Each of us is at a particular point in our progression, and each of us has our own constellation of symptoms, sensitivities to medication etc. Also the placebo effect can be strong in Parkinson’s disease, even confusing research professionals. Take fad cure-alls with an enormous grain of salt. Demand citations of legitimate studies, and remember that PD is complex and has resisted every silver bullet that has been found or claimed.

This is by no means an exhaustive or even authoritative list of resources. Did I miss something? I guarantee it. Additions, disputations etc. are welcome. The comment button awaits! 


Patient-Online said...

Peter, Thank you for the really well-written roundup of the online sites and various resources available to help those facing the challenges of P.D. You are a huge support to me and so many others. Thanks for your friendship! -- Dan

Peter Dunlap-Shohl said...

Dan, thank you, you are always so generous with your comments. It is especially meaningful when it comes from a person who must budget time and energy with care.

Roll on, buddy.