Friday, February 25, 2011

Winnowing the Web for Parkinson's Disese information? Here are some places to start (updated 5.6.2011)

The Web is a rich source of information and misinformation on Parkinson's Disease. While you can get the latest info by surfing the internet, you are at the mercy of the the information source. How do you assure it is reliable? I know of two attempts to assess Web resources that seem helpful and credible. No matter where you get your PD advice, before making any major change in how you handle your case discuss it with your movement disorders doctor. That said, here are two guides to PD resources on the World Wide Web.

Heather Trotter over at has gone through quite a bit of trouble to seek out and evaluate various PD blogs on the Web, and has come up with a list of her top 49. How do I know she went to a great deal of trouble? Well, she found and read enough of "Off and On" to pick it as one of her favorites. This afforded her instant credibility with me, but you can size up her effort yourself by going here to check her picks.

The second example is the index created by the Parkinson's blogger Bibmomma. If you would like to see a round-up of PD blogs put together and screened by a smart and motivated patient, check out her exhaustive list here.

Where do I go to get my PD information? My doctor is number one, but here are some other resources I find useful. One hard-headed source is Viartis. This a reliable and up-to-the minute place to go. Not always encouraging, but always informative. You can find a link there that will allow you to get email updates when new posts go up. I also have a google alert set up that comes twice a day with a round-up of news from around the Web about PD. This is a source that picks up almost anything PD-related without judging its credibility so I bear that in mind when scanning it. For those that have had DBS or are considering it, I have found the yahoo DBS-discussion group to be invaluable. It is monitored and contributed to by well-informed and savvy people. There is a sign-up there for email versions. I like the digest, which keeps the flow of email manageable. Finally, I have high hopes for Dopadoc, maintained by Dr. Marshall Davidson. This is a new site run with considerable energy and great knowledge of PD lore. Be forewarned: Dr. Davidson is opinionated and not afraid to speak his mind. I do not always agree with him, but he is forthright and stimulating. (full disclosure: Dopadoc has run my stuff recently).

Certainly there are other Web sources of good (and bad) information. These are only the ones that I find most credible and most suited to my needs, standards and tastes. If you, gentle reader have some other source you find irreplaceable, I welcome your posted response.

UPDATE: Dr. Monique Giroux is working with the Northwest Parkinson's Disease Foundation to provide wellness information to Parkinson's patients. This is info on maintaining health and quality of life tailored to PD patients, and it is a trove of good advice. You can find it here.

Sunday, February 20, 2011

Terrific tool to help with your on/off cycle

One of the joys of blogging is coming across a note like this in your inbox:

"I am the sister of a young onset patient, dxd about 15 years ago in her 30's. This past year, she started having real trouble with the on/off cycle. She and I wrote a web app for her to track her meds and her on/off etc... It worked great, her doctors loved it, and she was able to get some really useful interventions out of it.

We want to make it available free to the PD community. It is also an anonymous log in - so no worries about personal information getting into the wrong hands.

I'm hoping you will check it out, and if you find it worthwhile, write a little blurb about it on your blog."

The the site is here

I looked it up and it seems to be just what it purports to be, a nifty tool that people just like the rest of us (only smarter) have put at our disposal to make life a bit more manageable. Thank you Meg, may your ascent to heaven be carpeted with Parkinson's tulips

Sunday, February 6, 2011

A New Off and On Feature: More Good News for Rats

I am breathless with excitement to report a significant breakthrough in the struggle against the scourge of Parkinson's Disease. Some clever scientists managed to slip stem cells up the noses of some of those afflicted with this tenacious and destructive disorder. Stem cells migrated to the brain when put up the nose! Who woulda' thunk it? Hmmmmmm, when you do think of it, what else would you do? Hang around in the nose, or move right along to somewhere a little less full of snot and germs? Thought so. But once again, I digress. Back to the matter at hand.

I wasn't the only excited one. The editors of the Web site of Medical News Today, marked it an Editor's Choice and ran it under the headline "Promising new treatment for Parkinson's Disease" (you can find it right here) The article proclaimed
"Stem cells, delivered intranasally, were found to substantially improve motor function in Parkinson's disease in a study co-authored by William H. Frey II, Ph.D, Director of the Alzheimer's Research Center, part of HealthPartners Research Foundation. Frey collaborated with Lusine Danielyan, MD, of University Hospital of Tubingen in Germany"

But wait, there was more!... the article continued, declaring the researchers "went on to study the therapeutic impact and long-term survival of the stem cells after they reached the brain. Their new study was published today in Rejuvenation Research. Then I got to the paragraph that tempered my wild enthusiasm:

"Using a rat model of Parkinson's disease, the research demonstrated that many of the stem cells delivered intranasally survived for at least six months in the brain; that the stem cells rapidly migrated preferentially to the damaged areas of the brain; and that motor control showed significant improvement."

So break out the Champagne, you furry little rodents, once more it looks like you have the inside track on a possible meaningful advance in the treatment of PD. In rats, anyway. People are another matter. The editors of the Web site should know this, and it would have been nice if they would have made it clearer sooner that they were reporting on an preliminary stage of this interesting research that may, or very well may not, mean much to humans who have PD. But I don't want to spoil the party. Live it up, rats.