I'm Afraid It's Parkinson's Disease. Psyche!

Once again the enigmatic oracle Viartis has emerged from the mists of the Web with disturbing Parkinson's news, this time about misdiagnosis. Citing a finding that "Initial diagnoses of Parkinson's Disease made by general neurologists were only infrequently changed, yet were incorrect in 24% to 35% of cases". The Viartis item goes on to report that "This means that many people have been treated for Parkinson's Disease for the rest of their lives without ever having had Parkinson's Disease. In people taking Parkinson's Disease drugs, Parkinsonism was confirmed in only 74% of cases and only 53% of them had probable Parkinson's Disease". You can find the article with links to supporting material here.

What else could your disorder be? Benign essential tremor, Wilson's Disease, perhaps a brain tumor. These conditions call for radically different approaches than PD. If a general practice neurologist comes up with the wrong diagnosis up to 35% of the time how do you think people outside the neurology field are doing with their diagnosis accuracy? What's a potential Parkie to do?

This is why it is useful to either get your diagnosis or a second opinion from a movement disorders specialist. Your chances of a correct diagnosis are best with a specialist with extensive training and practical experience in the area, hence the value of the neurological sub-specialty of movement disorders. Unfortunately, even with this training it can be tough to sort the differences in types of Parkinsonism.

So we find yet another question underneath the surface here, which could be phrased this way: "Aughhhhhhh! You always tell me that I need to trust my doctor, then you tell me that I can't trust my doctor? What's the point? I hate you! I hate you!" The point is that you have to be involved in your care. You must seek out the most high-quality information you can find from a variety of trustworthy sources, then listen to your own body to confirm that whatever they tell you squares with what you are experiencing as a patient. In a perfect world we wouldn't have to ask these questions. In our imperfect one we must answer them the best we can.

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 healthcaretechnicians.org 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.