Tuesday, June 7, 2011 Report from Toronto: Kudos to These Docs
Diane and I had a good laugh this afternoon, our second day of attending the 15th International Congress on Parkinson's Disease and Movement Disorders in Toronto, Canada. Out of 3000 attendees so far we have only seen one other person who actually has PD or another movement disorder. We’re both the subjects of this conference and the odd women out.
But what a privilege to be here, eavesdropping on the very medical professionals who hold our health and our quality of life in their hands.
This conference is educational in focus. Neurologists who specialize in movement disorders come from around the world to get continuing medical education credits, which are required by their medical associations and others. Diane and I are also here to learn -- to better understand our disease.
My number 1 take-away from today has to do with a common frustration among PD patients – getting an accurate diagnosis and appropriate treatment in the crucial first few years after symptoms begin to emerge. This afternoon Drs. Tarsy and Agid from Boston and Paris respectively presented videos and information on 12 patient cases. Most looked to me like they had PD, when, in fact, they had something worse, or better, or they had PD plus something else. The differences in symptoms were usually subtle and a room full of neurologists had trouble identifying exactly what a particular patient had. The session could have been called "Stump the Neurologist."
This fuzziness, of course, makes it easy to prescribe an incorrect regimen which, at best, can result in ineffective treatment and, at worst, can make the patient decline. One example was a woman who seemed to have a classic PD, underwent DBS, and died because she actually had a condition called MSA and not Parkinson’s. And MSA and DBS are a lethal combination. Another example was a man who was diagnosed with early onset PD, progressed over many years to the point he was frozen, speechless, and near death. Then his doctor discovered that he actually had a B vitamin deficiency. Today the patient is normal.
In this session I gained an appreciation for how hard the diagnosing process is and how risky an innocent error can be. Caution can be warranted. Dr. Tarsy started off the session with this comment. “We’re not bad doctors but sometimes we make horrible mistakes.” Wel,l kudos to him and his colleague for being so candid and sharing these real-life medical dramas so that a room full of neurologists learned how to avoid making similar errors.
Betsy
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