Joined: Fri Dec 31, 2010 3:07 pm
Our annual visit with Dr. Boeve at Mayo, Rochester
I mentioned to Dr. Brad Boeve how surprised I was to learn how low the accuracy rate of diagnosing DLB is. He is surprised, too. He says in the Mayo studies the accuracy rate when RBD is also present is higher than 90%. He speculated that perhaps many clinicians do not apply the diagnostic criteria rigorously enough. For example, "fluctuation" means a dramatic and obvious change; if you have to think about it and respond, "well, yes, I think it is worse sometimes than others," that isn't sufficient to qualify. In a way he sees it as progress that DLB is sometimes diagnosed on insuffcient evidence -- at least it means more doctors are aware of the condition now. It is clearly a frustration of his that so many doctors seem to have never heard of DLB, even among those recently edcuated.
He mentioned his great admiration for the sleep specialist and researcher Carlos Schenck, and wasn't looking forward to the day Dr. Schenck may retire. That made me think of many of the pictures I've seen of researchers prominent in this field. I sure hope there is a wave of younger researchers backing them up! (Dr. Boeve is nowhere near retirement age, but probably many of his mentors would be.)
He was pleased that federal funding was not cut as drastically as some feared it might be. But he was especially enthusiastic about the Michael J Fox Foundation, because it is not as conservative as government funding, and it is willing to take financial risks on theories that would have dramatic impact if they succeed. Virtually everything this foundation funds would be of benefit to the DLB community, too.
He is very optimistic that science will unlock the keys to these degenerative diseases -- the question is not "if" but "how soon."
Go, researchers, go!
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012