Thursday, March 12, 2009

Night and Day with a Soprano: Tales of Ben and Lewy

The soprano Ilana Davidson performed at Boston's Symphony Hall last night with Benjamin Zander conducting the Boston Philharmonic Orchestra in Mahler's Symphony No. 2. Sharing the overwhelmed stage with another soloist, the mezzo-soprano Susan Platts; two choirs; and either 115 or 150 musicians (I couldn't hear clearly which), Ilana had to wait for at least 75 or 80 minutes of the 90-minute work before she rose and expertly sung her part in the sprawling final movement. Yet I waited far longer, because it had been months since I found out that this talented singer and I had something rather important in common: both our mothers died from Lewy Body Dementia (LBD), and we shared that awful sense that somehow our mothers suffered more than they had to. If only we, our families, and our doctors known more about the disease...the end result would have been the same, but the journey to that end might have been somewhat happier, more bearable, more dignified.

To recap, as I've done before, an early blog post of mine about my mother was posted in a forum at the Lewy Body Dementia Association (LBDA) website by someone out there in the blogosphere who came upon my blog and felt it had some value. Shortly thereafter, I joined the Lewy Body Society page on Facebook and posted the same item there. That's where Ilana found the piece. Then she wrote to me, we shared our stories, and became Facebook friends. She also had contacted the UK-based Lewy Body Society and the idea of holding a benefit recital came about.

At this point, Ilana brought me into the conversation and we met in New York last December to do some brainstorming. Then the Lewy Body Society dropped out of the picture, and the LBDA entered. I'm in Boston, Ilana's in New York, and the LBDA, headed by Kim Mitchell, is in Atlanta. We decided that the three of us should get together to see how we could help to make a difference in raising awareness and money for this terrible affliction. Ilana's performance schedule provided the time and place; she would perform in Boston on March 11, and we would meet at her hotel on March 12. And so we did.

Still reeling from the sheer power and beauty of the gargantuan performance the night before, I walked 20 minutes from my office to the hotel this morning. I arrived before Kim, which gave me and Ilana an opportunity to share our varied perspectives on the evening. The concert had been but one part of a gala evening celebrating the orchestra's 30th birthday and Zander's 70th. Just prior to the performance, there was a brief ceremony on stage during which New England Conservatory bestowed upon Zander an honorary doctorate. The commencement address would be delivered through the maestro's baton, and it was a lesson I will never forget.

Ilana was pleased with the performance, it seemed to me, and also happy to see me and meet Kim. Though we have only met twice, we have maintained a lively correspondence on email and through Facebook, we have shared difficult stories and memories of our mothers' illnesses, she has sent me copies of her CDs and I sent her some old recordings of my grandfather, which are highly valued within my family but little heard outside it, and it was nice to hear her enthusiasm for his talent. In short, while there is a fairly low barrier to entry to be someone's Facebook friend, we are also scaling the real-world wall where two people so interested may find themselves at the top and together push the barrier into the ground in an act and state of true friendship.

It helps that I like her dog and she thinks my toddler is cute. We are, however, choosing to leave the Red Sox/Yankees thing alone for the time being.

When Kim arrived at the hotel we went up to Ilana's room and while her dog alternately happily ignored us and insistently demanded attention, Kim gave us an eye-opening overview of the LBD world and the LBDA's place in it. The challenges are staggering. The FDA doesn't even recognize it as a discrete disease and therefore no drugs can legally be approved as being indicated for it. Doctors don't know how to diagnosis it and so it frequently goes under-reported or misdiagnosed. It shares a common pathological profile with Parkinson's disease, yet has a far lower public profile, so attracting funds is difficult.

The late Estelle Getty of TV's The Golden Girls is one of the very few "names" known to have LBD, and no offense to her fans but she's no Michael J. Fox. She's also not alive anymore, so she can't testify before Congress or call her well-connected friends to make big donations. Occasionally, it's revealed that some bigwig has dementia, but there are a lot of forms of dementia. It's easier to report about Alzheimer's because it's a known entity. The owner of the San Diego Chargers reported last December that he has "dementia" but it's never been identified which kind he has.

So raising awareness among the medical community and the general public is an important goal. Another is to provide a means for siloed researchers in this area to share information with each other. An immediate need is to support the caregiver community, as LBD patients require extensive care, which often falls on the family, which soon becomes burdened with the exhaustion, uncertainly, and financial burden that chronic illness imposes.

Where do we go from here? More brainstorming, fact-finding, and searching for the right person who has interest, money, and friends with both. At the outset, we are taking a long-term approach, building our capabilities slowly, hopefully growing in scale and sophistication each year, until we are able to make a significant impact in the ongoing fight to learn more about LBD and eventually find either a cure or a treatment that can effectively keep it under control.

Job One, though, is to spread the word about LBD. To learn more, check out the LBDA.

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