Tuesday, January 13, 2009

Update: Lewy Body Dementia, the soprano, and me

As reported down below a bit, I met with Ilana Davidson, a professional soprano and Yankees fan who nonetheless has something in common with me: both our mothers suffered and died from Lewy Body Dementia (LBD). We met online, on Facebook, after she had read a post I'd written about my mother. Then she contacted someone from the UK-based Lewy Body Society with the idea of doing a benefit recital. She solicited my help, we talked over some ideas over "guilt food" (we weren't hungry but felt compelled to order something other than tea) (it was humus and fruit) at a brunch place on the Upper West Side.

En route to the rendezvous, I stopped in at Barnes & Noble and bought a book that I'd been meaning to read for several months: Life in the Balance, a memoir by Dr. Thomas Graboys. A noted Boston cardiologist, Dr. Graboys was forced to give up practicing medicine after he was diagnosed with Parkinson's disease and LBD. I showed the book to Ilana, who hadn't heard of it. I took it home and read it in about a week. His courageous and immeasurably valuable testimony about what he is experiencing - and fighting - makes for an extraordinary read. For me, personally, I treasure the book because he is able to articulate what my mother could not, and so I now have a better understanding of what my mother endured behind her stone-faced silence.

Meeting Ilana was wonderful on many levels. I had heard her audio clips on her website, so I knew she was a real talent (not that I know opera well enough to judge, but she has the resume, recordings, and reviews any professional artist would covet). We obviously shared this unfortunate bond and it was helpful to know that my own experience was not unusual. Further, we simply seem to click and our rapport was easy and enjoyable.

We talked about a number of ideas, some of which might not be prudent to mention here since the people we'd like to involve don't yet know about it (not that Al Pacino reads my blog, I don't think. Oops!). But I do think it would be very moving and healing to solicit stories from patients and families, edit them down to concise and cogent excerpts, and have a number of celebrities read them in between musical pieces.

I would also want to include excerpts from Dr. Graboys' book, and emailed to ask for his input. I was thrilled, therefore, when just before leaving work this afternoon my phone range and the voice on the other end said, "Hello Jason, this is Tom Graboys." I was stunned, so much so that all I could do was blurt out, "Wow!"

Dr. Graboys was "ecstatic" to learn of our ideas and happy to assist. He is still active, and in fact is doing a reading and book signing in Brookline on January 29, an event for which I am already registered. I look forward to meeting him in person. In addition, I have had contact (and become Facebook friends) with someone from the Lewy Body Dementia Association in Atlanta, Georgia. They are hot for the idea as well. And I've communicated with someone here in Boston who runs a support group for family members of LBD patients.

With all this swirl of community building, I should be very excited but there's one thing that hasn't fallen into place yet. Our contact at the Lewy Body Society has grown strangely silent. She hasn't returned two emails and I'd like to get her input so we can formalize and finalize our plans, begin to work up some proposals, and start going after some funders, talent, and venues.

As I explained to Dr. Graboys on the phone today, it's not like I've long been a champion or advocate on behalf of LBD patients, but it's occurred to me that 10 years after my mother died, I still get blank stares from people when they ask what my mother died from. Ten years later, LBD is still largely unknown by the general public, likely still underdiagnosed by clinicians, and definitely undertreated. And yet by several reports I've read, it's the third most-common form of dementia.

It's time to do something about this. And if there's a role for me to play, then it's a project I happily add to my pile and give top priority to.


Kim Mitchell said...

Hi Jason! I just read your comment from last night about your concert idea. Wow! That sounds so exciting!

I am the CEO of the Lewy Body Dementia Association, and I know exactly what you mean when you talk about the blank stares you get when you mention "Lewy body dementia." We have programs to educate physicians and the general public and to create awareness about the disease, but so much more is needed.

Sometimes I/we feel like a minnow swimming in the ocean! LBD affects at least 1.5 million people, and that is not counting the millions of caregivers and family members whose lives are also greatly impacted. Yet, it seems that only those who have been tragically affected know about it. If we could get on the other side of the awareness curve, we could do significantly more to support caregivers, educate people, promote research, and finally bring this disease out into the light!

I would love to talk with you about your ideas. (You did say Al Pacino, didn't you? Oops!) Would you be open to either e-mailing your number to me (lbda@lbda.org) with a good time to call or calling me at 404-935-6444, ext. 1? I hope to hear from you soon, Jason!

Kim Mitchell

Pam said...

I'm interested at least in providing a story, though my husband is only in the early stages. I've linked my blog, you can email me at pam55sc at google.

David Thomas said...

Hi Jason........I am glad that you've become involved with the LBDA. As a writer, you have certains skills above and beyond most of us who are not professional writers. Your writings can only help to educate others and to promote more research in LBD.

Thanks.....David Thomas MD