Current Project: Volunteering for the Lewy Body Dementia Association

So I got to about 21,000 words (40 single-spaced Word pages) of my new novel (code-named NEW NOVEL) when I hit a wall. I was going at a solid clip of 1,000 to 1,400 words a night at least three or four nights a week. Then I reach a point where I wasn't sure where next to go. I tried one direction then killed it. Tried another and wasn't sure. Reworked it a little and it may work out but I've been busy and lost momentum so I haven't been devoting the time and brainwork to the project like I should.

Which doesn't mean all is lost. I'll get back to it. I'm far enough along that there's no going back. I like what I'm writing, it may be too thinly veiled as far as being autobiographical is concerned, but I can always work in more creative nuances in the second draft. The other reason why I'm not overly concerned is because I've been busy with worthwhile things. One is a fairly meaty freelance project. The other is a volunteering gig.

Loyal readers are aware that my mother died of Lewy body dementia (LBD) 10 years ago, and that last year I wrote a post about her on this blog that found its way onto an LBD Facebook page and the online forum of the Atlanta, Georgia-based Lewy Body Dementia Association (LBDA). Through the kind of instant serendipity that is endemic to social networking on the Internet, I've become tied into a hodgepodge community of LBD-affected folks that include a soprano, a cardiologist-turned-memoirist, a support group leader, and the leadership of the LBDA. Though I didn't expect my blog post to draw me into this network and among the volunteer ranks, this is exactly what's happened. And I'm loving it!

To date, I've completed two projects and have begin sharing ideas I have on branding this insidious disease, which is the second-most common form of dementia after Alzheimer's disease. The gist of my argument is that people's eyes gloss over when they hear "Lewy body." They understand dementia to some extent, but they don't get that LBD is why mom can't figure out how to make soup anymore and why dad can't form an intelligible sentence. It's why their minds and their bodies will give out until they can no longer communicate with others, recognize others or understand what others are saying to them, toilet, care for, or feed themselves. And then they die.

What I'd like to help accomplish is to make LBD and the LBDA mean something clear and compelling, the way MD and MDA (muscular dystrophy and the Muscular Dystrophy Association) do. You think of the latter and you think of smiling kids with crutches, leg braces, and wheelchairs, you think of Jerry Lewis and the telethon, you think about giving. That's what LBD and the LBDA need, and it's all in the branding and what they can do with it. That's an ongoing project that will require a lot more thinking and collaboration.

The projects I've completed are a direct mail brochure targeted at neurologists to raise their awareness of LBD and invite them to download materials about LBD for their practice and their patients from the LBDA website; and an ad that will appear in the program book for the upcoming Pro Football Hall of Fame induction ceremony. The latter opportunity is very interesting. A guy named John Bankert worked his entire professional life (41 years) for one organization: the Pro Football Hall of Fame. He eventually became its executive director. A few years ago, he was diagnosed with LBD and had to retire. In March 2009, he died. So the LBDA negotiated a half-page ad to appear in the program. The message of the ad honors John for his long commitment to the organization, highlights the fact that only a disease as awful as LBD could make him step down from the job that he loved, and inviting readers to donate to a fund in his name.

Judy Carter, a very talented graphic designer and friend, generously agreed to donate her skills to the project. It's one thing to volunteer for an organization and do professional work for them on a pro bono basis; it's another thing to be the friend of someone volunteering and be willing to also waive one's professional fee to support the cause. I and the LBDA are very grateful to Judy for her excellent work.

Future projects will likely include grant writing and organizing (with the soprano) a benefit recital, as well as the branding initiative. Somehow, work doesn't feel like work when it's for a cause you believe in. It becomes invigorating, exciting, and motivational. The very act of helping out the LBDA has given me a newfound curiosity and commitment around this disease that prematurely ended by mother's life. I look forward to helping them until the day when the LBDA is no longer needed.

Until then, with these two projects in the can, I can hopefully get back to the novel.

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.

Coincidences: Lewy Body Dementia and Life

I was once the congregant of the brilliant rabbi Larry Kushner. He taught me...strike that. Not his style. He suggested I consider the possibility that there are no coincidences. That there are reasons beyond rational explanation why things happen the way they do, in terms of timing, effect, or other observable factors. He was introducing to me and to my fellow congregants the notion that God is at work. We didn't have to believe it. We just had to consider it. The interesting thing about this approach, I realize in retrospect, is that in considering the possibility it soon becomes clear that one cannot disprove it. Suddenly belief doesn't seem like such a large leap of faith, and even if doubt remains it does not preclude the possibility. Hold that thought.

Now, faithful readers of this blog (i.e., me and a colleague) will recall a few things I'm about to tie together. My mother died in 1999 after suffering 10 years with Lewy Body Dementia. A post on this blog that found its way onto a Facebook page about LBD brought me serendipitously into contact with the soprano Ilana Davidson, whose mother also died of LBD. In rushing to meet Ilana in New York City in late December, to discuss an idea of staging a benefit recital for LBD originally concocted by Ilana and a woman from an LBD charity in England, I stopped off to buy the book Life in the Balance, by Dr. Thomas Graboys, his memoir of living with Parkinson's disease and LBD. Since that time, I have been in touch via phone and email with Dr. Graboys and Kim Mitchell, executive director of the Lewy Body Dementia Association in Atlanta, whom I plan to meet in February when she comes to Boston on business. Hold these thoughts, too.

In our early correspondence, Ilana and I noted a number of coincidences, none of which I need detail now; suffice to say it involved the popular game of Jewish Geography and details of a performance she will give in Boston in March. These coincidences, despite the teachings of Rabbi Kushner, seemed to me to be little more than a fun device to build rapport and friendship between me and Ilana. Tonight, however, they seem like something quite different.

Tonight I went to see Dr. Graboys in person. He was giving a talk and a book signing at Brookline High School. Earlier this very same day, on Harvard's radio station, WHRB, they began an "orgy" of the music of composer John Zorn. The very first piece they played was "Chimeras", which features the elastic vocals of one Ilana Davidson. What are the chances? And during tonight's talk, Dr. Graboys himself spoke of coincidences, as did his wife. In spite of, or perhaps because of, their unfortunate situation, they believe they found each other for a reason (Graboys met his second wife shortly after his symptoms began to manifest themselves, though he kept his concerns about his condition private from her). The disease is teaching them both things they might not have learned had they been able to enjoy the carefree life they envisioned having together when they got married.

Seeing and hearing Dr. Graboys tonight was very powerful. It occurred to me that this was the first time I had been in the company of someone with my mother's condition since she died. The patience required to wait for the speaker's train of thought to return from derailment, the straining to hear the voice quieted by uncooperative muscles, the bent frame, the blank face, the shaking hands, all were familiar to me yet it had been so long since I had experienced them. Reading his book, written with the help of a friend, it was so easy to receive and process his thoughts; in reality, the work of getting that information on paper was a long and difficult effort. He seems healthier in the book than he is in person.

Of course, I could tell that when he called me in my office one day a couple of weeks ago. How shocked I was to answer the phone and hear, "Hi Jason, this is Tom Graboys." Not least because I was in the middle of writing an email to a local woman who runs a support group for people with LBD and their caregivers. Another coincidence?

Dr. Graboys' talk was very inspiring, and his lessons about staying engaged and being optimistic were important for many of the people in the room, most of whom had a decade or more in age on me. But it was the testimony of his wife that moved me the most. The patience and proactivity required of caregivers is an immense responsibility. I often think that my family and I failed my mother somewhat. We didn't know what to do or how to care for her; we didn't even have a proper diagnosis until near the end. But in retrospect there's more we could have done for her, to keep both her mind and her body more active. Not that it would have changed her outcome, but it may have given her a higher quality of life and a longer time to participate in it.

I remember one Mother's Day, I decided to take her out for brunch and then to a matinee movie. She'd been spending most of her time on the couch and I thought I was being a Good Son to take her out in public. We had a nice meal, bought the movie tickets, and sat down and watched the movie. Afterward, as we were walking into the lobby, my mother said she had to go to the bathroom. So I walked her to the Ladies Room and she walked in. As soon as the door closed behind her, I realized I'd made a tremendous misjudgment. What if she had trouble doing her business? What if she became confused and didn't know where she was? What if she couldn't find her way out, or remember that I was waiting for her? I tried to think what would be a reasonable amount of time to pass before I panicked and asked any stray woman in the vicinity to go in and check on her. Eventually, my mother came out. She had completed the task effectively, and I felt I had dodged a major bullet.

When it was my turn to have Dr. Graboys sign my book tonight, I said, "Hi Dr. Graboys, it's Jason Rubin." There was a pause, and I couldn't tell if he had forgotten who I was or whether he simply couldn't form the words or display an expression of realization. When finally he said, "Thank you for coming out here tonight," I felt the light had gone on again. I didn't want to trouble him further. I knew from my mother's experience that as the night wore on, her energy and competency would fade. I looked at what he wrote in my book and I recognized the small, tight handwriting so typical of people with Parkinson's.

Listening to Dr. Graboys, I know he is an incredibly intelligent, talented, and kind man. But he looks, acts, and sounds like a sick man. And that is how people see him on the street or in the supermarket. Yet he has such an amazing sense of humor and a remarkably positive outlook. He provides a glimpse of how my mother's experience could possibly have been different, just as his book gave me fresh insights into what her experience actually was.

So what does this have to do with the idea of coincidences, or more accurately the idea that there are no coincidences? I don't have that answer yet, although I have been wondering lately how it is that I am more hungry for information on LBD now than I was when my mother had it, and how I managed to get in the middle of a network of people - ranging from a New York soprano to a researcher at Drexel University to nonprofit heads in England and Atlanta to a doctor in Boston - who are seizing on an idea that was an innocent outgrowth of two people talking on Facebook. What forces brought all of us together, that out in the infinite muck of the Internet there has been this snowball effect starting with a simple post about my mother on the anniversary of her death, and now connections are building and energy is increasing and possibilities are growing.

Maybe it's God pushing us together. Maybe it's my mother. Or maybe it's just meant to be. But what is starting to really get me excited is the possibility that the spirit of an unborn soul who one day decades from now will benefit from whatever we might be able to accomplish has had the foresight to set her salvation in motion. It's not something I ever would have believed before. But you know what? I think it's worth considering.

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.