Words of appreciation!

We are writing to express our sincerest thanks for supporting Denis’s recent “Walking With Nathaniel” pilgrimage to raise awareness about BDD and to provide essential funding for research into this devastating disorder. The International OCD Foundation (IOCDF) has given us the list to date of names and addresses of those who have sent in contributions. We are overwhelmed by the response and profoundly grateful for your participation.

The vital statistics are in:

• Denis walked 552 miles (1,110,000 steps according to one friend with a pedometer);
• 62 supporters, family members, and friends joined the walk at various points;
• 25 friends and family provided Denis meals and/or a place to spend the night;
• Denis met with 145 professionals at clinics and hospitals and talked with over 250 people while walking; 267 people signed his pilgrim’s passport;
• 182 people and groups contributed a total of $25,685 — $9,800 earmarked for education/awareness; $15,785 for research.

After the walk, our journey took us to Chicago in July for the annual OCD conference, a first for us. All three of us were able to attend sessions on genetics, research, BDD awareness, and other topics. To be in attendance with 1,000 other participants, all of whom have a connection with BDD or OCD as therapists, sufferers, or family members, felt immediately comforting, as we were immersed in a world where no one needed an explanation of our son’s crushing burden. Everyone knew, everyone cared, and everyone wants to help alleviate this suffering.

Genetics research into OCD and related disorders is making some headway, revealing that many genes are at play.  New brain imaging techniques have shown that those with BDD process facial images on the left side of the brain, not the right side like most of us. We don’t know yet how these findings will translate into more effective treatment, but the research is an encouraging start. In its next review of proposals in January 2013, the Foundation has made a revitalized commitment to fund research specifically for BDD. A new website dedicated to BDD and embedded within the IOCDF webpage will also be launched shortly.

We have already begun conversations with the Foundation about a walk in October 2013, this time involving many families in many cities. Stay tuned! We have heard from people throughout the country, and even a few from abroad, so we are encouraged that word is getting out, and that no family needs to suffer alone.

Thanks again for honoring Nathaniel’s enduring spirit and the gifts he gave to those who knew him. It has made a huge difference to us, and will help others in ways that we cannot even predict.

More News!

After returning home from the amazing International IOCD Foundation Conference in Chicago (more on that later), we were pleased to see that The Philadephia Inquirer had run this piece written by Judy in today’s paper.

Post Camino Blog 1

Today I go out the front door of my Cheyney home once again to walk. How I miss it! Although temperatures are already in the low 90s, the road beckons and the body responds. My feet quickly recognize the pattern of putting one foot in front of the other as a way to move forward. I have walked on other days since the rally in Christopher Columbus Park in Boston on June 7^th, but today’s walk feels different, and I’m not quite sure why. Perhaps my body is saying that if I want greater clarity about what’s next in my life, then I have to hit the road to discover the answer.

Today’s path is an old favorite from my winter-training days. I go out Creek Road, turn right at Locksley, and head to the tiny village of Thornton by a circuitous route. Judy’s at Barefoot Yoga for class and I’ll meet her there 90 minutes from now, just enough time for the route. I don’t rely on the GPS, as my feet already know the way. One hundred steps down the road and it all comes back: the sense of purposefulness, the great outdoors, the fresh air, the hard exercise, and the inner voice that says that all will be right even when much is unknown.

So what about the Finish Line in Boston? Did I notice how the tape resisted my passing through it? I sure did. Interesting! Thankfully Judy and Carrie held it tightly. It took some doing, yet that breakthrough had anything but a sense of finality to it. OK, OK, I get it…it’s the beginning line, not the finish line. The beginning of what exactly? Walking with Nathaniel 2? Like Hollywood film favorites, sequels often lack what make the originals successful: imagination and creativity. They dwell too much on what worked in the past and ignore new possibilities. I’ll keep that in mind.

Thornton looms in the distance, and I still haven’t got the answer to my vocational question—what is calling out to me now? BDD advocacy work? I do know that the answer isn’t going to pop up in the half mile that remains before I reach today’s destination. The annual OCD Conference is in Chicago at the end of July. Judy and I (and maybe Carrie, too) will attend. Perhaps something more concrete will emerge by then. I’m reminded of the glass snowball ornament my Grandma Bilodeau had in her upstairs bathroom. Whenever I visited her, I would run to the bathroom, whether I needed to go or not. Once there, I grabbed the snowball, shook it, then watched the flakes come falling down, furiously at first, then more gently. Even when I thought the flakes had finished falling, there were always several more that came down. And then a few more still. That’s what happening now in my Post-Camino-de-Nathaniel life—the impact of the walk is slowly settling, one flake at a time. Maybe eventually clarity will happen.

I now see Judy in the near distance standing by the car. Before I get to her, let me share some good news. We just learned that the walk has already brought in $25,000. I had hoped to break the $24,000 mark, and voilà! And the best news of all: people are talking about BDD in the various arenas of their lives, as sufferers, as parents, as spouses, friends, caregivers, etc. The butterfly effect is growing. That makes me happiest of all, because we have cracked open the door of this closeted disorder. Check out the more than 100 entries under the “Contact” tab on the website and some new press articles. Word is getting out and new connections are being forged.

The Impact of the Walk Continues

A friend and former colleague of Judy’s, Brennan Barnard, wrote a beautiful reflection on his time walking with me in early June towards the end of the walk. It appeared in the New  Hampshire  Concord Monitor on Father’s Day, appropriately. Thanks, Brennan!

Judy joins me now on my on-going daily walks. It is hard to stop. Once a walker, always a walker!

Resources

Many people have contacted us during and after the walk to ask how they can get help for their own struggles with BDD, or for a family member. Below are the places we have found in our search for support. There are many others. Be sure to ask any treatment center you are considering if their staff has experience specifically with BDD.

We are envisioning a day when a young person first diagnosed with BDD has a support group available for themselves, their parents, and their siblings, just as there exist programs now to support children with cancer and their families. Both diseases have a profound impact on families.  Both can be fatal.

Treatment Centers

BDD Clinic and Research Unit, Boston, MA

BDD and Body Image Clinic, Los Angeles, CA

Bio Behavioral Institute, Long Island, New York

OCD Institute, McLean Hospital, Boston

AATC – The Anxiety and Agoraphobia Treatment Center, Bala Cynwyd PA

Books on BDD and OCD

Body Dysmporphic Disorder: an Essential Guide, by Katherine Phillips. M.D. (2009) — the updated version of her seminal book, The Broken Mirror (1986)

Feeling Good About the Way You Look, by Sabine Wilhelm, PH.D.

The BDD Workbook, by James Claiborn, PH.D. and Cherry Pedrick, R.N.

The Adonis Complex: The Secret Crisis of Male Body Obsession, (2000) by Harrison Pope, M.D., Katharine Phillips M.D., Roberto Olivardia, PH.D.

Obsessive Compulsive Disorder: New Help for the Family, (2004) Herbert Gravitz

Books on the brain we found helpful

Mindsight, the New Science of Personal Transformation, by Daniel Siegel, M.D. (segments on OCD)

The Brain that Changes Itself, by Norman Doidge, M.D. (chapter on current treatment of phantom limb pain)