While you’re reading take a moment to read this year’s winning essay “Disappearing Act.”  It’s also about a mother/daughter relationship through Alzheimer’s.  The piece is beautifully written and definitely resonates with me.  What I love about the fact that the Quarterly chose two Alzheimer’s essays in this year’s contest, is the tipping of the scales. 

The stories we tell shape our understanding.  As we dive into the personal and universal tale of grief and loss and learning to find the hidden moments of happiness, perspectives shift.  It’s through sharing our stories that we teach, heal, and hopefully pave a smoother path for those who come behind us.  For far too long stories about Alzheimer’s have been tucked away in family albums, but that trend is changing and with it, we are too.

You can help by writing Congress now and telling them it’s time to action on this mounting public health threat.  Ask your members of Congress to:

1.  To pass the Alzheimer’s Breakthrough Act which will authorize $2 billion in research to Alzheimer’s Disease.

2.  To pass the Alzheimer’s Detection, Diagnosis, Care, and Planning Act which will help families get an early diagnosis and better care.

3.  To pass the National Alzheimer’s Project Act which will create a strategic federal plan to deal with the Alzheimer’s threat.

The experience of being in the Capitol with hundreds of Alzheimer’s advocates from all across the country is energizing and a sign that momentum is on our side.  But, for me the most moving part of the trip is the candlelight vigil on the steps of the Lincoln Memorial.  Seeing the light from hundreds of candles reflecting in the water and taking a moment to honor the memory of my mother and millions of others like her who’ve succumbed to Alzheimer’s encapsulates the mission and spills into the rest of the events. 

For those who can’t travel to Washington, you can light a virtual candle and be part of the experience online.  Click here to visit the Virtual Candlelight Rally and light a candle in honor of a loved one or share a message of hope.  I’ll be sure to document the experience and post pics when I return, but in the meantime I’m going to get myself in the spirit and light a candle now.

On top of the fact that I could completely relate to Max’s story, both he and Emily have an infectious enthusiasm for life and the cause.  We were all inspired by their mission and energy, especially Luke who enjoyed having them as roommates for a couple days and now wants to go on a bike tour.

Since their return home, Max and Emily having been editing hours of film they shot on the road.  They’ve also submitted a short film to the Neuro Film Fest titled, “The Music in Hugh:  A Look at Young Onset Dementia.” Click here to watch the film and vote in the YouTube “Fan Favorite” contest.  I just cast my vote and will stayed tuned to see what they do next.

After having time to grieve her loss, I decided something was not right with the system.  How could it be that my parents who worked as educators, planned, saved, and did everything right we’re completely shut out of services simply because my mother had the unfortunate luck of getting Alzheimer’s before her 65th birthday?  Through my involvement with the Alzheimer’s Association I learned there were tens of thousands of people in the same situation.  I attended my first Public Policy Forum specifically to testify about ending the two-year wait period for people with Alzheimer’s under the age of 65.  From there I learned about so many other policy issues that impact the Alzheimer’s cause. 

When I clicked open my email bright and early this morning, news of the biggest policy win in the history of the Alzheimer’s Association greeted me.  The Social Security Administration has added Young Onset to its Compassionate Alliance Program which means those with young onset with expedited through the system.  You can read more about it here.   This is a historic day for the cause and I’m glad to say I was a small part of it.

The Alzheimer’s Association has seen a 25% increase in calls to the 24/7 Helpline (800-272-3900) from December 2009 through January 2010.  At our office in Portland, there’s been a steady stream of family caregivers coming in the doors for support groups, classes, care consultations and to browse our lending library.  It’s wonderful to witness people connecting with our programs and services but overwhelming to see how great the need is.

Watching the weathered, anxious faces of caregivers also takes me back to the days of trying to juggle a newborn and help out in caring for my mom.  I’m sure the sleep deprivation didn’t help, but there were days that it took every ounce of energy I had to hold it together.  And, I was NOT her primary caregiver.  That duty went to my father who was working full time in order to cover the cost of medical care.  In hindsight, I wish we would have tapped into more services but at the time (like most caregivers) we were just trying to get by.  So, to any blog readers out there who are also caregivers please visit www.alz.org, call the Helpline and take care of you too!

Yesterday was a banner day and started with this feature on the front page of the Oregonian, touting the benefits of exercise as a preventative measure in the fight against Alzheimer’s.  Then our local CBS affiliate featured a story on participants of our early stage program which tied in to Katie Couric’s feature Where American Stands on Alzheimer’s Disease.  Finally, as I tuned in to American Idol (I know it’s a guilty pleasure) they covered a touching story about Katie Steven’s, a young Idol-hopeful whose grandmother has Alzheimer’s.  The interaction between Katie and her grandmother were lovely and even Ryan Seacrest teared up when Katie called her grandmother to let her know she was headed to California.  MTV is calling her one to watch.  Not to worry, I’m already on it and I’ll be watching for more Alzheimer’s coverage this year–helping to change public opinion one story at a time.

The condensed version is that while it’s  know throughout the scientific community that glutamate plays a role in diseases like Alzheimer’s, no one previously understood the complexity of its structure.  Mapping the structure is step one in gaining a better understanding of Alzheimer’s and potentially creating new therapies.  This is also an example of the kind of research that NIH funding allows scientists to perform and why it’s so imperative that we support encourage our Congressional leaders to back the Alzheimer’s Breakthrough Act.  While there’s still a long way to go in understanding Alzheimer’s, it’s exciting to see innovative research like this happening right here.

But, back to hoops…I’ve been a college b-ball fan since the fourth grade when my dad started taking me to the Far West Classic, a three day tournament hosted here in Portland.  We’d purchase peanuts, red licorice ropes and cheer on obscure teams with Cinderella dreams. My dad would critque the referees and my mom would keep meticulous track of the score with a half pencil.  The tournament long-ago ran out of funds, but my love of the game has remained steady. 

That’s why I’m thrilled that  the University of Portland is teaming up with the Alzheimer’s Association-Oregon Chapter to host Dunk Alzheimer’s next Saturday, November 7th at 7:00pm as the Pilots take on the Linfield Wildcats.  Click here for more information about the event or to purchase tickets, which are a mere $5 bucks with the code “DUNK.”  I’ll be eager to introduce Luke to college hoops, the smell of a freshly polished court and buttered popcorn, frenzied fans, and for the most part spirited players who truly love the game since they’ve yet to be tainted with big signing bonuses and multi-million dollar salaries.  Hopefully the event will morph into a new family basketball tradition.