September 5th – Alzheimer’s Town Hall Meeting

This evening I attended my first Town Hall meeting in Chatham, NJ, sponsored by the Alzheimer’s organization.  The subject of the meeting was to discuss the National Alzheimer’s Project Act (NAPA), a plan to find a cure/treatment for Alzheimer’s by 2050.  NAPA was approved by the senate and House of Representatives in early 2012, but the funding for the act has not yet been appropriated for the 2013 budget.

                                  

Rodney Frelinghuysen, a congressman from New Jersey was the featured speaker.  He’s a senior member of the house Appropriations Committee, responsible for limited levels of federal discretionary spending.  I was one of a handful who spoke.  My first lobbying effort!

My passion is in research, but others in attendance, while sharing this passion, included quality care and awareness, among other things.  New learning for me was in the area of quality care.  Health care professionals need more training to care for Alzheimer’s patients and are often unequipped to deal with a disease that affects people in different ways.  I heard many stories about how loved ones were mistreated and ignored, something I really hadn’t given much thought to, but will be important to me in the future.

While all of these “passions” are important, I would still choose research as my top priority.  I’ve learned so much about the crisis facing all Americans as the cost to tax payers is already close to $200 billion dollars a year and will exceed a TRILLION dollars a year by the time my kids are my age.  Healthcare cannot support this and without it, 15 million families will not be able to afford the care their loved ones will need, and it’s too big a burden for families to take on themselves.

Early Onset Alzheimer’s is almost a different disease than traditional Alzheimer’s.  Progression tends to be much faster, and the burden on families still working and with children at home is too much to handle.
My three minutes focused on Marcia’s symptoms and the progression, which was not too much different from the others who spoke before me.  But I focused on Marcia’s caregivers.  And talking about me was brief.  I work, have two young kids at home and have responsibilities that most people my age have.  But talking about Marcia’s other caregivers got the congressman’s attention. 

Riley, our daughter, is 16 years old, an honors student at Somerville High School, active in fencing and lacrosse.  I told of her taking on grocery shopping, running errands with Marcia and a frantic call to me when she couldn’t find Marcia one morning because I had forgotten to put one of Marcia’s activities on the calendar.

Ryan, our son, is 12 years old and much less knowledgeable about Alzheimer’s.  But he gets frequent stomach aches that we believe is a response to the stress he has with his mom’s condition.

On Friday, I got a call from the Alzheimer’s organization.  I was asked if I would be interested in going to Princeton on September 28 to meet with Congressman Leonard Lance from New Jersey’s 7^th congressional district.  I can’t wait.  And Riley will go with me.  I was encouraged (and volunteered) to go to Washington DC next April and join more than 750 advocates at the Alzheimer's Association Advocacy Forum.  This group annually takes to Capitol Hill to meet with elected officials to ask for their support of Alzheimer's-related legislation.  I feel I have the ability, willingness and the story to make a difference.  I hope to take Riley with me to this as well.