Early Onset Alzheimer's

Millions of Americans are living with Alzheimer's disease.  For the most part, we think of this as an old persons disease.  But now it is clear that about 5% of those diagnosed are people in their 30s, 40s, and 50s.  When that happens, they have a form of the disease called Early-Onset Alzheimer's. 

The numbers of individuals with this diagnosis is climbing to staggering numbers as further research and medical attention is given to this disease that causes progressive degeneration of brain cells.  In particular it impacts the area of the brain that processes memories and decision making and thought processes as well.  The progression of this disease clearly varies tremendously among individuals.  For many the early onset is inherited but for others there is no clear indication of what triggers this cognitive degeneration. 

I am not a research scientist, medical doctor or an expert at describing Alzheimer's but I am an advocate to give a voice to those individuals who receive this diagnosis at the prime of their life. In April or May of 2009, I attended the National Action Summit in Washington, DC.  I had the opportunity to visit various politicians and present them with a "blank sheet of paper" -- it was the list of survivors for this disease.  With fellow advocates, we presented our needs for future funding to address the research and resources needed to help individuals and families.  We used the examples of how funding for AIDS and breast cancer had made remarkable progress (that would not have been possible without federal support and funding).  And we made certain the clearly understood this is not just "an old people's disease".  We marched, we rallied, we visited, and we presented our case.  Most importantly, we gave a voice to those who are in great need. 

I left DC educated to better understand what must be addressed at the family, community, state and national level.  I left knowing there was much to be done. 

After Denny's passing, fall 2011, I applied and interviewed to be an Ambassador for Alzheimer's.  That is a community activist who works tirelessly to educate and solicit funding needed at all levels. What I realized about myself was that my interests are not with fundraising and large events but more with bringing knowledge and support to families who are living with this challenge daily. 

My advocacy is to speak with caregivers and listen to their concerns, fears and personal needs. But above all, I hope to share information about what I learned along the way (in the blind) about keeping my husband home with me and safe.  Far too soon doctors were recommending placement in a dementia care facility.  I was striving to give quality of life, dignity, love and support to my spiritual partner and loving husband in the comfort of our home.