Research

Washington DC

I received a call from a research department at Georgetown University that is studying a treatment for Alzheimer’s.  The hope for the drug is that it will actually change the progression of the disease rather than just improve cognitive function while the pathology of the disease progresses undisturbed.  I told my neurologist several weeks ago that I’d like to be part of such a research project, he informed the people, and a nurse at Georgetown telephoned me.  I’ve read the particular research protocol.  While it’s intense, it’s something I’d very much like to take part in.

The truth is that I only pursued the research possibility because my sisters pushed me into it.  But now I’m very interested in the possibility.  It may be difficult to qualify for and only a few hundred people from around the country will be invited in.  There will actually be four or five interviews and SOME testing to determine eligibility.  One of the tests will be a Positive Emission Tomography (PET) scan that can further confirm my diagnosis and lay to rest any lingering doubts.  My neurologist offered me the test several months ago, but I declined for cost reasons; now it will be part of the protocol.

As a physician I always felt that research protocols were the best way to get detailed care from doctors with sub-specialty interest, and I always recommended them to appropriate patients.  Often, there won’t be any benefit from the medication being studied, but the process itself leads to deeper understanding of the disease, attention to minor symptoms, and a sense that “everything is being done.”  So my previous reluctance doesn’t really make any sense.  Perhaps it was part of an unconscious need to slow down the acclimation process and better integrate Alzheimer’s into my self image.

As scheduled, I spoke to about 40 Georgetown medical students this morning about inner-city poverty.  I was nervous.  I’m very familiar with the basic outline, but I needed to change the introduction.  In rehearsing it before my talk, I realized that I could not speak fluently about something I wasn’t intimately familiar with, so I had almost to memorize the introduction.  It went well.  Speaking with young people is one of my favorite things to do.  The students were attentive, and my presentation was fairly fluent, although my memory for something quite familiar failed me at one point and I had frequent trouble word-finding. 

Afterwards, I spoke with the professor.  She apparently hadn’t noticed anything wrong with the presentation, which relieved me.  I then told her about my Alzheimer’s, and asked whether there was any possibility of breaking into the medical school to share this process with doctors-in-training.  She seemed positive and promised to talk with the relevant professor within a day or two.

I’m all set to announce my diagnosis to the world.  All my previous posts are online both on my website and on my blog.