The Dreaded Diagnosis!

I was diagnosed with FTD, fronto temporal lobe dementia, about three years ago.  Just getting the diagnosis was frustrating enough.  I had been having some problems for a while, especially dealing with cash transactions in stores.  Sometimes when I was the one to make a lunch run from our accounting office, I would have trouble remembering the right streets to take to get back.  I finally knew there was definitely something going on when I got lost one morning while driving to work, the same place I had been working for five years, which was a very simple route from my home.

I live in a very small town that borders on a small city in central Pennsylvania.  There are not many doctors to choose from.  I started with my primary care physician who is an extremely caring and knowledgeable doctor.  She agreed there was definitely something going on, and with my family history of Alzheimer's, immediately started me on Aricept and referred me to a local neurologist.  The neurologist strongly suspected Alzheimer's Disease (AD), again because of my family history.  My maternal grandmother died from AD, followed by my mother, then both of her siblings, so  it is a strong family history.  The neurologist sent me to a neuro-psychologist for testing, which turned out to be the same testing used to screen for AD.  I had done this testing years ago as part of an AD research program in Springfield, IL.  The testing was done by a graduate student of nearby Penn State University.  I never met the psychologist.  He did call me and tell me he was reporting to the neurologist that I didn't have any memory problems, so he believed my problem was depression.  Only problem?  I never claimed to have any memory problems!  During my follow-up visit with the neurologist, he agreed with the depression diagnosis, but then added Namenda, another drug  used to treat AD.  Excuse me?  I am only depressed, but you are loading me up on meds for AD?  Something isn't right.

I returned to my family doctor, totally frustrated, and she said, "Cindy, I have seen you depressed, and this is not depression."  So we started to try to find a physician in Pittsburgh, about 2 hours driving distance.  That doctor, a neuro-psychiatrist who co-chairs an Alzheimer's Disease Research Center, agreed to see me as a private patient and ordered a SPECT exam which provided us, finally, with a diagnosis of fronto temporal lobe dementia (FTD).

This blog will be about the progress of my FTD, the difficulty of finding proper care, and the daily frustrations of dealing with the disease, now and as it progresses.  I may bounce around between past frustrations and current daily frustrations, but I will try to not make it confusing.  I will even try to build in some information on FTD since it is often overlooked because all the attention is put on AD which has a higher number of patients.