journey to a diagnosis

I’d like to discuss how I got to my diagnosis of PCA Alzheimer’s. Getting to a diagnosis was a years-long, multi-doctor, multi-facility, exercise in frustration. I’ve, unfortunately, come to the realization that this is not uncommon.

Around the age of 60 I started with the “selective deafness”. You know the kind. Where my wife asks me to do something and I claim I never heard her ask. What was really happening was that I was forgetting to do what she asked of me. Then she started beating me at board games when I was the board game King. Jeopardy answers didn’t come easily to me anymore.

I have a seizure disorder that has been well controlled for years. I asked my then neurologist about these lapses in memory and he said he didn’t “do that” and he couldn’t help me. On to doctor #2. She said there was no need for concern. Moving on to a neuropsychologist who gave me a battery of tests only to conclude that I was experiencing normal aging.

No doctor/therapist/ neurologist felt it was necessary to perform any tests such as bloodwork, EEG, CAT scan, or lumbar puncture. We did find a doctor who decided to perform several tests but just kept saying, “You’re too young for this memory thing.” Also, in retrospect her interpretation of the tests left much to be desired.

In an effort to get some type of answers to a rapidly declining short term memory, we called a highly recommended neurology program. They never returned our calls.

By this point my wife and I pretty much knew this was not normal aging, and that what I was experiencing was anything but normal. Our suspicions turned to early on-set Alzheimer’s, but we couldn’t find a doctor to guide us.

Finally, we got hooked up with the University of Maryland Medical Center. While scheduling an appointment to see a UMMC neurologist, the scheduler told us that we should schedule an appointment with their seizure specialist. We scheduled with the neurologist, and 2 days later scheduled with the seizure specialist. That’s where we stand now. I’ve been seeing a UMMC neurologist and a UMMC seizure specialist for over a year now. My neurologist ordered a lumbar puncture that concluded I have the proteins consistent with Alzheimer’s.

Upon a routine neurologic exam she noticed some deficiencies in my peripheral vision, so off I went to Wilmer Eye institute at JHU. My eye exam showed my eyes to be perfectly normal, but my vision was clearly not normal. My eyes are fine but my brain isn’t interpreting the signals from my eyes properly. Thus came the diagnosis of posterior cortical atrophy (PCA) Alzheimer’s.

I appreciate that I have been cared for, and cared about, by the staff at the University of Maryland. I have found doctors who listen to me, and who appreciate my intelligence. They are thoughtful and communicative.

Enjoy the article? Be sure to Subscribe to Winter Growth’s The Mindful Blogger to receive a notification when new posts are available!

Winter Growth’s founder dreamed of creating a community where seniors and adults with disabilities could continue to learn and grow – filling their lives with joy and purpose. For over 40 years, we have fulfilled her vision by providing unique, affordable Assisted Living/Memory Care and Adult Medical Day Care tailored to our clients’ individual abilities, interests, and lives.