February 25, 2024 - The aforementioned article was written in October 2023, merely a month after Anthony received his official diagnosis. Much has transpired over these past few months, to say the least. Anthony was approved for leqembi infusions and commenced his initial infusion on December 21, 2023, completing his fifth infusion on February 15, 2024. Following every fourth infusion, Anthony undergoes a scheduled MRI to monitor for potential brain bleeding, a known side effect of leqembi. Fortunately, his initial MRI results were satisfactory.

What astounds me is the span of time between his unofficial diagnosis in August 2023 and the initiation of the first leqembi infusion, which amounted to five months. Within this timeframe, Anthony's condition progressed significantly. New symptoms emerged, including heightened language barriers, increased short-term memory loss, misplacing items, experiencing extreme anxiety and stress over scheduling changes or appointments, and more. 

Reflecting on this timeline, I can't help but feel deeply upset that his diagnosis and treatment plan weren't expedited to allow him to benefit from leqembi treatment sooner. The entire process moves agonizingly slow for someone grappling with dementia.

“You never know how strong you are until being strong is your only choice.” Bob Marley

My husband of 15 years was diagnosed with Alzheimer's disease at the age of 55. I always imagined we would eventually retire, to be able to spend time doing what we love together, traveling and spending time with our families, our six kids. Instead, we've had to spend our time chasing a diagnosis and building a team of lawyers to help with the various components of long-term planning. 

It took almost two years for my husband to receive his diagnosis, after he first started noticing changes with his ability to focus on tasks or finding his words when speaking. After projected wait times of nearly one year as we tried to access local specialists, several doctors visits and a cursory cognitive evaluation, I ultimately had to review test results on my own, question his providers and seek help from specialists at separate health systems in order to get to this point. And what I didn't know at that time, was that sending Anthony to those doctors appointments alone only complicated things. With the hindsight of now knowing his diagnosis, I see that he could not comprehend all of what he was being told, nor could he always remember the full conversations he'd been having with some of these providers. 

Now, I am questioning every move and decision made over those two years: What could I have done differently? Could I have been a stronger advocate sooner? Why is it so difficult to get into a doctor, especially being so close to Philadelphia? 

In the coming week's, my husband is supposed to begin his infusions of Leqembi, with Abington Neurological Associates, and I can only hope it slows the progression of his disease so we can have more time together -- with our family -- in a state where he still knows everyone and can enjoy many aspects of life.  At 57 years old, this is not where I pictured myself. And it is certainly not where I pictured my husband.

Thank you all for your time today, for letting me share what my family and I are currently facing, and for your support in helping to fight Alzheimer's disease.