First of all, thank you from Sharon and myself for your prayers and loving thoughts, whether you were personally aware of my situation or saw my name on the prayer list. Recently new technology allowed me to receive a brain PET scan and an MRI. They show the presence of plaque on my brain and thus confirm my earlier diagnosis of Alzheimer’s Disease. But allow me to say, at least for me, that certainty is better than uncertainty and a definitive diagnosis has allowed me to begin a drug trial, the principle component of which is a chemotherapy infusion administered every four weeks until the spring of 2017. Previous trials have shown some hope in delaying and slowing the cognitive decline, especially among those diagnosed early (like me) and with comparatively mild symptoms (also like me).
And secondly, I thought it might be helpful if I shared a bit about living with Alzheimer’s, as I suspect this will be a journey together. But a few caveats (former Roman Catholic clergy are required to employ Latin at least once in every essay.)
1. This is not my mother’s Alzheimer’s, and I expect not yours. We are diagnosed earlier, treated earlier, and given hope.
2. Treatments are different. The neuro transmitter patch I am wearing is not the arriset of the old drug. And of course, there are thousands of drug trials, a few of which may make it to market as soon as three to five years from now.
As for me, it is a tricky disease, and the presenting symptoms vary widely. I am fortunate that the mental processes that are most important to me: thinking, speaking, writing, praying, meditating, and loving are minimally affected. I am learning to adjust to the cognitive losses that I have, for example: I am allowed to drive, but not at night, not in unfamiliar areas, not in heavy traffic and not in St. Gregory’s parking lot. I hope to continue serving at the altar, but you may notice, I am always surrounded by angels (albeit dressed in vergers’ garb), to continue proclaiming the Gospel – never give a microphone to a Fellow of the Episcopal College of Preachers and a former member of Actors Equity, and to visit the sick. But please be aware of two issues that will affect our time together. I can only process a few stimuli at a time, so some of the more crowded or interesting parish events are too confusing, so Cross Dinner and Easter Vigil are beyond me. And one more very practical situation “name”. You may be one of my closest friends and we may have spoken recently, but the odds are good that at any given time, I will not recognize you, or not remember your name. So, if I don’t address you by name immediately, just tell me. I will not be embarrassed, please don’t be as well.
I know that I am not the only member of this congregation to suffer from Alzheimer’s Disease, and the kindness shown to all of us brings me great comfort. But for many reasons I wish to live my disease publically, and I ask that you live with me. Peace, Deacon Steve Graff