My Nine-Month Update
I continue to acknowledge the bad, but try to build on the good and enjoy life a day at a time!
It’s June 3, 2026, and I’m still me! 😊 It’s now been over 9 months since my diagnosis, and I passed another big milestone in my treatment protocol this past month while staying active and proving to myself that I truly am still me. I’ve been on the lecanemab treatments for 6 months, which means … you guessed it, more tests.
Before I dive into that, I had some very positive experiences this month…
I was honored this past month to have been selected as a candidate for the 2026 slate of the Appalachian Trails Conservancy’s (ATC) Board of Directors. I met with two different board members who are on their selection committee, and they will be selecting the finalists in June. Those finalists will then be proposed as the new slate at the August membership meeting for election. No matter what their decision is, I felt fortunate to have even been considered for the board of an organization that I hold in such high esteem. The ATC is not only the steward of the Appalachian Trail (AT) and its surrounding corridor, but it also works to preserve and protect the lands, waters, and air that surround the AT from destruction by overdevelopment, corporate greed, climate change, and government neglect.
The beauty of having decided that I will unabashedly share my Alzheimer’s disease (AD) journey with the world, is that I also have no reason to hide it from anyone, in any situation. I was very open with the selection committee about my diagnosis, where I stand in the disease’s progression, and what my prognosis is for the future. I was equally honest that the board’s 3 x 3-year term cycle for board members means I can’t promise I’ll be around or able to serve all 3, 3-year terms. I let them know that if that is a deal breaker, I’m fully supportive of them pursuing other candidates. It’s liberating to be so open and not feel like I’m hiding something … even if it may result in elimination from consideration for some opportunities.
I was also honored to have been awarded the Appalachian Mountain Club’s (AMC) 2025 Volunteer of the Year Award. It was presented to me by our awesome CEO, Nicole Zussman at our Board of Advisors’ meeting this month. I’m a proud member of AMC’s Board of Advisors and I co-lead AMC’s club-wide conservation efforts. Now that I have more time on my hands, I’ve really dug into the challenge of building more conservation activists in AMC’s local chapters, as well as its volunteer-led camps. I find it breathtaking when I look at how many volunteers take people out on hiking, cycling, paddling, and social activities from Virginia to Maine in our chapters. We need to help people connect their love of outdoor activities, to wanting to preserve those areas where they recreate. The current federal administration would be just as happy to plow them all under and “put up a parking lot” so it’s up to all of us to prevent that. Thank you Nicole and the rest of my friends at AMC for sticking with me as an important part of the volunteer conservation team despite my AD journey!
Last month I promised to include a section on disease progression for me this month. It was a particularly difficult month. Let’s face it, there’s no cure for AD and it will progress for me over time, but feeling some potential progression is very hard for me with everything I’m doing to keep it at bay.
You all will probably think this is silly, but the most devastating thing this month, which caused me a lot of lost sleep, was quite literally taking out the trash. It was a Wednesday and I got up and did my usual activities as soon as I awoke… emptied the dishwasher, refilled the cat’s water bowl, cleaned their litter boxes, made my tea and yogurt for breakfast … and, knowing it was recycling day, I took out the recycling and wheeled the bin to the curb. When Jan was heading out a little later to do a Food Rescue, I told her the recycling was already out. To which she very gently said, “are you sure?” My thought was, “of course, I remember just wheeling it out to the curb!” But I looked out the window, and it was the garbage bin, not the recycling at the curb. That mistake may seem trivial, after all I could have just been distracted… but doing something incorrect and not even remembering doing it is what many people report as the first sign. People with AD unknowingly put the juice or milk in the cupboard, look for items in the microwave that are typically stored in the cabinet, or generally put things in the completely wrong place without realizing it. Was putting out the recycling, without realizing it was actually the trash, a sign of disease progression? I don’t know, it depends on whether it becomes a pattern, but it hit me hard for a week.
Since I passed 6-months of lecanemab treatments (IV infusions every 2 weeks), I needed to go through another MRI to make sure there are no signs of a dangerous condition called ARIA, and I had my 6-month battery of cognitive tests which are part of the clinical study I’m in to track the impact of my lecanemab infusions.
The good news is that the MRI showed no signs of the more dangerous ARIA-H condition, but there are signs of ARIA-E (minor temporary swelling in the tissues of the brain) which could result in me having to stop treatment temporarily to allow it to subside. Fortunately, my doctor has said it’s fine to continue. The imaging was done by a new facility now that I’m using Yale University’s memory care specialty team for my treatment, and the write-up is different. The prior MRIs compared my MRI to prior ones and gauged whether there was any atypical brain volume declines, this one did not. While no news is good news, it was always comforting to see the results explicitly say that my brain had only normal changes in mass for a man my age. I grew to appreciate being told that I had an “unremarkable” brain. 😊
The expanded hour of cognitive tests at six-months included memory tests like remembering 15-20 words rapidly flashed on a screen and then having to recall them (I hate that), interpreting scenes and storytelling, reading aloud, listening to an audio story and then summarizing it, following instructions to perform physical tasks, and reciting the alphabet. I felt like I was on fire for most of the hour! Then came the exercise where I had to pair letters of the alphabet with numbers in succession (a-1, b-2, c-3, etc.). I do this one every month in the tests and I always wondered if I flubbed any of the pairs because it can get confusing where you are. I now know that I hadn’t in the past because twice while reciting them this month the clinician said, “that was wrong go back to ___.” Which got me even more messed up, and each time I had to restart. Sitting here this morning I can rattle them off in my head, but that day I flubbed it twice! Through an hour of successful testing that day, one damn issue dragged me down again. It’s possibly nothing, but I overanalyze everything for signs of decline. It’s foolish, I can’t stop it even if I notice decline, but the fear is ever present.
I’ve noticed that my word finding issues are possibly more pronounced than a year ago. It’s hard to judge though… I don’t count how many times it happens each day to see a trend, but it happens daily and several times. The interesting thing is, it rarely happens when I’m speaking to a group, it’s more pronounced when I’m at home. The words almost always come to me, and usually quickly, but it’s a regular occurrence rather than infrequent and every occurrence frustrates me and serves to remind me that I have AD.
Heavier topics always deserve a little cat therapy from Gilligan and Ginger, so here’s a few pics of our crazy feline brother-sister duo!
On the lighter side, I spent a good amount of time this past month backpacking both here in CT as I work on my CT Blue Blue-blaze Hiking Trails Challenge (I’ll have an upcoming article on that soon), and up in NH backpacking in the Pemigewasset Wilderness with some AT friends (now I can just call them friends) that you can read more about in the link above. The backcountry is where I can both prove to myself that I really am still me, and forget about the disease lurking within me. Between having cherished friends to talk to, and immersing myself in the beauty of the backcountry, all my fears of what the future holds for me seem to melt away.
Today, as this article is being published (I schedule them in advance), I’m also finishing the last day of teaching Outdoor Classroom with the Aspetuck Land Trust (ALT) at their Farm Creek Preserve in Norwalk, CT. Each year, ALT invites all 800 or so 4th graders in the Norwalk school district to come and learn about nature. They come in waves of about 35 students and 5 or 6 of us break them up into smaller groups to walk about the preserve and learn. The highlight of Monday for the kids was a dead bird next to the trail, so we talked about fly larvae (maggots) and how they help decompose the body back into the soil! Yesterday it was the Yellow Capped Night Herons and White Egrets, hopefully today we’ll see some Fiddler Crabs. Since Farm Creek is on an inlet of the Long Island Sound, I pulled a muscle shell from the water for them to touch, we looked at different plants, saw some birds including a Egrets, Ospreys, and Herons, and even talked about fungi and lichen that we saw on rocks and logs.
What a joy it was sharing my love of nature with young kids and hopefully sparking a love of their own! One student said to me, “I wish I could stay here long enough to learn everything you know about nature!” and another said, “this was the best field trip ever!” Which is exactly why I spend time sharing my love of nature with young people!
Coming Next: I’ve been so busy lately that I have NO idea! Alzheimer’s related topic requests are welcome from all of you 😊 I may also take a break for a week to catch up on some other articles for other newsletters in “Trails, Truths and Thoughts” I’m working on my first self-produced podcast and haven’t had time to get to it!
Peace my Friends and as always … Thanks for Reading!
