My 10-Month Progress Update

Always moving keeps the disease from catching up to me!

It’s July 1st, 2026, and I’m still me. 😊 It’s now been over 10 months since my diagnosis and this newsletter is posting while I’m out backpacking a section of the Appalachian Trail (AT) in my beloved Hundred Mile Wilderness (HMW) in Maine.

This will actually be a bit shorter and less edited than most of my posts because I headed out 2 days earlier than planned to meet up with my friend Lucky Dog (a.k.a. Shridhar) at a different point on the trail. The rain has been frequent and the terrain is tough in the notches of southern Maine on the AT so he’s behind schedule, but I still wanted to have an opportunity to hike with him for a week or so. I have to be back in time for my infusion and my “Live Talk” with Being Patient on July 10^th so I recalibrated where we’d meet up and hike to. Hiking anywhere in Maine on the AT is magical, and I’ll now meet him when he crosses the Kennebec River on the “ferry” (it’s a guy with a canoe that the ATC employs to get hikers across the river since there’s no bridge) then head north to some yet undetermined spot where we’ll part ways. I’ve been looking forward to this trip for a while!

It’s been a busy month outdoors where I continue to prove that “I’m Still Me”, but I’ve noticed that I don’t have that same go-go-go attitude I used to. Many days are what I’d call “lazy” as I waste time or sit at home writing & researching for my different newsletters. I used to accomplish so much more in a day, and I wonder if it’s part of the disease and I’m no longer as efficient as I used to be, or if being retired is taking away some of that sense of urgency… there’s always tomorrow since “every day is a Saturday” for me now. I still get done what I need to, but not as fast and not as timely as I think I should be. Only time will tell which is the cause.

If you subscribe to my “Where the Redfern Goes” newsletter, you’ll know that this past month I completed the 800-miler level of the CT Blue-blazed Trails Hiking Challenge. I thought it would take me all year to complete but I was going like gangbusters even in the snowy months! Now onto finishing Vermont’s Long Trail this fall!

The hike that pushed me over 800 miles - the Branford Trail @ Stony Creek

One of the most enjoyable things I did this month was spending 3 days at the Aspetuck Land Trust’s (ALT) Farm Creek preserve hosting waves of 4^th grade students from the Norwalk schools. With Alzheimer’s Disease (AD) it’s so important to continue to socialize, and spending days with curious children filled with energy is the answer! Since it’s in South Norwalk, I had never been to the Farm Creek Preserve before so Jan and I went down to scope it out and plan for what I’d be pointing out and teaching the kids in the short hour I had with each group. The goal was to teach them about some cool trees, plants, birds, and sea creatures we might find. So each day, I was the “guide” who looked like the geek. I had my binoculars around my neck, my mud boots on up to my knees, and my surveyor’s vest loaded with pockets that held magnifying glasses, loops, dip nets, and a collapsible bowl. The kids loved using my binoculars to look at the yellow-capped night herons and ospreys. They marveled at fungi and lichen up-close with the magnifying glass and loop. We didn’t get to capture any fiddler crabs in my dip net to observe, but I did wander into the water and capture some shrimp for them to observe up close in the bowl! The kids were wonderful and made me feel special too, many gave me hugs at the end, some wanted me in their group school picture, and others said things like, “I wish I could stay here with you long enough to learn everything you know!” There’s hope for our future yet!

Yellow-capped Night Heron, Me at the gates, Sharing cool things I found in the tidal areas with the kids

You’re probably as tired of hearing this as I am of dealing with it, but my old neurologist and their infusion center just won’t go away! For the 5^th month in a row I’ve gotten a bill from them for my 1^st infusion back in November! Every month I talk to them. Every month they claim I’ve never followed up with them. Every month they claim they can’t get paid so I’m responsible for the money. Yet at the same time, I speak to others there who tell me they’ve been paid by both the insurance company and the manufacturer co-pay program. Each month I call Eisai (the lecanemab manufacturer) and talk to their copay program support group, and they are wonderfully helpful. They have repeatedly helped the infusion center and say they paid them. How does this neurological practice stay in business with such horrible billing? I keep telling them I’m the Alzheimer’s patient, it should scare them that I seem to understand the billing process better than them!

That’s about it for June, but July has some exciting AD-related activities:

• Don’t forget that I’ll be the guest on Being Patient’s Live Talk “Patient Perspectives”, you can register to watch me live on July 10^th at 2pm ET. (note: the RSVP button only appears to work on computers, not iOS or Android devices) I would appreciate the moral support if you have time to join … and by all means feel free to ask questions since it’s intentionally a live Q&A as well.

• I also have July meetings with both of my neurological teams on back-to-back days in late July, so I should have some updates. By then my doctor at Mass General Brigham’s will have had time to review all of my monthly cognitive testing for the 1^st six months of my lecanemab infusions to see if there’s any progression (positive or negative) and my doctor at Yale University will have had time to review my last MRI for any signs of disease progression.

Coming Next: It’s going to be quiet for a few weeks while I’m backpacking… but I may post some short thoughts from the trail by phone if I have sufficient signal.

Peace my Friends and Thanks for Reading!