Eight Month Update

A new care team and infusion center

It’s May 6th, 2026, and I’m still me. 😊 It’s now been over 8 months since my Alzheimer’s disease (AD) diagnosis and boy oh boy what an active and transformational month this was!

I started the month with a family vacation to Portugal, and it was one of the most wonderful family vacations we’ve ever had. It was the first time that we had Jan and I, our children Derek & Erica, plus Derek’s wife Ari and Erica’s fiancé Doug all together for a trip that wasn’t a wedding or a holiday at home. You’ll find the trip details in a separate “Where the Redfern Goes” article if interested. One of my priorities is making memories at every opportunity because it’s not very often that we have all of our family in the same city.

Looking back, I should have spent more time in advance brushing up on Portuguese instead of expecting that most people would speak English as well. They did, but I could have made much more of an effort to be a part of their world. I used some broken Spanish to Portuguese equivalents to help me, but it wasn’t enough. I have 3.5 months before I go to Italy to backpack in the Dolomite mountains, and I need to focus on learning some Italian because there is no simple equivalency for me to fall back on. I wasn’t exposed to Italian in school like I was with Spanish, French and German. They do say that learning a new language is good for the brain, so…. 🤓

Since April is Earth Month, I spent a lot of time attending to Mother Earth. I got some of my gardens ready for the new growing season, while some others still need work. My year-long phenology project for my Master Naturalist certification is now in full swing! The woods have awakened from their long winter slumber, and each week during my observations I’ve been finding more plants, birds, animals, and amphibians that I hadn’t realized were out there! I’ve also been planning nature hikes & scavenger hunts to take youth groups on. Most recently, I’m beginning to prepare for guiding groups of 4th grade students on Outdoor Classroom learning events at the Aspetuck Land Trust’s (ALT) Farm Creek Preserve later in May. I know a lot more about inland plant and animal species of New England than coastal species, and Farm Creek is a coastal preserve, so I have a lot to brush up on … just what I love, more nature learning!

Probably the most anticipated task in April related to AD was the transitioning of both my neurological care team and infusion center where I get my bi-weekly lecanemab treatments. The changeover itself has gone more smoothly than I had expected, but that is likely only because of my relentless planning in advance and dogging of my insurance company and manufacturer co-pay program, while working closely with my new care team at Yale. My first infusion in the new center was exactly on time. They worked hard to maintain my bi-weekly infusion schedule to the day. The new center is busier than the old one since it’s at the Bridgeport Hospital. It’s on the 7^th floor and has windows looking out toward the Long Island Sound. The windows are a nice change, the old center was an interior room in an office building in Stratford. The nurses in the center were friendly and excellent with needles (always good to find out when you are getting stuck every 2 weeks). My new care team already has my next mandatory MRI lined up in May to make sure there are no complications with the treatment. Assuming that this, my 6-month MRI is clear, I will not need to get any more unless I have visible complications. Since I haven’t had so much as a headache from the treatments in the first 6 months, I’m really confident that it’s smooth sailing ahead!

This month also reinforced that I made the right decision to leave my prior care team. I really liked the nurse in the other infusion center, she was wonderful with us all. She made a real effort to know us, not just our names, but what was going on in our lives. When I got back from Portugal she remembered I went away and asked how the vacation was. When I came back after the holidays we talked about our family get-togethers. She was a truly caring person that all practitioners should strive to be more like! Now the organization’s billing department… that was a different matter. My first infusion was in early November, but they didn’t bill insurance and the manufacturer co-pay program until February. They couldn’t figure out how to properly bill, so they tried to dump it on me. After speaking to the support group at the manufacturer co-pay program, I took many calls and a week of time to speak to a human at the infusion center billing department. I had to explain to them that the process was a direct provider to manufacturer program - that they enrolled me in - and I put them directly in touch with the right people who could walk them through the reimbursement process. Fast forward to April and the infusion center sent me the treatment bill instead. When I called them, they said that since I never gave them the billing codes they needed, they are billing me directly. Everyone knows that patients don’t broker billing codes between provider and insurer, but I wanted them out of my life. Since they hadn’t even gotten the first treatment billed properly and they had 10 more to bill, I was going to be dealing with this for a long time if I didn’t do the work. I made the calls again, explained the issue to the co-pay program, and I sat on hold while the wonderful people at Eisai (the lecanemab manufacturer) handled all the calls in the background to walk the infusion center through the process and get the first treatment payment processed. Afterward, the person at Eisai said they didn’t understand why the infusion billing department couldn’t figure it out, but they got it done. Thank you Eisai!

I recently shared the self-made video I created about my journey to diagnosis. Shortly after going public on social media with my diagnosis, the Being Patient organization found this “I’m Still Me” Substack and asked me to create a short video of my story. They’ve since asked me to be a guest on their program called “Live Talks” and we met this week to discuss it. It’s a 30-minute live program where we’ll talk about my journey, both before and after diagnosis. Attendees will be able to ask me questions, and I’ll answer them in real time. I’ve spoken in front of live crowds in very interactive settings my whole professional career, but this is different, I’ll be talking about a very vulnerable topic for me. This is exactly why I decided to go public with my diagnosis, so it’s a wonderful opportunity for me to tell my story to a wider audience … to share my journey with others who are like me (diagnosed with AD) but may be suffering in silence, who are caregivers or care partners of people like me, or who are terrified of getting a diagnosis like me. There’s no cure for AD, but there’s life after diagnosis and I want to help more people understand that a post-diagnosis life can be rewarding too. So, if you have a question you’ve wanted to ask me about my journey, be sure to save the date of July 10^th at 2pm ET. It’ll be live on Facebook, and once it’s all finalized, I’ll share registration details!

Being Patient is a treasure trove of information on all forms of dementia, please check out their site in the link above.

The past month has also been a celebratory month. We celebrated our son’s birthday while in Portugal, and we celebrated both our daughter’s birthday and her fiancé’s at the turn of the month. April is also our anniversary month, and Jan and I celebrated by going to New York City for dinner and then to see a show on Broadway called “Every Brilliant Thing” starring Daniel Radcliffe who played Harry Potter in the movie adaptation of the books. Daniel was a one-man show, but he involved the audience quite intimately and found a way to tell a story about depression and suicide in a way that treated the topic with levity but also compassionate dignity.

Dinner in NYC at a Turkish restaurant, dessert of Portuguese pastel de natas, "Every Brilliant Thing" show

I haven’t shared much on disease progression for me over these 8 months, but I’ll spend more time on that topic next month since this update is already longer than I expected. Spoiler alert … that sounded ominous, rest assured I’m still in a good place.

Coming Next: I haven’t decided yet. 🤔 I still have a few topics I’m developing, but I’m also open to special requests!

Peace my Friends and Thanks for Reading!