Carpe Diem

It has been five days since we arrived in Anguilla. We have done little other than make sure we are getting enough sleep, plenty of water, and three squares a day so that we don't jeopardize our ability to do the same thing each day that follows. Although the decadence of an unscheduled day (week!) feels strange, we are quick learners and are adapting.

Anguilla, British West Indies (Sint Maarten in background)

We arrived on Sunday to give ourselves the added benefit of non-stop air service from Boston and a three-day jump on the 50 other guests from eVestment. Anguilla is a beautiful little slice of paradise, and the weather has been consistently around 80 degrees, sunny, and breezy for the entire visit.

We did a little island discovery on our first day, renting a Moke. A Moke is a cross between a Jeep and a golf cart, and it handily moves along at 45 mph, making it a fun way to get around the relatively small island. We headed down to Shoal Bay and spent a few hours on the beach and having lunch at a little beach shack that served amazingly good and fresh food.

Our Moke, nicknamed Fruit Punch

On the way back to The Reef, our home base, we stopped off at the infamous Dune Preserve, Bankie Banx's beach bar that is said to be one of the best in the Caribbean. What it gets right is sand, rum concoctions, great music, and not a wall in sight. The bartender was perfectly happy to enjoy a joint just upwind from us, so we enjoyed 15-20 minutes of second-hand smoke while he ably demonstrated how un-stressful island time can be.

Life at the Dune Preserve, Jimmy Buffett's go-to bar on Anguilla. Salt shakers were abundant.

The Dune Preserve is a combination of Swiss Family Robinson and Pirates of the Caribbean, and we passed a nice hour as the sun prepared to set for the night. We also enjoyed a nice conversation with Leroy Martinez, a forty-year-retired former BoA banker who stepped onto Anguilla at 42 and promptly settled for good and left banking. He was a fascinating character who clearly likes to engage people, and we learned a bit about his charitable work on the island and involvement in his Catholic church (all of which I promptly fact-checked on Google and the guy was legit). He looked like a guy down from Wellesley for the week and apparently still plays tennis regularly. He told us about surviving Irma in 2017 when the Leeward Islands got hammered. He stayed in his home, believing the storm would pass as most previously did. Trying to save a painting given to him by his parents, he was thrown into a wall and lost all of his teeth. Seeing the human toll of some of these storms is pretty wild. Bankie was in residence on the day we visited, and he was kind enough to pose for a photograph with Deb. He is a soft-spoken man, not in a hurry to do anything in particular, and he has compiled a decent songbook that we checked out on Spotify. He is originally from New York, but something about a possession charge left him persona non grata in the United States, and he has been living on the island for 15-20 years, recording, and running a beach bar.

Deb and Bankie Banx, known as Anguilla's Bob Dylan

Other than looking at the clouds drift by, we have spent time with people from eVestment that Deb can now put a face to and trying to find new ways to use idle hours. We did get off-campus a few times, but the CuisinArt resorts have given us plenty of options for just hanging out.

Dinner at Straw Hat

So, why am I bothering everyone today with tales about our vacation in the Caribbean? That's a good question, I guess. One is to check in, because sometimes no news from us may be interpreted as not good news. We have received some updates on drug treatments; and, at this point, there is not a lot to report on that front. A Biogen Phase I trial (Safety) passed Deb over, so Dr. Nicholson used the opportunity to get a refresh on our game plan, and it looks like we will be adding Radicava to the treatment plan. This is a step that the medical team was pushing off for a number of reasons (interaction complications with trials, impact on quality of life). Once begun, and it looks like we will start shortly, it involves dripping through a "picc-line" that is similar to a permanent IV for an hour once a day for 10-14 day periods. It is one of only three FDA-approved drugs for ALS, so it is a step we felt we needed to take. We will put up more information on potential trials in the coming weeks once we have had a chance to evaluate them and determine whether we will be included.

The march forward continues, and Deb's speech continues to bear the signs of advancing ALS. I love to watch Deb engaging strangers we meet from the resort staff to work compatriots and spouses who benefit from her wise and caring counsel, thoughts on raising children, talking about their lives. We are jamming as much into our days and weeks as we can, and Deb cherishes visits and encouraging words you all have shared. Please let her know how YOU are doing and be in touch.

There is a fundraiser in Cambridge for ALS coming up in a week that looks fun, and we think we might give it a look! Let us know if you might want to meet us there...it might be the spark that gets us on board.

https://fundraise.als.net/greatbostonchilibowl