TO: Phyl’s friends and family
If you are not following Phyl’s daily posts and pictures on Facebook, you might want to hear a bit about our stay in Costa Rica.
We arrived on February 12 in San Jose and drove to Puerto Viejo the next day. PV is the southern most town on the Caribbean just before a mountainous national park and Panama. Basically the end of the road. Kind of funky place, with lots of young people (surfing) and retired folks (lounging on the beach). We chose to join the retired gang and have been at the beach every day. Phyl as you know has always been something of a fish and loves the water. She loves to float in the waves and the buoyancy actually allows her to feel somewhat “normal.”
We have a pattern of coffee/tea in the morning with Phyl in her hammock on Facebook. We make breakfast and then head to town to buy a loaf of steamy hot French bread from a local guy who has it ready when he sees me walk in the door. Next off to the supermercado and fish market and with a quick stop at the coffee shop for gluten-free muffins, we are back at our bungalow by 10am. We get ready for the beach and then off to our favorite isolated spot at one of the “top 10 best beaches in the world” according to Trip Adviser to spend the day reading and floating (Phyl is in the sun and I”m under my umbrella). Phyl is back in her hammock at our bungalow as the sun goes down and then we make dinner and often watch a movie on Netflix on the computer. We do have TV but the only English channel is the BBC International News. I generally watch it for a few minutes at night because unlike at home it is NOT all about Trump. Tonight I learned that it is raining in Madagascar and Carlton beat St. Kilda in Australian Rules Football!
Yesterday, we rented a kayak and took a guided trip up the Rio Punta Uva. We saw a Caiman (like a small alligator), monkeys, sloths, lots of turtles, and the highlight was a bunch of vultures tearing apart a dead raccoon. This was good for Phyl (not the vulture part but the paddling) because in a kayak she feels just like everyone else. She is not limited by the ALS. When the guide asked if we wanted to go through the breakers out into the ocean she said hell yes!
Of course ALS is constantly on her mind of course when we drive by tours and hikes that she can no longer do because her walking is limited. It has been hard for her but she is getting better at letting go of the disappointment. We are working out ways that she can do things. For example, getting in and out of the water is difficult if there are waves. So I go with her, holding two hands and we work with the surging water for her to get out without falling down. We are getting good at it! She is using her walking sticks to go into stores and I’m driving her short distances between the stores to save energy.
Her leg strength is a problem but stamina is more of a problem. A few days ago she spent a long time in the water and the next day walking was very difficult. This gets her down and she had a tough cay. I texted her son’s that evening and they were able to Facetime. This cheered her up and the next day her strength was back. Even though we know she will have bad days, she takes it really hard.
Nevertheless, we just got news that we will have our house on the beach in Rhode Island again for the full month of June (another couple wanted it but the owners like us). And Phyl is already talking about our next trip to Costa Rica. This will depend on her ability to get around, but I’m encouraging it.
When we get home, she will go on the experimental drug again (there was a lapse because it wasn’t ready) and we have an important medical appointment to test her lung capacity on March 16. This is the big question for as long as her breathing is good, we can manage the rest. By the way, she is not talking about this so don’t mention it if you talk to her, unless she brings it up. I know she is nervous.
As you know she continues to raise money for ALS research. Her “team” (called Phyl-in-Tropics) is still in first place fundraising for the Western Mass ALS Walkathon. I know most of you have contributed, so thanks! This makes her feel really supported! I know quite a few of her friends plan on joining us and will help push her wheelchair for the three mile walk. If you want to see how her team is doing, check it out here:
I guess that’s all for now. We are loving Costa Rica but seriously missing our grandchildren. Looking forward to seeing them soon as we head back on March 9. Jake will pick us up at Logan and the airlines have been great rushing us through customs (one of the advantages to wheelchair service).
Love to you all…….