An overdue update

Friends, tomorrow marks three weeks since José’s retirement and it’s been a whirlwind. I’m hopeful that he’ll have the energy to share an update soon. In the meantime, here’s a snapshot of some of what’s keeping us busy.

José continues to struggle to keep his airway clear of crud which has lead to more frequent days that are hijacked by coughing that wears him out and breaks his spirit. Fortunately, he has an incredibly talented and attentive care team that guide us in continuing to optimize our routines to keep any secretions thin and clear the mucus that develops.

In happier news, one of the biggest transitions that we’ve been anxiously anticipating with his retirement is nearly complete. His social security disability insurance (SSDI) application was submitted and approved in ONE WEEK! We’re hoping to have him fully enrolled in all of his new Medicare plans by month’s end.

We’re also preparing to announce a fun gathering hosted at Blue Note Hawai‘i on Saturday, Oct. 12. Many of you have asked and been patiently waiting to hear when and how we would be celebrating José’s retirement … this is it! In fact, it will also serve as a belated birthday gathering and all-round “José fest” bringing together the wide circle of friends, family, colleagues, and community members for a morning of food, music, and fellowship.

In tandem with the Oct. 12 event, friends are organizing a special online auction that creates connections between people who know and love José, encourages participants to #LiveLikeJosé through immersive experiences rooted in food, music, art, and discovery, and raise funds to allow us to continue making decisions based on the best care options available for people living with ALS.

We’re anticipating lots of interest (and questions!) about both opportunities and promise to share more very soon.

In the meantime, the goal for our current GoFundMe campaign has been increased to bridge us to these events and enable us to expand our home care team. HUGE thanks to everyone who has already contributed or helped to spread the word, support us through our Amazon wish list, sent handwritten notes, text messages, and so much more. Every single thing you’ve done has made a difference and continues to buoy our spirits.