The end of an era

On Friday, April 19, 2024, at 5:50 PM, I opened the microphone for the very last time as Hawai‘i Public Radio’s GM during the station’s spring fundraising campaign. It was an emotional moment for me—to say the least—as I acknowledged the support of my team, the board, and our listeners and donors on the air.

While I still will be employed through the end of July, this moment marked what is expected to be my last on-air appearance and the last time that my voice will be on the radio after a long and fruitful forty-year career in public media.

Due to my weakening voice and my diminished strength and energy, my time on the air during this fundraiser was very limited. I was touched by the many comments made by our listeners honoring my time as the head of HPR. I still have much to do before I finally walk away from the career that I have loved so much, and I look forward to continuing to work with my team to complete several projects still on my plate.

As I venture into this new phase of my ALS progression where my energy is low, I feel weak most of the time, my voice is disappearing and my breathing becomes more labored, my caregiving team has become so much more important. Besides the medical professionals who have been so great, we have recently hired a new in-home caregiver to assist Jennifer in my daily care.

Abby joined our team earlier this month, and has been an absolute delight. She is a great help, and a thoughtful and caring caregiver. Of course, this comes at a significant out-of-pocket cost to us but one that is crucial to my care. We have a GoFundMe fundraiser started by our friend Amy to help us cover my care expenses as we transition to a single-income household supported by Jen who is also my primary caregiver. Even with Abby’s full-time support, my care continues to be a full-time role for Jennifer as well. Living with ALS means there is never a day off for my care team, especially Jen.

We have also recently added new medical professionals to our team, including a new pulmonologist who makes house visits and is awesome and very responsive. Additionally, we were connected with Navian through orders from my PCP, to provide supportive (a.k.a. palliative) care, which includes a weekly nurse visit, nursing aides, grief counseling, and other services as needed. If you live in Hawai’i, you may know this company as a hospice provider. We are currently NOT in need of hospice, but the services they provide in the home are very beneficial for my care.

Since my return home from my emergency surgery in December, I have been essentially full-time on formula feeding through my G-tube, which was just replaced this past week once again. It’s a routine change, but one that requires a visit to the hospital. While I miss the taste of food, I was beginning to have difficulties swallowing, which caused bouts of coughing and a suspected case of bronchitis. Going forward, it’s much safer for me to get my primary nutrition from formula via my G-tube.

And finally, some happy news! My youngest daughter Emily got married in early April. While I was not able to attend, I received a video and lots of photos. Best wishes to Emily and her new husband, Jai.

As always Jennifer and I continue to be grateful for all of your love and support. There are many ways that you can continue to help with my care, including our GoFundMe campaign, Amazon Wish List, on-island support via our ianacare team, comments on this blog, cards sent via snail mail, and your continued love and well-wishes.

with aloha,