🎬 Another movie recommendation

It’s been a while since my last update. Fighting off a series of bronchial infections from March through May, the continuing weakness of my voice, and the daily struggles of my disease progression which includes high levels of fatigue, have all prevented me from staying in better touch with you.

I’m now about 49 days away from my final day at Hawai‘i Public Radio. And while I have come to terms with the approaching end of my broadcast career, I am very anxious about what life will look like after July 31.

Going from a well-paid position to depending on Social Security disability and a little bit of my retirement funds, provides for a very high level of anxiety. This disease, besides destroying your body and taking away a career that I loved so much, is also a significant financial burden.

Many ALS families deal with the same issues of how to pay for medical expenses, equipment, and caregiving help, among other things. We’re lucky to have assembled a great care and support team around us, including doctors and specialists that make house visits, and a phenomenal caregiver, Abby, who tag-teams my daily care with Jennifer.

Much of it comes with a hefty out of pocket price tag and is the reason that ALS is often called “the bankruptcy disease.” Caring for an ALS patient is estimated at $200,000 a year. Needless to say, Jennifer and I are devoting significant time and effort to getting our ducks in a row to ensure a smooth transition while maintaining my quality of life (and care) post-HPR.

Now, I’d like to make a movie recommendation for you.

If you’ve read our previous posts you know that I have benefited from the support and kindness of TEAM GLEASON, including my voice banking, power wheelchair elevation expense coverage, eye gaze machine expense help, and the acquisition of a customized shower chair and rail system that has made taking showers much safer and easier on Jennifer.

Team Gleason was founded by Steve Gleason, a former NFL New Orleans Saint player, who was diagnosed with ALS at the age of 34. Steve is still living with ALS after 13 years. In 2016 a documentary featuring Steve was produced mostly from home videos and a video log he started to record for his then unborn son just in case Steve didn’t survive long enough for his son, Rivers, to know who his father was.

The film, titled Gleason, is available on Amazon Prime and does a great job in showcasing the day-to-day life of someone living with, progressing through, and struggling with ALS. It also shows how much goes into caregiving for someone with ALS. While there are some differences between Steve’s journey and my journey, there are many similarities. I urge you, if you have the time or interest, to check out this film.

One of the things that you’ll see in the film is when Steve made the decision to be trached, which is one of the reasons he has outlived the normal 2-5 year life expectancy of someone diagnosed with ALS. I have made my intentions very clear that I wish not to be trached, which might mean a shorter lifespan for me. But for the time being I have come to peace with my disease and don’t wish to live with a tracheotomy. And as Jennifer often reminds me, I can always change my mind.

Our continued gratitude

I want to thank everyone who has contributed to our GoFundMe campaign in support of my journey. Some of you have been so generous by not only giving once much giving multiple times. Thank you. If you have the capacity and have not yet given, please consider making a gift in whatever amount you can. Every dollar raised helps offset our medical expenses and goes directly to an account set-up specifically for my care.

Many of you have also been so kind and have purchased items from our Amazon wish list, which Jennifer populates from time to time. The beauty of this resource is that if you purchase directly from the wish list, the items will ship straight to our home and remove the items from the list once purchased.

And finally, for friends based on O’ahu: we’re resuming our use of ianacare to coordinate in-person support opportunities. If you haven’t already joined our ianacare team, send us a message and we’ll share an invitation so you can view the schedule of shifts to help with helping me at home on days our caregiver isn’t working and other occasional needs.

As always, thank you for your friendship, love, support, and aloha. Jennifer and I are both grateful.

with aloha,