The media

The Hummingbird Fund is gaining notice which makes me really happy.  Our mission is clear, and dare I say boldly stated:

Ending ALS. Starting with all of us.

The Hummingbird Fund stands on three pillars: access, innovation, and advocacy. We are on a mission to end care gaps for Virginians living with ALS, accelerate innovation to improve quality of life, and advocate for legislative action and research to end ALS. Through agile grantmaking, we work to help ALS patients and their families live full lives. Join us to help end ALS in this decade.

Hummingbird offers me the opportunity to use the experience I have accumulated from decades of work with families facing the enormous challenge of caring for a child with significant medical complexity and disability.  Moreover, I am lovingly joined by my family and hundreds of others whom I am calling the Hummingbird Champions. 

When invitations from the press started to roll in, you might imagine I would be delighted to share my passion for the vision of the Fund.  

My immediate thought was that this kind of carpe diem would be best delegated to my highly photogenic, uniquely poised, well-spoken family.

They declined, saying I was the man for the task.

So, I keep saying yes.  And you know, with preparation and some practice it gets easier.  I now see the media as a chance to share the ALS story, which has been side-lined for almost 100 years. 

Recently, Will Selden, a podcaster at the Virginia Health and Hospital Association, began his interview, asking, "So tell us, how are you doing these days." 

The question caught me off guard with its humanity. I thanked him for the question and its kindness, and then I answered as I almost always do, saying, "Oh, I'm fine." In this instance I elaborated with mention of the abundant love surrounding me.

I mean, no one wants to hear about me struggling to learn how to butter toast with my right hand, or the disappointment and fear associated with the gait-related side effects of edaravone, a medication I've been waiting to try for months, and one that required no less thank 20 hours of my time in the way of prior-auth's and payment schemes.

With the media I stay close to my talking points, allowing the daily realities to swirl like an imaginary cloud bubble above my head.

Some questions are fun.  Here's one that Will Selden used to close out our interview.  Feel free to try this at home and let me know your answers.

If you were stranded on a desert island, all alone, what one book (aside from the holy text of your choice), movie, and recording would you want to have along?

Ok, so here goes.  I will mention that I decided to go for diversity:

BOOK:   Mirabai Starr's recent translation of Julian of Norwich's The Showings

FILM:     Notting Hill

MUSIC:  Nina Simone "Pastel Blues"

Will Selden had one more question before signing off.  He asked for a bit of advice I had received that was worth passing along. My answer came immediately to mind, but I decided to place it in the context of a brief story.

When I was first diagnosed with ALS, I was at sea with knowing how to integrate ALS into my psyche, into my soul, really.  I revealed this awkwardly to a friend, who took a moment, then looked me straight in the eye, and with a gentle smile, said, "Just be yourself, Jim.  All you have to do is be yourself, and the rest will follow."

My daily 40

A local gastroenterologist taught me the proper way to swallow a pill.  

Said gastroenterologist was also the mom of a teenager in my care.

Teenagers famously swallow their acne medicine without so much as a sip of water.  Hence, the doxycycline sticks to their dry esophagus and creates an ulcer.  Said teenager then ends up in the pediatrician's office with chest pain.  Thus, I have discovered, teaching teenagers to swallow their pills with plenty of water is just practicing good, preventive medicine.

Here's what I learned from the gastroenterolgist-mom, and subsequently passed along to dozens of teenagers I treated for acne:

• begin with 8 ounces of water
• first take 2 swallows of water to moisten the esophagus
• then swallow each pill with the remaining water   

I take 40 pills a day, my daily 40.  That's roughly 1200 pills a month. 

If I followed my own advice, I'd be swallowing 320 ounces of water a day,  That's 2.5 gallons of water a day.  Peggy has suggested I try milk instead of water, to make the swallowing easier. Doing the caloric calculations for 2.5 gallons of whole milk, that would be an extra 5,760 calories a day.

In various mindfulness workshops, I've been instructed to eat one blueberry or one M&M at a time, savoring the individual experience of the moment.  And perhaps it would aid my healing to contemplate the action of each pill, individually, in the moment, as it fights Mr. ALS, but 2 1/2 gallons of water a day seems impractical, and potentially dangerous.

And besides, I eat blueberries with gusto by the handful.  Is it really a surprise that I'd take my pills by the handful too? 

When swallowing pills, I am careful to drink lots of water.  However, even well meaning techniques pose potential hazards. 

Depending on the size, shape, and quantity of pills in each handful, I might cough a bit, causing water to shoot up my nose.  This, by the way, feels exactly the same as getting water up your nose while jumping off a dock, into the lake, doing a cannonball to show off.   Such a show off.

Included in the daily 40 are 4 anti-retroviral medications (ARVs) that are part of a NIH clinical trial.  Why am I taking ARVs commonly used to treat HIV, you ask? Well, it turns out that I am among the ALS patients who have HERV-K floating around in their blood.  And, HERV-K, like HIV, is a retrovirus.  The NIH study aims to determine if ARVs can eliminate HERV-K from the blood.  And what might be the role of HERV-K in ALS, you ask?  Like most everything with Mr. ALS, the role of HERV-K remains illusive.  Sorry.

Ah, but here's the plot-twisting good news.

During the HIV epidemic, a small group of patients with HIV also developed ALS, or something that looked exactly like ALS.  When these patients received ARV treatment for the HIV, their ALS symptoms went away.  In other words, ARVs  completely reversed the ALS.  They were cured!

This current NIH trial lasts 24 weeks.  At the end of the study, the NIH will no longer provide ARVs, even if they seem to be helping clinically, because this is not a randomized clinical trial. The purpose of this trial is only to investigate the effect of ARVs on HERV-K in my blood.

Ok, just for kicks, let's imagine that I do experience a positive clinical effect, a reversal, from the ARVs, like those folks who had HIV.  If I want to keep taking the ARVs, the monthly cost would exceed $12,000, and insurance will not cover ARVs when used off-label for ALS.  A sad reality of our health care system.

To continue taking the ARVs after the NIH study ends, it appears I will need to contract HIV.  Now, no one wishes HIV on anyone, but this seems the only logical way to obtain insurance coverage for medication that might successfully defeat Mr. ALS. 

HIV to get ARVs to reverse ALS, why not.