Most pALS must choose btwn:
a) silence
b) archaic communication. IE. blinking
c) paying $20k for a system weaker than ur 1980s computer
-SG
#detAiLS

I posted this on Twitter & Facebook on 12.29 2012. The general reaction was astonishment & a call for change. There was also, though, several responses asking what I was dissatisfied with from current communications offerings for patients with ALS (pALS). I will address this but first…

My goal for the “#detAiLS” posts like the one above is to provide some of the brutal, ah, details that pALS face. I see this as a counterbalance to my more frequent, optimistic & inspiring posts.

While the inspiring posts are more fun to read & write, I do not feel these posts provide an intimate nor accurate display of the challenges pALS must overcome.

The primary target for my #detAiLS posts are readers who do not know about these challenges. I believe that a cure for ALS will be found only when the general public has a clear & intimate understanding of ALS & its effects.

Additionally, until there is a cure, I believe that with the help of technology, pALS can live for decades. Maybe more importantly, I believe that these pALS will make a productive impact on the world. Based on this belief, our foundation established as part of its mission to; help develop and provide leading edge technology for pALS. I believe that this technology has implications beyond the ALS market. Someday, everyone will type, play video games and navigate their computers using their eyes.

Since Lou Gehrig’s death there has been no effective medical therapy development for pALS. During the same time period technological advancements for pALS have been, like the technology industry, exponential.

Someone cue the ‘I love technology’ song from Napoleon Dynamite.

The world is changing fast because of technology. As normal as Skype or Facetime seem to us now, the thought of video calling your loved ones from a phone would have seemed crazy several years ago.Today, we record, edit & broadcast media onsite, offsite and out of site. iTunes revolutionized the music industry years ago; now Spotify & Rhapsody are making the ‘traditional’ iTunes format obsolete. I have not bought, or even touched a CD or DVD in years. I stream. My foundation board meets monthly. We have members across the country. We meet via WebX, exchange content real time by sharing ‘desktops’, and edit documents collaboratively on ‘the cloud’. As incredible as this collaboration is, it’s done on laptops, phones & tablets that cost only a few hundred dollars, on average

After I was diagnosed with ALS, I was able to test some eye technology at a local hospital. The big names in augmentative and alternative communication (AAC) are Dynavox and Tobii. The systems I tested were ‘all in one’ eye tracking, computer, speech generation products.. I was impressed by the actual tracking technology. It was accurate and pretty intuitive to use.

The systems allowed for internet browsing, text messaging and media options but these options were limited and closed source.

Make no mistake, these systems provide a level of freedom and independence for pALS but I believe more can be done. The computer hardware is severely under-powered for modern communications and totally inadequate for someone tech savvy to do any useful work. The use of lower-end 32-bit processors, no capability for increasing the RAM beyond the 2GB installed, and the requirements for USB dongles to provide standard facilities such as WiFi and Bluetooth is simply unforgivable in a system with a price upward of $20,000.00. The excuse of “design-lag” is poor and irrelevant in a period of widely available off-the-shelf computer hardware totally suitable for the task and priced under $2,000.00. Moreover (this is for another post) insurance must realize that modern communication goes well beyond simple artificial vocalization.

Online communication via text, voice, video, and social media is a daily requirement. In order to stay engaged in life and be productive, PALS often require all of these communication methods simultaneously. To have hardware up to this task is a necessity and the current “brand name” offerings are severely deficient. Finally, these systems are incompatible with Apple/Mac products.

The current and future generations of pALS are “wired”. We create, edit, stream and share media from everywhere. We meet, communicate and collaborate with friends, family, colleagues, doctors and others online in real time from anywhere. We are productive and we want devices to facilitate our production.

I do not believe in complaining. I believe in doing. I do not believe in calling for change. I believe in making change. If I have my way, this change will happen. In making this change, we will also change the way the rest of the world communicates.

-SG

Note from Team Gleason Tech Committee: There are several solutions that do exist. These are not perfect solutions & they are difficult for pALS to find. We will share some of these solutions with you soon.

As most of you know I have also met with Boston University’s CTE research center. They have a theory that head trauma in sports can be a causative factor in ALS. If you don’t know about CTE and football read the sports illustrated from a couple months ago. CTEM is really the same thing as ALS with the same outcome so I won’t waste anymore keystrokes on discussing it.

I intended to write some inspiring piece about staying optimistic and beating this diagnosis with the same determination and persistence that kept me in the NFL. People like hearing that. Deep down inside myself, I believe that is true.
But…
I want to be honest with you… I am very scared and frustrated. I don’t feel like beating anything. I don’t feel like doing anything or keeping my chin up or calling more doctors or taking prescription drugs or joining a support group or figuring out health insurance or revising my will or or going to church or being blessed by the pope (or the pipe) or wearing magnets or eating bird food or ‘clearing’ chakra’s.
I feel like being depressed. And I feel like crying. And I feel like kicking someones teeth in or having my own teeth kicked in. I feel like pinching myself and waking up. I feel like screaming. I feel like flipping God the finger. I feel like feeling sorry for myself. I feel like running away to the moon.
You see, in reality, our bodies are saucy meat sacks that breakdown and die. Fighting and persevering, and persisting and determining and optimistic-ing, and chin up-ing doesn’t work for everyone

But… At least 3 times it has worked. So, feeling better about being honest with the few of you who are on this email, I promise to fight and believe and expect the extraordinary and smile and laugh and cry and love our lives for every breath that remains in my body. Please, please help me do that… until I’m 109.

Gratefully,
Steve Gleason

Hey. Don’t forward this. I am fine that you tell other people about this but I don’t feel like being ‘honest’ with the social network yet.

As someone who’s lost most of his physical abilities over the past twenty months, I can tell you that the anticipation of loss is worse than the actual loss itself.
I am hoping not to be fantastically optimistic with this letter but to be realistic and, possibly encouraging.
In January 2011 I was losing the ability to run. At the time, I was so dreading that loss I wasn’t sure what I would do if I could no longer run.
When it finally happened, I was forced to search myself for new avenues of joy. You see, I love to run. Not only that, I was really, really good at it.
But. New joyful avenues have emerged. Writing. Photography. Film.
It has not been easy. I have needed a lot of support. We’ve had to be very creative…

… And the losses continue to mount.
Walking. Playing guitar. Typing.

But with each loss we have worked to find a beautiful replacement. To the point where it feels less like loss and more like gain.

None of this seems fair. Why would a profitable, all-star newspaper operation be filleted to a fraction of itself?
News flash: life IS fair. It’s impartial to you, me and others. But (in my opinion) the Impartial nature of this life is what makes it so awesome. And every moment spent dwelling on the “injustice” is a moment of loss.

We all have the choice of which role we will play in life. Victim or hero?

For twelve years I’ve enjoyed the coverage by the Times Picayune. I’ve befriended journalists, editors, and staff. Recently, the paper has been a platform for Team Gleason to raise ALS awareness globally. The support we have received has been remarkable. Like most successful companies, at the Times Picayune, the key ingredient has been the people. This is what makes this upcoming transition so difficult. For New Orleanians, the journalists, editors, and staff are not faceless talents. They are our friends. Our family. Our community.

In New Orleans we enjoy our paper and its coverage but we love our people.

Most recently I have been struggling to speak. I wont lie. I have had moments of dread anticipating that loss. I still have much to say. But somewhere deep inside me I believe in seeking avenues that will creatively allow my voice to be heard. Avenues that will transform loss to gain.

Whether you were one of the dozens who lost their jobs or count yourself among those who have been retained at the new company, I would encourage you to be persistent and pursue new creative avenues to do the same. Seek new ways to share the stories that are so unique to New Orleans with the world.
It will not be easy. But I think it can be awesome.
Headline: awesome ain’t easy.
No White Flags

-SG

Sincerely,
Kyle Gleason

I know, football is just a game but when I was seven I remember crying after the Seahawks lost a playoff game. Across the country fans aged 7-70 closely tie their emotional status to the outcome of their beloved teams.

As I grew older I became more focused on my development as an individual player. In this way, I naturally became less attached to any specific pro team or the outcome of their games. Less of a fan.

Obviously, as a player I hated losing. On the field, if I lost a game, I think I was able to at least find some satisfaction in my effort and level of’exhaustion. “Hey, we lost but I played my heart out and gave it everything I had.” That psychology may be misguided but it was often useful.

This year, more than any year of my life, I have been able to consider the psychology of ‘the fan’.
Players rarely maintain any ties to the teams they play for because, more often than not, players leave for free agency, get cut, or traded. In the business of football, relationships tend to sour leaving all sides with a bad taste in thier mouth, especially the fans.
I was able to play for the same organization for eight years. I retired on my own terms and the same coaches and staff are still in place. Pretty fortunate.

Over the past 12 months while I have been tested, diagnosed and treated for ALS, key players and coaches with the Saints have been incredibly supportive.

I have spoken to the team, attended weekly meetings, practices and sat on the sideline during games.
I would like to believe that there was value for both sides.

As I took my situation public and the team kept winning it is as if we were inspiring each other. Surely, I am giving myself too much credit.

The point is… as the season progressed and I became more invested emotionally, I turned into a full-fledged fan. The connection between a team and fans can be very dynamic.

Bad teams in cities with failing economies or culture can make players and fans feel like they are stuck in a viscous cycle. In 2008 at the height of the auto industry collapse, Detroit in the land of cars was 0-16.

Our season in 2006 was an example of a very positive dynamic. A city rebuilding while a team rebuilds. A city begins to thrive as a team begins winning.

So… somewhere along the way during this 2011 season I unconsciously began to correlate my physical health with the Saints record. If my awful, no good, dastardly, terrible disease could be stalled or defeated with a Saints win, wouldn’t that be cool? Considering how the Saints were tearing teams apart and exploding NFL records, it was an effective coping mechanism. Right?

Despite how my body progressed, it felt good high-fiving coaches and players in the locker room after games. Why not allow myself to be distracted on Sunday? I have to wake up every Monday morning scouring the earth for a solution to a problem that, supposedly, has no solution. So it felt good to devote myself to the team.

Midway through the season the coaches asked if I wanted to join the team for a road trip. It has become more and more difficult to travel so I took a rain check.

With the playoff game in San Francisco approaching, it seemed like an ideal situation for me to travel since my brother, Kyle, lived near the city and I could have a chance to catch up with my buddies Scott Fujita and Eric Johnson. Better now than never, right?

In the hours before the game I found myself nervous.

As we fell behind in the first quarter the nerves increased. As fans we we miss out on a luxury that players have. Player’s nerves dissolve as the first whistle blows and physical contact is the made; sweat begins to pour and adrenaline rages. Fan’s nervousness only crescendoes as a tight game wears on.

As the team pulled themselves within striking distance, I sat hopefully with Kyle and my film partner Sean Pamphilon on the sideline. I felt that they were making the same unconscious correlation between this game and my health. We were beggars, bowl in hand. AKA fans. Giving the only gift we could to the teams: our hope to see them triumph.

Could we overcome five turnovers? Could we defy the angry fans? Momentum was building.

In the final two minutes as Jimmy Graham fell into the endzone our sideline (including me) erupted. A simultaneous release of frustration and joy.

And just as quickly we were crushed.

Saints Lose.

Not until that final moment did I consciously recognize the association I made as the season progressed. I told Kyle and Sean, “I actually thought that if the Saints won the Superbowl in meant I would get better.” “I didn’t realize that until just now.”

Lame-O.

Flights home after away games can be very therapeutic, especially after a loss. I spent those few hours consciously re-calibrating my mentality.

Was I wrong to slip and associate my health, to some degree, with the wins or losses of a sports team? Is this what fans do? Would it have been easier if the Saints were terrible and I could just not care?

Joseph Campbell writes that, as humans, we are all looking for experiences that make us feel alive. I think that as we seek these experiences, the more fully committed we become the more enriching is the experience. The more alive we feel. So we must put our emotions at risk. But then the losses can be downright crushing… I think that’s ok.

Clearly, whether the Saints win the Super Bowl or not has little or no effect on my physical health. But it sure didn’t feel that way Saturday night.

It’s just a game.

I still have to wake up Monday morning scouring the earth for a solution to a problem that, supposedly, has no solution.
But, it’s a game that gave me brothers like Scott Fujita, Drew Brees, Sean Payton and many others, men who are taking this extraordinary journey with me. We plan to find a solution regardless of who wins the Super Bowl.

No White Flags

-SG