Steve Dezember is 31. He graduated from UGA in 2006. He was diagnosed in 2011, at the age of 28. He and Hope were already together and planning to get married. Hope is a psychologist and works primarily in low income areas. Steve’s progression has been rather rapid. At first Hope was organizing friends to come over each day to keep him company and feed him but it quickly became more than could be handled in that way. Not to mention – Hope worried constantly and decided that what she really wanted to do was to be with Steve. She recently left work to be Steve’s primary – and pretty much – sole caregiver. They have both worked tremendously hard to spread awareness – talking openly about ALS wherever they go – whether asked or not. They both love music and travel and decided to paint their car and travel to visit family, friends, and festivals this past year. Throughout the entire adventure they shared their experiences on their blog and through emails to all of us – giving us updates and tips they had picked up along the way on how to travel on a budget with ALS. They camped, stayed in teepees, slept in their car, and stayed with friends. They had an amazing adventure.
It was on this adventure that Steve made the decision that he would vent when the time came.
Steve was recently trached due to a feeding tube issue. Liz informed us that he had no form of communication while he was in the hospital.
We sent he and Hope a Tablet Kiosk/Tobii Pceye assistive eye technology kit.
We are inspired by the love of Hope and Steve and are grateful for the money donated to The Gleason Initiative Foundation so that we can help them communicate for years to come.
The Gleason Initiative Foundation donated a Tobii Pceye / Tablet Kiosk assistive eye technology kit to Matthew Olins.
His sister’s email sums up one of the reasons why Team Gleason works so hard to raise money for PALS.
“Dear Team Gleason,
Simply put: the availability of this state of the art technology has given my 44 year old big brother matthew back his will to live.
For this, my family cannot thank you enough.
Pictures to follow.
Thanks to Matthew and Alex for inspiring us to work even harder.
This is a great story of “paying it forward”. Last year, with the help of the Gleason Initiative Foundation, we were able to send AJ Roiss, his wife Missy Lawson and AJ’s stepdad, Dennis Hale to an Alabama/Michigan game.
To give back, these guys sent three sets of tickets to some Chicago Cubs games for ALS patients to enjoy.
We contacted the Chicago ALS association and they helped find a few families to use the tickets.
The first is the Mitchell Family.
Much Love and Thanks to these guys.
We’re stoked to have you as awesome members of Team Gleason!!
We’ll post pictures from the next game soon.
We climbed above Machu Picchu this morning at 6:00 am where Scott signed the contract to retire a New Orleans Saint.
As you probably noticed in Steve’s blog post Wednesday, he doesn’t do anything half-speed. Sure, ALS is a challenge. He can’t dive head first into a river like he once did. Or pull his own rip-cord after jumping out of an airplane. Or even put on his own shirt or brush his own teeth. But that’s what friends and family are for. This is a team effort. And as our captain, his command is perfectly clear: Full speed ahead. Keep exploring. Smile. Laugh. This ain’t gonna be easy, but it’s gonna be awesome.
Steve is always cooking up crazy ideas. “Let’s go to Machu Picchu,” he says. “Okay,” you respond, almost as if you’re asking a question. This is one of those adventures where you don’t quite know what to expect. There are moments when you even wonder how we’re going to pull this off. So how are we going to pull this off? I actually have no idea. But part of the fun is figuring things out on the go. And somehow, Team Gleason always does.
The majority of the Team Gleason travel party met up in Houston on Tuesday afternoon to board a flight to Lima, Peru. With a group our size — which includes an 18-month old boy, lots of heavy, questionable looking high-tech equipment, a bunch of Type-A workaholics riddled with varying degrees of O.C.D., an NFL Films crew with plenty of their own questionable looking high-tech equipment, and, of course, a man who is 27 months into an ALS diagnosis — there are recipes for disaster everywhere. And even as a few bags get lost, and room reservations get botched, and a restaurant is closed when we need it to be open, one thing doesn’t change: Team Gleason never stops smiling. We never stop laughing. Full speed ahead, no matter what gets thrown our way. That’s the charge from our captain.
Our first group dinner in Lima was at Pampa de Amancaes, a restaurant with Peruvian cuisine recommended from concierge at our hotel, the Miraflores Park. At dinner, Michel asked everyone to share what she phrased a “self-mutilating story” from their past. Naturally, laughter followed.
Then Steve asked everyone to share their top 3 memories from our first 24 hours in Peru. Responses poured out of everybody — Rivers dancing on the dining table; Suzanne’s reaction to news that The Cure was staying at our hotel; Blair’s tour guide performance on the bus ride to Miraflores. Again, more laughter.
In fact, the laugher itself was what inspired my top memory that day. It might seem strange to say this, but one of the “good” things about ALS is that it leads to uncontrollable laughter from Steve when he hears something funny. It’s one of those deep, contagious, on-going belly laughs that actually leaves him momentarily breathless. And I love hearing it. When we discovered that the Team Gleason bus apparently doesn’t exceed 10 MPH, there were a LOT of jokes that followed. (I don’t think the bus driver is my biggest fan right now.) And from Steve, there was a LOT of uncontrollable, contagious belly laughter. That was my favorite memory from our first day in Peru.
Asking for everyone’s “top 3 memories” on the first day of a long journey seems a big soon, right? But it’s not, because Team Gleason is in the memory-making business.
Stay tuned as the Team Gleason Experience continues in Peru and new memories are made every minute…
- Fuji (Team Gleason’s gringo pack mule)
I love exploring this world physically, mentally & spiritually. I most enjoy this exploration in the form of adventure travel. As an ‘adult’, I have been fortunate to spend significant time adventuring. Nicaragua, Indonesia, Galapagos, Easter Island, Tazmania. These are on the list of places I have been. Travel allows one to see their world from a new perspective. The world is diverse, geographically, politically,economically, religiously and culturally. This diversity enriches one as as they return home with new perspective.
As a result, when I was diagnosed with ALS, I made it a point to find a way to continue my adventures. Additionally, I thought sharing these adventures with other ALS patients and then documenting these adventures would help raise awareness on a Global scale. From this concept the Team Gleason Experiment was born.
Our hypothesis is as follows: By producing & documenting epic life adventures for ALS patients, we can positively impact patient families, raise awareness globally, and ultimately, be a catalyst for a cure.
My travel style has change dramatically. In 2000 my brother & I camped in Popollo, Nicaragua with some surfboards, one change of clothes, a tent, thermarests, bananas, bread, and three gallons of fresh water. I went to New zealand in 2004, by myself with a backpack. Today, we (Michel Rivers & I) arrived in Lima, Peru with two wheelchairs, a tank of oxygen, several breathing devices, a feed tube, a catheter bag, a neck brace, pill crushers, an ass pad, and 18 people, not including film crew.
In “the old days” I, more or less, picked a spot on the map, did a little research on the country, language, immunizations, weather, and packed a bag before my trips. I When Michel & were in Chile in 2005, we had no plan other than to meet up with her family friends (Doug Tompkins). We had a few ideas on where we wanted to go, but nothing set in stone. No reservations. No agenda. While in Chile, we made a last minute decision to hop on a plane to Easter Island. This is for another story, but it was the best decision we could have made.
For this Machu Picchu adventure, we have planned nearly everything. I feel like we are on an expedition to Everest. Guides. Oxygen. Evacuation insurance. Last week, I went to Duke University to use their hyperbaric chamber, to simulate altitude in Machu Picchu and Cuzco, its closest major city. We have been planning for months. Well, honestly, Michel & Clare (Team Gleason Co-Director) have been doing nearly all of the planning.
Kevin Swan & I met via twitter. He sent a tweet saying something about ‘kicking ALS ass’ and copied me on the tweet. I went to his website (alifestoryfoundation.org) which was surprisingly awesome. He had some crafty video clips that impressed me. Inspired me. Made me laugh. From that point, we started chatting a little and it was pretty clear that Kevin was determined not to let ALS define him. He is continuing to live his life and has started a foundation to help others do the same. The guy has some attitude. He is articulate. He is persistent. He seems like a good fit for the Team Gleason Experiment. Machu Picchu here we come…