The Team Gleason Experiment

Steve and Hope Dezember II

tgexp — Sat, 01 Jun 2013 18:08:38 +0000

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.

http://m.facebook.com/hope4steve?id=176860415722366&refsrc=http%3A%2F%2Fsearch.yahoo.com%2Fmobile%2Fs&_rdr

Matthew Olins, Eye Technology

tgexp — Mon, 13 May 2013 20:50:59 +0000

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.

Warmly,

Alex Olins”

Pictures to follow.

Thanks to Matthew and Alex for inspiring us to work even harder.

Cubs Games

tgexp — Sun, 12 May 2013 14:50:17 +0000

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.

Scott retires at Saint during the Team Gleason Experiment in Peru

tgexp — Mon, 22 Apr 2013 17:43:04 +0000

We climbed above Machu Picchu this morning at 6:00 am where Scott signed the contract to retire a New Orleans Saint.

Team Gleason Experiment – Peru Photos

tgexp — Mon, 22 Apr 2013 14:32:49 +0000

The Team Gleason Experiment Peru – Post by Scott Fujita

tgexp — Fri, 19 Apr 2013 13:25:52 +0000

Team Gleason is in the memory-making business.

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)

The Team Gleason Experiment Peru – SG

tgexp — Wed, 17 Apr 2013 22:45:35 +0000

: Team Gleason with NFL film crew and the Peruvian tour guides.

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…

Team Gleason Experiment – Peru – April 2013

tgexp — Wed, 17 Apr 2013 22:38:12 +0000

Team Gleason has embarked on an epic adventure in Peru. pALS Steve Gleason and Kevin Swan along with Michel, Rivers, Scott Fujita, the NFL Film crew and Team Gleason members have started their 7 day trek in Lima. The group will then fly to Cuzco visit the Cathedral, Qoricancha Temple, the Inca fortress of Sacsayhuaman overlooking Cuzco, Qenko and Puka Pukara. Next excursion is to the beautiful Urubamba, the Sacred Valley of the Incas, situated between Pisac and Ollantaytambo. It is an exceptionally fertile valley that was and remains the larder of Cuzco. They will then visit the village of Pisac, founded during the colonial times, and set at the foot of a hill crowned by the remains of an ancient Inca city. They will continue the trip through the countryside town of Urubamba to the ruins of Ollantaytambo. On Day 4 they catch the Vistadome train headed to Machu Picchu, taking in stunning views of the mountains and head into high altitude cloud forest. The destination, the Machu Picchu gateway town of Aguas Calientes, is reachable only by train or air and is nestled among stunning steep mountains shrouded in cloud forest. They will start the Royal Incan trail by crossing a hanging bridge over the Urubamba River to approach the Inca archaeological complex of Cachabamba. After a brief visit of this site they begin a four hour ascent to the ruins of Wiñay Wayna. At this point the trail joins with the main Inca Trail. From there they will be walking on Inca pavement. The Inca Trail cuts across the ridge above Machu Picchu to finally reach Intipunku or Gate of the Sun at 8,829 ft. From here the trail winds downhill into the lost citadel of Machu Picchu. Keep checking back to see post from Team Gleason.

Royce Cowan, Ride to Recovery

tgexp — Sun, 14 Apr 2013 14:23:59 +0000

Royce

Steve was invited to participate in the Ride to Recovery race with his new recumbent bike.

http://www.ride2recovery.com/gulf-coast-challenge.html

Steve did the first leg of the race, starting from the Rebirth Statue. There were a lot of wounded warrior heroes Riding. This is an amazing organization and we were proud to be able to take part.

We thought the Cowans would be interested in participating. After a couple of tweaks to his bike and a booked hotel room, they were “ready” to go.

Read their story below. They are an amazing trio.

http://journeyonwithroyce.blogspot.com/

Bret Gleason, Fishing

tgexp — Thu, 11 Apr 2013 17:23:44 +0000

We got an email from the great Allison Seeber offering to take Team Gleason on a fishing adventure with her family.

“My husband and i would love the Gleason crew to come down and enjoy the salt water fishing capital of the world. Our business, Seeber Charter Services, LLC is offering an all inclusive Charter fishing trip. We own a 24 ft open blazer bay boat and do inshore fishing for redfish and specks. My husband is a licensed merchant marine, and has been in the charter industry for the last 16 years. Your positive energy, Sense of family, and strength to find a cure has been an inspiration to us and hope we can offer your family some fishing fun.
Sincerely,
Alison Seeber

We set her up with the “other Louisiana Gleasons”, none other than Bret Gleason and his family who at the age of 25 was diagnosed with ALS. He just made his 49th birthday this past week.

He’s watched his kids grow, has been in love with his wife Cindy and has lived a beautiful, full life for nearly 25 years, all with ALS. He is a HUGE inspiration for all of us at Team Gleason.

Read about his day on the water. With the money donated to The Gleason initiative Foundation, we paid for their hotel rooms, but otherwise the Seebers took care of everything.
Amazing!!! Big thanks to them in Cocodrie, LA.

From Bret
Good afternoon TG
I just wanted to let you our trip was awesome! Couldn’t wipe the smile off my face the whole weekend. I’m getting all the pictures together to send them to you. We had three people taking pictures and Ali also had her camera Sunday on the boat. Ali and her husband Joey are very nice people and made sure we had everything we needed. I was expecting older people for some reason but they are really young and super cool. The people at the hotel were great to us as well. We caught some monster fish when we got there Saturday and my son Bret was first to catch a fish. It was a 30 lb. black drum and the first fish he has caught since he was 4 years old. That made the trip for me right there but he caught four more Sunday on the boat and Cindy did too. I can’t wait for you guys to see the pictures so I’m on everyone to send them to me asap. Thank all of you at Team Gleason for making this trip possible! It’ll be something we’ll all remember forever.
With love Cindy and Bret

Nephew Kyle

From Ali Seeber
“I just wanted to send a huge THANK YOU to Team Gleason!!! We were more than thrilled to get to spend the weekend with Bret and his family. They are truly amazing people and we felt like we have been knowing each other a lifetime. Our families have a lot in common and feel as if we have made a friendship that will hopefully last a lifetime. Bret and his family as well as Joey, Billy Joe (our deckhand) and I
Had an unforgettable experience and shared stories and many laughs together.”