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September 29, 2017 / tgexp

Demijohn Adventure

Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to send the Demijohn Family on an Adventure they will never forget!IMG954500.

pALS Todd Demijohn reached out to Team Gleason for an Adventure his family will never forget. He explains his travels as such:

“Our adventure was to provide my wife and teenage daughters a lasting image of being with their husband and father.  A man that is willing to try to enjoy a wonderful trip as opposed to the person that they have seen lately.  A person that rarely goes outside because of the perceived embarrassment and hardships brought on by this horrible and unforgiving disease.  So off to Kauai we went.

I was very apprehensive about traveling because how would we get to and around the airport, how would I get to my seat on the airplane, how would I use the lavatory, etc.  Just the thought of these hurdles terrified me and I have never been terrified of anything.   

My legs are at a point where I should be using a wheelchair and only a walker when needed in small areas.  But I tried to use the walker at the airport against my wife’s wishes.  That turned out to be a mistake because I fell while just standing in the check-in line and it took two security guards and my daughter to get me up off of the floor and into a wheelchair.  Plus my body went into shock or something because I sweated profusely for several hours and felt nauseous.  So luck would have it that our airplane was delayed for 4 hours and it gave my body a chance to calm down.  Ironic but it worked.

With my legs cramped in an airline seat for almost 6 hour, landing at the Lihue airport was such a blessing and relief.  And the beauty of Kauai hit me right away.  With the warm air and gentle breeze blowing the endless rows of palm trees, instantly this island felt like paradise.

My wife and I had planned for our teenage daughters to zipline, canoe, and paddle board during the trip to keep them entertained and/or give them something to remember. However, by magic or twist-of-fate, they were more than content hanging with their parents on the lanai and by the pool most of the time.  This was not the plan but was more than welcomed for it allowed us to spend more time as a family.  Something that is lacking a bit with our oldest now in college and away all summer working out with the soccer team and our little one practicing soccer most days with her academy soccer team.  So we forced ourselves to swim in the resort pool. Or for me, to sit in the pool and sip Mai Tai.  Darn…

For the first time in my life, I could not swim.  My legs just wanted to float and I could not control them.  This was a very strange phenomenon for me since we have spent countless days swimming in our pool over the last 15 years.  But with the help of my family and the pool lift, I tried to get in the pool every day for the buoyancy of my body in the water is the closest feeling of being “normal” for me in at least a year.

During the research and planning for this adventure, I read that the north end of the island held one of the highest rated beaches in the entire country. Hanalei Bay.  And it didn’t disappoint.  Plush green mountains to the west, jungle to the south, and perfectly blue ocean to the north, it was a gem.  I could not walk in or near the sand but sat in the shade and watched as my wife and daughters played in the water like little kids and soaked up the sun.  I probably enjoyed watching them as much as they did playing.

And after several hours of enjoying this spectacular beach, I suggested that we stop and get sushi for a late lunch.  The drive to the sushi hut took us further west and over three one lane bridges which was very interesting and allowed us to see parts of Kauai that not everyone gets to see.  Plus, the sushi hut was right next to another wonderful beach where we parked and indulged in the beauty and fresh ahi.

On another day, we were determined to go to a beach where we could try to use the beach wheelchair that Team Gleason was generous enough to rent for us.  After some research, we found a recommended ADA accessible beach about 30 minutes from the resort that looked like it should accommodate the wheelchair.  My wife was able to get me to the water but the wheels got stuck in the wet sand, so I got really nervous trying to think about how we would get back on solid ground.  This is where humans can be human and can surprise you when least expected for several people came to offer help to my wife.  With the help from three men, they were able to carry the wheelchair, with me in it, up a small embankment and into a shady area to relax.  Several other people offered their shady spots for me to use.  Just amazing kindness showed to me/us that day.  And in the end, I was able to relax and enjoy the beauty of Poipu Beach.

Other than spending time with my family, and seeing the generosity and kindness of others, I think that seeing the island from a helicopter was the piece-de-resistance.  Not many things affect me like this helicopter tour did.  From the spectacular scenery, to seeing the past lava flows, and a now extinct volcano, I was touched knowing that my girls got to experience this with me.  For the helicopter tour was our last day on the island and capped off an experience of family, beauty, majesty, generosity, and kindness while forgetting a little about the hard realities that we face now.

But what we have discovered through this adventure is how many wonderful people exist in this world.  People that didn’t even know us or our circumstances continuously offered to help.   From those people that helped me get up from a fall at the airport, to making room for me to pass with a wheelchair, to offering to get food and/or drinks for us, to helping carry me in a beach wheelchair that was stuck in the sand, etc. and on and on.  People that had absolutely nothing to gain, stepped up at every instance of this adventure to help.  Just incredible!

I have always wanted for them to see and feel the beautiful things that this world has to offer.  I believe that this trip will be remembered by all.  

Thank you!!!”

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May 26, 2017 / tgexp

Michael Coleman 3 Month Adventure

Thanks to the funds donated to the Gleason Initiative Foundation, Team Gleason was able to sponsor a portion of Michael Coleman’s three month Adventure!photo 2 (2)
Upon Michael’s return Team Gleason received the following write up. Thank you Michael for sharing your story!
“I don’t get depressed, but I do get discouraged. When I get discouraged, I start thinking about the nuclear option. Oh come on now. Don’t act so surprised. I think most people who are diagnosed with a terminal illness have thought about end-of-life options at some point, and I think that’s ok.  It was the first thing I looked into after learning how the insidious disease ALS makes people suffer before killing them. I may never use the nuclear option – most people don’t.  But the thought of having options comforts me, gives me piece of mind, and has actually helped me to survive the continued loss of normal.

As I was saying…I get discouraged especially in winter. In Maine it is cold, damn cold, and snowy and icy. I’m stuck inside, trapped in a weak and failing body, feeling like I’m just waiting. I can’t stand that. This past winter I needed help, I needed a plan.

So I emailed Team Gleason regarding an Adventure.

And now, on January 12, 2017 (seven years to the day from when a neurologist told me I have a terminal illness and should go home and get my affairs in order) my old Saab is packed.  I have checked off all items on my road trip packing list. Family and friends have been assured that I know what I’m doing. I can do this. I am off on a Team Gleason adventure! With family support, words of encouragement from friends, a little bit of luck, and lots of kindness from strangers, I’m confident I can drive myself to Florida from Maine.  I’ll stay with friends along the way, visit my two daughters in NC, spend a month in warm FL,  and have more visits on the way back. My wife will take three weeks of vacation time and join me in Florida, my daughters will fly in for a five-day stay, friends will visit and I will visit friends…….just like any guy on an adventure.

Admittedly I do have some challenges. The non-operating driver’s side window in my old Saab will be annoying, my intermittent gps unit will be tricky, and my old car is sure to be trouble. I should also mention that I can barely walk, have trouble eating without choking, difficulty with fine motor skills, breathing is sometime a chore, and I can no longer speak. But, my spirit is strong and I’m a good driver.  Just in case, however, in a travel bag on the seat beside me I have a ziploc bag that contains my identification, and instructions in case I can not speak for myself.  The packet contains advance directive forms and an organ donor form. I don’t go anywhere without these documents.

Google ALS and you will get a description of Amyotrophic Lateral Sclerosis. A progressive neurodegenerative disease that affects nerve cells in the brain, and ends with paralysis and death. Although it was discovered by a French neurologist way back in 1839 and named after the baseball great Lou Gehrig in 1939, there is still no cure.  Average life expectancy is three to five years – that sucks.  Only ten percent live ten years – double sucks.  Early on, my unfailingly positive wife pointed out to me that averages are calculated by including statistics above and below the median, so there was as good a chance of being above the median as below.   She always believed I would be an outlier on the longevity end of the spectrum. I don’t admit it as often as it happens, but…I love when my wife is right.

So, when I first set out back in January, having said farewell to the security and comfort of home, I cruised along in no hurry. Indifferent to the scolding looks and gestures of contempt from the masses who have to be somewhere, I drove without urgency, savoring the thrill of independence. Introspection as my co-pilot, well provisioned with cookies as my sustenance, I was jubilant.  Traveling solo forces me to interact with new people, experience new situations, and brings opportunities for new problem-solving encounters.

 Not being able to speak is hugely frustrating. Sometimes I abandon the effort in a disheartening mumble of futility, or worse, yield to a feeling of annoyance with someone who is only trying to help. But there are moments of triumph. Using hand motions, and a text-to-speech app on my phone, and lots of patience from the listener, I am able to share a story. It’s not easy, but the difficulty of it only enhances the reward. When I see the smile of comprehension (and relief!) on a friend’s face, there is a sense of normalcy, and hope. Communication is connection.
You know those handicapped assistance buttons on gas pumps? When you press one, no employee ever shows up, but kindness always does. During my round trip of 5300 miles, I learned there just aren’t any full service stations any more, and yet I only had to pump my own gas a handful of times. Inevitably, another customer would see me struggling and offer to pump my gas. If the pump didn’t have a credit card reader, they would even take my card in to the store and pay for me. Despite what is broadcast on the nightly news, people are kind.  They are just waiting for an opportunity to show it.

Stopped for fuel in West Virginia, my car wouldn’t start back up. This could be a disaster, as its getting cold and late. I text my wife who calls insurance. Insurance locates me, and a tow truck is dispatched.  This tow truck driver is a great guy, who loads me and my gear as well as the car onto the tow truck. Together with two helpful bystanders, he’s able to lift me up into the high cab of the truck. This guy even takes me to the hotel, brings my luggage into the front office and explains to the desk clerk that I can’t speak. The next day an old friend drives four hours from PA to pick me up and brings me all the way back a few days later when the car is ready. Problem solved.

While visiting my daughters in NC, I go to their local YMCA.  Although I have no absolute proof, I believe that consistent moderate exercise has been one of the keys to keeping me on my feet and out of a wheelchair this long. But being in the midst of the strong and healthy at the Y, my ego (what’s left of it) goaded me into doing too much. Now I’m exhausted, shaking. Halfway to my car, I have to stop, indecisive. It’s too far to go back inside, but I’m not sure I can make it. I didn’t notice the man sitting on the bench in the sunshine until I heard the words of encouragement in his deep resonant voice. “You’re doing good, you take your time and enjoy this beautiful day”. His words are a beam of warmth momentarily reestablishing connectivity between me and the planet. Focusing on my sneakers, a last-ditch effort to make them move is futile, so I just raise my face to the warmth of the morning sun, acknowledging him by appreciating the beauty of the morning. He got up and came to me and placed his hands on my shoulders to steady my shaking. He offered to accompany me the rest of the way to my car. As he gently lifted my walker into the back seat, his gray beard scratching my cheek, he leaned in to give me a big burley black man hug. He says God loves me, tells me I’m going to have a great day, and goes on with his own. My faith does not mirror his, but he is right. His kindness has already made it a great day.

On one of many sunny days in FL, a tanned and smiling older woman is leaving just as we are walking down the path leading to the beach. After she passes us, she turns back and stops to tell us that the other entrance has a handicap ramp which might be much easier for us. She is very sweet and she is a talker. She tells us her husband passed away and she misses going to the beach with him. She says he didn’t really like the beach, but knew she did, and he loved her so much he would go with her anyway. She lets us know the lifeguards have a beech wheelchair and we should ask for it…but only if I want to.  I’m not sure when but at some point during the conversation she has taken hold of my hand. We can tell she is curious about my condition, so we tell her it’s ALS. Her eyes well up, and she tells me I look good, handsome really, and I have good skin. I lean over and give her a kiss on the cheek. She gets a little tearier and says, “Thank you. I have not been kissed in a long time.” She calls Ruth “Sweetie” and with a sign of solidarity hooks her arm through Ruth’s, and says to her with a knowingness born from experience, “Love is strong. You’re doing good. You’re gonna be ok.”  She leaves, but shows up again a few minutes later.  She digs through her gigantic beach bag and produces two bottles of water. She wants to make sure we enjoy our beach day. We all blow kisses as she heads off once again.

These kindnesses and so many more are what made my trip down and back not only possible but so gratifying. I stayed in Florida for a month. During time spent with my wife and daughters and friends, we rented a boat, went fishing and tiki bar hopping. We dined at open air restaurants, lunched on our screened porch, drank cool beer on warm evenings, watching dolphins pass by with a background of beautiful sunsets.  We idled away hours sitting on the beach together. I rented a mobility scooter and for the first time in a very long time, this allowed me to accompany my family on walks, hikes, bike rides. This feeling of family normalcy and being outside in warm nature was exactly what I had hoped for.

The story of this adventure is really a story of kindness. It’s a story of tomorrow will be a better day. There were so many adventures, warm days filled with laughter, and kind gestures that it’s impossible to find the words to express my joy.  My goals for this trip were to feel warmth, be outside everyday, spend time with family and friends, and be independent. I may have a terminal illness, but my way of thinking is that living with ALS and dying with ALS are two entirely different activities.  I am living with ALS, and yes, I should plan and have options. Yes, I should accept and adapt as necessary.  And yes, I should do what I can to help find a cure. The challenge is to not get caught up in trying to prevent end-of-life at the expense of living life.
Hope is a manifestation of the heart. To ignore the heart is surrender to ALS.  Before I left on this adventure I was letting ALS drown out the sound of my heartbeat. I was spending too much energy counting up my losses. This adventure reminded me that I can continue to have beautifully normal days…..tomorrow will come and if I accept and adapt to daily challenges, I can be a normal, happy everyday guy, enjoying, not counting, his days.
Life is sweet.

Thank you.”

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May 18, 2017 / tgexp

Lillian Eberhardt Technology

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Thanks to the funds donated to the Gleason Initiative Foundation, Team Gleason was able to provide Lillian with a TobiiDynavox I-12+ (communication device) and a Rehadapt rolling floor stand. Thank you!

After Lillian’s ALS diagnosis in November 2016, a social worker at the Mayo Clinic in Jacksonville, Florida told Lillian’s daughter about Team Gleason. She then reached out and Team Gleason was able to provide Lilliam a TobbiDynavox I-12+ and a Rehadapt rolling floor stand.

“Mom has the biggest smile when she uses her speech device. Mom used the device to communicate with PALS we met for the first time. Having the speech-generating device made it easy for a large number of people to hear what [she was] saying.  The device made it easy for Mom to make new friends.  

One of the many custom pages available for download was made by a Mom for her Son that uses funny sayings from a card game.  The first night after the device arrived, my husband programmed that page for Mom to use, and she couldn’t wait to show me when I got home from work. I hadn’t seen her laugh that hard in many years.  

Mom uses the device every day. The stand that came with the device is beautiful and sturdy, and so helpful because Mom is in bed all day.   We programmed fun pages that make animal noises when you touch them. Mom presses the animal noise buttons all day long and through the night as well. Mom has the fronto-temporal dementia that sometimes comes with ALS.   I believe she is exercising her mind more now by actively interacting with device rather than passively watching television.  

The device has been a huge help to our family now, but it also gives us peace of mind for the future to be able to turn on eye gaze when she will lose her ability to write.  Knowing that we will have a way to communicate with Mom gives our family tremendous peace.

-Natalie Squirtiro, daughter of Lillian Eberthardt (pALS)

Here is a video of Lillian and her family thanking Team Gleason but we’re using this post to thank you – thank you for enabling Team Gleason to help pALS across the country!

 

 

May 2, 2017 / tgexp

Mance Family European Adventure 2017

Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to send pALS Sam Mance, wife Sera, and daughters Cora and Julia on a European Adventure they will never forget.

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After ALS diagnosis, life for anyone close to pALS is anything but easy. pALS Sam Mance wanted to share his lifelong dream of seeing Europe and especially the Duomo Steps with his family.

The Mance Family hopped on a flight in Newark, NJ and began their Adventure to Europe. Sam, Sera, Julia, and Cora’s first stop was London, England. Not letting the jet lag hold them back, they took to the streets at once. Opting for a “hop on/hop off” double decker tour bus and Thames cruise, the family was able to sit back and enjoy listening to the tour guides. The family saw everything from the Tower Bridge to the Tower of London, experienced the London Eye, which is a large Ferris wheel along the River Thames, and toured Buckingham Palace.

The next stop was Rome. After a flight delay and getting in late, the family awoke and made way to the Colosseum and various other historic sites which were in walking distance. The family enjoyed gelato, the Trevi Fountain, and finished up Rome with a tour at the Pantheon and the Vatican.

Taking a high speed train, the family made way to Florence, Italy in a little over an hour. Sam, Sera, Cora and Julia experienced local Tuscan foods such as rice balls and were able to see historic sights such as the Ponte Vecchio. The next morning they awoke to fulfill Sam’s lifelong dream – climb the Duomo Steps. Writing a research paper in college about the Duomo as well as being a carpenter for 20 years is what sparked the interest of seeing and climbing all 463 steps. Sam recounts “It was by far the most memorable part of the trip and understandably the most challenging”.

The next stop was Venice; the family arrived and quickly located a water taxi which whisked them away to their rental. Sam made sure to inform us “Word of caution – Venice is maze like in design”. Having one night in Venice and the toll of traveling, the Mances decided to stay in and make dinner as a family. The next morning they made their way to Milan, Italy and then Lausanne, Switzerland through the Alps.

The Mance Family enjoyed the train ride from Lausanne to Paris which provided some down time where they were able to recharge a bit. The Mances told us Paris is very beautiful during the springtime and the Parisians were both friendly and accommodating. Overall, a great experience.

Recounting the entire trip, Sam told Team Gleason “The Adventure has changed my outlook of living with ALS and for the better. The Reason being is that from the outset I was worried that I might not be able to keep up with out schedule but the opposite was the case… We had the Adventure of a lifetime, we made wonderful memories and ALS was a part of it but it didn’t slow us down. Thank you Team Gleason for making it happen!”

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April 21, 2017 / tgexp

Yu Adventure

Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to bring pALS Oscar Yu the Adventure of a lifetime.  
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Some of Oscar Yu’s passions include: family, friends, and live music from the 50’s and 60’s eras. When the Yu’s reached out to Team Gleason in hopes of an Adventure, the perfect combination of the three was devised. After deliberation over the Adventure type, Team Gleason chose to do what is not normally done; send the Adventure to the Yu’s.

Oscar Yu was diagnosed with ALS in December 2015. A family man centered around spending time with loved ones, the most appropriate Adventure was bringing a live oldies band to the Yu’s to share with friends and family. In his Adventure recap, Oscar stated “Team Gleason contributed to my one big passion – live oldies music… I was able to enjoy live oldies music for hours”.

He continued to say “My best friends were signaling to the dance floor and I shook my head no and smiled. They insisted and rolled to to the dance floor while the song “Pretty Woman” was playing. My caregiver was moving my chair on the dance floor along with my wife, family, and best friends surrounding me. Suddenly, EVERYONE came on the dance floor and started dancing”. That moment Oscar shared with his friends and family was one he will always remember – smiles, tears, and “so much love all around”.

“It’s been a month since [the Adventure] and I am still smiling when I think about it. I’m so thankful for that day, the band, the memories… I am grateful to have the Adventure of a lifetime with a live band AND be the sole reason for everyone getting on that dance floor… There have been lots of good things that have happened since getting diagnosed, and I am very blessed to have people reach out with love – like Team Gleason has done”.

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March 10, 2017 / tgexp

Super Bowl LI Adventure


Gravolet5Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to send pALS Robbie Gravolet, wife Rhonda, and Father-in-Law Ed on an eventful extended weekend in Houston, TX!

The Gravolet’s spent a whirl-wind weekend in Houston, Texas where they were able to enjoy and escape their daily routines. Robbie was diagnosed with a slow progressing form of ALS two years ago so this Adventure was just what he and his wife needed!

The weekend started off with, what Rhonda described as “the BEST NASA TOUR EVER”. Robbie and Rhonda both work for NASA Michoud in New Orleans and were able to pull some strings to get a special VIP tour of NASA’s Johnson Space Center. Steve Gleason and some of his Team accompanied Robbie, Rhonda, and Ed on the amazing tour led by Austronauts Ellen Ochoa, Jeff Williams, and (the Gravolet’s “FAVORITE”) Jeanette Epps. They were able to tour the inside of Mission Control – which seldom to never happens!

Saturday night the Gravolet’s joined Team Gleason in attending a Super Bowl Pre-Party where they had photo opportunities with Michael Phelps (all time records for Olympic gold medals) and Friends’ actor David Schwimmer. The weekend concluded with field passes and tickets to Super Bowl LI. They had a “GREAT TIME” and had a NFL VIP tour of NRG Stadium.

“I cannot express what this trip meant to us.  The memories will forever be sketched in our minds.” – The Gravolet’s

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February 23, 2017 / tgexp

Pepper Family Adventure

With the funds donated to The Gleason Initiative Foundation, Team Gleason was able to pay for pALS – Kole Pepper, his wife Jessica, and their two children on a trip to California on a truly memorable vacation.

  “It was a true blessing to be able to stand back and watch, as some of his dreams came true.” – Jessica Pepper 

     The Pepper Family was able to travel from Seattle to Los Angeles for a 5 day, 4 night adventure the whole family could experience together.

One of the first highlights of the trip for the family, was that they were able to go to Disneyland together and even ride several rides as a family, which they have never been able to do before.  The two girls, 11 & 8…were thrilled with getting to meet all the characters, seeing numerous parades and just getting to experience the magic of it all, with both parents by their side and able to participate as well.

Kole has been a life-long Miami Dolphins fan…especially his hero, Dan Marino.  The trip was originally planned around attending a Dolphins game vs. the Los Angeles Rams. Jessica said, “When I asked Kole to make a bucket list, this is the only thing he wanted to do that I couldn’t ever complete for him.  Of everything on this list, this was the only thing that I didn’t know how to do for him. Team Gleason made that happen!!   

  Both the Dolphins and the Rams organizations were BEYOND helpful in accommodating the Pepper Family.  The highlight for Kole…was finally getting to meet his idol, Dan Marino.  Kole was brought to tears.  Mr. Marino took pictures with Kole and the family, signed autographs and really took time to spend with Kole.  This moment, was by far the most memorable part of the trip. “The girls saw their Dad get something he never thought he could.  That memory is etched in our minds forever.  Mr. Marino was so humble and so kind to my husband.  He really seemed to want to talk to him, he seemed genuine and real.   It was a true blessing to be able to stand back and watch, as some of his dreams came true”, his wife Jessica, explained.

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While traveling is difficult and the go, go, go of the trip wore all of them down, they returned home in what was explained as a “State of Bliss”.

  “Thank you to those that made this possible.  To the Gleasons and everyone that works so hard at this organization, who worked endlessly to make sure this dream of ours came through for us.  My husband and children now believe that dreams do come true.”