Each year, Team Gleason sends a few people with ALS on an extraordinary adventure to the Super Bowl. With the help of Jon Glass at Emory University in Atlanta, GA, Team Gleason was connected to Michael Boland, who is living with ALS. Michael, his wife Louann, and son Candler are avid football fans, so they were perfect candidates for a Super Bowl experience.
Thanks to gracious donors, Team Gleason was able to also send Michael and his family to a private pre-party hosted by the NFL. Michael said a highlight of this event was seeing one of his favorite artists, Martina McBride, perform. Before the game, they had exclusive sideline passes to watch both teams warm up. To add to those moments, witnessing the Air Force Thunderbirds fly over the stadium during the National Anthem was special to Michael and he was fortunate to meet the pilots after the game and take a picture.
Although the game was not as competitive as they hoped, Michael and his family, who are University of Georgia football fans, were thrilled when former Georgia player Sony Michel scored the only touchdown of the game!
And for a final bonus, the family had access to the field after the game for the winning celebration. They saw celebrities like Gisele Bundchen (Tom Brady’s wife) and Rob Gronkowski. Michael said “this trip was very memorable for me and my family. I’m so blessed to have this experience.”
Thanks to the funds donated to Team Gleason Foundation, we were able to assist Nancy on a month long Louisiana adventure where she was able to experience every aspect of her daughter’s wedding. Here’s her story.
Nancy’s daughter, Kaylee, reached out to Team Gleason and let us know how amazing of a woman she is. Kaylee told us it hasn’t been easy for her to be going to school in Louisiana while her mom was struggling back in her home state of Michigan. Nancy was pretty adamant that ALS wouldn’t “win” by causing Kaylee to move back home from the state and school that she loved. When Nancy was first diagnosed Kaylee was thinking about transferring to a school close to home and Nancy’s exact words were, “The Hell you are!”.
Being an only child it was very important for Nancy to make it to her daughter’s wedding day. Team Gleason was able to help Nancy come to Louisiana for a month giving her the time to help with the wedding as much as she can as well as get some quality time together before she gives her daughter away. Kaylee gave us an update on how her mom’s adventure went, this is what she had to say:
“We are so grateful that, thanks to Team Gleason, my mom got to experience every aspect of my wedding, from planning to execution. She was able to come down to Louisiana almost a month before the big day and help me plan out all the details, plus go on adventures like shopping and hitting the trails at their amazing AirBnB, which was 100% handicap accessible. My mom was able to sit outside every morning and evening to watch the river and wildlife. She’s always loved camping, fishing, and being in nature, so to go out an the handicap-accessible trails through the woods every day brought her so much joy. Thanks to Team Gleason, my mom was able to have all the comforts of home with her the weeks before my wedding so she could relax and spend quality time with me before “giving me away.” Having her there also allowed us to make wedding decorations for her wheelchair and headrest, so she could just be seen as the mother of the bride, instead of guests seeing her disease before they see her. She was able to meet many of my new in-laws and spend quality time with everyone in our family all in one place. We are so grateful to Team Gleason for giving my mom an amazing Louisiana Adventure full of memories we will never forget. Thank you. #NoWhiteFlags”.
Thanks to the funds donated to The Gleason Initiative Foundation, Team Gleason was able to send Michael “Boomer” and wife, Ali to Super Bowl LII. Here’s his story:
The joke in Philadelphia is, “I hope the Eagles win the Super Bowl in my lifetime.” I wrote the Eagles a letter in 2017, “please win one in my lifetime, better be this season, as I’m running out of time.” After Carson Wentz got hurt in December, I worried, but after the Eagles defeated the Vikings for the NFC Championship, I scurried. My first call was to Team Gleason to see if there was any chance of getting a wheelchair seat at the US Bank Stadium for Super Bowl LII in Minneapolis, MN. My heart soared when I learned that I would be able to safely attend the big event with my wife thanks to the generosity of Team Gleason. Once that hurdle was cleared, we began working on the rest of the logistics.
Second only to tickets was lodging. Securing a handicap accessible room in sold out Minneapolis, or even within 50 miles, wasn’t going to be easy. We fired up the friend network and my wife’s college buddy, a sports agent in Minneapolis, delivered a wonderful room thanks to the manager of the Sheraton Woodbury St. Paul. After my wife realized that the portable lift wouldn’t fit under the platform beds that are standard in most hotels, the manager worked with his engineer to lift the bed 6 inches of the floor. Presto! A couple of phone calls to the Super Bowl LII Mobility team and we had secured a disabled parking spot and an escort to our seats at the stadium. Next, we hired a caregiver to drive me the 760 miles from Wayne, PA to Wilmette, IL in my wheelchair van. With tickets, lodging and travel accounted for the only remaining hurdle was time. So I called up my uncle to stay with the kids and pets, and hit the road on January 29th.
We rolled into Minneapolis around dinnertime on February 3rd. The bitter cold kept us holed up most of the day on the 4th, but we landed in our parking spot at 5:00 pm and were safely nestled into our wheelchair seats for the start of Super Bowl LII at 5:30 pm. The excitement was palpable and amidst the 67,000 or so fans, we managed to run into friends from both Pennsylvania and Illinois. Every play was filled with anticipation, every turn of events more exciting than the one before. The half-time show kept our energy up and the Eagles fans that let us cut to the front of the companion bathroom line restored our faith in humanity.
There were some bumps along the way. Snow falling on the 6 hour drive to and from Minneapolis. My mother-in-law getting a nasty cold, which my wife picked up the day before departure and then, despite a few gallons of anti-bacterial gel and countless facemasks, found its way into my lungs just as the game kicked off. The one hour (or more) crowd march to the only exit from US Bank, with our fearless escort keeping the fans from getting too close to my wheelchair. Those trials were worth it in the end when, against all odds, the Eagles defeated the Patriots 41-33 in a stunning offensive spectacle. I am so grateful it happened in my lifetime and that Team Gleason made it possible for me to see in person. When you have ALS it’s easy to say that something is too much work, or isn’t worth it, but if its important to you, it’s worth it. No White Flags!
Thanks to the funds donated to The Gleason Initiative Foundation, Team Gleason was able to assist John Jaeckel and family with his New Orleans bucket-list Adventure – thank you! Here’s what John had to say:
“My dear friend from the Wisconsin Chapter asked me if I had anything to do on my bucket list. I thought for a little while and confidently replied I wanted to see the Gleason House in New Orleans. We were connected to Team Gleason and the planning was underway. We had a travel agent book our travel and help plan our trip to NOLA. They coordinated flight and hotel accommodations as well as providing us with a rental van so I could get around the city. I was so lucky to take my wife, daughter, and son in law with me. In early October, I took my wheelchair it’s maiden voyage in the air. Traveling with ALS, as many pALS know, is no joke. We need to pack my wheelchair, charger, breathing machine, shaking machine, etc. While my wife had lots of packing and my family had lots of bags, it was all worth it when we landed and our adventure begun!
Thanks to the funds donated to The Gleason Initiative Foundation, Team Gleason was able to sponsor Graham Harden for his West Coast Adventure with wife, Dawn. Thank you for the support! Here’s Graham’s adventure recap.
Life is as simple and beautiful as a sunset.
A year after my ALS diagnosis, my wife and I celebrated our 25th anniversary. With some gentle prodding from my sister and others, we decided to celebrate beyond just a night out. Neither of us have spent much time on the west coast, so we thought that would be a great area to visit. My sister, a California resident and type A personality, did almost all the leg work on where we would go and Team Gleason kindly sponsored our little Adventure.
As Inigo Montoya from one of my favorite movies says, “Let me explain. No, there is too much. Let me sum up.” Eight days, seven nights. We flew to San Diego, toured the area for three hours with an awesome driver showing us the sights, ate some great tacos (or drank at the restaurant, depending upon your perspective), and spent the night in the Gaslamp Quarter. Early am the next day, we hopped on a train to LA where we boarded another headed for Portland. What a view we had: coastlines, farmland, mountains (even rode by Mt. Shasta early the next morning). Thirty-six hours on a train and we found ourselves in Portland where we took our first Uber to the Pearl District. Rogue Brewing fried pickles rocked, Powell’s City of Books is a treasure, Voodoo Doughnuts the next morning energized and we jumped on a plane to San Francisco. From there, it was off to Sonoma and wine country. We did some wine tasting (or drinking if you do it long enough), dined with friends, slept late, lunched with family, tasted/drank more wine in St. Helena, and topped the valley experience off with dinner in Napa. Breathe…we spent the night with my sister’s family. Boom, the next morning we were off again (my sister really is type A). We drove to Monterey, lunched at Cannery Row, meandered along the 17 Mile Drive, found our way to Carmel Beach at sunset, ate local cuisine for dinner, and slumbered at a beautiful chateaux of a hotel. We awoke, breakfasted in the courtyard, weaved our way to Big Sur and back (equaling two trips across Bixby Bridge), lunched overlooking the 18th at Pebble Beach, paddled around on an unusually glassy Monterey Bay during the afternoon, and finished back at my sister’s for dinner and a bed.
Pictures and videos were taken, but the singular moment of the whirlwind week was easily Carmel Beach at sunset. It was on a Tuesday around 5pm. The Pacific threw us a cool, gentle breeze as we strolled down from the parking lot. The beach was lightly populated with folks walking the beach, some with dogs chasing objects into the surf. My wife and I found a piece of driftwood to enjoy the last twenty minutes of daylight. Here I was enjoying a beautiful moment with the love of my life and, as the kaleidoscope color show neared, I noticed more and more people find their way to the shoreline. I began to wonder what these other people were thinking. Were they happy or sad, angry or content? Were they having a good day or not? I studied the many faces and, though I could not decipher what they were feeling, what I saw on every face was the same. The moment. Everyone had come to the beach to allow this moment to impact their day. Something this simple and beautiful is what life is about. We do a good job of complicating life all on our own, whether it is due to our health, finances, relationships, or jobs. Find your simple, beautiful moments and let them impact your day.
For more information on Graham’s backstory, visit http://gforcegameon.org
Thanks to the funds donated to The Gleason Initiative Foundation, Team Gleason was able to assist the Garrah family – here’s what they have to say.
My name is Cathy Garrah, my husband Casey has ALS. We are the Garrah’s. A family of four stricken with ALS in 2011. Casey Garrah, a forty year old in the prime of his life started to slur his speech and have twitching in his bicep. The diagnosis of Bulbar ALS followed very quickly.
Three months earlier in November of 2010, Casey, an account manager for a large bank lost his job due to the economy crash. Casey, a fighter went back to school to further his education and become a mortgage broker. He was about to set out a new career when ALS reared it’s ugly head and began to steal his voice. Casey could not speak clearly. Friends and family thought he was drunk, he was not….This was ALS.
Over the last 6.5 years our family has suffered many losses. In late 2011 (December 12, 2011) we lost our home due to the inability to keep up with mortgage and bills. Our son came home from school for lunch and the bank had put locks on all the doors. We moved in with my parents who were struggling financially and tried to make the best of a bad situation by helping each other. Our children age 16 and 7 years at the time were forced to change schools, they lost friends, their home, some of their belongings and a sense of their security.
Casey’s speech continued to deteriorate. His body fighting him with every step, every move. What used to be a simple task making a pot of mac n cheese for the kids for lunch turned into tears as he just didn’t have the strength to hold the pot to fill it with water. The changes would come every few months. The daunting task of his ever changing world – trying to find drinking cups light enough for him to lift with a handle, cutlery to fit his curling hands and fingers due to muscle loss, slippers that had support and a serious non-slip sole, the list goes on and on.
Words cannot possibly describe the tears and fears of what was happening and the anticipation of when the next loss was coming and what it would be – the biggest when was ALS going to come for him, living in fear of the 2-5 year life expectancy per the medical field (we know better – showed them)!!!
In March of 2013 Casey began to become unsteady on his feet. He began falling.
March 25th in the wee hours of the morning I lost my father suddenly to a pulmonary embolism – we didn’t know…..it all happened so fast he was gone in less than an hour. That afternoon my mother suffered a heart attack likely due to the shock of my father’s sudden death. While tending to my mother at the hospital Casey fell at home. He banged himself up pretty good. He broke his nose and split his lip wide open. Casey needed a wheelchair, his days of walking were over. A day of huge losses and upset. One of many more to come sadly.
It’s 2014, Casey is now in a wheelchair full time. He can barely eat, his hands no longer work and I am the only one who can understand him. He cannot shower on his own, toilet himself, I am now a mother, wife and full time caregiver to my husband.
Casey received a feeding tube May 2015 which made a world of difference and gave him nutrition that he was seriously lacking. We know it was the right choice for him.
The losses Casey endures are endless. The constant changes can be and are overwhelming. We used to use a stairlift for Casey to transport him up and down the stairs to the shower. This became extremely difficult and dangerous with his body and legs weakening. It would take 7 transfers just to get him downstairs onto the toilet and then into the shower. It would take another 7 more to transfer him back to the main floor. It was just a matter of time before one of us got hurt or both. I recognized the safety issue and contacted our ALS outfit here and an occupational therapist was sent out to help, rather than helping we were told Casey would need to be moved to a facility because our home wasn’t fit/safe for him and we needed to renovate and make an accessible bathroom for Casey on the main floor asap. Devastated, our children devastated, Casey beside himself… We are not ones who ask for help but we had no choice… I took to social media and set up a go fund me account. I needed to save my family, we need to stay together. I asked for help from ALS, we applied for grants we were denied – told Casey didn’t fit their criteria his changes weren’t significant??? WHAT??? He used to walk, he now can’t???
This was our first experience with Team Gleason.
Our friends and family donated, strangers donated we were overwhelmed by the generosity of so many people. We began to have hope that Casey would be able to stay at home. I sought the advice of the occupational therapist and asked for her to put us in contact with renovation companies to have quotes – the quotes were crazy expensive, we were short…but guess what??? Team Gleason – we received a generous donation from Team Gleason. Team Gleason heard our cries of desperation and helped to allow the bathroom renovations to move forward. Casey was able to stay at home, stay clean and stay safe.
It’s 2017, Casey began to struggle with some bowel issues in February which landed him in the hospital with the possibility of a bowel obstruction. Unfortunately, with Casey’s diagnosis if his were to have an obstruction the doctors said that there would be nothing they could do for him – if he had surgery he would need to be put on life support which he likely would not be able to come off of mind you his breathing was ok… they said they would only be able to make him comfortable. Thankfully, we didn’t have to go down that road then.
This past April, Casey once again had some bowel issues – we spoke with the doctor who perscribed meds to help him go – we were concerned about giving the meds in case there was an obstruction – we went to the emergency at the hospital where Casey underwent a CT scan, they laid him flat – something went terribly wrong – he couldn’t breathe – once the scan was done I was let back into the room and pulled my husband out he was pale and grinding his teeth – he had no way of alerting anyone that something was wrong – he had no voice, he was paralysed all from ALS – within the next few days my husband would go into complete respiratory failure – the struggle he went through, the fear of not being able to move, his breath being shallow like drowning….and not being able to let anyone know he was not ok….
Team Gleason was there when my husband suffered complete respiratory failure and came home after a month in CCU/PCU/ICU. He fought to survive. He made it home. His diaphragm gone and on nocturnal bipap. He survived the ever changing staff – some who care, most did not – the hospital staff refused to allow him to get out of bed because of ALS, they didn’t know how. Sadly, Casey’s neck muscles diminished as he lay in bed weakening to such a point that after fighting when I did actually get him out of bed his neck was so severe it tilted to one side he developed positional obstruction of the airways. No one would help, they said this was the disease…On June 26, 2017 our daughter Devin graduated from grade eight. Casey was determined to be there, he was. A picture is worth a thousand words they say. A picture was posted that evening by Casey of myself, our daughter and himself on social media – within a day our phone rang. It was Team Gleason! “What’s going on with Casey’s head?” I explained the situation and the measures we had taken to help him with no avail here at home – ok they said leave it with me. Honestly, not a couple of hours later our phone rang again. It was Team Gleason, Austin from Team Gleason – I was shocked. He said he had learned of Casey and his situation and Team Gleason wanted to help. He proceeded to tell me that that he was going to send out a special headrest with a support strap to hold Casey’s head up properly. I was in disbelief, but he didn’t stop there. Austin asked how Casey was communicating. I explained that we were renting an eyegaze computer but the batteries weren’t charging anymore and we could use the device if it were plugged in all the time which made it difficult because we couldn’t move it with Casey – Team Gleason is going to send him out a new surface pro like the ones Steve has with eyegaze technology and a mount for his wheelchair and a mount for over the bed. At this point I was in tears, it didn’t stop there – Austin then asked how Casey is using the shower I said he has a shower commode from the ALS loan closet but when we received it it was broken, we couldn’t use it in tilt as the straps would let go and break open. He replied, we are sending you a shower commode custom fit to Casey – Are you kidding me? I am now bawling. Austin then asked what Casey was sitting on in his wheelchair – a cushion padded up with towels I replied – he said I am sending you a cushion to, a ROHO, one of Steve’s!
Over the next few days Austin was in contact with us getting all the specs and information and not kidding the equipment started to arrive without delay.
The headrest arrived it was perfect! Absolutely amazing! Casey’s head was now in a position so he could breathe, he could hold his head, he could go outdoors for a walk with his head secured, he went in the van and his head wasn’t bobbling all about and he wasn’t in pain. He even went to Walmart for the first time in months! This headrest not only gave him freedom to be out and about and hold his head without pain but it saved his life as his breathing was compromised.
The computer arrived with the mounts. With lots of help from Austin, Casey was up and running. He now had the freedom to move, go outside with his device in the fresh air and be able to communicate with everyone! He was able to share his feelings, his needs, his wants, his humor!! Simply amazing! He can even change the channels on the tv himself – back in control “hello” can you say, INDEPENDANCE!!! Welcome back you have been missed!
OH to be clean, safe and comfy too. The shower commode chair is the bomb! It’s all spec’d out specially to fit Casey. It has laterals to hold his torso up, it has comfy harnesses to hold him in and keep him safe and it tilts, tilts in space! There is nothing like a shower to make you feel better.
The mount for the over the bed. Wow, you guys know ALS – that’s a fact.
Casey started to become very tired mid July of this year out of nowhere. Casey is on bipap since his mishap back in the spring. He came home with using bipap at night while he was sleeping but with strict instructions that he could not sleep without the bipap on. Sadly, Casey’s heart rate started to increase while being up in his wheelchair. He needed to rest, his breathing was becoming labored despite having bipap on during the day. It was exhausting him (like he was running a marathon) he needed to be in bed. This mount has allowed Casey to be in bed, breath comfortably while on bipap and stay connected with friends and family, alert when he is in need of help or wants something. Without this mount his life would be isolated. He would be staring at four walls and no way of communicating. He has quality of life.
The ROHO! Can you say “we’re gonna pump you up”!!!That’s exactly what Team Gleason has done. They saw our struggle, they saw Casey was falling through the cracks, they saw he was suffering, they saw his will and his fight to survive. They were there in our moments of need and despair, like superheros with the make it right superpowers! Without the love, support and generosity of Team Gleason my husband, my children’s father, a parent’s’ son, a brother and a friend to many would not be here, in his home with us where he belongs. Quite honestly, he might not be here at all….
A thank you doesn’t seem enough to express the difference Team Gleason has made in our lives. It means the world to me and our family to know that there are people out there, an organization who works their butts off to help those fighting ALS. They gave my family a reason to believe when times got tough and there seemed to be no way to be able to scream at the top of our lungs “NO WHITE FLAGS”
A reason to believe, a reason to fight, a feeling we are not alone – people care, Team Gleason cares.
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!
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!!!”
“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.
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.
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!
The Team Gleason Experiment 