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December 5, 2017 / tgexp

John Jaeckel’s New Orleans Adventure

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!

One of our first adventures was taking part in the Gleason Classic. For those of you who haven’t participated​, it’s worth a trip to NOLA. There was a 5K, food and drinks, and twerking–yes, you read that right and it was super awesome! One of the highlights was meeting Steve, Michel, Rivers, and Paul at the event. These people eat, sleep, and breath ALS advocacy; I was so inspired! That event was cut a bit short with Hurricane Nate making landfall. One thing to note, living through a hurricane had always been on my bucket list  as well so I was really excited to cross two things off this week!
​We were lucky enough to spend 6 days exploring the wonderful city of New Orleans embracing the food, culture, and history as guests of Team Gleason​. Possibly the most impressive thing about NOLA was the food. We had the chance to eat many unique foods that are specific to NOLA and the culture. We ate at some of the famous and some of the less famous; honestly, all were equally as good. We did a food and history tour and then a cemetery tour. Each of these experience helped us better understand NOLA and why the city is such a magical place. We also spend a day at the World War II museum which was such an impressive display of memorabilia and information about the war. If you haven’t been, you must go and make sure to watch the film! My son in law and I were completely consumed with all the information in the museum. We also were able to get a tour of the Gleason House which provides around the clock care for 9 ALS patients. They have state of the art technology and a staff with incredible knowledge, love, and passion for ALS patients. This allowed me to see firsthand how Gleason Houses or models like this could be operating around the US or even the world! It’s really hard for me to pick a favorite thing from our trip so I’ll narrow it down to two, in no particular order. First, the food was incredible and unlike any week of eating I’ve ever experienced. Second, was experiencing the Gleason Classic. One of my greatest ways I spend my time is doing events with the WI ALS Association. It was wonderful to see how Team Gleason does events–they really bring the energy and passion!
As I said this was my first trip taking my wheelchair on the airplane. We also flew with all of my supplies. One of the greatest surprises of the trip was how well my wheelchair did on the historic streets of NOLA. Everything was pretty accessible but we did need to be aware of accessibility with every tour, restaurant, and activity we were interested in. ​One of the reasons this trip was so enjoyable was because of the handicap accessible van that Team Gleason provided for my family. One thing you take for granted is not being able to jump in an Uber or go about traveling without thinking or planning ahead of time.
​Having ALS is a challenge, there is no doubt. It has stretch me physically, mentally, and emotionally. Some days are better than other. But when you surround yourself with great people, great things happen. I am so blessed with the people I have in my life. I want to thank Steve, Michel, and everyone at Team Gleason for giving my family an incredible trip with memories that will last a lifetime. The work Team Gleason does for patient care and ALS advocacy is inspiring and should encourage us all to rise to the challenge. From the bottom of my heart, thank you for a priceless gift! #nowhiteflags #notquietly “

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November 27, 2017 / tgexp

Graham’s West Coast Adventure

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

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November 15, 2017 / tgexp

Jerry Liguori Hawk Watch

Thanks to the funds donated to The Gleason Initiative Foundation, Team Gleason was able to assist Jerry Liguori, North America’s most well-known authority on raptors, get to the top of the Goshute Mountains for one last hawk watch. 

Jerry Liguori was diagnosed with ALS last year at the age of 50. Prior to diagnosis, Jerry worked as a educator for HawkWatch International, a research organization that studies raptors (hawks, eagles, falcons, and owls) and educates the public about issues related to these birds and how to conserve them. He contributed to the organization by leading field trips throughout Utah and other migration sites in the western USA where he educated others about raptors and shared his knowledge.

Jerry has published several of the seminal books and raptor guides in his field, along with numerous educational journal articles. Since the early 90’s he has spent thousands of hours in the field studying all aspects of raptors across all of North America. Each fall, thousands of raptors across the continent migrate south for winter. “Hawk watchers” are stationed at known locations across the country where large concentrations – sometimes more than 1,000 raptors per day – are known to migrate. At these sites, hawk watchers scan the skies with binoculars and tally the species, age, and sex of all the raptors that pass by. Before his time as an educator, Jerry worked at various North American Hawk Watches, establishing himself over 30 years as North America’s most well-known hawk counter.

The Goshute Mountains in Nevada is Jerry’s favorite raptor migration site. Unfortunately, since his diagnosis, Jerry has not been able to return to the Goshutes. To get to the site, a strenuous 2.5 mile hike up 1,800 vertical feet to the top of a 9,000 foot ridge is required. Although typically afraid of flying, Jerry made it known to coworkers and friends that he would be willing to take a helicopter flight to the top of the Goshutes if it meant one last visit to his favorite migration site. Jesse, who reached out to Team Gleason on Jerry’s behalf showed Team Gleason just how important it was for Jerry to experience this one last time – “I believe providing him with this opportunity would be a small repayment to a man who has dedicated his life to studying raptors and sharing his passion… we (myself and the many others Jerry has touched throughout his career) would be forever grateful to you”.

Jerry had to receive special approval from the Bureau of Land Management (BLM) because the site is located within a designated Wilderness Area on BLM land which means no motorized vehicles are technically allowed. Once approval was granted, Team Gleason was able to assist in covering the costs of the helicopter ride to the top of the Goshutes. 

“My wife Sherry and I drove out to the trail head of the Goshute Raptor Migration site to meet with our friend Jesse Watson and the helicopter pilot, Donovan Owens. The pilot gave us brief instructions before lifting off and taking us up 2,000 vertical feet to the top of the ridge. The view from above was breath taking and inspiring! The Goshute range is known as the most spectacular hawk migration site in the western US. I watched as hundreds of hawks flew by on their journey south. Several came close enough to photograph and allow great views. The biologists trap hawks as well to monitor and tag them, allowing us the opportunity to see these magnificent creatures up close! The most memorable part of the trip was holding a Red-tailed Hawk and releasing it back to the wild (photo above). It left me speechless”.

Jerry’s wife Sherry also reached out to Team Gleason upon their return; here’s what she had to say – “I just want to send you a thank you for your sponsorship of my husband, Jerry’s, helicopter trip to the Goshute Mountains in NV. It was a wonderful day and very generous of your foundation to enable him to do this. Jerry spent many years working atop this mountain counting hawks…he and I both have many special memories of this place…we were even engaged atop this mountain 18 years ago! While Jerry used to be able to hike up that mountain like a mountain goat, unfortunately he could not longer make the hike, and even had difficulty walking on the rocky terrain at the top. ALS is a terrible disease, and robs people of their ability to participate in many of activities for which they are passionate. I am grateful that Team Gleason was able to allow him to follow his passion to the top of this mountain. Thank you so much for all you do. It is a difficult disease for patients and families, but organizations such as yours help us see the positive side and compassion in others”.

Jerry let Team Gleason know “…the adventure changed my outlook. It let me know that Team Gleason and friends and family care about me enough to let me know that no matter how bad I feel, there is always a reason to stay positive and appreciate life!! Thank you so much to the entire team for this amazing day!!”

 

November 13, 2017 / tgexp

Casey Garrah – Equipment

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.

November 9, 2017 / tgexp

Bud Clark’s Alaskan Adventure

Thanks to the funds donated to The Gleason Initiative Foundation, Team Gleason was able to assist  pALS Bud Clark and Family with an Alaskan Adventure, making memories that will last a lifetime!Clark3
We’re back in town, returning to work and reality, but with experiences we will cherish forever, thanks to you and all the folks of Team Gleason who worked so hard for us.
Firstly, we must thank Michel and Steve Gleason for their dedication to helping create memories and easy burdens for people such as ourselves.
My name is Bud Clark.  I am the incredibly fortunate husband of Joan, and the father of two awesome children, Ella (10 years) and Zachary (12 years).  I was first diagnosed in January 2017.  I had known something was off for more than a year – just thought I wasn’t doing enough leg exercises.  Affecting my legs and feet only, and slowly progression, I still felt strong, healthy, and to this day my swimming is mostly unaffected. Upon hearing that startling news, the most recurring thought in my mind was that we haven’t done enough with my children.  I was imagining over and over not being there to see them graduate HS and college, get married, have their own kids.  Worst still, imagining my wife and children struggling to care for me when it is I who should be caring for them, then struggling to move on afterwards.
Working so hard as we have in providing a good life for our family, my wife only now preparing to re-enter the workforce, we just assumed there’d be money and time to do exciting vacations in the future.  Alaska had always been in the back of my mind as a pristine, almost mystic land to see someday.  Now having seen it, I can see why folks travel there, fall in love with its beauty and grandeur, and decide to call it home.
Now, our adventure…
We landed in Seattle around 10am.  Checked out the Pike Marketplace down on the wharf, then Ubered out to the Space Needle.  VIP treatment to the front of the line, then up to the top to enjoy that tremendous view. Hit the Chihuly garden and glass museum, and the monorail to finish out Day 1.
Day 2, we were treated to an unexpected pleasure.  The Woodland Zoo was incredible the way it was built right into the lush local wilderness.  But the highlight of the day had to be the personal tour of the penguin habitat by our guide Celine, who allowed us to carefully pet a 1-month old penguin “chick,” who was already bigger than one of our dogs!  Celine didn’t stop there, showing us the rest of the zoo, with all kinds of insider facts.
Day 3 was embarkation day.  For three of us, myself included, this was our first cruise. [We] had a very smooth experience, with a quick boarding, and welcomed with a very roomy cabin, even with the 4 of us in there.  The kids had 2 dinners and 3 desserts each.  I only had 1 dinner, and 3 desserts.
Day 4, the first full day at sea.  Very lucky – got the Skagway Musher camp excursion reservations this morning that had been closed for last month.  Spent much of this day checking out the ship and the pools.  Dined at the Teppanyaki restaurant onboard – very nice.
Day 5 – Juneau – Our first ever view of a real glacier.  The Mendenhall glacier was spectacular even from a distance.  The weather was drizzly and gray, but the glacier itself was sporting brilliant blue streaks to compensate for the lack of azure sky.  After the glacier, we took the cable tram up Mt. Roberts and dined on Alaskan King crab at the summit restaurant.  Especially enjoyed the local color tour our bus driver gave on the way back and forth from the glacier.
Day 6 – Skagway – Took the early train up the White Pass Railway to the Canadian board. Very cool seeing structures and relics from the 1890 gold rush, and being from Southern CA, could not help but notice the abundance of water and greenery there was everywhere.
In the afternoon, we hit which might have been the highlight of the trip for our kids – the Musher camp.  Got a forest “sled” ride from 16 huskies in training, then got to see some of the “teenagers” using their exercise equipment, including a giant hamster wheel. Finally, we got to hold some very young huskie puppies.
Day 7 – Glacier Bay – The glaciers were very impressive.  Shear walls of ice, blending in well with the nearby rock, except for the blue and white coloring.  Joan arose first and witnesses a calving event!  I was on deck for over 2 hours in the cold wind watching and photographing, as there was something different around every turn.  We are lucky with the weather yet again; it’s cold and overcast, but little or no fog and not raining as it had been all week before the cruise.
Day 8 – Ketchikan – We took the Totem Bight tour first thing in the morning, followed by the Lumberjack show.  While learning and observing the totem art, we were being observed by a bald eagle from on high. Like Joan said, they have as many of these up here as we have crows. The lumberjack show was very entertaining, funny and athletically impressive.
We really lucked out on the weather again. It’s been raining in Ketchikan all week, but just cloudy today and even some sun. Our guides have told us this “not rain” is very unusual.
Had a salmon burger for lunch. There’s so many up here now, I feel like I had to try one – my first.
Zach did Wii sports again with some other preteens on the 2-story screen. Joan and I had dinner at the Brazilian themed restaurant. They keep bringing different meats to your table throughout the evening. You tell them to stop with a red table card, and to resume with a green card.  Best dining experience of the cruise!
After the others crashed for the evening, I went up to watch the sunset and was treated to a dolphin-nado!  Hundreds of them, no exaggeration, swimming in the ship’s wake, lasting about 5 minutes. Incredible.
Day 9 – Sailing to Victoria – Last night was dolphins; this morning was whales!  Joan and I saw them during breakfast.  At least a dozen spouts very far out. They were going off so frequently it seemed like fireworks! Joan visited the ship’s spa this afternoon for a massage and a facial. Zach tried the rock climbing wall, the highest accessible point on the ship. He made it to the top faster than any of the other climbers. Took a cab into Victoria. No tour planned.  Great weather again, sunny and a few clouds.
Day 10 – Seattle again – Off the boat, back in Seattle. VIP treatment again.  First, straight to the front of the disembarkation line. Then another private tour, now at the Museum of Pop (culture) with Matt Marshall. I spent over an hour in the 2 story Star Trek exhibit area. Zach was happy in the Nintendo Indi games exhibit. Ella liked the game and the Horror movie section. Joan like Star Trek too, but went through the Jim Henson exhibit twice!
Now enjoying a Seattle hotel room a tad larger than we’ve had all week.  Beautiful weather again, and we ALMOST got to see the Northern lights, as a solar storm had pushed the aurora as far south as North Dakota the previous night.  I stayed up until 1am, then again from 3:30 to 4:30, on the lookout.  Didn’t catch a glimpse, but was exciting.
Day 11 – Home again – Everyone was glad to see the dogs and to tumble into their comfy beds.  But I think what I enjoyed the most was being able to see friends and family and share our incredible adventure with them.  And to thank them again, for we couldn’t have gotten to that point without their tremendous help.

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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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