Yearly Archives: 2013

Pink Whales Foundation

In mid-October, I received a text from my friend Sally that said her son wanted to raise some money for Kreg. We had Sally, her husband Gary, and their son Tieg over at the house the following Sunday for dinner and we were wowed!!  Tieg is 28 and played lacrosse for Bryant University. He is still playing, is a CPA, and in 2012 he started a non-profit called Pink Whales Foundation.

Check them out! http://pinkwhalesfoundation.bigcartel.com “Pink Whales~ Making Waves- Raising money for various charities and good causes through lacrosse, networking events, and community activities”. Sounded good to us!  Pink Whales had a Fall golf tournament and a Halloween Party already planned and Tieg wanted to donate the proceeds to Kreg.

Barrington friends jumped on board! Kreg’s Barrington Surf Club buddy Dave Smith owns Factory Five Racing, (https://www.factoryfive.com/whats-new/pwf-golf-fundraiser-big-success/ )and drove in a Cobra for one lucky golfer’s Hole-In One prize of a lifetime on the 17th hole.

PWF w Cobra

Kreg’s parents Barbara and Andy flew in from Michigan to play along with about 15 other Barrington friends!

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The day was bright and chilly but there was fun on every hole!  We wished everyone a great round and sent them on their way. Tieg’s pretty girl “friends” were the Troupe de Volunteers that kept everyone smiling!  Thanks Ladies! No one won the Cobra, but our friend Jen Carlson did get a hole-in-one on the 13th! Not too shabby for a lady that just started playing a year ago! Congrats Jen! The tournament was a huge success and Kreg’s parents had the time of their lives. Thanks everyone for your support!

The Pink Whales Halloween Costume Party was next and had 175 crazy dressed-up
revelers and one hilarious evening. We are sorry we missed this!

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Tieg and Dan

At dinner the other night, Tieg and friend Dan, another Pink Whales Director, (both pictured above!) handed Kreg a check for $10,000!!! What a magnificent experience! To know that these young people care so much to work hard, play hard and then GIVE LARGE! We are so glad to know you Pink Whales! Thank you Dan and Tieg! Keep making waves! Let’s do it again real soon!

Veterans Day

Today is Veterans Day, and today it resonates with me more than ever. Through this process, we’ve been confronted with an extremely unfortunate fact.

Veterans are twice as likely to develop ALS than civilians, and no one knows why.

After graduating from the Air Force Academy, my dad served with the Air Force for 11 years. He flew in Desert Storm, the first Gulf War, and in a Special Operations mission. He came out of service with 11 medals, including the Aerial Achievement Medal, Kuwait Liberation Medals, Air Force Outstanding Unit Award, and something he either made up or stole from somebody else, the Air Force Good Conduct Medal.

It’s a tragedy that after our soldiers leave the battlefield, they must still fight for their lives. The ALS Association is paying tribute to these heroes through a Wall of Honor. Please take a moment to read the stories of brave veterans who served then suffered from ALS, just like my dad. It’s incredibly powerful to hear how some of the bravest, strongest people in America succumb to such a disgusting disease, and that’s why we’re doing our best to combat it in every way possible. http://www.alsa.org/advocacy/veterans/

Happy Veterans Day, and thank you to all my family and friends that have served.

Adventures in Vermont

Last block break I was fortunate to fly back out East and spend some much needed time with my family. They had been up in the cabin for a few days with their friends, and I was eager to join them after an incredibly depressing 3 and a half weeks of Intro to Global Climate Change. I took off on Wednesday afternoon and was greeted late that night by two sleepy parents and two hyper puppies.Image

We slept in on Thursday and got a late start to the day. Not exactly the “Palko way”, but that’s alright. Dad pulled out his iPad and began looking for some short hikes that would suit our departure time and his level of energy. We found a couple options and finally settled on one that was described as something along the lines of “a short, leisurely walk around the pond on a semi-paved trail”. Two years ago my dad and I would’ve laughed at this and completely dismissed it, opting for a more adventurous 8 or 9 mile technical trek instead. But when ALS comes along, choosing a mile and a half can be quite the adventure.

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We set off deep into the foothills of Vermont and parked at the trailhead. The puppies were set free and sprinted around excitedly, sniffing the leaves that covered the ground in shades of red, orange, and yellow. We embarked on our walk under a heavy grey sky and crisp cold air. The path was wide and paved, then led to a cement and rock bridge that allowed us to cross over the pond. We walked along with Budd telling funny stories and the puppies trailing along happily. About three quarters of a mile in, we reached a post that was plentiful with signage and directions, and trailmaster Kreg took us in what he believed was the correct direction, and we walked on.

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The more we walked, the further we strayed from the pond we were supposed to be circling. The trail become more and more narrow until it was nothing but a thin strip of dirt singletrack through dense trees. But we brushed it off and continued on. After about an hour of walking and not having seen the pond in a while, it was clear this was not the trail we had intended on taking. But dad insisted “this is exactly where we’re supposed to be”. Alright, whatever you say. We walked and walked and joked and talked as the sky got darker and the air got colder, and we had obviously surpassed the planned 1.5 miles. Dad was doing pretty well keeping up, though was noticeably tired. After a few hours, we emerged from the woods with dad claiming he had been right all along. Leaving the trees behind, we entered the tall, thick reeds growing in the marsh. Fighting our way through, we struggled to find a legitimate trail as most of it was obscured by mud or water. Streams frequently obstructed our path, and Budd would hop across first, then mom and I would hoist dad over to avoid getting him too muddy. The puppies grudgingly trudged through belly deep in mud. We were at the edge of the pond and dad kept leaning over the side (and nearly falling in) to scout out trout holes, which earned him the nickname ‘trouthole’ from Budd. We joked about how ridiculous this “leisurely walk” had turned, as it had been about four hours and here we are completely off trail and battling through thick reeds and thorn bushes. Finally, the road we drove in on materialized just as small flakes began to fall from the sky. Perfect timing. Thinking we were finally done with this mislead endeavor, we trudged another couple feet only to find quite the surprise.

Separating us from the road was a 20-foot wide river. There was no getting around it, and the only way to avoid it was to backtrack the entire four hour hike. Under a darkening sky producing a gentle snowfall, we laughed as we rolled up our pants and faced our final obstacle. With a puppy under each arm, Budd went first and managed to cross through the deepest part of the river, about waist deep. Mom and I took either side of dad and eased him down the rocky bank, then helped him wade across the freezing cold river. With the spark of adventure in his eyes, he claimed he was probably the first person with ALS to cross this river. I’m gonna go ahead and say that all of us were probably the first people to have to wade through that damn river. We reached the other bank and scrambled up to the road, soaking wet from the waist down.

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Naturally, we were about a mile and a half away from the car, and had to walk uphill the whole way in our squishy boots and frozen legs as delicate flurries tauntingly fell on our heads.

Always an adventure for the Palko family. Always.

 

That night we had one of our favorite Hungarian dinners, chicken paprikash. Because he’s losing so much muscle mass, it’s important that my dad is consuming a high calorie, high fat diet. Coconut oil is supposedly really beneficial for him, as it has a high fat content and other nutritious properties. So my mom has been trying to incorporate it into his diet as much as possible. We used it for the broth, and Budd produced some funky dumplings to accompany the soup. Dad was clearly exhausted from the day, and his speech was noticeably slurred (didn’t help that we’d been drinking some microbrews and hard cider). If you have talked to my dad recently, you may notice that it’s harder to understand what he’s saying. ALS weakens the tongue, palate, and lips; all muscles utilized for articulation. It also weakens the vocal cords and the breath support necessary to produce speech. All of these combined impair his ability to speak clearly. The scary thing is that when these muscles deteriorate to such an extent, all ability to speak is lost and breathing becomes more difficult until it becomes impossible. Right now he’s still able to talk, though if he’s 25% drunk by Budd’s measurements, it may be difficult to understand.

We sat down for dinner and he was having a hard time eating. Not only is it incredibly difficult to hold a spoon with his semi-immobile hands and fingers, he has very little arm strength to raise a spoon to his mouth. So I ate quickly then spent the rest of the time feeding him. Never would I have thought at 19 I’d have to be spoon feeding my not-even-50 year old father, but life is unpredictable. He half-heartedly tried to deny my help, determined to feed himself, but I won the battle and force fed him with a smile. The more and more he ate, his energy levels rose visibly and his speech cleared up impeccably. After a full bowl, he was sitting up straighter, speaking clearly, and asking for seconds. It was like some sort of Hungarian miracle. We poured his second serving in a mug and, as routine, stuck a straw in it. He slurped it up happily and kept visibly improving. We sat there cheerily engaged in conversation and ridiculing some of the raw dumplings that Budd produced.

The next day we spent in a little ski village, and he bought himself some flashy new ski pants. He’s so incredibly determined to get out there this season. Skiing is something that really binds our family together. It’s how we’ve spent all our weekends, holidays, snow days and “sick” days. It’s something that his parents passed down to him, and he passed on to my brother and I. It’s a passion we all share so immensely, and I know it’s something he’ll never be able to give up, no matter what. His legs seem to be holding up okay as they’ve still got some strength in them. He’s clearly determined to get some turns in this season, and I’m excited to be right there alongside him.

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When Sunday rolled around it was time for me to head back to school. Budd and I were headed for the airport extremely early in the morning, and we all shared some groggy and tearful goodbyes. It’s really tough going to school 2,000 miles from home. I wish I could be home to help mom, to feed dad and make him laugh, to play with the puppies. But I’m out here, and I love my school and am having the time of my life adventuring in Colorado. So I have to make the most out of the time I get with my family. The days I spend with my parents are special and more meaningful now. We cherish all our time together, whether it’s over a good beer or a 4 mile “leisure walk”. Luckily the whole family is getting together for Thanksgiving, and I’m counting down the days till we’re all back together again.

WALK TO DEFEAT ALS

The Palkos have been busy walking the past few weekends for the ALS Associations’ Walk to Defeat ALS. Up in Detroit Michigan, Team Kreg rallied under captain Krysten, my dad’s sister, for an incredibly successful event. My mom writes, “the sun shone down on us as Kreg, the Detroit ‘Honored Walker’ spoke eloquently to the crowd filled with his high school friends, his parents’ high school friends, and family, family, family! He inspired the crowd and we set off for a great 3K then a full Palkoville cookout afterwards!” Team Kreg raised an incredible $16,000 for the walk, and they send their gratitude to all those who contributed!

Ribbon cutting
Ribbon cutting
Cousins Addy and Olyvia sport their Ts
Cousins Addy and Olyvia sport their Ts
dad giving his speech at the Detroit walk
dad giving his speech at the Detroit walk

Naturally, my team had to beat that $16,000 accomplishment. Palkos are bred for competition; it’s just in our blood.  Luckily, we had the advantage of an extra week to fundraise, so I pushed really hard and published another blog post, and apparently that got people goin’ because before we knew it we reached nearly $25,000. Unbelievable.

The day of the walk we gathered at my dad’s best-lifelong-friend Budd’s house for bagels and donuts as we bundled up in layer after layer to embark on a chilly Denver morning. We taped large 41s to our backs with blue and white duct tape and set off to the park. Snowcapped mountains were visible in the distance as we walked hurriedly to stay warm. When we rounded the corner of the parking lot, I was blown away. There were SO many people there! There were marching bands playing, tents set up, balloons everywhere, music playing, just people everywhere! I had no idea it was going to be such a large event. Our team filed over to our designated table, donning our duct tape uniforms amidst a crowd of experienced walkers in their custom t-shirts (I swear we’re going to have the coolest shirts next year). Three ladies lead an interesting jazzercise warm up as people got registered and settled, and then the event began.

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A peppy woman named Pam from the Association hopped on the mic to make some initial announcements; thanking us all for being there, some notes on the course, what the Association does, etc.  She shouted enthusiastically that with something like 85 teams and 2,000 participants, the Denver Walk goal of $275,000 was exceeded. Next, she announced the top three individual fundraisers, and this lucky gal earned herself top spot. I was called up in front of the crowd as the number one individual fundraiser with $10,915 to my name. I received a nice, shiny, red and gold medal and a big applause from the crowd. I ran back to my table with a big smile on my face, reciprocating tons of high fives on my way back. Next announcement came top team fundraisers. I couldn’t help but smile when I knew that our team would be the winner for this as well.  As expected, Pam calls out that TEAM 41 is the top fundraiser for the event, and as the team captain, I ran back up the podium and received another medal and a baseball bat that gets passed down every year to the leading team. When she announced how much we had raised, I could see people’s eyes widen and jaws drop. This time, the applause was thunderous.

Now I’m sporting my dad’s Air Force football jersey, not one but two medals, and a big 41 painted on my face, so I was certainly easy to spot. And people came and found me. I met several wonderful people from Colorado Springs (where Kyle and I both live) who are all part of a local support group and they sucked Kyle and I right in.  Many people from the Association sought me out to offer me resources, support, and contacts for anything I might need. Strangers gave me hugs, high fives, words of congratulations, bewildered questions on how we raised so much money.  Everyone was asking if dad was there because they all wanted to meet him and get to know him. At the moment I was sad to say he was back in Rhode Island, but I am now happy to report that both my parents were busy having a blast on a night out with some of their best friends, and dad could be repeatedly found where he belongs; the middle of the dance floor.

What hit me the hardest were the people living with ALS that approached me in their wheelchairs. They found me just to say thank you, and reached out with their nearly immobile hands just to hold mine and show me their genuine gratitude. In those moments, I wish that each and every individual that donated to us could have held their hands, to feel the appreciation that we are all taking action to combat this disease, that our money is going to help these individuals. I wish you all could have looked in their tear-filled eyes as they offered just a few subtle words, because they are speaking to you. Everyone who is joining us in this fight deserves that kind of thanks, because we are all battling together. It’s going to take an army (or an Air Force?) to defeat this thing, and it’s so critical that everyone is stepping up to spread the word and take action.

Kyle and I got pulled aside to be interviewed for a documentary that the Association is creating, and talking to the woman who was putting it together, she mentioned how just a couple years ago, ALS was a stagnant cause. There was little advocacy, no treatment, small amounts of research being done, and hardly any awareness. In the past couple of years it has really been brought to the forefront. There are millions of dollars being poured into research for cures, and there are support services and help for people and families like ours who are affected by the disease. To be honest, I didn’t know much about it before dad was diagnosed, and I’ve heard a lot of people say the same thing. This is where we can all help. Get the word out, spread awareness. Awareness leads to conversation, and conversation leads to action. Our walk teams are solid proof of that.

hodge podge TEAM 41

We walked our 3K and along the way I found myself talking to a lot of people who were in my shoes. They all had loved ones who are fighting the battle my dad is, or worse, have succumbed to the struggle. It was almost unbearably heart-wrenching to hear their stories, there is nothing I want more than to keep them just that; stories: things of the past. ALS does not belong in our future, and I hope to never have to tell stories like theirs.

Like I said, Palkos are competitive, we’re fighters, we win. I think we can be the ones to beat this, or at least we’re all going to put up a hell of a fight.

I just want to thank everyone who donated, has written us kind words, and have kept our spirits high. I also want to thank everyone who came out to the walk, including four of my best friends from CC, all of Kyle’s Air Force buddies, all of dad’s old friends who came along, and an angel on earth, Budd. We all had a hell of a time together.

Now I’d like to leave you with something that I hope will blow your mind like it did mine.

Up in Detroit, Team Kreg raised about $16,000. Here in Colorado, TEAM 41 reached nearly $25,000. Combined, the whole Palko family raised…wait for it…..wait for it…… $41,000.  Not only is this an astonishing figure, it just so happens to be dad’s number. It’s almost too crazy to be true. 41 been his football jersey number forever and it’s just that number that’s stuck with him throughout life. Collectively, all of our efforts and contributions amounted to this miraculous figure. We are all part of a whole, and when we came together as a whole to represent dad, look where it got us! If that’s not a sign, I don’t know what is.

–Gabby

Injury and ALS ………by Gabby

Last year I tore a ligament in my left ankle that put me in a big, clunky, stinky boot for a few weeks. With the boot on, I didn’t get to ski, hike, or run, and it made me tremendously sad. But my ankle healed, and I ended up skiing 41 days last season, so it was all good.

Then the other day I was running on the track after class, running 50 yard sprints (my former track coach would be so proud) when I felt sharp shooting pains in the ankle and had to stop. I realized I had probably strained the ligament, and limped away from the track with my head down. I iced and elevated it while frustration washed over me. I probably won’t get to run for a week, and for a former athlete that’s some sort of torture. Any athlete that’s ever been injured can attest to the aggravation that comes with being injured. One stupid tear or break keeps you on the sidelines for however many weeks or months, and you watch your friends and teammates playing, running, hiking or skiing without you. It sucks. You count down the days till that cast is replaced by a cleat, the crutches are out of sight, the padded clunker boot is replaced by your beloved ski boot. Then soon enough, you’re back at it, happier than ever to be active on the field or mountain, and you have a much deeper appreciation for the activities that bring you to life.

Sitting in my room with ice on my ankle, wallowing in my sorrow of a minor injury, guilt hit me like an oncoming train.

How the hell do you think dad feels?

I think my dad has played nearly every sport there is. I’ve heard the most ridiculous stories about swimming, boxing, basketball, track, biking…everything. He’s played football since what, 8 years old?, all the way up to a D1 Air Force Academy player. The guy surfs hurricane waves, hikes whatever is in front of him, and apparently shuts off his reading skills when ducking bright red ‘CLOSED’ ropes on ski mountains. I watched him dangle off a cliff in the middle of the woods with skis on for heaven’s sake.

He has obviously had his fair share of injuries, but he’s always bounded back from them. Now he’s faced with any active person’s worst nightmare, a sort of permanent injury that he might never recover from. ALS is literally robbing his body of the muscles that have carried him through his best life experiences. He went from swimming 2 miles across the Narragansett Bay to not being able to swim without a floatie. He went from running double digit miles to hardly being able to walk the dogs around the neighborhood.  This isn’t meant to degrade him and I’m not trying to be pessimistic, but I just want to show some perspective of how nasty this disease is. As far as ALS diagnoses go, he’s actually pretty lucky. His digression is moving at a slower rate than normal, and we are so lucky that it is. This summer he and I hiked one of our absolute favorite trails, The Lonesome Lake trail in Franconia, New Hampshire. If you saw him power up that mountain you would never believe he has ALS.  He was moving at a quick pace that I was astonished at, and that’s pretty impressive seeing as I’ve been hiking in Colorado for the past two years now.

But simple tasks are now extremely hard or even impossible. Brushing teeth, holding a glass of water, buckling a seatbelt, tying shoes, and cutting food are all amongst those things. So we are adapting. My dad can no longer run like Bigfoot on the treadmills in the gym with footsteps so heavy the whole floor would shake and everyone would look, but he is in physical therapy working to maintain some strength and mobility. He has undergone several different treatments to attempt to slow the disease, and we are hoping he’ll be involved in an incredible stem-cell trial at the end of this year called Brainstorm (http://www.brainstorm-cell.com/).  We’re doing everything we can to fight this, and just trying to make the best out of whatever we can’t control.

He bought a pair of sick lightweight Black Diamond skis and minimalist Dynafit bindings, and he is determined to be cruising down the mountain again this season. Whether it’s on his own two feet or someday in a sit ski with me guiding him from behind, we’re gonna keep him doing the things he loves.

Sometimes life sprains your ankle. Other times, it deteriorates your entire body. But I guess the moral of this story is if you can’t hold a glass of your favorite beer, stick a straw in it. No chance he’s giving up beer, that’s for sure.

A letter to our friends and family

Hi everyone,

Kreg and I would first of all, like to thank all of you for your thoughts, prayers, and kind words of encouragement for this family. We can’t tell you how wonderful it is to know that so much support is there for us.

As you may know, Kreg has had many challenges in his incredible life and he is now about to face the ultimate challenge.  We think he is up to it. As one of Kreg’s good friend’s recently wrote to him: “Kreg, you are the strongest person I know, if anybody can beat this, you can.”  We couldn’t agree more. Amyotrophic Lateral Sclerosis is not only going to challenge Kreg, it is also going to be a challenge to the whole Palko family, and we want to include you.

The purpose of this website is to keep everyone informed and updated not only on Kreg’s progress, but on various fundraising efforts for ALS and the progress of new and exciting innovations in the race for a cure. We plan to write a monthly update on all things surrounding the family and Kreg- with lots of information on the disease and the innovations that we will try.  Please check in and contribute with your own personal thoughts and stories- (that are for all to read!) celebrating Kreg’s world.

Please know that Kreg is surrounded and supported by life-giving medical professionals and game changing innovators in Providence (Rhode Island Hospital and the VA) and Boston ( Mass. General Hospital) and has a incredible primary care physician in Dr. Andrea Arena In Barrington.

Kreg is not afraid of experimental medications and clinical trials. He is willing to do what he can to not only to potentially help himself, but maybe he can help others as well. He is currently taking an experimental drug called Gilenya to slow the progression of the disease, so  keep all fingers crossed.  We are hoping that he will be chosen to participate in a Stem-Cell research trial at Massachusetts General Hospital in early 2014 called Brainstorm. We will continue to investigate all modes forward- and please don’t hesitate to help us here!

Many of you have voiced the desire to help the Palko Family financially. We have chosen two funds that will directly impact Kreg in his journey- one medically and one assistively.  Please visit the fundraising page of this website for further information.

Thanks to our close friends Kris Mineau and Ken Rosenquest, friends from Kreg’s Air Force Academy days and now a part of his professional world, whose generosity of time and support have helped create this incredible website where we can all journey through this together.

Kreg and I hope we haven’t caught you off guard with all of this but, we have to tell you~ ALS catches you off guard. Thanks for taking this challenge with us. Chin up and we look forward to hearing from all of you!

All our love,

Elizabeth and Kreg