On Sunday, February 23 Kyle and I and some of our Colorado friends and family will be joining the ALS Association at Eldora Mountain for their annual Ski to Defeat ALS event. ALS continues to cripple the bodies and take the lives of the skiers and athletes, and we’re here to fight back.

Skiing is an incredibly unique experience in the way it brings a family together and passes down from generation to generation. My dad has been skiing his entire life and it may be the biggest thing he has given to my brother and I. Since we could stand, we were put on planks and whizzed down the mountain between my dad’s legs. We grew older and performed pizzas and french fries. We followed dad through little trails through the trees and watched him send spread eagles off jumps and followed suit. Sometimes we’d wiped out and he’d clean up the yard sale. He took us down steeps, bumps, and woods, constantly pushing us and making us better and leaving no room for fear. We would chase after him and try to spray him when we stopped, but somehow he always got us back better.

Skiing is something he loves so passionately and has completely engrained in my brother and me. Being a skier is one of my largest identities and has had insurmountable influence on my life and passions. Sharing his love for the mountains has completely shaped my life and led me to where I am today. His passion for adventure, competitive drive, and quest for fun and laughter lives on through my brother and I as we race each other through the trees or in the backcountry.

Sadly, ALS has stolen dad’s ability to ski.

The seasons have been an interesting way to measure the impacts of this disease. The 2011-2012 season he was shredding hard. At this point I was always right on his tail, but he would still manage to beat everyone down the mountain. The highlight of that season was our backcountry venture to Mt. Washington, New Hampshire. With his skins on, he powered straight up that trail with ease and skied down a happy man. I recently completed the same venture, and let me tell you it was not easy. That season, dad was going full strength and ripping hard.

Skinning and skiing Mt. Washington in 2012

Last season, things were drastically different. The man who once ripped through trees, blasted through bumps, straightlined down groomers had slowed down tremendously. Gloves were traded for mittens since he couldn’t really move his fingers. He could no longer grip his poles or use his arms for balance. I had to buckle his boots, tie his laces, and zip his jacket. Slopes that he used to fly down became challenging. The legs that used to skin straight up mountains got tired after just a few runs.

But he was still out there pushing himself to the limits.

Winter Park 2013

This season he has not hit the slopes. With the stem cell trial over his head he has to be extremely cautious. As we’ve already seen, any small imperfections can interrupt or completely halt the surgery, so he has to be careful to avoid injury. He is still walking, but with great difficulty. He’s already lost most upper body strength and movement, and now his legs are deteriorating quickly. He has a hard time balancing, walking, and standing up from a sitting position. It doesn’t look like he’ll be on two planks this season.  But we’re hoping this stem cell surgery pulls through and he’s skinning up mountains once again. In the meantime, he’s still happy to belly up to the bar and enjoy an après ski brew, straw included.

If you’d like to join Kyle and I as we ski in honor of those who can’t, you can register here. http://web.alsa.org/site/TR?pg=team&fr_id=9860&team_id=270206 

Love,

Gabby

Sorry it’s been a while since our last post, but things have been incredibly busy for each and every one of the Palkos. My dad wants to start off by thanking everyone for the cards, gifts, kind words, well wishes, and secret Santas who graciously enhanced our Christmas. The consistent generosity displayed by friends, coworkers, neighbors, and strangers is impeccable.  Your support is undeniably appreciated.

We spent the holiday up in Vermont, and it was one of the least Palko-like vacations I’ve ever experienced. This meant sleeping in as late as we wanted and actually choosing which outdoor activities we wanted to partake in. The parents spent their days snowshoeing with the pups, and Kyle and I skied a bit, but for the most part we all just relaxed in the house together. Christmas night was spent at our great friends the Pattons’ house. Chris Patton, better known as CP, has been one of dad’s biggest supporters during all this and certainly knows how to keep his spirits high. We had a blast playing “name that song” and dad, of course, was the reigning champion. Perhaps my favorite moment of the week was the final day when my mom was cleaning out the fridge an hour before leaving. She pulled out a pint of unopened Ben and Jerry’s that had been forgotten and couldn’t be brought home. Dad and I took one look at each other then proceeded to tackle the daunting task of finishing it, one spoonful of cookie dough and brownie bite at a time.

trailblazers

This season we were blessed with what could be the ultimate Christmas miracle. Dad was lucky enough to be selected for an experimental stem cell trial at Massachusetts General Hospital. With the help of Dr. Berry and the rest of the staff, my dad has been pushed through a rigorous screening process to enable him to be eligible for a stem cell transplant. Spending 2-3 days a week at the hospital with countless MRIs, ultrasounds, and constantly being poked, prodded, and tested, dad claims he feels like Steve Austin. “We can rebuild him, we can make him better.”

Stem cells have the potential to cure the effects of ALS. More details about the transplant and this technology can be found here. This is an experimental process and has only been done a handful of times at other hospitals. Some of the patients witnessed high success rates. In one case, a man received 500,000 stem cells in his spine and went from being wheelchair dependent to walking again. Dad will be receiving the largest dose given yet, about 7 million cells. Who knows, he may come flying out of the hospital!

The surgery is tentatively scheduled for January 15^th, but it’s a very meticulous process and everything must fall precisely into place in order for it to happen. If the surgery does go through, dad will be hospitalized for 4-7 days in ICU.  We are incredibly lucky that he has been selected for this trial. His role in this experiment could pave the way for a cure for ALS. We will do our best to keep everyone updated throughout the next few weeks. So please cross your fingers, say your prayers, and send your positive vibes to us in Boston for an outcome that looks something like this: http://www.youtube.com/watch?v=TRtlkcQ6brE

-Gabby

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.

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.

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.

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.

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.

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.

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.