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.