Even though I wasn’t able to attend the Idaho Potato bowl to watch Air Force beat Western Michigan, my jersey was there in full spirit. In Troy Calhoun’s post-game interview with ESPN, there it was in its full glory, telebombing Troy’s interview.

Don’t blame me Troy, blame Steve Senn!!

Kreg’s old friend from  Dearborn High School, John Stevenson, is now a middle school teacher in Austin Texas.  Look at what he and his students have done.  It’s an incredibly heartwarming act of awareness, support and kindness.  Thank you Canyon Vista Middle School and Doogal. Even though none of these kids have ever met Kreg, they are an inspiration to him.

http://youtu.be/o1HxnGTzQQw

Our good friends at the Pink Whales Foundation present the KP41 Fall Classic!

The Pink Whales will be hosting their annual Fall Golf tournament supporting ALS Awareness and Research. 100% of the proceeds will go to families that are battling ALS and need the support.

Please join us Sunday, October 19th @ Indian Pond Country Club. This is a 4 man team, 18 Hole Shotgun tournament. Registration will start at 11 AM with a Shotgun start at Noon. There will be plenty of contests and prizes to win throughout the day!

You can register here.  Thanks for the support, and we hope to see you there!

Please join me! Sunday, August 31 at 10 a.m. in Warren, Rhode Island!

I can’t think of a better way to spend a Sunday morning that to go for a run along the waterfront and follow up with a Guinness! I highly encourage you to pre-register at http://www.finishforaguinness.org/ 

I will cross the finish line and drink one for my ALS community. Hope to see you there.

Cheers! Kreg

A minute and a half video of dad and I is all of a sudden plastered all over the internet. At first we were excited about getting 100 likes on Facebook and having people call us out in their videos, then a few days later dad bursts into tears because he sees his face and his message on the Huffington Post. The ice bucket challenge is social media activism reaching unprecedented levels, and I’m witnessing it all first hand. Not only are ALS organizations across the nation receiving massive increases in donations, but the Palko family is as well. Complete and total strangers are reaching into their pockets to help out a family they don’t even know. Strangers are reading this right now because of the amazing power of social media. In the past week my inbox has been flooded with hundreds of messages from people who saw the video and had something nice to say, some information to share, a story to tell. About 100 of those messages came from people whose lives are directly affected by ALS. Dozens of those are sons and daughters of parents who are suffering from ALS or who have already passed from it.

Before all of this social media madness, I didn’t know anybody else in my shoes. I have amazing support and incredible friends, but nobody quite understood what it’s like to be experiencing this. And now, thanks to our video going viral, I’ve been in touch with other people who know exactly what I feel like. They know how hard it is to leave home and go to college when your parents are home suffering. They gave me a hint to call my dad’s cell phone and let it ring through to his voicemail so I hear the message he recorded a few years ago and remember what his voice used to sound like. They have stories about their dads running wheelchairs into walls. I feel less alone.

Now what would the internet be without comments of criticism? To those suffering from drought on the west coast, I sincerely wish I could give you all the water that’s been pouring down on the east coast. I wish all of these buckets dumped over people’s heads could be dumped over your gardens, farms, and rivers. Maybe we can start dumping buckets of sand over our heads to raise awareness and demand action for drought and climate change. My entire academic life is devoted to environmental studies, so I would be thrilled if the next big social media campaign targets these drastic problems.

For those who are annoyed with the ice bucket challenge taking up your news feed and for those who think this really isn’t doing anything, I first want you ask you if you knew about ALS before this happened. If you did, great! If you didn’t, well now you do! This disease is receiving more attention than it’s ever gotten. ALS organizations across the nation have received millions of dollars over the past couple days. Those donations will be channeled into research that will hopefully figure out this disease. Because right now there is almost nothing known about ALS. We don’t know how it’s caused, we don’t know how to treat it, and we sure as hell don’t have a cure. This matters because maybe one day you or your father or mother or the love of your life will be diagnosed with ALS. It will be the most terrifying diagnosis you ever receive. Because your life might end up looking like this. Because you will learn that you have about 2-5 years to live. You will see your hands stop working, your legs stop walking, your voice stop talking, your breathing disappearing. But your brain will still function perfectly and it will have to process how insanely debilitating and depressing it is to watch your body slowly turn to mush while your loved ones surround you in confusion and sadness.

Here in the Palko house we have good days and bad days, just like everybody else. We laugh when the dogs jump up on dad’s wheelchair, drink good beer, and watch Jimmy Fallon. But sometimes we have really, really bad days. My mom’s birthday was earlier this week. When she left to go on an hour walk with her friend, the first time she’s been able to leave the house and do something for herself, dad and I were alone to decorate and prepare her birthday dinner. As I scurried around the house trying to get everything in order, I stepped into dad’s room to find him quietly crying. I ask what’s wrong and he says he just wants to help. He begins to sob, I begin to sob. We laugh at each other crying and then cry some more. He just wants to set the table, to hang some streamers, to sign her birthday card and buy a gift for my mother. My incredibly strong, amazing mother, who works tirelessly to make sure we keep a roof over our heads and wheelchair ramps under our feet. Who serves as dad’s arms and legs. Who gets up 3 times every single night to go downstairs to check on him, flip him over in bed, adjust his covers. Who drives him multiple times a week to Boston so he can work with physical therapists and blow doctors away by walking more than they expect. My mother is the most under-recognized person in all of this, and we would be nothing without her.

#tbt

But she’s tired. We’re all tired. We’re sad, confused, frustrated, aggravated, and exhausted. We fall into fits of uncontrollable crying because this is hard, but life is hard. It’s hard for everybody on this planet. Every day we remain alive is a damn miracle. It’s overwhelming to see what’s going on in the world. I wake up to news about Israel and Palestine, an immigration and refugee crisis at our border, blatant racism alive and well in our country, California being sucked dry, Robin Williams dead…

Everybody is just trying to survive on this planet. And while life is hard and overwhelming, we survive. Because the human spirit is strong and triumphs adversity. There is tremendous good in the world. I’m seeing it right now. Friends, family, and complete strangers are reaching out to show they care. I wake up to messages of people saying how inspired they are to help, how they donated despite having almost no money in their bank accounts, how they offer words of comfort and solidarity in a struggle that once seemed impossibly tough, now seems possible. I find strength and courage and hope in these people’s words. They encourage my family and me to be brave and set an example others facing challenge. Good acts propel this world forward; whether it’s saying one nice thing to somebody who needs to hear it, volunteering, protesting for a cause you believe in, being a friend to someone with depression, or donating money to help fight ALS or any other cause that’s important to you. People are always looking for stories that ‘restore their faith in humanity’. How about doing something every day so that your faith in humanity is constant and doesn’t need restoring. Live compassionately, and in the words of one of my heroes Neil deGrasse Tyson, lessen the suffering of others. Whatever you do to help another person survive on this crazy planet is doing good for not only them, but for you too.

The ice bucket challenge will probably die down soon, but our fight with ALS is just beginning.  Now that so many people are more aware of ALS and these organizations have some money, maybe we can start some groundbreaking studies to help find a cure. The progression of science and the medical world have accomplished incredible feats. We’ve eradicated deadly diseases, prevented viruses, treated cancers, cured illnesses. Now it’s ALS’s turn. Let’s turn this terminal illness into a treatable one.

I hope more than anything that dad’s 8 million stem cells kick in and the next video to go viral is of him skiing or surfing again. Or of Pete Frates tossing a baseball to his expected child, or Steve Gleason throwing a football back in the stadium where he belongs. I hope it’s a video of a person dying of ALS all of a sudden able use their arms again to hug their families and use their own voice instead of a computer’s to say I love you.

When that video comes out, you will look back and remember why the ice bucket challenge mattered.

-G

It’s all over the news. Politicians are doing it, the Dropkick Murphys are doing it, the Boston Bruins are doing it, the Patriots are doing it…. Thanks to Pete Frates and Team Frate Train, ALS awareness is blowing up over social media. Every time I see a new video I thrust my phone in dad’s face to show him one more person giving a shoutout to ALS.

For those of you who may not be familiar, there is a challenge going around on Facebook where people are dumping buckets of ice water on themselves and calling out three friends to do the same, all in the name of charity. Team Frate Train immediately scooped up the challenge and began sharing the word about ALS. And awareness matters. The ALS Association and other ALS organizations have seen unprecedented increases in donations ever since the ice bucket challenge started. Those donations help affected families and fund research. No one knows what causes ALS, and there is no known cure. The average life expectancy after diagnoses is 2-5 years. We need research.

So mom dad and I have watched several friends, family members, and celebrities dump buckets of ice water on their heads, and we started to feel a little left out.

With a self nomination and two buckets of water, the ALS ice bucket challenge was brought to a whole new level when the badass ALS patient himself was drenched in ice water. You can watch the video here.

Initially, I offered to just dump the bucket on myself and let dad do all the talking. However, he immediately insisted he be included in the challenge, because he’s “not weak”. Nope, he certainly is not.

“I can’t stand by and watch everyone pour the ice on their heads without joining in myself”

Although ALS is robbing his body and his voice, it’s certainly not ruining his ability to have fun. Keep the awareness and the buckets flowing!

-G

First off, my family and I would like to thank everyone who donated their time, effort, and money to make the ALS Evening of Hope such a great success. My dad would like to especially thank all of the volunteers from Barrington who worked so hard to set up the beautiful night! We had over 500 people come out and support my dad and the fight against ALS. Overall, the event raised over $140,000 for the Rhode Island ALS Association, the most ever! And the success can only be attributed to all of you! A story about it is here.

Well, after an unexpected three month stay in the hospital, I’m happy to report that Kreg is back home! As many of you know, there were complications from the original surgery so they had to go back into his lower back to relieve some of the pressure and inflammation. The surgery really impacted his ability to move and set him back a couple of months in recovery. However, he spent the last month and a half at a rehabilitation hospital in Boston where the physical therapists worked every day to help him regain his strength. His strength is slowly returning to his legs and he’s confident that he’ll be walking in a short time.

The transition from the hospital to home is difficult. We’re slowly getting into a good routine but everything has to be done much slower now. Thankfully, the neighborhood and friends have been so supportive dropping off dinner and groceries. You guys are life savers! We also have this new, bad-ass van to drive around in. The next few weeks will be dedicated to perfecting the routine and just integrating my dad into real life again. I think one of the things that makes him most happy about being home is that he can have a beer anytime without hiding it (looking at you Lafayette Court). He’s cheerful and if you’re around in the neighborhood, you’ll probably see him walking the dogs or inspecting the lawn. Even with ALS, you can’t stop the pride he has in his immaculate grass.

Even though we had our setbacks, we’re in a better place because of everyone. From the Air Force buddies traveling across the US to visit, the neighbors dropping by to help with chores around the house, to everyone around the world sending kind words of encouragement, I thank you for making this journey that much easier for my family.

We’ll keep posting updates on the therapy and progress so keep in touch!

-Kyle

Work, work, work. Work some more. And did you notice it’s done with a smile? This is how I would define a day in the life of Kreg Palko – Spaulding Rehab style.

I had the honor of spending the day with Kreg last week. When I arrived at his room at 10:45, he had been up for awhile, and was checking out the view of the active shipyard from his window. It was a bluebird, almost summer day. The kind that beckons you to come out and play.

Spaulding had other plans for Kreg, though. Leslie, his part-time OT, arrived shortly after 11:00 and we headed down to the therapy gym. From a personal trainer standpoint, the place was like heaven.  I could have watched and learned all day. For Kreg, and the other Spaulding residents, this was a place of mixed emotions. The hope of improvement comes with a cost. Working so hard that 45 minutes seems like an eternity; giving all your might and focus to stand from your wheelchair and then sit on the therapy table. Trying to make your muscles remember how to do a crunch. Then realizing that you are using your newly awakening shoulder muscles to help push up from a sidebend. Victory! Small victories everyday that hopefully lead to that breakthrough.

After watching Kreg give absolutely everything he had during the session, I figured he’d be beat, but in typical Kreg style, the wheelchair went in to Drive 2 (read: fast) and we boogied back up to his room. We took our lunch to a windowed break room on the other side of the building that afforded a magnificent view of Boston, and our focus turned to news of Kyle and Gabby, plans for the house, and making plans for life after Spaulding.

With a little more than an hour before the next therapy session we headed out to enjoy the gorgeous day. We strolled down the boardwalk that surrounded a now quiet park full of crazy playground equipment. Around the other side of the Spaulding building we stopped in a peaceful garden.  Kreg pointed out where, just the day before, he and Elizabeth had ridden recumbent bikes all through the quiet neighborhoods of Charlestown. Of course, Kreg’s therapist was riding with him to steer, but Kreg was doing the work with his increasingly strong legs. Victory!

Before we knew it, Leslie was back to take us to yet another therapy room. Kreg maneuvered his chair right up to a special adaptive bike that allows him to sit in his wheelchair while his feet pedal.  15 minutes at level 3 of pretty solid pedaling. The first time he used this machine at Spaulding the motor had to do the work. Victory!

With his feet barely out of the pedals, Kelly and Kristin met us for pool therapy. Once again, Drive 2 and we were flying through the corridors! (does Kreg do it any other way? ) The pool was 91 degrees and looked so inviting. Kreg mustered his strength to go from his chair into a power lift that would lower him in to the pool. And then, aided by the buoyancy of the water, Kreg walked. Across the pool. And stood to do even more shoulder and arm exercises. Then he floated on his back and kicked his way from one end of the pool to the other. And back. Smiling through the excruciatingly hard work.  Always willing to do what was placed before him. Never complaining. He WALKED. Across the pool. Victory!

So much to catch up on! So much has been happening from graduations to lemonade stands to 4 hour row-a-thons. Kyle recently graduated from the Air Force Academy and we had a terrific weekend with friends and family who all came to celebrate and fry 7,000 feet closer to the sun. Unfortunately my dad was unable to fly out as he’s very busy at Spaulding rehab hospital. I haven’t seen him since the first surgery, so I was thrilled to finally be with him again. He’s got a nice room overlooking the Boston harbor, and his bulletin board is covered in notes, pictures, medals, trout bandanas, and pug drawings.

The facility is extremely beautiful and brand new, equipped with state of the art technology and equipment. During the day he uses a motorized wheelchair to get around. He steers it by tilting and pressing his head on the neck rest. Sometimes this results in bumping into walls, running over toes, and tipping off the edges of sidewalks. When he’s done with the wheelchair for the day, he is literally air lifted out of it and into bed using a ceiling crane and a body sling. Like those videos of whales getting picked up off the ground and into truck beds.

In bed he watches The Colbert Report and The Daily Show nightly. We feed him his dinner and he swallows a plethora of meds. Sometimes he sits and uses his Tobii- a tablet that uses eye tracking technology to allow him to surf the web, watch YouTube, or send a text. Then the lights turn out and he tries to sleep but it’s very difficult and uncomfortable because he can’t move or position his body how he wants. So he either wakes up whoever is sleeping in the room or calls the nurse to have her push his body on his side, lay his arms out, and reposition his legs and feet.

When morning comes the first item on the agenda is iced coffee. One morning a nurse came to clear dad’s breakfast tray and she almost took his cup, and he told her he would bite her arm off if she did so. After 3 months of requiring somebody else to make you comfortable at night, I guess coffee becomes a life or death matter.

Once the caffeine kicks in, the day is busy. A team comes in to undress and redress him, give him meds, crane lift him out of bed, and send him on his way to physical therapy. While I was home I got to see him walk, which is a really big deal. With the use of a walker and the crane, he walked a whopping 98 feet. This absolutely blew the therapists out of the water. I walked in front of him and watched his face cringe and sweat during the last steps before he collapsed back in his wheelchair.

After that he heads over the occupational therapy, where they push and pull his arms around and try to help him regain some movement and strength in his upper body. From what I saw his hands are completely immobile and so are his arms and shoulders. He has regained strength in his neck and his incisions are no longer painful. His friends who visit him frequently say they notice tremendous progress in his muscle use and general appearance. Last week he could barely twitch his leg or lift his foot, this week he swings his leg gently off if his wheelchair.

Progress is slow, but it’s happening. We’re not exactly sure how long he’ll be at Spaulding, but the longer he can stay there and continue to work, the better. He dearly misses home and the old way of life, but he’s got an incredible work ethic that is determined to get back to (at least) where he was.

Working diligently at his side is my mother, who runs the whole show. I spent two days in her shoes; waking up early to get coffee, brushing his teeth, getting him dressed, walking him to his workouts, aiding in those workouts, feeding him his meals, changing the channels, trying not to cringe as he zig zags with his wheelchair, waking up hourly to reposition him and give him water, and it was EXHAUSTING. She does this all while trying to get our house renovated and a wheelchair van in the driveway, keeping track of two kids and two dogs, driving between states daily, and responding to infinite texts and emails. I honestly don’t know how she’s still alive, let alone pulling this off with a smile on her face.

That being said, she can really only do this because of the huge support system behind us. Dawn our dog sitter has been graciously keeping Nelly and Olive at her house this whole time, even sometimes bringing the dogs to Boston for visits. Good friends and their good kids hold lemonade stands to raise money for dad and to spread awareness about ALS. My mom’s good friend and dad’s old swimming partner Jill hosted a 4 hour row-a-thon and donated money to the ALS association and our family. Ken set up an account and link on this page to allow people to donate to our family to help offset that tremendous costs of ALS. Dad’s friends flew out for Kyle’s graduation to be there to support him and us. The neighborhood and surf club guys are regular visitors at Spaulding and bring dad good food (and the occasional beer) and ensure the party life still exists in dad’s routine. Friends and strangers drop off meals, flowers, packages, and cards on our doorstep to let us know we’re on their minds. If I were to list the good things everyone has done for us, this post would never end.

All of those good people and good things are coming together next Fridayat An Evening of Hope, a gala in conjunction with the ALS Association of Rhode Island. Our friends and their staff have planned an exquisite and what sounds to be a wildly successful event. Dad will be there and is extremely excited, though he does have to be back at Spaulding that night (so don’t give him too much wine!). He and I sat down and wrote a speech, him talking and myself typing, that he’ll deliver that night. I’m warning you now, ladies wear waterproof mascara and guys have plenty of tissues on hand. He’s finally got the chance to tell everyone how this disease has affected him, and what he’s got to say is truly moving.