Bob takes the 41 jersey out for a spin in Hawaii. Is that thing UV protective? 😉
Well the sun, moon, stars and Southwest Airlines aligned and we were able to fly out to Gabby’s graduation in May! I must say that , earlier this year, when we decided that driving was not an option for me, I pretty much gave up hope of seeing my beloved daughter graduate. Needless to say, I was devastated. I even told Fischer DeBerry that I wasn’t going to make it, when he gave us some money for ice cream to be used during our trip (thank you Coach). Well, thank God for Elizabeth’s can do attitude! She was able to figure out a plan for flying, acquired a wheelchair van in Colorado and got my Physical Therapist from Boston (Carrie Callaghan) to go with us on the flight out. It was a very ambitious plan, but it all worked out. Budd DeMarais and Chasely Paul flew from Colorado, back to Rhode Island with us. A big shout out to Chris Patton for driving us to the airport in Boston (not an easy task).
Graduation was a blast, but the weather was awful, cold and rainy. It was good to hang out with family and friends albeit indoors, due to the weather. We especially enjoyed Gabby’s boyfriend Scott and his family (the Priors) and her roommate Terra (Big T) and her awesome family.
As expected, Gabby kicked tail and graduated with honors. She fully immersed herself in everything Colorado College had to offer and certainly got our money’s worth there. I can’t say enough good things about CC. What an incredible school and amazing experience for those few and fortunate to attend.
Thanks everyone for all and every thing you do for us. We feel the love!
Kreg and I have been busy and are sorry there’s been little posting going on. Gabby is graduating soon and is busier than ever writing her thesis (and not her dad’s ALS blog post) on how cow poop is hurting our climate. It is, I know it, but Kreg and I are only cutting back on our beef and meat- for that matter, intake and are not full blown vegan as Gabby and Kyle have gone. More on that another time. I may actually post a link to both kids incredible efforts as they both wrote thesis and are graduating this spring. Kyle from The AF Institute of Technology with his Master’s in Operations Research and Gabby from Colorado College in Environmental Policy. BIG things ahead for both!!!
Kreg has also graduated…. to a new chair! It’s hands down-kick ass! He can stand in it! and standing probably SIX feet 4″ or 5″ at that! It’s great for him to stretch, good for weight bearing qualities on his bones and no US Veteran with working legs should get any other chair- This one is good!
On to ALS: We have lots and LOTS of help but it’s still hard. ALS just sucks- flat out. I know everyone is sending us their love and we can not thank you enough. Keep it up. ALS continues to progress, but slowly and we want you all to know that because of all your love and support, We can keep our faces to the sunshine:)
Please know how we miss you friends. It’s tiring for Kreg to type emails and texts so I will try to post more with him dictating to me. And when Gabby is home after CC, We will all look forward to some of her clever writings.
Sending big love for now-
We are finally home after our several week cross country excursion. It was jam packed with friends, family, events, and activities. Elizabeth took the wheel and I rode shotgun as we traveled to our first destination, East Lansing, Michigan. I was lucky to have my friend and former teammate Bob Lietzke present to me the jersey that’s been traveling around the world. Not only were my former teammates involved, but this ceremony took place in front of the entire current USAFA football team. I was given the opportunity to speak to the team before the big game, where I got to roll out onto the field and serve as the honorary captain. It was a once in a lifetime moment that’s hard to express in words, and luckily Air Force Athletics created an awesome video showcasing all of this. There are also articles in the Lansing State Journal, as well as the Detroit Free Press if you’d like to read more.
From there we headed southwest to see go see Gabby in Colorado Springs. It was our first time back at parents weekend since her freshman year, and it’s hard to tell who was more excited about the visit. We shuttled along through corn country and made it to the Springs just in time to catch the sunset behind Pikes Peak. We had a fantastic time at Colorado College and met Gabby’s advisor Mark Smith, and also spoke with the president of the college Jill Tiefenthaler who has been so helpful to us through Gabby’s time at CC. She is so supportive in fact, that she even participated in the ice bucket challenge with Gabby!
Later that evening we held a little gathering in Gabby’s yard with all of her best friends from CC. We had a great time meeting all the amazing people she has told us stories about. We had so much fun we temporarily considered getting a house in the Springs so we could party with them all the time!
We finished up our Colorado Springs visit by driving up Pikes Peak highway. We stopped and ate some authentic Mexican food along the way before making it to 14,115 feet. Not the way I would like to summit mountains, but I’m happy to still get up there.
From the Springs we headed up to Aspen for some much needed rest and relaxation. We enjoyed some spectacular views and a wonderful stay in the cool Limelight hotel. The aspen trees were in their peak and made Independence Pass and Maroon Bells more stunning than ever.
Our Colorado stint came to an end as we headed back east for five days. We stopped in Dayton to see Kyle and his new home. The scenery wasn’t as great as Colorado, but we managed to find some things to do around town. We visited the Wright Paterson air and space museum. It felt a bit odd for me, as some of the planes that I flew were in there as exhibits. Does this mean I’m old?
We’re happy to be home now after driving more than 5,000 miles around the country, and would like to thank everyone who came to see us along the way. We are truly blessed to have such good friends and family that are always willing to show us a good time!
Please plan to join the Palko Family along with a great bunch of smart and compassionate people called ALS-TDI that want to find a therapy for people with ALS. Let’s go to this wonderful party, have an amazingly fun time and get the money into the lab.
Hope you will join us!
Saturday, November 14th, 2015 at 6:00 pm
for the ALS-TDI Gala,
A White Coat Affair
The Sheraton Boston Hotel
For more information, contact Jillian Davis at 617.441.7266 or at email@example.com
Happy Summer everyone! Lots to catch up on – So many events and happenings.
In true Palko fashion, we celebrated Kreg’s 50th birthday for at least a week. It all culminated with an AFA buddy gathering weekend at the Patton’s gracious home in Franconio, NH. The dance moves shined and the fun was that AFA ‘brotherly love’ thing- the kind of stories that our kids actually sit and listen too:) There was no red wine left in New Hampshire by the end of this trip.
For Father’s Day, We moved Kreg into our new addition. We are positively enjoying our ground level bedroom, master bath and outdoor living spaces. Thank you Broomhead Builders and all the crews involved for the dedication, hard work and attention to detail. We are humbled at our good fortune to live in such a lovely and comfortable home. Thank YOU- all of you! that have sent financial support for this addition. You helped make this lovely space
Inspired by Kreg’s Dearborn High classmate Holly Walker’s May 2015 “Swing for the Cure” golf tournament in St.Petersburg Florida, which raised $14,000 to honor Kreg, raise awareness and support for ALS research, we road tripped to Dearborn to say thank you. We had a nice family excursion but the highlight of the visit was the informal gathering at Raymo’s bar (The New Place Lounge). Raymo and his staff threw an awesome afternoon gathering attended by old neighbors, graduates of Dearborn High AND rival high school- Edsel Ford!, Kreg was overwhelmed by the showing that when it came time to address the group- he had no voice or energy left in him to thank everyone . Thank you Kris Beers for stepping up and doing it for him! And thank you Barbara Palko for the round of shots that followed!! It’s been 32 years since Kreg moved away from Dearborn, but you would never know it. The Good people of Dearborn keep together and support one another! God bless you all and thank you.
Kreg and I took our time driving home. We stopped at one of our favorite Brewery’s, Brewery Ommagang, in Cooperstown, NY. When you can’t get to Belgium, grab an Ommagang! We arrived home to find Kyle had road tripped home from Ohio and we all enjoyed a fun and relaxing 4th of July, spending time with the kids, their friends and ours.
Summer in Rhode Island is as it should be- We head to the beach, where Kreg kicks back in his wheelchair at the edge of the sand, with a Del’s Frozen Lemonade close by.
Memorial Day is the chosen day of the year to remember and honor those who gave their lives for our country. This Memorial Day began with a phone call from a dear old mentor and friend of mine, Cal McCombs. Cal is a legendary defensive coach from the Air Force Academy and was my DB coach there. He and his wife Lynn were passing through town and wanted to stop by for a visit. What a great surprise! We had a great visit with them over lobster rolls and iced tea, revisiting the football stories of the past and catching up on the present. It was the perfect way to spend the day. It’s nice to be remembered by a great coach and person as Cal McCombs, epically on Memorial Day. By the way, I was visited last weekend by former Falcon great, John Steed ’88”. The Bolt Brotherhood is alive and well.
It has been a while since we have last posted to the blog, but we have some exciting updates to share. Gabby spent a week here for her spring break and they took a trip to Niagara for my grandparents’ 51st anniversary. It sounds like they had a great time getting out of the house and viewing the falls and hanging out with the family. I arrived here a week ago but have to leave tomorrow but we’ve spent our time hanging out around the house, checking out new physical therapy locations, and an overnight trip to Connecticut to see some friends and coworkers. Spring seems to finally be on its way and we can see grass for the first time since the start of the winter!
Now onto updates. As many of you know, Veteran’s Affairs gave the family a grant to build an addition to the house. The addition is a first floor master bedroom that has doors wide enough for a wheelchair and allows for my mom and dad to sleep in the same room again. It sounds simple, but something as small as being able to sleep in the same room has the potential to radically change the quality of life. Although the brutal winter delayed construction, we’re happy to report that the foundation has been laid and most of the support is already up. The contractor estimates that construction should be done sometime in May, excellent news.
The big recent announcement came from Neuralstem, the company that developed a procedure to plant stem cells directly into ALS patients’ spinal cords to hopefully reverse the damage to the motor neurons. Last April, my dad was selected as a recipient of 8 million stem cells in Neuralstem’s Phase II trial. There were a few complications with the surgery and we had to endure several months of tough therapy to get back on track. Nueralstem published their study on March 12th and were happy to announce that the study was deemed successful! 47% of the 15 recipients showed a response to the treatment.
We received a call two weeks ago from the study doctors and they said that my dad was a responder! It seems that the stem cells have worked in slowing (hopefully stopping or reversing) his disease progression. His breathing tests show that he is in the 93rd percentile for his age group (that means his lung functionality is better than 93% of males of the similar age). Suffocation is one of the leading causes of death for ALS patients so this is extremely good news. My dad would also like to report that he feels better now than any time since the surgery. He says, “Although I was a different person before the surgery, I feel really good mentally. The pain is going away and I’ve begun to drop medications.” He credits his successes to more than just the stem cells. “A big part of it is due to Ann Fleet and Bonnie Soper coming every week working on my strength and range of motion.” Ann and Bonnie are two of his trainers/therapists.
The study is a little dense with terminology so I’m going to do my best to give a summary. The study measured the ALSFRS score, a set of ten questions that provides a “physician-generated estimate of the patient’s degree of functional impairment” which is used to assess progression of the disease, as well as grip strength of each patient nine months after the cells’ implant. Seven of the fifteen patients showed either close-to-zero decline or an increase of ALSFRS score as well as a close-to-zero decline or positive strengthening of grip strength! While the study didn’t contain a control group, the average responder’s ALSFRS score was 93% of their baseline, while the non-responders declined to 35%. That is a huge difference and is great news for us. The study announcement can be found here.
While eight patients did not respond to the treatment, Neuralstem hypothesizes they have a way to effectively predict whether patients will respond to the treatment. The study is great news to the ALS community. If these results can be replicated in their next trial, it will be the best response seen in any previous ALS trial. Neuralstem says they anticipate continuing with a trial later this year.
With the success of the Ice Bucket Challenge and daily advances in ALS research, we are slowly getting closer to a cure.
Holly is a classmate of mine from Dearborn High School. Her father passed away from ALS, and now she is deeply involved with ALS fundraising and passionate about finding a cure. She has graciously offered to host a golf tournament in my honor. If you are from Florida or are planning to be in the area, please consider attending the tournament. If you are unable to attend, please consider donating to the cause. Half of the donations will be going to my neighbors, Massachusetts General Hospital, who tried to help me defeat ALS. The other half will be going to Holly’s neighbors at the University of South Florida research. I can’t tell you enough about the good things the people of Dearborn have done in my fight. Holly is another great example of these good people. If you’re interested, please contact her at 727-218-3604.
When I came home from a particularly stressful and exhausting semester, I was excited for what every college student returning home dreams of: sleeping in past noon and lazy days spent entirely in pajamas. After a long day of travel and finally crawling in my Rhode Island bed, I can’t describe how good it felt to fall asleep without having to set an alarm for the next morning.
I woke up a little past noon and wandered downstairs in my pajamas. My drowsiness mingled with excitement about browsing a fully stocked fridge and pantry, a luxury surely taken for granted in college. I barely turned the corner into the kitchen before I realized we had a full house. There were half a dozen construction guys right out the front door, two physical therapists working on dad in his room, a nurse’s aid cleaning up the kitchen, a couple of neighbors chatting with mom in the mudroom, and dogs sprinting around barking at all the madness. I quickly realized this wasn’t going to be the relaxing and uneventful vacation I had hoped for.
Our front door might as well be replaced with a revolving door, because there is a steady stream of people coming in and out every single day. In comes food, help, beer, tears, and laughter, which we are so appreciative of. But ALS weakens the muscles, including all of those required to talk. Dad’s speech has declined a significant amount, and with so many people in the house every day he exhausts those muscles trying his best to chat. We really want to focus on the quality of visits now rather than the quantity, and this works best if they’re planned ahead of time rather than just dropping by.
Shooting a text to my mom is best, because most of the time when the phone rings she has to drop everything she’s doing to run and grab it. If she responds and gives you the thumbs up, you caught us at a good time! If she’s unable to respond or gives a thumbs down, it’s probably because her hands are busy preparing meals, feeding dad, taking care of the dogs, trying to find the right TV shows, organizing doctors visits, and the billion other things she does a day. Drop in visits are really great most of the time, because we love our friends and our neighbors dearly and you all help us so much (and you usually come with a bottle of booze!). But there are times when dad is in severe pain, the emotional and stress levels are off the charts, tears are flowing, or naps are just trying to be taken. We’ve become pretty damn good at pulling it together when people come through the door, but I assure you your visit will be much better if you just let us know ahead of time! Dad also mentions his pain in his post, and this is definitely something to be aware of when you do visit. His shoulders are extremely sensitive, so when you come to see him avoid touching that area and he (and us too) will be very thankful for it.
More than my parents will let on, things are insanely busy and INSANELY stressful at home. As much as we try to be positive, things are really hard. Christmastime was particularly emotional, and day to day struggles and bumps can be extremely disheartening. The mental and emotional toll this disease takes can be just as debilitating as the physical. Dad is often in a lot of pain, and mom is essentially trying to be the hands and legs of two people. To be quite honest, I’m not sure how she is still standing. Whenever dad needs her, she’s there. This includes any hour of the night, and pretty much every minute of the day. She is by far the strongest, most tough skinned yet compassionate person I know, and has earned several lifetimes worth of karma. I am so proud of her and consider my brother, my dad, and myself so incredibly lucky to have her to keep things going.
We love seeing everyone and the outpour of care and love we’ve received from people all over town and the country continues to be amazing. If you haven’t seen it yet, check out the #41 jersey page on the blog, where dad’s Air Force teammates have been passing around the 41 jersey and sending along their words of encouragement.
Ok, now here is dad’s post. It took him three days to write this using his eyesight technology. Every single letter, space, and period had to be carefully picked out with precise eye movement and endless patience, so these words are incredibly significant. We’re still trying to figure out how to get texting on his tablet, so for now, please email him whenever you want to chat!
Thank you guys for everything!
Sorry it has been so long since our last blog entry, but time is a precious commodity to the Palko family and unfortunately writing blog posts has become a victim to that time. We are definitely alive and well! We thoroughly enjoyed the holidays spending time with Kyle and Gabby. Many have been asking and want to know how I am doing, so here´s an update.
Last week, I had my 6 month post-operation testing. I tested relatively well. Although the surgery set me back a fair bit, I have remained pretty stable for the last 7 months. My legs are about all I have left. Lifted out of my chair and with a bit of support, I can stand for a couple minutes. Although I can move my legs and ride a recumbent bike, I am unable to walk on my own anymore, as my upper body remains too weak to support a walker now.
My breathing capacity remains incredibly strong. Last week, I tested/blew in the 93% range for healthy people in my age bracket! This is good news, as failure of breathing function is the main cause of death for most people with ALS. Most notably, the main goal of my stem cell transplant was to preserve my breathing. For now, that aspect seems to be working.
However, pain has been a persistent problem, primarily in my left shoulder. This pain has been narrowed down to a pinched nerve at C7 in the neck. There has been so much muscle mass lost in my shoulders that they are literally coming out of the sockets. This has been adding to the pain problem. I have been going to the Brigham/MGH rehab facility in Foxboro, MA once or twice a week. Given the fact that the facility looks right into Gillette stadium and that I can pretend that I’m practicing with the Patriots on any given day, I’m very happy with the therapy that I’m receiving there. We have been primarily focusing on the neck pain in therapy.
Construction has finally started on the new addition to our house, so we are both happy to finally get that going. I’m excited to finally get into a private bedroom again and a bathroom that accommodates my wheelchair. It has been trying times as I’ve been sleeping in the living room and showering in the powder room shower.
Overall we are doing okay. As my wife and daughter tell me, I can be cranky and ornery at times. I can be a tough customer, at times. Living with and caregiving for ALS is not easy or fun, but we are trying our damndest to make every day count. We are so very fortunate to have a fantastic support system of friends and family looking after our every need. Without you guys, we would really be up a creek and every day would be far more difficult to count as a good one…
Thank you for all your support, and Happy New Year!
Kreg and Elizabeth