Category Archives: Uncategorized

The KP41 Fall Classic is here

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Thank you Pink Whales for all your dedication and attention to fighting ALS and helping raise funds for a cure. Kreg and I hope to be there but count on Kyle and Gabby for sure!  Friends! Go have fun with this great organization of young professionals with energy, athleticism and a social conscience and we hope to see you there!

http://pinkwhalesfoundation.bigcartel.com/product/4th-annual-kp41-fall-classic

Elizabeth and Kreg

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!!!

Graduation, March 14, 2016

AFIT Graduation, Masters of Science, Operations Research, Dayton, OH,  March 24, 2016

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!

Gabby: "when your dad turns into a Transformer" January, 2016

Gabby: “when your dad turns into a Transformer”
January, 2016

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-

Elizabeth

 

 

 

Save the Date! A White Coat Affair, November 14th, 2015

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 

at
The Sheraton Boston Hotel
Boston, Massachusetts

For more information, contact Jillian Davis at 617.441.7266 or at jdavis@als.net

http://www.alstdi.org/als-events/white-coat-affair/

Spring into Summer

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.

Kregs 50th

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

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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.

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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.

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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.

 

 

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Friends, old and new, never cease to amaze us

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

 

 

“Finish for a Guinness” with me!

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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

 

Home at Last!

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

Guest writer Bonnie Soper ~ Kreg’s most AWESOME Personal Trainer

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!

 

On Friday, May 2 2014, Kreg was transferred to Spaulding Rehabilitation Hospital on the Charles River in Boston. http://www.spauldingrehab.org/locations/spaulding-rehabilitation-hospital/

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This is the same facility that rehabbed the Boston Marathon Bombing Victims. It is a world class facility and words can not describe how nice and beautiful it is. We are very fortunate to live where we live and have access to this great facility.

Kreg is doing well. Every day , he’s moving more and improving his functions. Right now, the plan is a 2 to 3 week stay, minimum. Kreg called Air Force Football Coach Troy Calhoun and told him, “pencil me in for starting strong cornerback this year”.IMG_2773392446833_resized

Kreg says thank you for the unbelievable amount of well wishes and support. He would not be able to get through this without it. He looks forward to  returning home soon.

 

A New Lease on Life

Kreg said to me yesterday. “I think I know why my mind is so clear and I’m talking so much. I have a new lease on life!”

Kreg and I have been so fortunate to be in this incredible hospital with these wonderful people. We look forward to seeing the sun rise every morning. This study has been stretched so wide, leaving no stone or cell unturned. The brain capacity into Kreg’s condition is as big as his courage. We are so grateful to everyone that has supported us in every way.

He continues to bypass that horrible nerve pain from the first week and is participating in as much PT and OT as they can bring. He has made it to the recliner and is enjoying having his feet flat on the floor, a big part of recovery. I just hope he doesn’t get too attached to that recliner- not in our house…..

He has big physical gains, is tapering off the meds and is full steam ahead on the charm. He’s advising all the nursing students on the basic principals of a close shave.

We have many more days in Boston, that’s for sure but a repeat MRI shows decreased inflammation, yay!, and the chest xray is clear. Kreg is going win this race! Thanks for all the support, the favors, the prayers and the love. We appreciate them all.

Those stem cells will be playing hard soon. We will keep you informed!