We are off to Boston tomorrow to meet our family before walking over to Massachusetts General Hospital together on Thursday morning, April 10,  for Kreg’s 7 to 8 million stem cell transplant!

Thank you for all the well wishes and support, the BIG love and the prayers. We feel them all. Remember, this is a big experiment- but we have such encouragement that incredible things will come of it.

When the Palkos head out on a trek of some sort, Kreg always, always!!! pushes us to follow him to that perfect spot;  that spot that no human has ever laid eye on, that he knows will just present itself……for that yummy, prized backpack lunch.  He has usually pushed all our buttons by that point as well, and just when we can’t take it or each other any more, voila’- we are there!  All is good and very worth the effort.

I think Kreg is on a trek again. He has led this search for an opportunity to challenge nature and human biology. We have learned of amazing research and technology, met knowledgeable and energetic people, and experienced super-human kindness in every way, shape and form. Kreg is and will always lead the way- even in ALS. He’s helping to write the book!

Check in often, we will keep you posted.

WIth much love, Elizabeth

Kreg’s in!!!

The power of positive thoughts, prayers and well wishes paid off! Kreg is set to have 6 million to 8 million stem cells transplanted into his body on April 10th.  Please keep the good energy flowing this way!

Go Stem Cells!

I once heard a DJ on the radio say that nothing good ever came out from Barrington, Rhode Island. I couldn’t disagree with him more. I think that Barrington could be the epicenter of everything good about mankind.

The other day we sent out an email asking some friends and neighbors to volunteer  their help for the ALS Gala in June. We needed three or four volunteers, and we got twenty-five.

It’s been a long harsh winter. When you have neighbors like the Pattons, McDermotts and Rizzutos, you never have to worry about shoveling the snow in your driveway. One night at 2:00 a.m. at the tail-end of a blizzard, I heard somebody shoveling snow and wondered who the heck would be out this time of morning (or night) doing their walk. I went back to sleep. When I woke up in the morning to a cleared driveway and walkway, I realized that person had done my walk.

Our firewood guy, Brian Joughim, dropped off a cord of wood. I wanted to pay him, but he wouldn’t let me. Brian was out of work at the time.

When the leaves were spilling out of the gutters this fall and I thought I’d have to live with them that way, through the winter,  no worries, the McDermott family showed up, ladder in hand, and cleaned every gutter in my house.

I have a lot of appointments in Boston, two or three a week sometimes and somebody has to watch the dogs. Dawn Sletta does, free of charge.

When I asked Bonnie Soper is she could be my personal trainer and help me combat the weakness and rigidity that was/is progressing in my body, she offered to compensate her time.

Julie Gaffney and her Heartworks – RI crew gave us a ‘plane ticket to fly Kyle home on his Break. I think they are also behind the incredible Secret Santa basket left on our doorstep this Christmas that contained foods, gifts, and gift cards to local merchants in Barrington, totaling more than a couple thousand dollars. Julie is also doing the invitation for the ALS Gala this spring.

When Luke the barber cuts my hair, he never fails to offer a free shave,  knowing that Elizabeth is too busy to do it herself.

Lynn Caesar, Sallie Newton and Melissa Horne hardly let a week go by without an elaborate meal, baked goods, etc. delivered to our house. CP dropped off a box full of Blount soup the other day, yum!

When the Pink Whales Foundation threw me a golf fund-raiser, Dave Smith donates a car for the hole-in-one contest.

After much deliberation and real estate hunting in Bristol and Providence, we contemplated moving into a one-story condo or loft. The thought of adding an addition to the house to accommodate my future needs seemed too daunting. The decision to add on to the house, pales in comparison to the thought of moving away from our friends and neighbors. We decided to go ahead with the addition. Did I forget to mention that some friends and neighbors offered to pay for it? I respectfully declined.

They say you can never have enough friends and neighbors. It could never ring more true than when you’re stricken with ALS. We are so fortunate to live in Barrington, Rhode Island. I don’t care what that DJ said; he was flat out wrong. There is so much good in this town. God Bless Barrington, Rhode Island.

By the way, I had help with this piece as it was typed by Caroline Walsh- from Barrington, Rhode Island.

~Kreg

The next Neuralstem transplant will take place on April 10 at Massachusetts General Hospital.  Kreg completed some additional testing this week at the hospital and he passed with flying colors.  He is currently the backup candidate for the April 10 date. Keep your fingers crossed that he moves up to the be the number one candidate.  We will know more information by the end of March and will let everyone know. Thank you everyone for your continued love and support. With or without this surgery, we can move forward knowing we are surrounded by magnificent and wonderful people.

Alas, there is a saying about things not quite going as planned.

The neural stem trials have been delayed for three weeks. The first surgery is scheduled for February 5 and Kreg appears to be second or third in line for that surgery. The bad news is he’s not first in line, but since they are going to do three or four surgeries in the next few months, it appears very likely that Kreg will get the surgery done in that timeframe. Keep your fingers crossed and keep the good vibes, prayers and love coming his way. We have hope!

In mid-October, I received a text from my friend Sally that said her son wanted to raise some money for Kreg. We had Sally, her husband Gary, and their son Tieg over at the house the following Sunday for dinner and we were wowed!!  Tieg is 28 and played lacrosse for Bryant University. He is still playing, is a CPA, and in 2012 he started a non-profit called Pink Whales Foundation.

Check them out! http://pinkwhalesfoundation.bigcartel.com “Pink Whales~ Making Waves- Raising money for various charities and good causes through lacrosse, networking events, and community activities”. Sounded good to us!  Pink Whales had a Fall golf tournament and a Halloween Party already planned and Tieg wanted to donate the proceeds to Kreg.

Barrington friends jumped on board! Kreg’s Barrington Surf Club buddy Dave Smith owns Factory Five Racing, (https://www.factoryfive.com/whats-new/pwf-golf-fundraiser-big-success/ )and drove in a Cobra for one lucky golfer’s Hole-In One prize of a lifetime on the 17th hole.

Kreg’s parents Barbara and Andy flew in from Michigan to play along with about 15 other Barrington friends!

The day was bright and chilly but there was fun on every hole!  We wished everyone a great round and sent them on their way. Tieg’s pretty girl “friends” were the Troupe de Volunteers that kept everyone smiling!  Thanks Ladies! No one won the Cobra, but our friend Jen Carlson did get a hole-in-one on the 13th! Not too shabby for a lady that just started playing a year ago! Congrats Jen! The tournament was a huge success and Kreg’s parents had the time of their lives. Thanks everyone for your support!

At dinner the other night, Tieg and friend Dan, another Pink Whales Director, (both pictured above!) handed Kreg a check for $10,000!!! What a magnificent experience! To know that these young people care so much to work hard, play hard and then GIVE LARGE! We are so glad to know you Pink Whales! Thank you Dan and Tieg! Keep making waves! Let’s do it again real soon!