Monthly Archives: March 2014

:) Surgery Update

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!


Friends and Neighbors

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.



Neuralstem surgery update

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.