Celebration of Life

Kreg’s Celebration of Life will be held Saturday, October 21st, 2017 at the Providence Biltmore Hotel from 2 – 5pm.  Dad selflessly decided to dedicate his body to the Massachusetts General Hospital to further their understanding of ALS. Therefore this is not a funeral, nor a memorial service. This is a chance to gather, tell stories, see old friends, meet new friends, and celebrate Kreg’s life and legacy. Everyone who knew Kreg is invited.

The Event:

  • The celebration will be held at the Biltmore Hotel in Providence, Rhode Island, Saturday October 21st from 2 – 5pm.
  • Dress is festive cocktail attire (or casual, but the venue is slightly upscale. Though, Air Force jerseys are encouraged).
  • We encourage you to make dinner reservations for after the event in Providence.

Getting Here:

  • We recommend flying into TF Green Airport in Providence
  • The Boston Logan Airport is also an option, but it is an hour and a half away
  • Event Parking is available through the hotel’s valet service (~$18), at the Biltmore Parking Garage at 51 Washington Street (~$12-$15), or available street parking (metered). Ubers, taxis, and Lyft are also recommended.


  • Hotels in Providence, RI; East Providence, RI; Seekonk, MA; or Airbnbs in Barrington, Bristol, or Warren, RI are recommended


Below are several restaurants within walking/taxi distance of the Biltmore Hotel for post-celebration dinners. We encourage you to make reservations.



In Kreg’s Memory


We are heartbroken to announce that at 10:00am this morning, Kreg took his final breath. It was an excruciating end and his body fought tirelessly as we watched him gasp for air over the course of 9 hours. Today’s fight was proceeded by two weeks of battling pneumonia and chronic pain, all without being able to communicate with us because of difficulties with ALS. It was a traumatizing end and we are all relieved it’s over.


We are spending this weekend with close family, but will be hosting a Celebration of Life for Kreg at a later date. As soon as we decide the date and venue we will share it far and wide so that everyone that Kreg touched and everyone who touched Kreg can come celebrate his bravery, spirit, and love.


In lieu of flowers and food (but not booze, we accept booze. sorry dad), we hope you’ll consider a donation to either the ALS Association of Rhode Island to assist families like ours with their expenses, or to ALS Therapy Development Institute who focuses exclusively on finding a cure. Both are very necessary and worthy causes.

  • The ALS Association Rhode Island Chapter, 2374 Post Road, Suite 103, Warwick, RI 02886 or can be made online at:
  • The ALS Therapy Development Institute:

Thank you for all your kind words and support, we are feeling so loved and know Kreg will live on through all of us.

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Thanks Judith!

Judith Diaz has been cutting my hair since I have gotten ill. Her dedication to helping me look good (not easy) is beyond words. Keep in mind I had never met her prior to becoming sick. She opens her studio to me on her days off to wash and cut my hair, trim my nails (stinky feet included), massage kinks out of my neck (highly recommended) and removing hair that grows in places that it shouldn’t be growing. She uses hot wax and little strips of paper to remove such hair. The pain this causes an individual is so great that it should replace water boarding as a preferred torture technique! Judith seems to take great pleasure in causing this pain. She must enjoy causing pain to herself too, as she took the 41 jersey for a spin in the Bristol half marathon on July 4th. She made it! Congrats Judith and thank you for grooming and manscaping me.judith

The Brutal Reality that is ALS

The Brutal Reality (cont.)

In my last post I mentioned that I was starting to turn things around in a positive way, with less pain, better sleep, etc.. Then, right after the post, the bottom dropped out (or more like spun out).  One day, after Elizabeth sat me on the side of the bed, the world starts spinning and I mean spinning! It felt like I was on the world’s fastest merry-go-around! I quickly got Elizabeth’s attention and told her to lie me down. After a minute, the spinning stopped. I felt sick and dizzy just like I did after a fast spinning playground ride as a child. I have to admit my thrill seeking side started to surface as I thought  “that was pretty cool”. I knew deep down though, that I had vertigo and this could be a permanent problem. How did I know? My Dad suffers from it and deals with it on a regular basis. It was serious and I was bummed knowing that this could be a long term, or even permanent condition. I was aghast that this could be added to our plate. I must admit that I cursed the heavens (with teary eyes) wondering what else could come our way. All the cursing must have paid off because, after a week, the vertigo subsided and we realized how lucky we were not have to deal with that constantly!

Well we have had a good summer so far here at AirK&E. We’ve had visitors galore, active dogs running in and out, construction and healthcare workers coming and going. I did suffer from pneumonia in June, but quickly recovered within a week. I have been sleeping much better and for the most part eliminated the pinched nerve in my neck. A killer cortisone shot to my shoulder has given me a pain free week (thanks to God sent Dr. Arena) and it allowed me to go surprise Kyle in Boston, yesterday, for his 25th birthday! I spend most of my time writing (a lot of thank you notes), reading, listening to music (loudly and to the protest of my housemates) and watching the grass grow from one of the various porches outside our house.

I want to thank everyone for your continued support. All the cards and letters and messages (especially my friends in Michigan : Tammy, Rick, Steve, Tim, Andy, Boog) and everybody else who has dropped me a message. You are inspiring me to stick this out and to not give up. It’s humbling. Thank you.

kiss from elle


When my friends and family first approached me about creating this website, I agreed to do it with one stipulation, that I wasn’t responsible for its content, or writing. I am an awful writer. So, after a few years of it up and running, look who’s responsible for the content and writing. Like they say, “Father always knows best”, or has foresight for that matter. :-)

So we survived a long, cold winter and spring. and it wasn’t easy. People are always asking me how I am doing? I always respond with “great”, because I consider it rude to talk, or complain about one’s health. In all honesty, it hasn’t been so “great”.  It has been really bad. I have decided to lay it all out there, because so many of you want to know why I am not always up for a visit, or visitors for extra lengths of time. Here is why.

I can barely eat. My tongue is too weak to move food. The same goes for my throat. Choking and coughing up food are constant. Meals take forever and usually end when I get bored, or whoever’s feeding me gets bored. I go to bed hungry many nights. My clothes do not fit anymore. Much of this is my fault as I chose to not have a feeding tube.

Drinking is equally problematic. I usually drink from the right side of my mouth. It then comes out of my partially paralyzed left side (kind of funny if it weren’t so sad). Yesterday, I couldn’t satisfy my thirst. Sucks.

I’m so thin that sometimes, when I look at myself I get sick to my stomach. Despite all of this, I am constantly being lectured on my non-vegan diet.  😉

I pee once a day, poop once a week. No kidding!

Pain is constant. At one point this winter, I had multiple ingrown toenails, awful carpel tunnel pain in both hands, a pinched nerve in my neck and debilitating shoulder pain, so bad, I considered amputation. All at the same time. I was on more morphine than any of my docs and pharmacists have ever seen anyone on.

I have constant weeping eyes due to a chronic eye disease.

I can barely hold my head up. My neck is becoming too weak to support it.

I haven’t slept through the night in 3 years due to pain, discomfort and now hunger.  Elizabeth has definitely slept less than I have.

Excess saliva is constant. I have a suction machine and medication, but at times you’ll find me drooling on myself like an old person, or baby, your choice.

I forgot to mention… that I can no longer speak. If I don’t say “thank you”, it’s because I can’t.

You may think I am just feeling sorry for myself. Not true. I’m just trying to explain why I’m sometimes grumpy and  why I might not be up for a short visit, or a two week houseguest(s). I love your children, but I don’t feel comfortable with them staring at me and I don’t want them seeing me this way. I don’t want to be remembered like this. A little girl the other day buried her face in her father’s shoulder so she wouldn’t have to look at me. I have way too much pride, it’s hard.

There is some positive news. With some changes to: the way I transfer, my diet (no dairy) and my bed, I have managed to eliminate much of the chronic pain I have been experiencing the last couple of years. I’ve cut my morphine intake in half. This has just occurred. Great news as I have been sleeping so much better the last week, or so!

Hopefully, I didn’t offend or piss anyone off with this post. That wasn’t the intent. I wanted people to have a better insight of what I have been dealing with, not to mention what my family is having to deal with. ALS is a brutal disease. It certainly hasn’t spared us thus far. Now excuse me while I go get Gabby, I have snot running down my nose and into my mouth. No lie! :-)



Sallie Newton

I love Sallie Newton. She (with a little help from her husband Scott ) raised three amazing boys. Everyone in town knows her (many call her the mayor). Since I’ve been sick she has cooked for me countless times, baked for me even more. She hates ALS. Today, she ran ten miles for me. Thank you Sallie, I will forever be grateful for you kindness and devotion.


Tieg Bean

Every now and then, I meet someone I know is truly special. A one of a kind person. Tieg Bean goes down as one of them. I know his parents (great people), but I had never met Tieg, until one day, right after my diagnosis, he came to my house and said “I want to help you”. He went on explaining to me about his foundation, The Pink Whales Foundation (  It is made up of ex college lacrosse players (Tieg played at Bryant) who play lacrosse, party and raise money for people in the community who need help (like the marathon bombing victims (they raised several thousand $)). He wanted to do a golf tournament for ALS. So the KP41 Golf Tournament was formed (

I don’t know about you, but when I was in my early 20s forming a nonprofit to help others was the furthest thing from my mind. Not Tieg’s. You don’t want your kids to grow up like our President, you want them to be like Tieg Bean. If you have a couple of spare nickels in your pocket consider tossing some their way.

Well on a final note and the reason I’m hacking with my eyes today is to report some good news. Tieg is going to get married! He and his girlfriend Sam announced on St. Patrick’s Day. Congratulations you two!


happy anniversary!

25 years ago Elizabeth and I decided to get married in Charleston, SC, our home at that time. There was one problem, no one would marry us. The Catholic church wouldn’t marry us outdoors (we wanted to get married on a plantation). The Baptist church wouldn’t marry us, because I was Catholic. Matter of fact, one of the preachers told me that I was going to hell just for being Catholic! Anyhow, we ended up finding a wonderful man to officiate over us and we did it. Lord knows it hasn’t been easy….but we did it! Happy Anniversary E.. Thank you for taking care of me.


Fischer DeBerry

After a disaster of a freshman year, he talked me into staying at the Academy. After my sophomore year (after we went 12-1), he was courted by just about every major college that had an opening for a head football coach. He turned them all down and stayed with us at Air Force. He went on to coach 23 seasons at Air Force, 17 of them winning and 12 bowl games. He got inducted into the College Football Hall of Fame. Fischer DeBerry is a great man. He made so many of us better men ourselves. I will always be grateful to him for helping me get through some tough times and remaining at the Academy. Thank you Coach.


The KP41 Fall Classic is here


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!

Elizabeth and Kreg