The Brutal Reality that is ALS

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.

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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 (http://pinkwhalesfoundation.bigcartel.com/).  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 (
http://pinkwhalesfoundation.bigcartel.com/who-is-kp41).

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!

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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.

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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.

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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

Gabby’s Graduation

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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.

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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. 

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

 

 

 

Cross Country Trip

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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!

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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!