Top Ten

ALS sucks.  This a non debatable indisputable truth, yes ALS does suck. I could easily compose a Top 100 or even 500 list of reasons why ALS sucks, but why bother.  In the immortal words of Bret Micheal's "every rose has its thorn" so I figure it is likely that my thorn could have a rose.  So without further delay, here is Kevin's Top Ten Reasons ALS Does NOT  Suck

10. You always get a good parking space.

 9. You never have to do the dishes, clean out the gutters or change a flat tire.

 8. No working late or night shifts or weekends or holidays or piles of paperwork.

 7. You don't have to worry about all the treadmills being taken or pulling a muscle working out.

6. All the pretty girls want to take their picture with you, sometimes they even steal a kiss.

5. No shoes is good shoes so I rarely wear any, decorations when I go out.

4. Nap time and sleeping in are not just allowed but encouraged

3. You get to meet the most amazing people - other PALS and CALS

2. Underwear is optional, heck pants are even optional with a good lap blanket.

1. Ice cream!  As much as you want as long as you can find someone to feed it to you. ICE CREAM!

     So there you have it, my personal walk down the sunny side of the street.  You may have some suggestions of your own, and I would love to hear them; but remember: ALSucks!

Tom Swift

This entry is dedicated to Tom Swift, ALS warrior and friend who passed away January 24th: Someday I hope that others will see the Jesus in me as easily as they saw Him in you.

In the wake of recent events, much has been made of the ability to form real relationships with people we have only met online.  For many of us in the ALS community, the internet has allowed us to get to know others who share our experiences and the friendships we form are no less real than those we have with people we see regularly.  Every once in awhile we are fortunate enough to find a friend that  we just click with - you know, the kind of friend that whether it has been two days, two months or two years you can pick right up where you left off.  I have been blessed with two such friends from my life before ALS - Paul Stork and Cliff Ford, and two internet PALS - Jason Pacetti and Tom Swift, who have now both passed on. As I considered these friendships, I recalled the commitment I made when I was diagnosed; first, I would not lose my faith in God, second I would not lose my sense of humor.  I realized that Jason shared my quirky sense of humor and among other things, Paul, Cliff and Tom are all men of great faith. With this in mind, I believe the best way to honor Tom is to share  the faith that meant so much to him.

Since I entered into a personal relationship with Jesus, my eyes have seen the world in a whole new way.  I guess this should not surprise me since the Bible says "therefore, if anyone is in Christ, he is a new creation; old things have passed away, behold all things  have become new."(2 Cor 5:17)  One thing I never get tired of are the ways God reveals how intimately and personally He knows me.  Now not everything is always easy for believers (hello ALS), but I can't imagine  even a normal life without Christ much less dealing with the day to  day difficulties of ALS without Him.  John 3:16 promises " God so loved the world that He sent His only son, so whoever believes in Him shall not perish but shall have eternal life." If you do not have a relationship with Jesus or if you are unsure of going to heaven, please pray the prayer:

Dear Jesus, I believe that you are the son of God who died on the cross for my sins. I repent of my sins and accept the forgiveness your death made possible. I believe you rose on the third day and are seated with God the Father in heaven; I ask you to come into my heart and be lord of my life from this day forward.  Amen.

Welcome to the family, if you prayed this prayer for the first time, please let me know in the comments section.

Enter the Sandman

Let's start the new year off with some fun and games, and what better place to start than the bedroom.  Here are the rules: Each player will need one partner, you may set up your bed however you like before you get into the bed. Now let the fun and challenge begin- the player gets into bed and lies on their back and remains there without moving arms or legs. You can not turn over, scrach an itch, get a drink of water, turn or fluff your pillow or even get up to use the restroom; this is where your partner comes in. If  you get uncomfortable and need to move, simply and politely wake up your partner and ask them to help you move. Repeat as often as necessary throughout the night.

It should be fairly obvious that is how a PALs must sleep every night and also give you an idea of what our partners and spouses go through every night. The statistics vary  widely but say that an adult turns or moves between 20 and 200 times a night, I can safely recommend you don't wake your partner anywhere near that many times at your own risk. So let's say you ignore most of the urges to move during the night, but are stiff and need to turn twice and make a trip to the restroom. Even at this greatly reduced number, you will be waking your partner about every two hours during the night.  Now take into account that most of our spouses get up and go off  to a full time job and you can imagine how the constantly interrupted sleep leaves them feeling.

I started this "game" as a way to demonstrate what a PALs goes through at night, but quickly realized it is even more important to recognize what our partners endure. So a great big thank you to my bride  and all the other partners of PALs who sacrifice day and night.

2012 Year in Review

Like  so many of  you, my year had it's share of  ups and downs. Some people may be surprised that while dealing with the physical ravages of ALS I am still able to enjoy life, but please remember that I'm still the same old Kevin, sports loving, lsu hating, sharply sarcastic, smart, Jesus loving and sometimes funny but always silly.  So here is my year:

• Low- respiratory failure in January and two months in a rehab hospital. while there had a real scare and had to be rushed to the emergency room. i was on tube feeding for over a month and you know i like to eat.
• high- in the days prior to my surgery i was sedated on profaphol and don't remember but the whole family came in. also i was ALLEGEDLY quite entertaining during this time  because the drugs erased my filter - I may have offered to rub Demi's butt, told my nurse it was my turn to give her a bath, got mad at my sister because she wouldn't hide under my bed and asked my doctor and possibly my pastor for a  hooker
• low- Spent Mardi Gras, my birthday, Labor day and Thanksgiving in the hospital; spent August and half of November fighting pneumonia
• high- more than 30 family and friends came to celebrate my birthday at the LTAC; home visits from so many friends- Pat & Kim, Donna Jo, Matt and his beers, James, my girlfriend Cyndi and so many more 
• low- lost many friends this year, some i knew quite well and others were internet friends who lost their fights with the beast. RIP Sean, Scott, Donnie and Don, Ann, Big Al, Michelle, Tizzie and the other warriors
• high - We welcomed new family members when Michelle married Sean in a beautiful ceremony cliff side in California in July. Then Kyle & Eden gave us our second grandson, Anthony Joseph born August 7th; and he was soon joined by Elizabeth Rose born August 30th to Nolan and Sarah.
• low - i have lost almost all movement in my arms and legs so i go from bed to chair and back.
• high - still get out to do the things i like - went to Hayley's wedding, Festival International, the movies, church and life group, and two Tulane games including homecoming on the field with the cheerleaders

In a category all alone as a continuing high point is the love and support i receive from so many especially Mary who is my primary caretaker, Brooke and Shana my home health nurses, pastor Jacob and pastor Rob and our entire OSC family and my beautiful bride Gina who celebrated our 31st wedding anniversary in December. I look forward to  2013 and pray that God will continue to use my life to encourage, inspire and motivate others so let's do this!

eye typed this

Welcome back my friends to the blog that i began so long ago.  Today i choose not to focus on the oh so many frustrating aspects of  living with ALS and there are some real crazy things myself and other PALS and their families deal with daily.

The reason so much time has elapsed between entries is that i lost most of the ability to move my hands and arms back in March.  Although precious little progress has been towards a cure or even an effective treatment for this disease, the advances in equipment and technology have been miraculous.  After going into respiratory failure in January, i elected to go on a ventilator and the Respironics Trilogy is the vent i use at home.  i  am fortunate that i do not have to stay on the vent full time, but the compact size we can easily take it with us so we can get out and about.  The power rehab chair and handicap van provide an easy way to get to all the places i need and want  to go.  Last is my newest miracle, the Tobii communication device, which will provide my voice when and if  i lose my ability to speak.  For now the device has an eye gaze tracking system that allowed me to type this entire blog entry using my eyes and i look forward to sharing more of my thoughts and experiences on this journey.  ALS still sucks but now i have the tools to live to my fullest ability, and i don't plan on wasting a minute of  it. 

Where ya been??? - Part 1

     Well, it certainly has been way too long since I have posted here. Sorry to keep you waiting. We had a short hospital stay at the end of October and then the holidays were upon us. We travelled to South Carolina to spend Thanksgiving with my sister and her family, and it was really special for us because it was the first time in 3 years we had all 5 children together with their families. After that, Christmas and and the New Year brought more family visits. And everything was going well.

     Then on January 25th, I started to experience some dizziness and we determined a trip to the hospital was in order. Little did I know what that trip would eventually entail. While being loaded into the ambulance, I started to experience some shortness of breath, and honestly I don't remember a whole lot after that. So, Gina will help fill in the rest of the story.

  Here I go:
      It is exactly 5.1 miles from our back door to the door of Our Lady of Lourdes Medical Center Emergency Room. When we reached the loading dock, I got out of the front of the ambulance and the back door opened and the EMT handed me a oxygen tank. I asked "What is this for?" and then he opened the other door. Kevin looked like a fish on the dock, gasping for breath. He couldn't catch his breath for anything. The ER doc  wanted to have a CT done on Kev's lungs but they couldn't lay him flat. (Kevin: One of the first things we are told to do when diagnosed is to prepare ourselves and our families for when the end comes; we had those conversations with our children letting them know I had decided NOT to be ventilated.)
     The ER doc told me he wanted to intubate Kevin and I knew that was not what he wanted. So I told him our end of life plans, and he immediately said "lets go talk to Kevin". To my surprise, Kevin agreed to be intubated. I explained exactly what that meant in great detail, making sure he understood that once they put the tube in they would not be taking it out without legal documents being signed. Kevin said "YES, I understand". So, they sedated Kevin with Propofal (more on that later) and intubated him. The CT was clear and he had no clots in his lungs, which led us to the diagnosis of respiratory failure. Oh Boy!
     I called the family, contacted the Red Cross and began bringing in our family, just in case this really was the end. Luckily, we have a great Neurologist and he came in and sat with me and talked about what this diagnosis really meant. In fact, he knew that since Kevin agreed to be intubated, our 5 Wishes plan went out the window, becoming irrelevant. He said that Kevin has plenty life left in him, and he was sure Kevin would opt to be ventilated, but to be sure, we were going to wake him up and let him make this decision. Once the family had gathered and everyone was at the hospital, the doctor took him off the magic juice and woke him up. Of course, this included Kevin fighting the intubation and trying to remove it. The doctor calmed him down and started telling him what was going on. He asked Kevin the ultimate question "Do you want to be ventilated or not?" Kevin obviously agreed to have the tracheostomy done and the ventilator has become the newest member of our family.
     Kevin - Once we determined surgery was imminent it just made sense to also have the peg tube (feeding tube) and suprapubic catheter done at the same time. On January 30th, the surgeries were completed and I left the hospital for a stay in a Long Term Acute Care Facility (LTAC).

One Year

One year ago today the doctor confirmed what I had come to suspect and my prayer life had prepared me to accept. Living with ALS, today I choose to focus not on what I've lost, but on all that I've gained ~ a closer walk with my Jesus, many new friends, appreciation for the simple things, and the outpouring of love and support from family and friends.  Today I am not dying from ALS but I am living with ALS. 

Saints fans were shocked and saddened on Sunday to learn that former player Steve Gleason has been diagnosed with the disease.  He was made an honorary team captain and slowly made his way to midfield for the coin toss and the Who Dat cheer.  Gleason has stated his outlook as follows:

"It's easy to start questioning whether God has this plan and why the plan would include me getting diagnosed with this disease," Gleason said. "And that's when you can start why-ing yourself to death. More than that, I've thought, what does this mean, how does this help me fulfill my purpose in life? If we have a purpose in life beyond being a cog in the human machine, mine is to help inspire people and that's pretty cool. I would like to motivate the world."

Well said Mr. Gleason, well said indeed.  The thing is that I've now met hundreds of PALS either in person or online, and this is how almost all of them face their future with Lou Gehrig's disease. A nurse once told me she thought ALS was the good guys disease because every PALS she met had such a good attitude.  I don't know about that, but for me at least it's just who I am.  So for whatever time the Lord blesses me with here, I am going enjoy it to the fullest and if that motivates or inspires someone, then that's even better.