KC2U2's blog

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.

Welcome to the team! As an avid sports fan for most of my life, I really appreciate the beauty of a team that comes together and achieves success as a unit. As a better than average fantasy sports manager, I enjoy the challenge of picking the right mix of players to achieve total domination of my opponents. As a PALS, I am coming to appreciate more and more the phenomenal team of people who work so hard to help me live my life to the fullest.

I'm a big boy now! One of my secret weapons to facing the daily difficulties of living with ALS is the beautiful woman who has been by my side every step of the way since my diagnosis. Gina supports, encourages, pushes, helps, provides and is a phenomenal caretaker, but more importantly remains my beautiful bride. Last week her Mom was facing major surgery down in New Orleans and she needed to be there for a few days...uh oh, what, three days without Gina?

Wow! Heart breaking, sobering, inspiring, phenomenal > whatever your take on Tim's video, many of the PALS I interact with are in a similar condition and the rest of us recognize we may be there someday. So after my recent clinic visit and now nine months since diagnosis, figured it was a good time to update what my days are like.

Wedding Weekend

Missing My Kitchen So last night we had one of the angels from our church group cooking and bringing dinner over for us, slow roasted pork roast, home made bar b que sauce, cole slaw and rolls. Thursday night Robert and I spent almost an hour discussing our individual preferences for marinades, dry rubs, cooking times & temperatures and several different bar b que sauce recipes. Since then I realize that of everything ALS has taken its toll on so far, my kitchen time might be what I miss most, even more than going to the restroom alone.

It seems I've been slacking a bit in keeping up with regular posts, sorry avid readers. It is becoming more of an effort to do the typing with frequent breaks required, and frankly there wasn't much going on. Well, last weekend sure made up for the down time, so much action it won't fit in one post!

PALS & Hip Hop, Who Knew? One of the most dangerous parts of ALS for my friends and family is that I have way too much free time on my hands which leads to my mind wandering, and they all know that can be dangerous. So today's great revelation is that PALS(patients with ALS) and Hip Hoppers have a lot in common. I know, right, you never knew this before I brought it up, but now it's perfectly clear. It isn't? Well, fo shizzle, let me bring some illumination for my homies: We, both PALS and Hip Hoppers, wear a lot of really baggy loose fitting clothes

March has been a really crazy, busy month for us so just thought I'd catch everybody up. We started the month off by celebrating Mardi Gras in New Orleans with the family especially enjoyed our out of town visitors, my sister Shannon and her family and my cousin Lynette and her husband Ron. The hi light of the day at the parades was Queen Thoth bringing Flat Kyle up on the float for pictures. (Kyle is our son stationed in Afghanistan, Brigid created Flat Kyle so he wouldn't miss out on the family fun.)

Mardi Gras TIme Today was Mardi Gras Day in my hometown of New Orleans and also here in Acadiana, but the celebration actually started over a week ago. Since Hurricane Katrina, it marks a time when many who were relocated make the trek back home to enjoy a taste of what makes New Orleans so unique and to visit family and friends.