Thursday, September 29, 2011

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.

Wednesday, September 21, 2011

Walk this Way

This coming Saturday is an anniversary for me, almost exactly one year ago I heard those words that no one ever wants to hear, "Kevin, it is ALS".  As the reality of the situation sank in, we realized quickly that we had to find a way to move forward and get on with living the rest of our lives. Also we knew that we would need help in adjusting to changes that were already occurring and in those that were sure to come in the future. We found that help in the ALS Association and an amazing woman named Dora,whose advice and help and friendship have made such a huge difference this past year.

Saturday will also mark our second participation in the Associations  Walk to Defeat ALS  annual fundraiser put on  by Association chapters across the country. Last year's event was one of the highlight events of the year for me. Held  not long after my diagnosis, I was overwhelmed with the outpouring of love and support  we received from so many friends, family members, coworkers and former class mates.  We formed our team and  decided on the name KC's  Family  Band, and set out to make a difference for the Association.  If  you know me even a little bit, you have probably seen the competitive streak  on display prominently in one way or another. When the walk  day arrived, more than 30 members from  KC's Family Band hit the trail in bright yellow T-shirts  as the  number one fundraising team. We were so excited and delighted to have raised  almost six  thousand dollars!

As KC's Family Band gets ready to hit the trail again Saturday at 9 AM in Girard Park in Lafayette and again the following Saturday at Zephyr Field in Metairie, we are looking forward  to making a significant contribution to the ALS Association. Once again we've got great themed T-shirts,  enthusiastic walkers and me leading the way. However,  the difficult economic trials of the past year have really hampered our fundraising efforts. Currently in second place in Lafayette,  we have raised about $1600 so far. While I recognize the difficult times, I am also aware that the number of  PALS  and the needs of  PALS served by the Louisiana Mississippi chapter of the Association continues to grow. They provide loaner equipment such as power chairs, wheelchairs, communication devices, bathroom equipment and also sponsor support groups and the  Louisiana ALS clinic.  I have personally benefited from all of the services they provide - Jazz Festival and Nolan's wedding would not have been possible without the use of the  power wheelchair, you know how much  these  outings meant to me. So I am taking this opportunity to ask each of you  to please consider making a donation to this incredible organization, large or small every dollar donated will make a difference in the life of a local  PALS. Please use the link below to donate online and from the bottom of my heart, thank you so very much! We are looking forward to celebrating my anniversary with so many friends and amazing members of the ALS community that we've come to know over the past year. Also, if you're reading this and you are able to join us either in Lafayette on Saturday or in Metairie on October -1st, join our team, we would love to have you walk with us!


Wednesday, September 7, 2011

Training the Dragon

While many things haven't changed much in the past 70 years for ALS patients, one thing we do have is the benefit of the advances in technology. You might remember me mentioning a few weeks ago how difficult it was getting to type this blog post. Today I am using a program that allows me to speak and the computer automatically translates it to text; it's called Dragon speak. The more I use it the more accurate it becomes at recognizing and correctly translating what I'm saying, they call this training the Dragon. So today for entertainment purposes only I will not make any more corrections to the translation let's see how it goes.

Let's cover a variety of topics -- first of all, tropical storm lease was a bit of a disappointment for us here at Acadiana. Predictions of rainfall approaching 24 to 26 inches and wins into the 60 mph range didn't come true. We did get some much-needed rainfall but no flooding, and no wind damage just a few small limbs off the contrary. The best part is that this week we have absolutely gorgeous weather, I spent an hour outside this afternoon soaking up some much-needed sunshine and enjoying the cool breeze.

Football seasons here again and that means it's time for the fantasy football draft . we had a great turnout on Sunday and are looking forward to a fun filled trash Talkin great season . Cap'n Crunch is a little weak at the quarterback position flimflam stacked at wide receiver and running back , ready to take the crown back.

.Speaking of football season.,. here are m. fearless prediction. for the 2011 season. --.AFC. East. patriots. 12 and four.,. Nort. Steelers. 13 and three.,. Sout. Texans. 10 and six.,. Wes. Chargers. Lebanon five.,. wildcard. jets. Lebanon five.,. raven. 10 and six
NFC East Cowboys Leba Lebanon, North Packers 13 and three West Cardinals nine and seven  south Saints 12 and four , wildcards Eagles 11 and five Falcons 10 and six
Super Bowl  Saints 31 Chargers 27 ( okso I'm a homer )

.upcoming event.--. Monday. September 12. ALS clinic. . Wednesday. September 14. morning TV. to promote. the walk. to defeat. ALS. Saturda. September 24. Laffey at. walked to defeat ALS. Saturday. October 1. Metairie walked to defeat ALS
 well I'm sure this will be an interesting read and I know it will get better as I get used to the program end even though it's a bit tedious right now it is so much easier then typing this all out.may be I should watch the movie again, and I'll get this Dragon in shapein no time .