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.

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!

LAFAYETTE WALK TO DEFEAT ALS

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 .

Good News & Bad News

It has been quite an interesting few days  in the ALS community!  Being my normal upbeat self, let me share the good news first.  This past Sunday researchers at Northwestern University's Feinberg School of Medicine announced that they have discovered the common cause of all types of ALS.  Here's a link to the full article:
http://bostonherald.com/jobfind/news/healthcare/view/20110821breakthrough_could_lead_to_effective_treatment_for_als


"Dr. Teepu Siddique, a neuroscientist with Northwestern University’s Feinberg School of Medicine whose pioneering work on ALS over more than a quarter century fueled the research team’s work, said the key to the breakthrough is the discovery of an underlying disease process for all types of ALS"

"Ubiquilin2 in spinal and brain system cells is supposed to repair or dispose of other proteins as they become damaged. The researchers discovered a breakdown of this function in ALS patients.
When Ubiquilin2 is unable to remove or repair damaged proteins, the damaged proteins begin to pile up in the cells, eventually blocking normal transmission of brain signals in the spinal cord and brain, leading to paralysis."

While I tend to look at all proclamations like these with a very cautious eye, I am daily being persuaded that this could be the real deal.  With the cause identified, scientists can focus their efforts on finding a treatment and eventually a cure.  With positive reports coming in from two current clinical drug trials, NP001 and Dexpramipexole, and the cause identified, it is safe to say that a fresh wind of hope is blowing through the ALS community.  The FDA approval process can be agonizingly slow, especially given the limited life span PALS face, but whether or not it happens in my lifetime, finding the cure is going to happen.

The bad news is that our community has lost another champion warrior to the beast.  I did not have the privilege to meet Tim LaFollette or his lovely wife Kaylan in person, but his work through the Often Awesome web videos was simply amazing.  Tim had the fore sight to chronicle his journey with ALS starting with diagnosis and the resulting 33 episodes have been described as "Tuesdays with Morrie on steroids".  I have been humbled, inspired, humored, terrified and touched to the core by Tim's story - watch the episode below for a taste.  Tim will be greatly missed, condolences to Kaylan and the Often Awesome Army, we will never give up.

Silly Songs

We recently passed the ten year anniversary of my Dad's passing, and he's been in my thoughts a lot lately.  My sister was talking about some of her favorite Sunday dinners that Dad cooked, and some of the lakefront and backyard bar b ques in the summer that we all enjoyed.  Then my cousin brought up another favorite memory, the silly songs he sang to us when we were kids.

You may recall from an earlier post that my Dad was a musician; he loved to entertain us, or maybe we just bugged him until he gave in.  There may have been more, but the three favorite songs brought smiles and giggles to children in our family for years.  Now with the help of the internet, I'll share them with you.


1) Honkety Hank - not sure Dad knew the whole song, but his sound effects made the tune.  I found out this song was written in 1949 by Pinto Colvig, who was the original voice of Bozo the Clown. Here's some of the lyrics:
Young Honkety Hank, a mechanical boy
Built himself the silliest toy
An automobile that went when he run it
The neighbors all said that he shouldn't o' done it.

The poofiest car that a kid ever built
All painted and patched like an old crazy quilt
'Twas made out of boxes and tin cans and such
That didn't have even a brake or a clutch.

'Twould jiggle and twiggle and wiggle and giggle
And mutter and sputter and flutter
Would cough and sneeze and and wheeze
Down the street with a terrible clutter.

That old hunk-a-junk would make anyone laugh
The motor inside was an old phonograph
The wheels were wobbly and bubblegum tires
And all would every time it backfired.

2) The Unicorn Song - Sung in Dad's best Irish accent, this song by The Irish Rovers was a top 10 hit in1968 and is still popular in Irish pubs today

3) My Mule Charley - this was my personal favorite, sorry couldn't find the lyrics but did find an audio snippet.
My Mule Charley
The rest of the song involves a trip to town to buy a horn, Charley getting into the shop and greats sound effects and a glockenspiel. It ended in a rousing rendition of "Oh Susana!"

So these are the songs that we all have such fond memories of, thanks Dad!  Hope the family enjoys this and maybe shares with the next generation of Connell kids.