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.
Thursday, September 29, 2011
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!
LAFAYETTE WALK TO DEFEAT ALS
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
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 .
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 .
Wednesday, August 24, 2011
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.
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.
Monday, August 8, 2011
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.
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.
Friday, July 29, 2011
Today marked the end of the Reggie Bush era for the New Orleans Saints and I have this question: can you be undervalued AND overpaid? I believe Reggie was way undervalued by many in the Who Dat Nation while at the same time being an ever increasing burden on the Saints payroll.
I have never understood the Saints fans display of disrespect/ hate/ mockery of such an integral part of the team that brought the city so much joy following the Katrina disaster. In the last two days I've seen these comments in posts on message boards, facebook and others:
Everyone is crying about reggie bush, he never did anything for the saints
Was Reggie perfect? Hell no! He fumbled too much, got hurt too often and looked for the big play when it wasn't there. There was no way the Saints could pay him the more than $11 million his contract called for this year and he rejected the idea of taking a pay cut to stay in New Orleans. So now Reggie will play in Miami and the Saints will come marching in with new players and we'll cheer our Who Dats back to the Super Bowl, but that won't change the fact that #25 made a significant contribution to the Saints recent success. Good luck Reggie, except against the black and gold! You pulled off another miraculous play : undervalued and overpaid at the same time!
I have never understood the Saints fans display of disrespect/ hate/ mockery of such an integral part of the team that brought the city so much joy following the Katrina disaster. In the last two days I've seen these comments in posts on message boards, facebook and others:
Everyone is crying about reggie bush, he never did anything for the saints
Bottom line for me, before Reggie, 0 NFC Championship games and 0 Super Bowls, after Reggie 2 Championships and a Lombardi Trophy! I haven't even mentioned the decoy factor, game planning problems and game changing punt returner that Reggie was. On top of all his on field production, Reggie was great in the community with serious financial contributions to rebuilding projects after the storm.
Was Reggie perfect? Hell no! He fumbled too much, got hurt too often and looked for the big play when it wasn't there. There was no way the Saints could pay him the more than $11 million his contract called for this year and he rejected the idea of taking a pay cut to stay in New Orleans. So now Reggie will play in Miami and the Saints will come marching in with new players and we'll cheer our Who Dats back to the Super Bowl, but that won't change the fact that #25 made a significant contribution to the Saints recent success. Good luck Reggie, except against the black and gold! You pulled off another miraculous play : undervalued and overpaid at the same time!
Wednesday, July 20, 2011
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.
Every great team has a solid foundation they can depend on to perform at crunch time, and my family is my foundation. Between Gina and the kids, my Mom, my brother and sisters and all the nieces, nephews and cousins, I feel a lot of love and get plenty attention. My friends - from childhood to high school and college buddies to work colleagues to our church friends - have provided so much assistance, your visits and phone calls, your support of the fund raisers, the groceries and yard work and the railing, but most of all your laughs and smiles. I also have a special group of friends, the PALS and CALS I've met in person and on line, who share encouragement and frustrations and information and understanding that only comes from having been there and done that. Thanks for walking this path with me (and pushing my chair when I couldn't take another step).
If my team has an MVP, it might just be my ALSA rep, Dora. She has helped us secure home health care, SSDI, all the equipment to make life easier and she leads the monthly support group meetings we enjoy so much. I know she does a great job for all her patients, but I'm sure I'm her favorite! My ALS Clinic team at Lourdes in Lafayette is excellent, no need to head to Houston or Atlanta. On these quarterly appointments I see my neurologist, Dr DeAlvare, the pulmonologist, the dietitian, all the therapists - speech, respiratory, physical and occupational - the psychologist and social worker. My daily routine wouldn't be possible without my team of home health aids who spend their days watching ESPN with me, doing some chores and putting up with me. Finding the really good ones takes some time, but I only want the best on my team so we'll keep trying until we get the right ones.
Last week I added two new players to the team; welcome Brenda and Stacy! Brenda is my in home physical therapist and she is working to help improve balance and strengthen legs and hip muscles through exercises. Stacy is my in home occupational therapist working with me on range of motion exercises and fine motor skills. Stacy's got the cool toys like therapy putty, sponge balls and easy grip utensils. This is one time my competitive spirit and goal setting nature are proving beneficial. With the help of these new team members, I hope to remain limber and strong for as long as possible while battling the beast and praying for the break through to a cure.
And to all of you who have signed up as followers or are regular readers of this blog, thanks for the kind comments and words of encouragement and welcome to the team!
Every great team has a solid foundation they can depend on to perform at crunch time, and my family is my foundation. Between Gina and the kids, my Mom, my brother and sisters and all the nieces, nephews and cousins, I feel a lot of love and get plenty attention. My friends - from childhood to high school and college buddies to work colleagues to our church friends - have provided so much assistance, your visits and phone calls, your support of the fund raisers, the groceries and yard work and the railing, but most of all your laughs and smiles. I also have a special group of friends, the PALS and CALS I've met in person and on line, who share encouragement and frustrations and information and understanding that only comes from having been there and done that. Thanks for walking this path with me (and pushing my chair when I couldn't take another step).
If my team has an MVP, it might just be my ALSA rep, Dora. She has helped us secure home health care, SSDI, all the equipment to make life easier and she leads the monthly support group meetings we enjoy so much. I know she does a great job for all her patients, but I'm sure I'm her favorite! My ALS Clinic team at Lourdes in Lafayette is excellent, no need to head to Houston or Atlanta. On these quarterly appointments I see my neurologist, Dr DeAlvare, the pulmonologist, the dietitian, all the therapists - speech, respiratory, physical and occupational - the psychologist and social worker. My daily routine wouldn't be possible without my team of home health aids who spend their days watching ESPN with me, doing some chores and putting up with me. Finding the really good ones takes some time, but I only want the best on my team so we'll keep trying until we get the right ones.
Last week I added two new players to the team; welcome Brenda and Stacy! Brenda is my in home physical therapist and she is working to help improve balance and strengthen legs and hip muscles through exercises. Stacy is my in home occupational therapist working with me on range of motion exercises and fine motor skills. Stacy's got the cool toys like therapy putty, sponge balls and easy grip utensils. This is one time my competitive spirit and goal setting nature are proving beneficial. With the help of these new team members, I hope to remain limber and strong for as long as possible while battling the beast and praying for the break through to a cure.
And to all of you who have signed up as followers or are regular readers of this blog, thanks for the kind comments and words of encouragement and welcome to the team!
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