tag:blogger.com,1999:blog-73934579271023356782024-03-13T06:14:15.122-05:00ALSucks! Observations From My Life With ALSKevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-7393457927102335678.post-78884654131315995772013-02-03T13:27:00.000-06:002013-02-03T13:27:03.167-06:00Top TenALS 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 "<em>every rose has its thorn"</em> 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 <strong><u>NOT</u></strong> Suck<br />
<br />
10. You always get a good parking space.<br />
<br />
9. You never have to do the dishes, clean out the gutters or change a flat tire.<br />
<br />
8. No working late or night shifts or weekends or holidays or piles of paperwork.<br />
<br />
7. You don't have to worry about all the treadmills being taken or pulling a muscle working out.<br />
<br />
6. All the pretty girls want to take their picture with you, sometimes they even steal a kiss.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-1uonKDnbfy4/UQ3kEpzz2_I/AAAAAAAAAFw/rCnjSHeknF0/s1600/Tulane.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="http://4.bp.blogspot.com/-1uonKDnbfy4/UQ3kEpzz2_I/AAAAAAAAAFw/rCnjSHeknF0/s200/Tulane.jpg" width="200" /></a><a href="http://3.bp.blogspot.com/-qNzDMjJ8w88/UQ3j8-8PGOI/AAAAAAAAAFo/VUGug2Yztdo/s1600/734912_10151372813947485_132908088_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="http://3.bp.blogspot.com/-qNzDMjJ8w88/UQ3j8-8PGOI/AAAAAAAAAFo/VUGug2Yztdo/s200/734912_10151372813947485_132908088_n.jpg" width="200" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-Vm7Iklr4qAI/UQ3kMPamE-I/AAAAAAAAAF4/aZD_Y9l16Qs/s1600/uso.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="http://2.bp.blogspot.com/-Vm7Iklr4qAI/UQ3kMPamE-I/AAAAAAAAAF4/aZD_Y9l16Qs/s200/uso.jpg" width="200" /></a></div>
5. No shoes is good shoes so I rarely wear any, decorations when I go out.<br />
<br />
4. Nap time and sleeping in are not just allowed but encouraged<br />
<br />
3. You get to meet the most amazing people - other PALS and CALS<br />
<br />
2. Underwear is optional, heck pants are even optional with a good lap blanket.<br />
<br />
1. Ice cream! As much as you want as long as you can find someone to feed it to you. ICE CREAM!<br />
<br />
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!Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com3tag:blogger.com,1999:blog-7393457927102335678.post-36348900210212589792013-01-28T22:19:00.000-06:002013-01-28T22:23:06.561-06:00Tom Swift<em>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.</em><br />
<em></em><br />
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.<br />
<br />
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:<br />
<br />
<strong>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.</strong><br />
<strong></strong><br />
Welcome to the family, if you prayed this prayer for the first time, please let me know in the comments section.Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-34197824514290223502013-01-10T17:04:00.001-06:002013-01-10T17:04:15.943-06:00Enter the SandmanLet'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.<br />
<br />
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.<br />
<br />
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.Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-85193168093599837842013-01-01T20:51:00.002-06:002013-01-01T20:51:32.233-06:002012 Year in ReviewLike 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:<br />
<br />
<ul>
<li>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.</li>
<li>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</li>
<li>low- Spent Mardi Gras, my birthday, Labor day and Thanksgiving in the hospital; spent August and half of November fighting pneumonia</li>
<li>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 </li>
<li>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</li>
<li>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. </li>
<li>low - i have lost almost all movement in my arms and legs so i go from bed to chair and back.</li>
<li>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</li>
</ul>
<br />
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!<br />
<ul>
</ul>
<br />
<ul>
</ul>
Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-65279130926559341712012-12-15T22:33:00.000-06:002012-12-15T22:33:05.830-06:00eye typed thisWelcome 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.<br />
<blockquote class="tr_bq">
<div style="text-align: justify;">
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. </div>
</blockquote>
Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com3tag:blogger.com,1999:blog-7393457927102335678.post-10063678575391646832012-05-28T18:07:00.001-05:002012-05-28T18:07:16.251-05:00Where 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. <br />
<br />
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.<br />
<br />
Here I go: <br />
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.)<br />
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!<br />
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. <br />
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).Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com3tag:blogger.com,1999:blog-7393457927102335678.post-19133873167226553382011-09-29T15:46:00.000-05:002011-09-29T15:46:30.069-05:00One Year<span class="messageBody translationEligibleUserMessage" data-ft="{"type":3}">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. </span><br />
<br />
<span class="messageBody translationEligibleUserMessage" data-ft="{"type":3}">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:</span><br />
<br />
<span class="messageBody translationEligibleUserMessage" data-ft="{"type":3}"><em>"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."</em></span><br />
<br />
<span class="messageBody translationEligibleUserMessage" data-ft="{"type":3}">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.</span>Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-65880973340641444312011-09-21T16:13:00.001-05:002011-09-21T18:48:56.562-05:00Walk this WayThis 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.<br />
<br />
<a href="http://1.bp.blogspot.com/-FQF0lzDdcMs/Tno5g_zz4HI/AAAAAAAAAEQ/BHOUg_eeG-A/s1600/2010+walk.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="http://1.bp.blogspot.com/-FQF0lzDdcMs/Tno5g_zz4HI/AAAAAAAAAEQ/BHOUg_eeG-A/s320/2010+walk.jpg" width="320" /></a>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! <br />
<br />
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!<br />
<br />
<a href="http://web.alsa.org/site/TR/Walks/Louisiana?px=2845409&pg=personal&fr_id=7373">LAFAYETTE WALK TO DEFEAT ALS</a>Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com0tag:blogger.com,1999:blog-7393457927102335678.post-35450852712134746012011-09-07T21:06:00.000-05:002011-09-07T21:06:10.694-05:00Training the DragonWhile 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.<br />
<br />
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.<br />
<br />
<br />
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. <br />
<br />
.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<br />
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 <br />
Super Bowl Saints 31 Chargers 27 ( okso I'm a homer ) <br />
<br />
<br />
.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<br />
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 .Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-45720071460437554992011-08-24T22:23:00.044-05:002011-08-25T14:34:46.388-05:00Good News & Bad NewsIt 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:<br />
<a href="http://bostonherald.com/jobfind/news/healthcare/view/20110821breakthrough_could_lead_to_effective_treatment_for_als">http://bostonherald.com/jobfind/news/healthcare/view/20110821breakthrough_could_lead_to_effective_treatment_for_als</a><br />
<br />
<br />
<em>"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</em>"<br />
<br />
<em>"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.</em><br />
<em>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."</em><br />
<br />
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.<br />
<br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">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 <em>Often Awesome </em>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.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/Lc0hZbir7T4?feature=player_embedded' frameborder='0'></iframe></div>Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com2tag:blogger.com,1999:blog-7393457927102335678.post-4514317767036640862011-08-08T11:15:00.000-05:002011-08-08T11:15:24.845-05:00Silly SongsWe 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.<br />
<br />
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.<br />
<br />
<br />
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:<br />
<i>Young Honkety Hank, a mechanical boy<br />
Built himself the silliest toy<br />
An automobile that went when he run it<br />
The neighbors all said that he shouldn't o' done it.<br />
<br />
The poofiest car that a kid ever built<br />
All painted and patched like an old crazy quilt<br />
'Twas made out of boxes and tin cans and such<br />
That didn't have even a brake or a clutch.<br />
<br />
'Twould jiggle and twiggle and wiggle and giggle<br />
And mutter and sputter and flutter<br />
Would cough and sneeze and and wheeze<br />
Down the street with a terrible clutter.<br />
<br />
That old hunk-a-junk would make anyone laugh<br />
The motor inside was an old phonograph<br />
The wheels were wobbly and bubblegum tires<br />
And all would every time it backfired.</i><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/ErTcvK94Ulo?feature=player_embedded' frameborder='0'></iframe></div><br />
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<br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><object width="320" height="266" class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="http://2.gvt0.com/vi/_EPsuOEH1fY/0.jpg"><param name="movie" value="http://www.youtube.com/v/_EPsuOEH1fY&fs=1&source=uds" /><param name="bgcolor" value="#FFFFFF" /><embed width="320" height="266" src="http://www.youtube.com/v/_EPsuOEH1fY&fs=1&source=uds" type="application/x-shockwave-flash"></embed></object></div><br />
3) My Mule Charley - this was my personal favorite, sorry couldn't find the lyrics but did find an audio snippet.<br />
<a href="http://www.themadmusicarchive.com/song_details.aspx?SongID=7446">My Mule Charley</a><br />
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!"<br />
<br />
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.<br />
<i><br />
</i><br />
<i><br />
</i><br />
<br />
<br />
<br />
Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-83574376700150429682011-07-29T12:51:00.000-05:002011-07-29T12:51:31.403-05:00Today 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.<br />
<br />
<br />
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:<br />
<br />
<i><span data-jsid="text">Everyone is crying about reggie bush, he never did anything for the saints</span></i><br />
<h6 class="uiStreamMessage" data-ft="{"type":1}" style="font-weight: normal;"><span style="font-size: small;"><i><span class="messageBody" data-ft="{"type":3}">hope the Dolphins turn their stadium sideways since that's the direction Reggie likes to run!</span></i></span></h6><h6 class="uiStreamMessage" data-ft="{"type":1}" style="font-weight: normal;"><span style="font-size: small;"><span class="messageBody" data-ft="{"type":3}"><span style="font-size: large;"><span style="font-size: small;">Maybe it's the LSlosers who hate all things USC, maybe it's the Kim Karscrashingagain factor, maybe they're dedicated Bush bashers, maybe they're all blind, but they're definitely wrong. The facts are that Reggie has caught more passes than any other RB over the past five seasons, accounted for over 4,000 yards of offense and 33 touchdowns. In the playoff win over reigning NFC champion Cardinals, Bush led the team onto the field and then onto victory with an electrifying performance.</span> </span> </span><i><span class="messageBody" data-ft="{"type":3}"> </span></i></span></h6><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/zB7zUoAzDNw?feature=player_embedded' frameborder='0'></iframe><span style="font-size: small;">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.</span><br />
<br />
<br />
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!Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-81130585203222182332011-07-20T15:53:00.000-05:002011-07-20T15:53:29.161-05:00Welcome 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.<br />
<br />
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).<br />
<br />
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. <br />
<br />
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. <br />
<br />
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!Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-14580773180557782822011-07-06T17:15:00.000-05:002011-07-06T17:15:38.147-05:00I'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? <br />
<br />
OK, I can do this - it's not that big a deal, right? Well, days aren't a problem because my home health aids are here, but after 6pm...Ryan was working offshore but would be back in before Gina left, so Dad duty for him. Tuesday after work Gina headed out leaving us to man up and handle things. Ryan is a big help around the house but has not faced clean the caboose or shower time before. Now maybe it's just me, or maybe it's a man thing, but I have not been ready to allow any of my children to do these tasks for me, and guess what, I'm still not. Home health sends out a new worker and within an hour they have access to the rear exit, but my kids no way, no how. I realize that one day I may have to give in on this, but I hope for a long time I can be the one who cleaned and bathed them without them returning the favor. <br />
<br />
Our biggest concern was really whether or not I would be able to wake Ryan to help get me out of bed for a middle of the night potty run; he solved that by staying awake until I called for him around 2:30am. Luckily for us no clean up needed! We made it through day two as well a the wake up took a lot longer this time. Thanks to Ryan for the help! Meme's surgery was a success, she provided some great entertainment while on the heavy duty pain meds, and Gina headed home Thursday evening. So I'm a big boy now and know that I can make it without her, at least for a few days. This is a big deal because caregivers have a fantastically difficult job, and need a chance to get away for a break every once in a while. I know I can handle it and she can make plans for a girl's weekend coming up soon because I'm a big boy now.Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-63586825865933253302011-06-21T13:13:00.000-05:002011-06-21T13:13:54.861-05:009 monthsThis is a difficult video to watch, even for me, but if you haven't seen it yet take the time to watch.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/9lEKwYosQg4?feature=player_embedded' frameborder='0'></iframe></div><div style="text-align: center;"> <b>Often Awesome: Episode 32</b></div><br />
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.<br />
<ul><li>7am - Wake up, shower, dress > I can roll to my sides but Gina has to help me sit up and get to the shower. I can stand with the hand grips and wash my hair, some days I can the soap. I shave using an electric razor and brush with electric toothbrush. G dresses me for the day, shorts and T shirts for summer.</li>
<li> 8am - Breakfast, helpers > Usually before she leaves for work I get morning meds ( mostly supplements), a cup of coffee through a straw and cereal for breakfast. Good news is I can still eat and drink all foods and I still feed myself. The home health ladies arrive during my quiet reading and prayer time.</li>
<li>9am -noon- TV, computer > Morning First Take on ESPN2, Quick Pitch on MLB Network maybe some jazz or gospel music depending on the mood. Facebook, updating fantasy team lineups, reading other blogs and alsforums.com keep me busy most mornings. Restroom trips require assistance from the ladies; they get to unwrap the package and handle clean up on aisle five! Not sure I'll ever get used to private parts being public parts but I don't really have that choice so I try to make the best of it.</li>
<li>noon -5pm.- lunch, Jeopardy! > All those years in fast food means I still eat a late lunch, then it's reading or maybe a movie. We get in the range of motion exercises to keep me limber and most days a power nap. Then the hilight of the afternoon, Jeopardy at 4:30, I'll take Morons for a thouusand Alex.</li>
</ul>I know, sounds really boring, but it's not so bad. I get an occassional visitor, always appreciated, and we do get out of the house regularly. I have a new platform walker which should get me up in the house more and my father's day present was a sturdy new bar stool I can use in the kitchen, maybe I can even get cooking again! While it takes more effort, more help, more planning and more time, ALS has not yet stopped me from doing anything I've really wanted to do. Mardi Gras, Jazz Fest, wedding, Astro game we've done them all! Looking forward to Hayden Lynn getting here for her summer visit and all the fun that we'll have together, time to make another deposit in the memory bank. <br />
<br />
*** It took me 3 hours 15 minutes to type this blog entry.Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-88615352132323723492011-06-16T15:05:00.000-05:002011-06-16T15:05:21.336-05:00Wedding WeekendWell, what a weekend it was as we welcomed Sarah and Caleb to the Connell family. The trip to Houston has been a breeze the past few times and it was clear sailing again. First on the agenda was Nolan's adoption of Sarah's 16 month old son Caleb. When we got to the court house, we found out that the hearing was upstairs and the elevator was broken. Uh oh! While I was prepared to wait it out down in the lobby, the judge was persuaded to move downstairs into a different courtroom. With the families crowded in and a couple of surprises along the way, the judge finally got to say "You are now officially Caleb Issac Connell" to which he responded with a long loud raspberry, priceless!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-b2h3-45njrU/Tfo6VC5BJqI/AAAAAAAAAD4/LVxiKfoEiHk/s1600/nolan+sarah+caleb.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/-b2h3-45njrU/Tfo6VC5BJqI/AAAAAAAAAD4/LVxiKfoEiHk/s320/nolan+sarah+caleb.jpg" width="320" /></a></div>The hi light of Friday's rehearsal dinner was me playing chase in my power chair with Caleb, we went around the room about 100 times laughing and having fun. Up early on Saturday to be at the country club for 8:30am, the guys enjoyed a peaceful morning on the back patio before heading in to get into the tux. The wedding was held outside overlooking the rose garden, a little warm but doable, brides maids in red and guys black tuxedos with red tie and vest. Nolan wore his Marine dress uniform and Sarah was simply stunning in her gown.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-NjRYkqvk4-o/TfpGPNqpWUI/AAAAAAAAAD8/dnxc0YAOaAU/s1600/wedding.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://3.bp.blogspot.com/-NjRYkqvk4-o/TfpGPNqpWUI/AAAAAAAAAD8/dnxc0YAOaAU/s320/wedding.jpg" width="320" /></a></div><br />
Long time family friend Clint Summers did a fantastic job with the service and proud poppa teared up more than once. With family and friends gathered, these two childhood friends declared their vows and became one new family. The reception followed with yummy food, dancing, cake and tons of fun. I learned that the power chair doesn't do a very good Cupid Shuffle, but with a little help I was able to dance with my honey, at least until my pants started to droop and almost tripped me. I sure hope that somehow I'll have many more chances to dance with the one I love! The happy couple changed and headed off for their honeymoon cruise and we wrapped up the party in style.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-FVOK6YMQHRY/TfpdBOXvvTI/AAAAAAAAAEA/XxCv35rTkcw/s1600/wed+fun.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="156" src="http://3.bp.blogspot.com/-FVOK6YMQHRY/TfpdBOXvvTI/AAAAAAAAAEA/XxCv35rTkcw/s320/wed+fun.jpg" width="320" /></a></div>A very special thank you to our dear friends and now family, Sarah's parents David and Anna Valle, for planning and executing a fantastic weekend for all of us. We've known for a long time that God brought us together by divine appointment and you have been the biggest blessing in our lives, look forward to seeing our kids live happily ever after!Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-78518633587528996302011-05-29T14:37:00.000-05:002011-05-29T14:37:44.999-05:00Missing My KitchenSo 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. <br />
<br />
Growing up in New Orleans where food is at the center of everything, where chefs are local royalty and with a Dad who was a very good cook, I guess it was inevitable I'd learn my way around the kitchen. What I was surprised by was that I LOVE to cook; it is where my creativity comes out. Unfortunately now that my hands and arms are losing strength and fine motor control, I just can't handle the pots and pans and since Gina insists I keep all ten fingers, I'm not allowed to use my chef knives.<br />
<br />
While I figure my way around my new physical limitations, I have undertaken a challenge of monumental proportions...I have taken Ryan into the kitchen and actually produced edible dishes. You see while all the other children have passable culinary abilities, Ryan would need a recipe to boil water. Under a watchful eye, very specific directions and just a wee bit of good natured commentary, I have at least been an active participant in getting him through some basic items; we even managed southwestern corn and black bean salad for Life Group. <br />
<br />
I also have been slack in completing the Dad's recipe book I promised Brigid many moons ago and I've had more requests, so I may have to live vicariously through my recipe writing. I'm not giving up finding the right tools that will get me cooking again, as they say "where there's a will, there's a way". Until then, guess I'll have to get my fix with Giada, Rachel, Bobby Flay and the Top ChefsKevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com3tag:blogger.com,1999:blog-7393457927102335678.post-1417967873921162312011-05-17T11:25:00.000-05:002011-05-17T11:25:05.756-05:00Weekend Report #3And now, the MAIN EVENT! All of the fun so far was merely an appetiser for Saturday and Sunday at the New Orleans Jazz and Heritage Festival, which IMHO is a better reason to visit the Big Easy than Mardi Gras. This year marked the 42nd year of the fest and the third year in a row for me; while it was an annual excursion during my college days, most of my years from 82 -2006 were spent away from Louisiana. If you like great live music or great food or spending the day hanging out with friends, put this on your must do list.<br />
<br />
The weather was perfect > sunny breezy and mid 80's with no rain in the forecast, so armed with plenty of sunscreen and the loaner power chair supplied by the ALS Association, we headed for the Fairgrounds. For the PALS and CALS who read this, I have to share how handicap friendly this event is. First, the only on site parking allowed is strictly for the handicapped, it's not cheap but was still less than it would have cost the four of us to ride the shuttle and we were yards away from the entrance. Upon entering you could pick up a key for the wheelchair accessible port o potties which were plentiful around the grounds and clean because they were kept locked. Special access sections were barricaded off in front of each stage for the handicapped providing VIP level views of the artists while the tented venues also had dedicated entrances and a widened aisle for wheelchair operation. All of the food and drink booths had wheelchair height counters and the asphalt paths winding through the infield made it easy to get around. Being relatively new to using the power chair, I must say the set up made the event that much more enjoyable!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-KbpIoDBYOXY/TdHoUKFpS5I/AAAAAAAAADI/ZGt2dWF5K8k/s1600/jazz+fest.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-KbpIoDBYOXY/TdHoUKFpS5I/AAAAAAAAADI/ZGt2dWF5K8k/s320/jazz+fest.jpg" width="320" /></a></div><br />
<br />
So here's the run down of the musical acts we caught at the fest: Saturday<br />
<ul><li>Shamarr Allen & the Underdawgs</li>
<li>Geno Delafose & French Rockin Boogie</li>
<li>James Andrews & the Crescent City Allstars </li>
<li><br />
</li>
<li>Trombone Shorty & Orleans Avenue</li>
<li>DJ Soul Sister</li>
<li>Jimmy Buffet</li>
<li>Fourplay</li>
<li>and Aaron Neville singing in the Gospel Tent</li>
</ul><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-yNpPwbr1kHY/TdHoYLsoVdI/AAAAAAAAADM/iUaZhOY5lV8/s1600/jz+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="238" src="http://3.bp.blogspot.com/-yNpPwbr1kHY/TdHoYLsoVdI/AAAAAAAAADM/iUaZhOY5lV8/s320/jz+2.jpg" width="320" /></a></div>Sunday's lineup:<br />
<ul><li>Grandpa Smalls & Playing for Change</li>
<li>Papa Grows Funk</li>
<li> Michael Franti & Speardhead</li>
<li>The Radiators</li>
</ul><br />
<br />
<br />
<br />
The best way to experience food at the fest is to get a little portion of a lot of different dishes and share them around. So here's the festival foods list <br />
<br />
<ul><a href="http://4.bp.blogspot.com/-7J7nk3uq724/TdHojW2k_pI/AAAAAAAAADU/3x6pnArrOlc/s1600/the+gang.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-7J7nk3uq724/TdHojW2k_pI/AAAAAAAAADU/3x6pnArrOlc/s320/the+gang.jpg" width="320" /></a>
<li>Crawfish bread</li>
<li>crawfish sacks</li>
<li>oyster patties</li>
<li>softshell crab po boys</li>
<li>cracklins</li>
<li>shrimp flauta</li>
<li>crawfish beignets </li>
<li>pheasant & andouille gumbo</li>
<li>crawfish Monica</li>
<li>fried green tomatoes</li>
<li>seafood stuffed mushrooms</li>
<li>key lime tarts</li>
<li>strawberry shortcake</li>
</ul>One of the special treats of the Jazz Fest is when musicians get together with friends for unique one time performances. We saw Sonny Landreth and Alan Toussaint with Jimmy Buffet, Amanda Shaw fiddling with Michael Franti and the Radiators farewell performance where they were joined by Warren Hayes, Michael Doucet and the Bonerama horns. WOW! What a great time we had, save the datess for 2012 April 27 - May 6th, see you there!Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-4978537984899119872011-05-14T16:13:00.000-05:002011-05-14T16:13:48.505-05:00Weekend Report #2When the reality of my ALS diagnosis set in last year, I was encouraged to consider doing some of the things on my "bucket list" while I was able to enjoy myself. Last year our church had done a series on <b>30 Days To Live</b>, and we had discussed the topic at length with our home group. Tim McGraw's song talks about skydiving, mountain climbing and bull riding, but these held little interest for me; I wanted to spend as much time as possible with my family and friends.<br />
<br />
So at the beginning of the year when we began planning for Jazz Fest, I invited my college fraternity brothers and little sisters to stop putting off that reunion we'd been talking about for so long and make the trip to New Orleans this year since I don't know how many more I'll be able to attend. The response from so many far away friends was overwhelming and we gathered on Friday to reconnect, drink a few beers and share some memories. The corner of Broadway and Zimple was special to these Tulane Alumni for two reasons: the Pi Kappa Alpha fraternity house and The Boot. New Orleans is one of the few places where you can find a bar filled with a mixed crowd of college kids and 50 somethings at noon on a Friday and no one thinks it's unusual.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-LKKTO_i-LVg/Tc7WPo6Yy4I/AAAAAAAAAC8/wJpZ2vV84K4/s1600/Pikes+at+the+Boot.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/-LKKTO_i-LVg/Tc7WPo6Yy4I/AAAAAAAAAC8/wJpZ2vV84K4/s320/Pikes+at+the+Boot.jpg" width="320" /></a></div>As I was wheeled into the bar where I'm sure I should have been wheeled out many times in my college days, it was all I could do not to tear up as I saw my friends waiting to greet me. Thank you for making the trip and thanks to the spouses who allowed you to be away from home on Mother's Day. Here's the group > Pat and Kim from Pittsburgh, Donna Jo from Orlando, John from New Jersey, Ben from Atlanta, Greg from Houston, Stacey from Savannah and Des from Jax as well as Jon and Maite who live in Nola. The only thing that put a damper on the day was news that our old frat house was soon to be demolished. That brought back memories of room mates, Babe's spoon, and the great theme parties like Heaven n Hell night, the New Jersey Saturate and the Miami Beach Party with the truckload of sand filling the bottom floor. Before heading off to Mandina's for shrimp, oyster and roast beef po boys we trekked across the street for a final visit to the house. As the gang headed out for a night in the Quarter, I headed in to rest up for the next two days at Jazz Fest. Here's the way the story of Pike house ended, thanks to all for making special memories!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-ucu5V1Ad5DM/Tc7vOw4quYI/AAAAAAAAADA/XH5-giWDaDo/s1600/Pike+house.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://1.bp.blogspot.com/-ucu5V1Ad5DM/Tc7vOw4quYI/AAAAAAAAADA/XH5-giWDaDo/s320/Pike+house.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-zJdn0OVo_RA/Tc7vSncHzGI/AAAAAAAAADE/hrNIgOpgu_Y/s1600/demo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-zJdn0OVo_RA/Tc7vSncHzGI/AAAAAAAAADE/hrNIgOpgu_Y/s320/demo.jpg" width="320" /></a></div>Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com2tag:blogger.com,1999:blog-7393457927102335678.post-19829815073487306382011-05-13T12:01:00.000-05:002011-05-13T12:01:33.082-05:00Weekend Report #1<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><br />
<div class="separator" style="clear: both; text-align: center;"></div>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!<br />
<br />
We started the weekend early with Brigid celebrating a birthday on Thursday. We headed to New Orleans with Ryan in tow and met Bri and her friend for dinner at Deanie 's Seafood; yummy boiled crawfish and mounds of fried oysters, shrimp and catfish! We were also joined by two additional special guests for the event.<br />
<br />
Victory was ours as we also celebrated the arrival home of our son Sean! After a struggle to get the Army to approve his compassionate relocation and with the help of ALS Guardian Angels and the media, Sean finally made it to Louisiana! He reported to Fort Polk, LA this week where we hope he will be able to serve out his last two years of duty. Sean had proposed to his girlfriend, Michelle, the previous weekend while camping in Yosemite National Park and she said YES!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-lDcooSGTM7U/Tc1iHWP0dTI/AAAAAAAAAC0/X5c_wR0GaMo/s1600/DSCN0185.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-lDcooSGTM7U/Tc1iHWP0dTI/AAAAAAAAAC0/X5c_wR0GaMo/s320/DSCN0185.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-JZnXQOywJ1I/Tc1iJRO4pEI/AAAAAAAAAC4/eImXTuoo8Ss/s1600/DSCN0188.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-JZnXQOywJ1I/Tc1iJRO4pEI/AAAAAAAAAC4/eImXTuoo8Ss/s320/DSCN0188.JPG" width="320" /></a></div><br />
<br />
As you can see he picked up a few pointers from Dad, getting all romantic and proposing in front of a waterfall, nice job son! Sean and Michelle first met in October 2008 at his brother Kyle's wedding where they were both in the wedding party. Michelle is our daughter in law Eden's childhood friend and such a great compliment to Sean, they'll make a great team. Soon we'll have another wedding to get ready for! If Kyle can get transferred to Fort Polk where they could all serve together and be close to home, that would make this Dad very happy. Of course Gina worries if Fort Polk could handle the Connell brothers, while I say it might not be ready for two California girls. So Thursday was a celebration of family and soon to be family!Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com2tag:blogger.com,1999:blog-7393457927102335678.post-69658323109262297322011-04-21T14:28:00.000-05:002011-04-21T14:28:02.913-05:00Music To My EarsQuick: What's your all time favorite song? Your favorite band? Best concert you ever attended? Best album/cd you own? <br />
<br />
<br />
Music means so much to us as we go through life often tied to our fondest memories and to those years when we're developing our own "voice". Some of my earliest memories are tied to music - my Dad was a drummer for a successful rock n roll band in the late 50's and early 60's. His red sparkle Pearl drum kit and clubs like the Swamp Room are distant but fond memories. Unfortunately, son did not inherit Dad's musical abilities no matter how hard I tried; couldn't even learn the most basic drum skills. Later I turned my affections to the bass, "playing" in a garage band in high school with childhood friends. Fortunately for them, after dumping me, Michael Ciravolo and Charles Bouis later formed The Models then Human Drama and both are still active in the music industry.<br />
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/uxW3tqI-VzI?feature=player_embedded' frameborder='0'></iframe></div><br />
As a teenager of the 70's I grew up with what is now called "classic rock." Funny how I can't remember yesterday's lunch, but give me three or four notes from a song 35 years old and I can give you the band, the album and the lead singer without batting an eye. Great memories of concerts in City Park Stadium and the Municipal Auditorium, the Day of Rock in the Dome, CYO dances with Zebra, WRNO and albums. Thanks again to Kyle and Eden for getting me my top 5 all time as a Christmas gift!<br />
<br />
My musical tastes these days can best be described as eclectic. On any given day, you might find me listening to classic rock, gospel, country, smooth jazz, contemporary Christian or a mix of those and more. What brought this topic up was my self assigned project of posting daily videos of artists Performing at this year's Jazz Fest. There is no better week of live music anywhere than you'll find in New Orleans the last week of April/first week of May. I am so looking forward to this year with a great group of friends from my college days! In the past few years we've seen great local talents like Jeremy Davenport, Ingrid Lucia, Papa Grows Funk and Bonerama, legends like Allan Toussaint, Simon & Garfunkel and Earth, Wind and Fire who were at their funky best. Watching season one of HBO's <i>Treme </i>has gotten the juices flowing, I'm ready for some Fest! So do yourself and your local musicians a favor and get out to see some live music!<br />
<br />
<br />
Answers: <i>Shooting Star</i>, KISS, Muddy Waters and Eric Clapton together, <i>Led Zepplin IV</i>Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com6tag:blogger.com,1999:blog-7393457927102335678.post-14795676851435308342011-04-07T12:44:00.000-05:002011-04-07T12:44:06.198-05:00PALS & 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.<br />
<br />
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:<br />
<br />
<ul><li> We, both PALS and Hip Hoppers, wear a lot of really baggy loose fitting clothes</li>
<li>We both have trouble getting our pants up high enough to cover our butts or bootays</li>
<li>We both have really cool rides featuring 24's(really big wheels) and/or hydraulics</li>
<li>We both have a lot of bling; PALS with ALS wrist bands, emergency response pendants, pimp canes and hip hoppers with, well, bling</li>
<li>Take a picture of us with our hands up and you never know what signs the fingers may flash at you</li>
<li>We both bring an entourage, our crew, with us every where we go</li>
<li>We're both often involved with experimental drug trials, some are even FDA approved ;0) </li>
<li>Let's face it, you don't understand half of what we say</li>
<li>We both are overly fond of bidets (really, watch a video, you'll see)</li>
<li>And finally, maintaining our lifestyles requires large financial commitments and around the clock attention</li>
</ul>So there, my peeps, me and my shorty was chucklin on this earlier so I brought it your way. <span class="d-r"><i>I start to think and then I sink, into the paper like I was ink. When I'm writing, I'm trapped in between the lines, I escape when I finish the rhyme”</i>-Rakim, I Know You Got Soul </span>Enjoy! <br />
<br />
<a href="http://www.youtube.com/watch?v=CQ27AM3RTv8&feature=related">http://www.youtube.com/watch?v=CQ27AM3RTv8&feature=related</a>Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com3tag:blogger.com,1999:blog-7393457927102335678.post-70051539008211987722011-03-31T10:15:00.000-05:002011-03-31T10:15:21.064-05:00I'm in love...I wrote this a couple of years ago, but it's as true today as then, plus, now that I'm home most days I can watch a million games!<br />
<br />
It's been a long and tawdry affair, full of passion and romance, anger and excitement, joy and disappointment, laughter and tears; the ultimate highs and lows that one can only experience when it's true love. There's been times when we drifted apart a little, a couple of times when I seriously wondered if this was it, yet I'm always seduced back - my feelings may be hurt, but I always get over it. Each year as the cold winds of winter give way to the green grass and warm days of spring, my my mind drifts to my love; bundled up all winter spending time by the hot stove, my love embraces the spring, revels in the dog days of summer and is best in the fall. How did this happen, how did I fall so hopelessly head over heels in love? How can it be "'til death do us part" at age 7? <br />
<br />
Some of my earliest memories are of time spent with my love, I was so young and innocent yet I could not resist, it was love at first sight. My love was at once laid back and easy going, yet difficult and complicated; enjoyed by so many yet truly understood by so few; my love's diamonds are magnificent yet I've come to know the dark secrets and I'm hurt but still in love. We share a history together that can not be easily dismissed, and we are destined to grow old together, til death do us part. I LOVE BASEBALL! There, I've said it, laugh if you like, but I LOVE BASEBALL! <br />
<br />
OK,this probably did not shock those of you who know me well, for how can one even attempt to keep secret a passion that runs so deep? And after all, my love has been with me for longer than most of you have been alive; we are two yet one, I am not who I am without my love of baseball. So I ask again, how did this happen? <br />
<br />
My first baseball memory is of a Friday night one summer, the men's softball league played triple headers on Fridays at St Patrick Park in New Orleans, and as kids we'd fetch foul balls, track down homers in the chest high weeds over the left field fence and hope to take home a cracked bat almost as big as we were. This night I couldn't have been more than six or seven years old, but Dad had to come get me from the park because I wasn't leaving until the last out. In 1967, at age 7, I learned that baseball was not only played on the playground around the corner from my house, but there were superheroes playing in The Majors. Two things stuck from that first year - a former Jesuit Blue Jay with a sweet swing, Rusty Staub, played right field for the Houston Astros and their games came on the radio; and far away in Boston, with the Green Monster lurking behind him, Carl Yastrzemski, won the triple crown leading the league in home runs, RBIs and batting average - who'd thought then that it wouldn't happen again to this day? That was the year my love enticed me and instilled my boyhood dream of playing left field for the Red Sox and started my life long love for the Houston Astros. <br />
<br />
I could go on and on about my baseball memories and almost did, but here are the things that I will always remember about my love - Nolan Ryan signs with the Astros and takes the team to the playoffs for the first time ever, the all too frequent strikes culminating with the cancellation of the 1994 World Series (you really almost lost me that time), taking the kids out of school early to go to an Opening Day game in the Astrodome, Gina and I at Enron Park watching Tom Glavine and John Smoltz defeat the Astros 1-0 in the Divisional Playoffs thanks to a Lugo error, the 18 inning thriller against the Braves that sent the Astros to their first World Series ever and seeing games in the Astrodome, Minute Maid, the Ball Park at Arlington, Camden Yards, old Riverfront stadium with the new park going up next door, Jacobs Field and the Trop in Tampa. My tribute to you, my love, are my sons Ryan and Nolan and a wife who actually encouraged me to name them after my hero. <br />
<br />
Sure, my love, you've got your faults - the DH, the whole steroids mess, abuses of the young Latin American ball players and crazy salary structures that make it difficult for many teams to compete - but just when I start to wonder about our relationship, I open my arms wide and embrace you with a love that has grown for 44 years and is still as fresh and passionate as ever. I LOVE BASEBALL! Enjoy the season and GO ASTROS!Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1tag:blogger.com,1999:blog-7393457927102335678.post-4602859720685265942011-03-27T17:58:00.000-05:002011-03-27T17:58:39.682-05:00One Giant LeapFirst, an update to a posting from January, our son Cpl Sean Connell has received orders to report to Fort Polk, LA by May 10th! This was a big victory keeping him from deploying to Afghanistan and bringing him close enough to spend time with me regularly. Thanks for all your help and support.<br />
<br />
<br />
Yesterday was the Jumping 4 PALS Cajun Style fund raising event for ALS TDI, a non profit corporation dedicated to ALS research. Organized by Sharon Isles, the event was a huge success despite some high winds that limited the number of people able to make their jumps. I was overwhelmed by the response of so many in our ALS Facebook Family who traveled from near and far to show their support and participate. PALS and CALS were in attendance from Louisiana, Mississippi, Tennessee, Arkansas, Maryland, New York and even Canada! Hard work and generous donors allowed the event to raise $9,875 for research to stop and cure this disease!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-Hw-rLZmFNSU/TY-7A5eZlJI/AAAAAAAAACc/dnAXa8uXCOc/s1600/jumping+4+PALS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://1.bp.blogspot.com/-Hw-rLZmFNSU/TY-7A5eZlJI/AAAAAAAAACc/dnAXa8uXCOc/s320/jumping+4+PALS.jpg" width="320" /></a></div><br />
The day was extra special for me as my family and friends again overwhelmed me with their love and support. My daughter Brigid and her boyfriend Jared actually made the jump and enjoyed themselves immensely. My sister Kieran and my niece and nephew volunteered and helped with everything from set up to face painting. Mom and Dwight came out, even after the Ohio St game ;0) Joe Abe was back for another visit and my beautiful bride arranged a fantastic surprise for me. In my note a few weeks ago I was looking for Cliff, well, she tracked him down and he spent the day with us! Great to be reunited again! So to all the incredible people who made this weekend so special: Sharon, Pegi, Kinga, Don, Deb, Cindy, Julie, Billy, Cliff and everyone who donated time, money and prayers, THANK YOU from this PAL!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-swhTiYuNpYg/TY_AhcbHicI/AAAAAAAAACk/xHyei6fQi8I/s1600/jump+crew.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-swhTiYuNpYg/TY_AhcbHicI/AAAAAAAAACk/xHyei6fQi8I/s320/jump+crew.jpg" width="320" /></a></div>Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com2tag:blogger.com,1999:blog-7393457927102335678.post-53135150543894612222011-03-22T09:57:00.000-05:002011-03-22T09:57:43.219-05:00Odds & EndsMarch 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.)<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://lh6.googleusercontent.com/-MufVieAaSCA/TYim49qu2II/AAAAAAAAACY/_IioPnKasis/s1600/Mardi+Gras+2011+%252833%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://lh6.googleusercontent.com/-MufVieAaSCA/TYim49qu2II/AAAAAAAAACY/_IioPnKasis/s320/Mardi+Gras+2011+%252833%2529.JPG" width="320" /></a></div>Next up was my birthday, yep, I turned 51 this year and it was a very happy day. Funny how getting older doesn't seem so bad when you're staring at the alternative. My nephew Mitch had a baseball tournament in town so Kieran came over and we went to three games in two days. The weather was great, the boys went 2-2 and we found a score book ap on the iPad. Baseball rocks!<br />
Through a program with the state of Louisiana which the ALS Association worked to get spots set aside for PALS, we found out last week that I will receive 50 hours a week of home health care. What a relief for Gina to know that I will not be home alone everyday while she's at work. Hope for some really good caregivers, it will be a little weird since G has done pretty much all of the care giving herself so far.<br />
<br />
My quarterly visit to the ALS clinic (clinic brings all the specialist together so I see pulmonologist, neurologist, psychologist, OT, PT, respiratory therapist etc) last Monday went very well. Since we weren't the new kids this time, we had more interaction with the other PALS in the waiting area and enjoyed that very much. I was looking forward to my return visit with the respiratory therapist because my FVC (Forced Vital Capacity) last time was 59% and it needs to be above 50% for the clinical trial. After some good natured ribbing, I blew a 74% FVC! The PT noted only minimal change in strength from December and the ALSA is arranging a loaner power chair for me to use at Jazz Fest in May. A very good visit indeed!<br />
Last weekend brought a visit to Houston to see our youngest son, Nolan, and his fiance, Sarah, and our new grandson, Caleb. It was nice to have some alone time with my sweetie on Friday, then spent Saturday with good friends Linda and Carlos before heading to the Valle's house. Every parent has had the thought when raising their children along side good friends "Wouldn't it be cool if my boy married your daughter one day?" That's exactly what is happening here, David and I worked together in the mid 80's and we've remained close friends; we each have three sons in the military, share a deep faith in Jesus Christ and now will be family!<br />
<br />
Next weekend we'll be heading back to Slidell for the Jumping 4 PALS Cajun Style fund raiser for ALS TDI. Brigid & Jared will be skydiving with people who have been affected by ALS, I'll be on the ground catching! ALS TDI is dedicated to researching and finding a cure for ALS and every dollar raised will help them in their pursuit. Donations are needed, please give if you can to :<br />
<br />
http://community.als.net/jumping4pals<br />
<br />
If you're in the New Orleans area come on out Saturday, March 26th at 9:00am to meet some awesome PALS and CALS, enjoy some jambalaya and see more than twenty sky divers!Kevin Connellhttp://www.blogger.com/profile/12163434127140750247noreply@blogger.com1