Weekend Report #1

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!

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.

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!

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!

Music To My Ears

Quick: What's your all time favorite song?  Your favorite band? Best concert you ever attended? Best album/cd you own? 


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.

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!

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 Treme 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!


Answers: Shooting Star, KISS, Muddy Waters and Eric Clapton together, Led Zepplin IV

PALS & Hip Hop, Who Knew?

One of the most dangerous parts of ALS for my friends and family is that I have way too much free time on my hands which leads to my mind wandering, and they all know that can be dangerous. So today's great revelation is that PALS(patients with ALS) and Hip Hoppers have a lot in common.

I know, right, you never knew this before I brought it up, but now it's perfectly clear. It isn't?  Well, fo shizzle, let me bring some illumination for my homies:

• We, both PALS and Hip Hoppers, wear a lot of  really baggy loose fitting clothes
• We both have trouble getting our pants up high enough to cover our butts or bootays
• We both have really cool rides featuring 24's(really big wheels) and/or hydraulics
• We both have a lot of bling; PALS with ALS wrist bands, emergency response pendants, pimp canes and hip hoppers with, well, bling
• Take a picture of us with our hands up and you never know what signs the fingers may flash at you
• We both bring an entourage, our crew, with us every where we go
• We're both often involved with experimental drug trials, some are even FDA approved ;0)
• Let's face it, you don't understand half of what we say
• We both are overly fond of bidets (really, watch a video, you'll see)
• And finally, maintaining our lifestyles requires large financial commitments and around the clock attention

So there, my peeps, me and my shorty was chucklin on this earlier so I brought it your way.  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”-Rakim, I Know You Got Soul  Enjoy! 

http://www.youtube.com/watch?v=CQ27AM3RTv8&feature=related

I'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!

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?

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!

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?

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.

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.

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!

One Giant Leap

First, 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.


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!

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!

Odds & Ends

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

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!
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.

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!
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!

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  :

http://community.als.net/jumping4pals

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!

Mardi Gras TIme

Today was Mardi Gras Day in my hometown of New Orleans and also here in Acadiana, but the celebration actually started over a week ago.  Since Hurricane Katrina, it marks a time when many who were relocated make the trek back home to enjoy a taste of what makes New Orleans so unique and to visit family and friends. 
Mardi Gras also now becomes a mark in time of the progress of ALS in our lives.  Our family celebrates on Sunday by getting to St Charles Ave very early  and staking out our spot at the corner of Amelia.  The lead crew gets tarps down, chairs out, ice chests unloaded and food tables set up. Others arrive throughout the morning and by the time the parades reach us, there's usually 30-50 friends and family members hanging around.  Two years ago, I was part of the lead crew complete with crazy hat.  Last year we celebrated the holiday and a Super Bowl victory by our beloved Saints, hanging on the Ave waiting until the evening hours to see Drew Brees reign as King Bacchus. 
This year brought a different challenge, would I be able to participate in the family fun?  I'd had great visits with my sisters and their families, friends and my Mom Friday night and Saturday so it was already a great weekend.  Sunday would bring huge crowds, traffic, bathroom issues and mobility problems as well as iffy weather, was it worth the effort and the hassle? Hell yeah, it was! ALSucks in so many ways and the disease takes life away bit by bit and there are some things I just can't do, but this was doable. So we loaded up and headed down to meet the family, an hour later I was in my wheelchair with Ryan rolling me the last two blocks to the party.  The weather turned out perfect, so I sat and got some much needed sun, enjoyed the bands and the parades.  Haven't exactly figured out how to catch beads while sitting in a wheelchair behind two rows of ladders, so if you have any ideas...
Everybody made sure I had plenty to eat and drink, and pictures with everybody, even a picture wearing the toilet seat sunglasses.  We all laughed, played and partied and enjoyed being part of the crowd that was celebrating New Orleans.  As the afternoon went on, we made ready for our escape, said our goodbyes and ventured out to cross St Charles and head to the car.  With Brad providing the lead blocking and Ryan pushing and me shouting "Clear out for the short guy!" we made it to the church parking lot.  While waiting for Gina to bring the car around, one of the little boys asked "Why you got wheels?" to which I replied " I got wheels because I'm a transformer!" and watched his eyes get wide as I rode away.
So I am a transformer and ALSucks is a transformer, it is transforming my body everyday while I am transforming my spirit and my soul everyday.  Facing the monster has challenged me to do what I didn't think I could do, to prioritize the important things in life and to live everyday cherishing it in a whole new way. Romans 12:2 says it best " Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will."

 Mardi Gras 2010 when I could still hold up my right arm