Thursday, September 29, 2011

One Year

One year ago today the doctor confirmed what I had come to suspect and my prayer life had prepared me to accept. Living with ALS, today I choose to focus not on what I've lost, but on all that I've gained ~ a closer walk with my Jesus, many new friends, appreciation for the simple things, and the outpouring of love and support from family and friends.  Today I am not dying from ALS but I am living with ALS. 

Saints fans were shocked and saddened on Sunday to learn that former player Steve Gleason has been diagnosed with the disease.  He was made an honorary team captain and slowly made his way to midfield for the coin toss and the Who Dat cheer.  Gleason has stated his outlook as follows:

"It's easy to start questioning whether God has this plan and why the plan would include me getting diagnosed with this disease," Gleason said. "And that's when you can start why-ing yourself to death. More than that, I've thought, what does this mean, how does this help me fulfill my purpose in life? If we have a purpose in life beyond being a cog in the human machine, mine is to help inspire people and that's pretty cool. I would like to motivate the world."

Well said Mr. Gleason, well said indeed.  The thing is that I've now met hundreds of PALS either in person or online, and this is how almost all of them face their future with Lou Gehrig's disease. A nurse once told me she thought ALS was the good guys disease because every PALS she met had such a good attitude.  I don't know about that, but for me at least it's just who I am.  So for whatever time the Lord blesses me with here, I am going enjoy it to the fullest and if that motivates or inspires someone, then that's even better.

Wednesday, September 21, 2011

Walk this Way

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

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

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


Wednesday, September 7, 2011

Training the Dragon

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

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

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

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

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

Wednesday, August 24, 2011

Good News & Bad News

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

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

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

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

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

Monday, August 8, 2011

Silly Songs

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

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

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

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

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

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

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

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

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

Friday, July 29, 2011

Today marked the end of the Reggie Bush era for the New Orleans Saints and I have this question: can you be undervalued AND overpaid?  I believe Reggie was way undervalued by many in the Who Dat Nation while at the same time being an ever increasing burden on the Saints payroll.

I have never understood the Saints fans display of disrespect/ hate/ mockery of such an integral part of the team that brought the city so much joy following the Katrina disaster.  In the last two days I've seen these comments in posts on message boards, facebook and others:

Everyone is crying about reggie bush, he never did anything for the saints
hope the Dolphins turn their stadium sideways since that's the direction Reggie likes to run!
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.  
Bottom line for me, before Reggie, 0 NFC Championship games and 0 Super Bowls, after Reggie 2 Championships and a Lombardi Trophy!  I haven't even mentioned the decoy factor, game planning problems and game changing punt returner that Reggie was.  On top of all his on field production, Reggie was great in the community with serious financial contributions to rebuilding projects after the storm.

Was Reggie  perfect? Hell no!  He fumbled too much, got hurt too often and looked for the big play when it wasn't there.  There was no way the Saints could pay him the more than $11 million his contract called for this year and he rejected the idea of taking a pay cut to stay in New Orleans.  So now Reggie will play in Miami and the Saints will come marching in with new players and we'll cheer our Who Dats back to the Super Bowl, but that won't change the fact that #25 made a significant contribution to the Saints recent success.  Good luck Reggie, except against the black and gold!  You pulled off another miraculous play : undervalued and overpaid at the same time!

Wednesday, July 20, 2011

Welcome to the team!

As an avid sports fan for most of my life, I really appreciate the beauty of a team that comes together and achieves success as a unit.  As a better than average fantasy sports manager, I enjoy the challenge of picking the right mix of players to achieve total domination of my opponents.  As a PALS, I am coming to appreciate more and more the phenomenal team of people who work so hard to help me live my life to the fullest.

Every great team has a solid foundation they can depend on to perform at crunch time, and my family is my foundation.  Between Gina and the kids, my Mom, my brother and sisters and all the nieces, nephews and cousins, I feel a lot of love and get plenty attention.  My friends - from childhood to high school and college buddies to work colleagues to our church friends - have provided so much assistance, your visits and phone calls, your support of the fund raisers, the groceries and yard work and the railing, but most of all your laughs and smiles.  I also have a special group of friends, the PALS and CALS I've met in person and on line, who share encouragement and frustrations and information and understanding that only comes from having been there and done that.  Thanks for walking this path with me (and pushing my chair when I couldn't take another step).

If my team has an MVP, it might just be my ALSA rep, Dora.  She has helped us secure home health care, SSDI, all the equipment to make life easier and she leads the monthly support group meetings we enjoy so much.  I know she does a great job for all her patients, but I'm sure I'm her favorite!  My ALS Clinic team at Lourdes in Lafayette is excellent, no need to head to Houston or Atlanta.  On these quarterly appointments I see my neurologist, Dr DeAlvare, the pulmonologist, the dietitian, all the therapists - speech, respiratory, physical and occupational - the psychologist and social worker.  My daily routine wouldn't be possible without my team of home health aids who spend their days watching ESPN with me, doing some chores and putting up with me.  Finding the really good ones takes some time, but I only want the best on my team so we'll keep trying until we get the right ones. 

Last week I added two new players to the team; welcome Brenda and Stacy!  Brenda is my in home physical therapist and she is working to help improve balance and strengthen legs and hip muscles through exercises.  Stacy is my in home occupational therapist working with me on range of motion exercises and fine motor skills.  Stacy's got the cool toys like therapy putty, sponge balls and easy grip utensils.  This is one time my competitive spirit and goal setting nature are proving beneficial.  With the help of these new team members, I hope to remain limber and strong for as long as possible while battling the beast and praying for the break through to a cure. 

And to all of you who have signed up as followers or are regular readers of this blog, thanks for the kind comments and words of encouragement and welcome to the team!

Wednesday, July 6, 2011

I'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? 

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. 

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.

Tuesday, June 21, 2011

9 months

This is a difficult video to watch, even for me, but if you haven't seen it yet take the time to watch.

 Often Awesome: Episode 32

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.
  • 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.
  • 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.
  • 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 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.
  • 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.
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.

*** It took me 3 hours 15 minutes to type this blog entry.

Thursday, June 16, 2011

Wedding Weekend

Well, 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!
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.

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.
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!

Sunday, May 29, 2011

Missing My Kitchen

So 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.

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.

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.  

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 Chefs

Tuesday, May 17, 2011

Weekend Report #3

And 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.

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!

So here's the run down of the musical acts we caught at the fest: Saturday
  • Shamarr Allen & the Underdawgs
  • Geno Delafose & French Rockin Boogie
  • James Andrews & the Crescent City Allstars

  • Trombone Shorty & Orleans Avenue
  • DJ Soul Sister
  • Jimmy Buffet
  • Fourplay
  • and Aaron Neville singing in the Gospel Tent
Sunday's lineup:
  • Grandpa Smalls & Playing for Change
  • Papa Grows Funk
  • Michael Franti & Speardhead
  • The Radiators

  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

  • Crawfish bread
  • crawfish sacks
  • oyster patties
  • softshell crab po boys
  • cracklins
  • shrimp flauta
  • crawfish beignets
  • pheasant & andouille gumbo
  • crawfish Monica
  • fried green tomatoes
  • seafood stuffed mushrooms
  • key lime tarts
  • strawberry shortcake
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!

Saturday, May 14, 2011

Weekend Report #2

When 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 30 Days To Live, 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.

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.
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!

Friday, May 13, 2011

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!

Thursday, April 21, 2011

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

Thursday, April 7, 2011

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!

Thursday, March 31, 2011

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!

Sunday, March 27, 2011

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!

Tuesday, March 22, 2011

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  :

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!

Tuesday, March 8, 2011

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

Monday, February 28, 2011

Ups and Downs of ALS

What a week! Monday started the week on the upswing when I received a call from my ALSA rep letting me know that there was an unexpected opening in a stem cell clinical trial trial being conducted by TCA Cellular Therapy in nearby Covington, LA.  A quick call, phone screen and fax of the medical records and I was set for a Friday assessment for acceptance into the trial! YAHOO!!
Tuesday wasn't a bad day and that evening was our monthly support group meeting which means a chance for me to get out and visit.  We talked with Dora more about the stem cell trial, heard some encouraging stories and got some questions answered. I might even have a power chair loaner for tooling around Jazz Fest. We unfortunately welcomed a new PALS to the group, so sorry you qualify Vickie and met Tracy who has been fighting the beast for 4+ years.  Breakfast for dinner at IHOP and the excitement of the evening, this is an awesome week!
Wednesday's wake up elicited a grunt from my tired body and I slept in for a few extra hours while Gina and Ryan headed out to work.  The rest of the day was good and we decided we'd go get my haircut when G got off of work.  Knowing she was on the way, I headed for the shower so that I'd be getting out at about the time she arrived home and could help me get ready to go. While in the shower I felt my knees getting weak so I rinsed and went to get out...and the beast struck back. I missed the grab bar and down I went, on my arse buck naked unable to do much more than wiggle out of the way of the ice cold water flowing from the shower head.  Three tries and I got the water turned off, now what.  As I sat on the floor of the shower with my legs sticking out in the open, I checked myself, no blood that's good, nothing really hurts that's good and I hope Gina doesn't freak when she gets here.  I'm thinking can I pray in this shape? Remembering in Genesis that God knew when Adam put on the fig leaf, I figure Adam prayed nakie so can I.  Talk about humbled before the Lord; I prayed, Gina didn't freak and after some maneuvering she and Ryan carried me out and got me seated.  A deep breath, I hadn't had a fall in almost six months, a stiff lower back and a blow to the confidence, but all in all we survived it pretty well (at least G and Ryan are pretending they did).
I got trough the day Thursday, Gina came home at lunch and helped me out.  Life Group at night, we love this special group of friends and the spiritual support they provide.
Friday morning hopes were high as we headed to the assessment and I cranked up one of my Christmas presents from son Kyle, Led Zepplin IV on the ride over, sweet!  FDA was in the office but nurse Teresa was as cool as Scott said, filled us in on details and history of the company and trials. Dr Lasala came in and I am accpeted as PALS #10, great news!  We did discover that one of my prescription meds needs to be stopped for thirty days before the procedure takes place, so now we are shooting for the end of March or early April for the first step.  Finished Friday afternoon in beautiful weather at the ballpark watching a baseball game, and then to my sister's house for the weekend.
Saturday some sun and a softball game before resting in the recliner while the girls got their nails done.  Early dinner and I skipped the parade to stay home and watch The Social Network with my Mom and Dwight and my honey.
So there you have it, a week of ups and one big down, but I'm here and ready for more, maybe not Aaron Rodgers championship belt ready, but good enough to wear nurse Teresa's tiara! Dang I look good!

Saturday, February 19, 2011


First, an update on last week's post: following the blog, we had a TV appearance and newspaper article that told our story.  On Monday, the officer who denied the request reversed his decision and granted approval for compassionate relocation. It still must go through chain of command for approval but we do not expect any obstacles, and hope to have Sean back in Louisiana soon.  Thanks for all of your support!

Now if you facebook, you've probably seen this status from someone this week:
 It's been said that everlasting friends can go long periods of time without speaking and never question the friendship. These types of friends pick up like they just spoke yesterday, regardless of how long it has been or how far away they live, and they don't hold grudges. They understand that life is busy...but you will ALWAYS love them

Well, I am blessed to have a group of friends who fit this description perfectly.  Today I had a visit from two guys I spent so much of my youth with.  Joe Abe and Ron Boone were part of the fantastic crew who worked the Harrison Ave Winn Dixie in the late 70's early 80's.  We worked, played, partied and did those crazy things young people do and NEVER tell their parents about...we fell in love (Joe is married to my former next door neighbor Doodis Ann) together and raised our kids, Joe is our daughter Brigid's godfather.  The thing is we haven't seen each other in at least 10 years!  When Joe found out my diagnosis, he knew right away that ALSucks, his friend Brenda passed away this week after a two year fight with the monster.  So we visited, laughed, amused Ryan with stories of  our "adventures", caught up on the kids and families, shared a lunch and basked in a friendship that will never end.  I am so thankful the made the effort to take a day away from home and drive the 2 1/2 hours each way to make my day!

I am also overwhelmed by the support my Tulane Pi Kappa Alpha brothers and sisters have shown in putting together a reunion at this year's New Orleans Jazz Fest.  So far about a dozen college friends are coming from all over the country to share in one of my favorite events. What makes this special is my first real symptoms where I knew something was wrong occurred at last year's fest. I know the food and music will be amazing as usual, but having the love and support of Loady and his bride Kim, Donna Jo, Des, JB, Belushi and Jeff will make it easy to be back there. Again it's been quite awhile since I've seen most of them, but looking forward to picking up where we left off.

If things go as planned, next weekend will be spent at yet another friends house.  Paul is an amazing man of God who has been a mentor, teacher, visionary, encourager, partner and brother to me.  He literally changed my life! We are always amazed that since the day we met we have been so in sinc that he says we're twins from different mothers.  We've both faced some huge challenges the past six months, but that just shows we're still hooked up!  We'll see another set of friends while there, David and Anna, but once our kids marry each other in June, we'll be family! Hope we even get some time with Justin and Yvonne, although it's only been a year, I miss you guys terribly and am praying for your Dad big time.

So you can see how blessed my life has been! My very large loving family and all  these great friends, what could be better than that!  Now if anyone can find Cliff Ford and get us back in touch, that would bring a big smile to this face!

Thursday, February 10, 2011

The Struggle

Today I am engaged not only in a struggle with the most vicious of diseases, but also with the US Army for my son.  So let me tell you the story: First, we have three sons proudly serving in the military; we supported their decisions to join, attended graduations and homecomings, and sincerely believe that serving has benefited our boys.  Sean has already served two tours in Baghdad Iraq, Kyle is currently serving in Kandahar Afghanistan and just last week Nolan received news that he will deploy next January; our sons have not shied away from the duties they committed themselves to.
When I was diagnosed with ALS, the reality of the two - five year life expectancy deeply effected everyone in this amazing family I've been blessed with.  We spent Christmas Eve discussing advanced medical directives, end of life care, PEG tubes, tracheotomy and ventilators > good old family fun.  Sean is currently stationed in Hawaii with his unit set to deploy in March for at least a year. Knowing the future for me is uncertain, in November he applied for a compassionate relocation to Fort Polk, LA where he could be just a couple of hours away and able to come home on weekends to visit and help relieve Gina of some of the care taking duties. Again, Sean is not looking to get out of the Army, just close enough to support the family who has supported him.  The Army, specifically Capt Adam McCombs, first played the delay game, and did not even give Sean a reply until after January 1st.  At the time he was told that his request was denied because he "has other siblings who could help."  Sean has tried to get the decision revisited and maintained his professionalism while this matter weighs heavily on him; he recently completed a two week training to prepare for the impending deployment. We have contacted our Senators Landrieu and Vitter, and I have appealed directly to Capt McCombs but so far to no avail.  We are now seeking media attention to plead our case in the court of public opinion because we know the one thing the Army does not want is bad publicity.  If you can help, or know someone who can, please contact me!
While this is our specific struggle today, I believe it is just a small part of the much bigger problem which is the lack of awareness of ALS.  You see, I don't believe that Capt McCombs is a cold heartless bastard, I think that he has no clue what ALS is, what it does to a body and how devastating it is to a family.  For only a truly evil man could have a full understanding of this disease and fail to find compassion for one of his men.  To my friends out there in the ALS community who are working tirelessly and endlessly to bring awareness to the disease and the situations that face PALS everyday, I say thank you from the bottom of my heart. Your Walks, skydives, golf outings, soccer tournaments, concerts, dinners and dances, even tattoos are making a difference, we just have a long way to go.  To my friends and family who get tired of emails and facebook messages about ALS awareness and fund raising events, I know, but this is just too important not to exhaust every avenue, please help every time you can with donations big or small and spreading the word.  Just look at the progress made in the AIDS fight in the past 15 years, it's been 70 years since Lou Gehrig died and we've made almost no strides in treatments or cures.  If you can help our family with this current situation great, but everyone can spread awareness of ALS everyday, won't you join in helping all the PALS out there in the fight for their lives?

Saturday, February 5, 2011

Walking On Sunshine

OK, to all my northern friends (that is anyone who lives north of  I 10), I'm sure this will sound like a whine, but it's been too freakin' cold!  I live in south Louisiana because I was born with gills for the humidity, web feet for the water and a cast iron belly because I eat all that stuff that crawls around the bayous; I was not blessed with a fur coat for frigid temperatures.  While I realize that many parts of the country have had heavy snow and freezing temperatures for most of the past month, well, that's your problem, move if you don't like it.  Sorry, for that one I promise not to complain in August when we're 95 degrees and 95% humidity!

Because of ALS, which sucks, I now have limited mobility and that limits my opportunities to get out of the house.  Since no one is home with me during the week, I'm pretty much stuck inside in my chair or on the bed for range of motion exercises and the occasional nap time.  I'm not complaining about this, my days are actually pretty good with computer time, bible study, TV and reading.  I must admit though, I really do look forward to getting out of the house a few times a week for breakfast with Brigid, life group and Sunday church services.  With all of the freezing rain,dangerous road conditions(think Cajuns driving on ice) and cold temperatures this week, all of our regular activities were cancelled!  Even with Gina home Friday because her office was closed, getting me down icy stairs in freezing temperatures was a no go. You see, these days getting me out of the house requires first getting my sweatpants on, then the helper putting on my AFOs (Ankle Foot Orthodics) and tying my shoes then helping with my jacket.  Someone then has to open the side door and stand by while I use my cane and the handrail to maneuver down the four stairs and over to the Honda where my feet are lifted into the car and I get a wedgie as I'm helped into the front passenger seat.  It's really not so bad, I list the steps out to give you a glimpse into our "new normal", at least I can still help those who are helping me; but you can probably tell that going out was not very practical with the conditions.

Waking up early this morning to sunlight streaming through the blinds in the bedroom window instantly lifted my spirits. I was showered and ready to leave the house by 8am and Gina and I headed out. It was still cold, but the bright sunshine, cool crisp fresh air and a hot cup of coffee were all I needed.  It was just a few errands, a stop by her office and a quick visit with Brigid but there I was "walking on sunshine, oh oh, and don't it feel good!"

Tuesday, January 25, 2011

Where's My Wallet?

In my 15+ years working in the fast food business, I can ensure you I've seen some crazy things at the drive up window.  I can only imagine what the girl at Sonic was thinking this morning when a car with three people laughing hysterically pulled up to her window at 7:30 in the morning.
You see, what had happened was...I rode in to work with Gina and Ryan on my way to breakfast with Brigid.  They stopped at Sonic for breakfast, and for some reason wouldn't get me the new Red Velvet Cake Blast for a starter, something about too much sugar??  Anyway as we waited in line, Ryan pulled out some crisp clean ones to pay the bill (WG? friends can feel my pain) and G saw my reaction. That led to Ryan saying," He can use his own money." To which I replied, " I haven't even seen my wallet in like two years (slight exaggeration there for melodramatic effect)."  Ryan "well, what do YOU need a wallet for, you can't even pull up your own pants! and I'm pretty sure that's a qualification for having a wallet."  BAHAHAHA, that started the laughter...then "Let's see, what do you keep in a wallet? Business cards, you don't have a job so no wallet.  Driver's license, you don't drive so no wallet. Money, well no job, no money, no wallet. Condoms, oh hell, I don't even want to think about that."  It was at this point that the three crazy people reached the window, laughing uncontrollably with red faces and tears running down the cheeks. The cashier just smiled politely; I'd like to thing we made her day, at least we didn't just grunt "coffee" at her.
For the record, I can pull up my own pants...sometimes, most of the way.  ALS takes away some of my most basic functions and it's not fun to have to ask for help with things like getting up from the couch, buttoning a shirt or even getting my pants on correctly.  I miss the ability to chop seasonings for dinner, to pick up my granddaughter and hold her while she feeds the horses, or even to take the trash can out front, but I still have my ability to maintain that "quirky" sense of humor and to laugh at myself.  If it's true that "Laughter really is the best medicine", I think I may have overdosed this morning.  Thanks Ryan and Gina for not treating me any differently than before this disease entered our lives, ALS still sucks but I choose to laugh in the face of the monster.  

Wednesday, January 19, 2011

Looking Up

Everybody loves a good story, right? Whether a children's fairy tale, a classic novel, the year's best movie or sitting with friends and reminiscing, a good story reaches into our souls and grips our emotions. Joy, tears, laughter and passion can all be evoked from the great stories we hear.  Think about what emotions you felt as you heard the stories of Capt. Sully landing that plane, Hurricane Katrina's devastation or the recent shooting in Tuscon.  What we sometimes overlook, however, are the simple stories of our lives and the power they have to stir up those same emotions; to transport us to another time and place, and just maybe, to teach us a lesson we'll need one day. 

So this story is for my five amazing children - Ryan, Brigid, Sean, Kyle and Nolan - because your love for each other and family is the story of my life.  We moved to Jacksonville Florida in 1990 when the kids were all under ten years of age (yep, five under 10).  On a trip to the beach and down to St Augustine, we stopped for a group photo of the kids as they sat on and around an old cannon and the stack of cannon balls outside of Fort Mantanzas.   If you've ever tried to get a good shot of the kids while they were much more interested in something else, you know what was going on. So in an attempt to get the picture, Gina says "Hey, look up!"  Well our little ones promptly looked straight up, not at the camera, but into the sky and it was forever caught on film.  Not only did we laugh that day, but we now have a family tradition of the famous "Look Up" picture.  Just browse through our family photos, time after time you'll find a group shot of the kids looking up - birthdays, graduations, weddings - no occasion goes by without one.
                      Ryan, Kyle and Nolan at Kyle's boot camp graduation

Living with ALS brings its share of distractions, hardships and the temptation to get down in the dumps about life.  But, to you my family, I say this, no matter what ALS brings to my life, I'll always be looking up because that's who we are and that's what we do.   What's your story?


Wednesday, January 12, 2011

A Matter of Faith

As my new life returned to normal this week after all the wonderful holiday visits with the kids and Princess Hayden, head of Big Poppiland, I've settled into a routine that works well for now.  This means I spend a lot of quiet time alone during the day while my beautiful bride is at work, and during this time I've read blogs and books and have been formulating what I want to share this week.  Since Sunday, a day of mourning for Saints fans, I knew I wanted to discuss the commitments I mentioned last time; but how?

ALS takes a devastating physical toll as it reeks havoc on our bodies, it plays mind games using fear and depression, and it challenges even the most faithful in their beliefs. The questions come fast and furious : Why me?  What did I do wrong?  Doesn't God care about me?  How can a loving God allow so much hurt and pain in the world? Does God really exist? If so, why doesn't He do something?

Normally, I'd pull out a whole bunch of Bible quotes and scripture references in answer to these questions and they'd be good answers.  Last night, however, I was reminded that we overcome by the word of our testimonies and I knew that's what I needed to share here.  You see it's very easy for me to have faith in God and Jesus Christ because I KNOW Him; that's right KC and JC are tight!

I was raised in a church going family, my great uncle a priest and I was an altar boy; I knew a lot about religion, still know the prayers by heart and Gina and the kids and I went to church fairly regularly as a family. We were the picture of a good young couple - hard working Dad climbing the corporate ladder, devoted wife and stay at home Mom and five really cute  kids- sure we drank a little too much sometimes and I knew where the best "gentlemen's clubs" were but all in all we were doing OK.  Then through sheer selfish stupidity I almost blew it! A move across country and two miserable years later we were on the path to divorce and the end of this awesome family.  When a longtime(almost said old) friend invited us to dinner, we went and ended up hearing all about her awesome church, and while I thought who cares?, a few things did peak my curiosity.  A group of men who met at 6am each week for prayer and a football stadium of just men attending spiritual rallies led by former coach McCartney - that didn't sound like any church I'd ever been to. So we go to this church in Texas with a pastor from New Orleans, and the second week IT happens -yep, right there in the back row in front of everybody; He shows up, Jesus Christ walked into my life up close and personal!  It felt like I was being pressure washed from inside out and when He was finished I was changed forever.  That was almost 16 years ago and as I've gotten to know Him better, I'm amazed that He knows me so individually and intimately and He has earned my complete trust. When we get together each morning, we talk about anything I want and somehow those questions don't seem so important when I'm with Him.

So that's it, I am strong in my faith not because of the religion, but because I could never turn my back on my friend,  Jesus.  Whether you have heard about him or not, if YOU haven't met Him, I'd like to introduce you; it's easy, say this out loud, follow me:

Jesus, I want to know you for myself, I know that I have sinned and made a lot of mistakes, but I also know that You are the Son of God, His Lamb, who died on the cross to so I wouldn't have to.  Forgive me and come into my life, be my Lord and Savior and be my friend.

If this was your first time meeting Jesus, please leave a comment so that I can thank Him, welcome you to the family and join the party celebrating you in heaven today!

Thursday, January 6, 2011

Warrior for Life

"Today I consider myself the luckiest man on the face of this earth..." Lou Gehrig

Like Lou, I got a bad break when on September 28, 2010 my neurologist confirmed that I have ALS, also known as Lou Gehrig's Disease.  My hope is that in sharing my life with ALS, friends, family and others will be able to keep up with my health updates and maybe someone will learn something new or be encouraged or, dare I say, even be inspired. 

One of the things that I've learned already is that most people know very little about ALS (Amyotrophic Lateral Sclerosis), heck all I knew was that I didn't want to have it. Amytrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease, is a progressive and fatal neuromuscular disease marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement. Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without the support of a ventilator. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. See, now you know why I didn't want to have it and why ALSucks!

WOW! After recovering from the stunning reality that the diagnosis brings with it, I decided to commit to two things: 1) I would remain strong in my Christian faith; 2) I would retain my sense of humor.  Hopefully, you will experience both of these in the stories I share with you,but be warned, the aforementioned sense of humor can be a little "quirky", just ask my family. 

So about a year after what I now know were the first symptoms, and three months after diagnosis my life is already very different from what I ever dreamed it would be.  Physically, I am still able to walk with the use of a cane and AFOs(story for another day); I have no trouble with speaking and swallowing and breathing is still good. Strength in my right arm is minimal but I still have some use of it while adapting to doing a lot of tasks left handed. I made my first public appearance in a wheelchair to go Christmas shopping with my wife at the mall, and it wasn't so bad. I am now retired at age 50 since I can no longer perform my job duties to the standards I hold myself to.  Despite all of these changes, I am looking forward to living the rest of my life to the fullest and have a whole new perspective and set of priorities.   

Thank you to my friends and especially my family who are traveling this path with me, without your love and support I wouldn't be able to embrace the future God has planned for me.  Gina, I appreciate and love you so much, thanks for laughing instead of crying and thanks for your strength, you are the best.